A Skinny Girl's Rant

A new medicine for me

2012-01-07T21:58:00.000-08:00

Good news! I'm in remission again! One of the positives of having UC is that after a flare-up, once you feel better again, life just seems so wonderful! I am thankful to be feeling well every day!

I was asked in the comments about my monthly insurance rate going up after I switched plans. Can you believe that monthly rate didn't change at all with the new plan? Completely weird. The plan we were on originally was a high deductible plan ($4000 individual deductible), but everything was covered 100% after the deductible was met. Part of the plan involved a health savings account that his work deposited a small amount of money into each month. The plan we changed to had a lower individual deductible, $1500, but then only covered 80% of costs after the deductible was met and there was no HSA with the small (I think it was like $20) deposit from his work. What made the second plan so great for us was that it had a separate prescription deductible that was only $250 (and of course I met that right off). The monthly costs for the two plans were the same, so it was much better for us to go with the lower deductible plan.

After being on the Asacol for a month, I hadn't had any improvement in my symptoms. At all. I was discouraged, but still hopeful, because it had taken a while for me to feel better after all of my flare-ups. My doctor however was concerned that there wasn't any improvement though and decided to add an additional medication, Cortifoam. We hadn't tried this medicine before because of my insurance, but since I had now met my prescription deductible and only had to pay the co-pays, we felt fine going ahead with it.

Cortifoam is rectal foam, not an enema, I thought it sounded unpleasant, but it actually wasn't a big deal at all and was easy to take. I took it for just one week and by the next week I had a dramatic improvement. But, I'm the type of person that reads those inserts that come with your prescriptions. Cortifoam is a corticosteroid and so it had listed all the side-effects that you would expect from a steroid, I was worried about taking it long-term. When I met with my doctor again, I told him I was worried about the side-effects (I hadn't experienced any) and he said I shouldn't worry. He said since it is a rectal foam, less than 5% is actually absorbed into the body. He said it is more like applying a topical cream...only on the inside. And since so little is absorbed, the side-effects, if any, should be minimal. I've been on it for almost three months now with no ill effects. I think it took about one whole month of taking the Asacol with the Cortifoam before I felt completely better.

Now that I have been in remission for a good solid month and a half, I am working with my doctor to get off the Cortifoam by taking it every other day instead of every other day. Then, we are going to reduce my Asacol dosage. However, I'm not going completely off the medicine this time. I'm going to stay on a maintenance dose of Asacol to see if I can keep the flares-up at bay.

I hope you are all doing well! Happy new year!

Back to zero

2011-09-25T22:11:00.000-07:00

I was really hoping that I would make it a full two years symptom free, but alas it wasn't meant to be. Still, I had a pretty good run at it. Twenty-one months, most of them without medication, was pretty nice. However, I was really discouraged at becoming sick again. When the symptoms started back up, it happened gradually. I tried to get more sleep and cut-out stress...but I had a lot of stress that I couldn't get rid of. I'm not sure it would have made a difference anyway.

Once I was sure it was a full-blown flare-up (no pun intended), I immediately called my GI doctor. Unfortunately, they were booked with no appointments available for a couple months. I scheduled an appointment, but by that point I was desperate for help and begged the nurse to have the doctor call a prescription in for me. The doctor was out on vacation for a week and the nurse said she couldn't call in a prescription without his authorization since I hadn't been in in over 18 months. I must have sounded pretty miserable because she thankfully took pity on me and called him on his cell phone. My doctor and his nurses are pretty great. He called in a prescription for Asacol and I called my husband and asked him to pick it up.

My husband called shortly after that and said that he had just left the pharmacy. I could tell from his voice something was wrong and I asked if he got the prescription. He said no because it would cost $275 for a two week supply. And we have insurance! We tried to see if there was anything else the pharmacy could give us, like a generic drug, and they said there wasn't a generic and we should check with the doctor for something cheaper. Since the doc was out, and I was miserable and wanting to start the medicine as soon as possible we went ahead and bought it.

But, I was really stressed out. $550 a month is a huge amount for us. This was on a Friday and I worried about money all weekend long. Needless to say, by the next week I was even more sick! When the doctor was back in, I called the nurse and told her we needed to find a cheaper medicine. Things were complicated by the fact that I haven't finished weaning my baby, so we had to check to make sure the different medicines were okay to take while I was nursing. I spent over three hours calling the GI office, the pediatrician, my insurance company, and the pharmacy. We finally found one medicine (sorry I can't remember the name) that would only cost me $50 a month and the pediatrician said it would be okay for me to take while nursing (even though the pharmacy said it wasn't...). But, I looked up the medicine online and read about the side-effects and it sounded horrible. Everything from calcium depletion to lowering your white blood cell count. My mother is on Arimidex for breast cancer and the side effects are similar and it makes her miserable. I was so discouraged, but I didn't know what else we could do. I had to have medicine and there was no way we could afford the $550 a month.

My sister suggested I call my insurance company and see if they would let us change insurance plans that is offered at my husband's work to one of their different one they offer that would cover the medicine. I didn't really think there was any chance they would let us, but I called and asked anyhow. The insurance company said it was up to our provider (my husband's work) to decide if we could change. We were past open enrollment, so I didn't really hold any hope that we could change, but I decided it wouldn't hurt to try. So, I called and wonders of wonders, HR said they could try and work it out! They said we would still have to pay for the prescription we already got, but they would make an exception and let us change plans! Forty-eight hours later and we were on a new insurance plan. When I went to go get my next two weeks of medicine, it only cost me $25! It felt like a miracle. I had been so stressed about the money that once we got the news, the depression I was in over being sick completely went away. I'm still sick, but mentally I am happy and optimistic and I am hopeful that I will be back to normal within a couple months. I have my doctors appointment in a couple weeks and we'll see what he thinks.

In other news, blog reader Andy asked me to share a website that those of us with UC to possibly help each other out. I'm not at all affiliated with the website, and don't know much about it. However, I am interested in the items the website is looking at. This is what Andy wrote:

Basically the theory is lots of people sign up for the site and rate the various treatments they have had for Colitis, what they think triggered their colitis, and they can track various metrics such as hours sleep, exercise, etc and the site is partnered with several universities with which it shares the information.

The reason I am writing, is that once they have 1000 patients rate the various treatments, they publish the results, which they have done for Crohns:

http://curetogether.com/blog/2011/09/20/crohns-study-results-29-treatments-rated-by-patients/

I would really like to raise awareness among the UCUC section is below:

http://curetogether.com/ulcerative-colitis/treatments/

Still Kicking

2011-07-10T21:55:00.000-07:00

See that girl? That's me. Running on a giant water slide. This was at the beginning of June. It was a 5k mud run/obstacle course. 5 kilometers might not seem like a big deal to some people, but it was to me. For one thing, I'm not much of a runner. And for another thing, just a couple years ago I could barely walk around my neighborhood block.

In January, I was feeling great. Better than I had in years. More energy too. At that point, I had been in remission from my UC around 14 months. I had been making changes in my life to improve my health even more. I guess once you have been sick, you value health a little bit more. I had been eating better--more fruits and veggies and beans, less junk food. I had also bought a treadmill at a yard sale. Then, one day, a friend on Facebook had posted that she was going to be running this race in June. I thought it looked like fun and I thought, "Why not?" My ulcerative colitis had kept me from doing things for a long time, but it didn't need to continue to keep me from doing things. I enlisted my sisters and my husband and we signed up.

I started training for the race using the Couch to 5k running plan, which was perfect for me. One day while training together, my sister and I went for a run. It was on a trail that two years previous my sister had tried to get me to walk on. The path was one mile long, so two miles total. Back then, I hadn't even reached the 1/2 mile mark before I was in too much pain and to exhausted to continue. My sister had to help me walk back to our car. When we did the trail for our training, I was able to run the whole distance twice and I felt great. I almost cried realizing I had come full circle. UC no longer controls me.

I finished the race June 4th and though I didn't finish in any competitive placing, it was a huge accomplishment for me. On June 30th, I celebrated another milestone: exactly one year without any medication for my UC.

I didn't really think that it was possible to go without medication for so long and to feel so good. I know that a flare-up could happen again...but maybe it won't. I'm continuing to exercise and pay more attention to my body, making sure I get the proper foods and rest that I need. I also do journaling now and regular stress reduction techniques. I don't know if these things are helping my UC or not, but they are helping me in my life anyway so I will continue to do them.

To those of you who may be reading my blog and struggling with UC, don't give up hope! I was so sick but now I am better. And, there is new research being done on UC and new discoveries being made. I recently participated in a research study (maybe I will post about that later). My best wishes for you!

What To Do About Ulcerative Colitis Pain

2011-03-08T21:18:00.000-08:00

Hi everyone! You can probably tell from my lack of posts that I have been feeling pretty well lately. Still in remission! (Yeah!) I'm still not taking any medications and I am really hoping to make it one year symptom and medication free, so that will be in July...it's getting closer.

I thought I would write today and share some of the things I would do during flare-ups to help with the abdominal/stomach pain. Pain hurts.If you have other things you do that help, please share them in the comments!

When I wasn't in the bathroom, but was having cramping from the colitis, I would do a yoga move called child's pose. You can do it with your hands straight in front of you, or behind you like in this picture. I would just stay in that position for as long as I was in pain and it seemed to help.

When I was in the bathroom, sitting on the toilet, I had a stool that I used. It was just a children's stool (about a foot high), and I would place my feet on it. This elevated my knees and made...business...easier and less painful. I actually learned this trick from a nurse that recommended doing this after having my first baby.
Heat always helped me with the pain. Around here, we have these bags you can microwave, we call them "Rice Buddies". Anyway, I would heat one up and rest it on my lower stomach. This was probably the most effective thing I did do to help my pain. You can find instructions on making your own rice buddy here. Or this site has some really simple instructions on making one from a sock! But, really any heating instrument -- a pad, a hot water bottle--anything that applies heat would work.
This might sound weird after my last suggestion, but don't let yourself get too hot. My pain was always intensified when I was overheated. If you are out in the sun when you are having pain, get inside or get in the shade. Try to stay cool! Your body can't cope with pain as well if it is also trying to cool itself down.
Breathe deeply and listen to relaxing music. Try to relax as much as possible to let the cramping relax.
Sometimes sipping water can help.
In addition to the child's pose, sometimes I would lie on my back with my knees up and my legs in and then just rock from the hips from side to side.

So, those are my suggestions. These are all things that helped me. They didn't always work, but a lot of times they helped and while they may not have gotten rid of the pain completely, they did ease the pain. Again, if you have other ways of dealing with the colitis pain, please let me know in the comments!

Adjusting Expectations

2011-01-16T14:06:00.000-08:00

When I was writing my post last week I was thinking about expectations. My expectations of a situation largely determine my attitude about it's outcome.

Let me give you an example from when I worked in the financial industry. The business I worked for would hire mystery shoppers. If those shoppers gave you excellent reviews, you could earn a cash bonus. There was a service that my company provided that I was particularly talented at. I had streamlined my process for this service so that it was not only done well, but very efficiently and I also negotiated with our vendors to do their part quickly. This service usually took about 2 weeks on average to be completed, but I could complete it in a couple days, sometimes even the same day. So, I was surprised when, month after month, my reviews came back as good, but not excellent. And I would receive no bonus.

On one of the bonus days, my co-worker caught me watching him count his bonus cash. He came over to me and said, "You know why you aren't getting the bonus, right?" I shook my head. "You are setting their expectations too high. You tell them that the work will be done in a day or two. Then, when you finish in a day or two, they are satisfied, but not impressed. And if it takes you three days, you and I both know that is still really great, but they feel irritated it took so long because you set the expectation for it to be done sooner. Next time tell them that the industry standard for completion is two weeks and don't promise anything quicker. That way, if you get it done sooner, they will be super impressed."

I was skeptical, but I tried it and my reviews sky-rocketed. I never missed a bonus again. The reason I mention this story is because I feel that my reaction to my UC could have been different if my expectations were different.

For example, Ulcerative Colitis wouldn't seem like such a big deal if everyone in the world had UC. It would just be expected--part of life. You wouldn't think your body was revolting against you or that you were cursed. It would just be the way things were, expected. Of course, life would probably be quite different if everyone had UC. There would be a bathroom on every corner!

The times I was the most frustrated and upset with my Ulcerative Colitis was when I wanted to accomplish something and wasn't able to because I was too sick. I wish I could have told myself to adjust my expectations. To not expect to be able to do everything I could when I wasn't sick. To cut myself a break and allow myself to take it easy. To be patient and to not expect so much. If I had lowered my expectations, I don't think I would have had so many disappointments.

With lower expectations for life, I think it would have been easier to be satisfied with the things I was able to do. And, if I was able to do more, even if it wasn't like "normal", I would still be exceeding expectations and that would be a reason to celebrate.

So, my suggestion for those of you with UC is to LOWER YOUR EXPECTATIONS. If you are sick, cut yourself a break. Be patient and easy on yourself.

But,

BUT,

Don't you ever quit. Don't you give up. Don't you stop dreaming. This moment is just that, a moment. What happens in one day does not determine who or what you will be. Dream big.

And on the days when you need a little help, listen to this song.
(Song starts at 27 seconds)

Dream Big

by Ryan Shupe and the Rubber Band.
When you cry be sure to dry your eyes
'Cause better days are sure to come
And when you smile be sure to smile wide
Don't let them know that they have won
And when you walk, walk with pride
Don't show the hurt inside
Because the pain will soon be gone

And when you dream, dream big
As big as the ocean blue
'Cause when you dream it might come true
When you dream, dream big

When you laugh be sure to laugh out loud
'Cause it will carry all your cares away
And when you see, see the beauty all around and in yourself
And it'll help you feel okay
And when you pray, pray for strength
To help you carry on
When the troubles come your way

And when you dream, dream big
As big as the ocean blue
'Cause when you dream it might come true
When you dream, dream big

When you laugh be sure to laugh out loud
'Cause it will carry all your cares away
And when you see, see the beauty all around and in yourself
And it'll help you feel okay
And when you pray, pray for strength
To help you carry on
When the troubles come your way

And when you dream, dream big
As big as the ocean blue
'Cause when you dream it might come true
When you dream, dream big

Today is a gift; that's why it is called the present

2011-01-09T14:44:00.000-08:00

My apologies for not posting. Lately, if I ever get a spare moment, I try to catch up on some sleep. With a new baby, that's important! Thank you so, so, so much to those you have made comments on my blog. I do read them, and you buoy me up.

I am still in remission. As I said in my last post, this is the longest I have ever been in remission. So truly, every day is a gift. I am also not taking any of my medications still. At first, I was just going to take a break during my baby's first few months of life when he would be at greatest risk from an allergy to the medication. But, now it has been six months and I haven't had any UC symptoms, I think I will just stay off unless/until I need to get back on. I have a full prescription sitting in my cupboard just in case.

I've been wondering what it is, if anything, that has allowed me to be in remission this long. There seems to be so much mystery and so much individuality with this illness that it is hard to determine what is going on with it. I can say that I am living my life differently than I was in the past. Before, I had a serious sweet-tooth and I indulged in the sweets regularly. I didn't exercise regularly. And I guess you can say that in general I didn't make the best health choices. I wasn't horrible, but there was definately room for improvement.

Now, I eat a lot better. I still have my sweets, but in moderation. I exercise at least 3 times a week for 30 minutes, sometimes more. For my birthday, my family and friends all pitched in and bought me this incredible Blendtec Blender. It is so powerful that it is super easy to make smoothies. So I make a fruit smoothie every other day and have even started including spinach to make it a little more healthy.

But if I were to say the main health changes I have made that may have helped my UC, I would say it is from working to minimize stress, listening to my body, and getting enough sleep. I have really, really worked on those things. I try to keep things in perspective more and don't let myself get worked up over insignificant things (easier said than done, I know). I have always been a night-owl that hates going to bed, but I have learned that not getting enough sleep really stresses the body and stress and UC...well, we know how that goes. I have begun to be able to tell when I have pushed things to far. If I start feeling tired, or the signs of a small cold, or a stomache, I take it easy now. I give myself a chance to rest and recover, instead of just pushing through it. It's hard to do that sometimes, but I just remind myself that doing too much could trigger a flare-up (maybe) and that taking a little bit of downtown now would be better than the months of recovery if I flare.

Obviously, I'm not a doctor. And I don't know why I've been feeling so great lately. But, certainly efforts towards being healthy couldn't hurt!

I have more to write, but the baby's awake and this post is getting long, so hopefully I'll get a chance to write again soon. Best wishes to you all!

An Anniversary

2010-11-18T21:39:00.000-08:00

I've been in remission for one year. It's hard to say exactly when the anniversary is because how can you tell when you are in remission for sure. But I know it was before Thanksgiving last year that I last had any UC symptoms.

This is the longest I have EVER gone without a flare-up since my first one approximately eight years ago.

I feel like I am holding my breath waiting for it to come back.

I haven't been on any medications since July. I hope that I will be able to celebrate being symptom and medication free for a whole year this summer.

Time is a funny thing. The same amount of time can seem interminably long or insanely short. Seconds pass by without any realization all the time, but can crawl by in serious situations. It is almost like time cannot be measured by any type of units, only by our experiences.

So. I have a year. It seems like such a long time ago since I was sick, and yet, not long enough to forget. Every single day, I pray and thank God that I am healthy and feeling well. Every single day.

Every Thanksgiving my family goes around the table and we each say one thing we are thankful for. A couple years ago, I was thankful for my medication that was helping my symptoms to ease.

Next week, I'll tell them I'm thankful for a year. A whole year in which I celebrated every holiday, every birthday, every wonderful regular moment pain free. And even if tomorrow I am sick again, I'll still have this year to remember.

This is a year to be thankful for indeed.

Happy Thanksgiving! May you all find your reasons to be grateful!

A Real Cause?

2010-10-13T10:02:00.000-07:00

I don't watch very much television, but I have still seen many commercials like the one below.

When I went to YouTube to find one of these commercials to post here, I found dozens of similar commercials for the class action lawsuit against Accutane. All of these commercials clearly state that Accutane causes Ulcerative Colitis and Chrohn's Disease. Accutane has been recalled.

I never took Accutane (it's a medicine to treat severe acne). But I still find this very interesting because it is the first time I have ever heard anyone state a cause for Ulcerative Colitis. It's always just been a world of unknowns. Now I realize these commercials are lawyers saying that it is the cause, and not doctors, but I suspect that they must have a significant amount of evidence if they are going to take on the pharmaceutical company.

It just makes me wonder--was there a prescription I took that caused my UC?

Here's another one:

Better than a hole in the ground

2010-09-19T18:07:00.000-07:00

I'm still around. Still in remission too. I've been reading blogs still, but haven't commented or written much because I usually have the baby in my arms and can't type. In fact I'm writing this now with one finger and it is frustratingly slow. My 3 year old starts preschool soon so I may get more time for my blog in a couple weeks.

Earlier this month, my father-in-law had his retina detach. I didn't know that could even happen. He underwent surgery and in just a few hours it was corrected, although the recovery time will be a few months.

This reminded me of my grandfather. He had an eye lens transplant last year to correct cataracts.

Isn't this an amazing age we live in? I am astounded that things so sensitive and delicate like an eye can be helped by modern medicine.

I thank God that I live in this time. Can you imagine having Ulcerative Colitis before there were toilets? Certainly, toilets are better than a hole in the ground.

I not only have the luxury of flushing toilets, but also medicine that helps me keep my UC under control.

And colonoscopies! Not that I am a big fan of those, but I am thankful they are around. I'm really grateful they were able to diagnose me, so that I wasn't just some crazy person with diarrhea.

If you want to know about some other advances related to UC, check out the free webinar that the Crohn's and Colitis Foundation of America is doing on October 6th by going here.

He's Here!

2010-07-27T16:26:00.001-07:00

Baby D.

6/30/2010

19 inches

6 pounds 2 ounces

I haven't been online lately because I had my baby. I am exhausted, but doing well, still in remission. In fact, I am doing so much better with my recovery this time than I did with my first son and I believe the difference is because I was in a flare-up then and I am in remission this time.

After going through labor again, I still think that the pain I felt with my Ulcerative Colitis is worse than labor. Of course, I did get an epidural towards the end. Hmmm... do you think an epidural could be used for bad flare-ups?

In other UC news, I have stopped all of my medication. Thank you to everyone who weighed in with advice about continuing the medication while breastfeeding. For those of you who don't know, I have received conflicting advice from my doctors about whether it is safe to be on the medication while breastfeeding. Ultimately, since I was doing so well in remission anyway to just go ahead and stop and then if I start getting sick again, I could start up again. And hopefully if that happens, it will be after my baby is quite a bit older and the risk of allergic reaction is lower. I was on the medication when I breastfed my older son and he had no problems.

This isn't the first time I have stopped the medication. The last time I stopped, I went 11 blissful months with no symptoms. I am hoping to go even longer this time. I wonder if it might actually be beneficial to take a break from the medicine. I'm not a doctor or a scientist, but I wonder if it could make it so I don't build up an immunity to the medicine. I know with some UC cases, after a while the medicine just becomes ineffective. I don't know...what do you think?

Working with Ulcerative Colitis

2010-06-14T08:37:00.001-07:00

I've quit my job.

It's an attempt to minimize the stress in my life.

My husband and I thought taking care of a toddler and a newborn would be enough for me to handle without workplace pressures. We're trying to keep my stress low to avoid a flare-up.

So I quit. Problem is now our finances are a lot tighter...which ironically is stressful. I'm trying not to think about it.

So instead, here are some memories of what it was like working during a period of time (we're talking several years) when I had a flare-up.

It would be nice to think if you were not feeling well that you could just call in sick. But when you don't feel well pretty much every day, sometimes you just have to go to work. My co-workers all knew I was sick, pretty much anyone that ever used the bathroom at my work knew I was sick. But my customers didn't.

In my job, I had my own office where I would meet with my customers. Unfortunately, sometimes I would really, really have to use the bathroom while I was meeting with them. I always gave them some excuse for why I had to leave. I would smile and say, "Oh, I need to go make some copies, please excuse me a moment." And then when I was two feet out the door, my smile would disappear and I would make a dash for the bathroom.

Sometimes when I got back, I would immediately feel that special feeling that tells you you just aren't quite done yet. "Whoops! I think I left one of the pages in the copy machine, I'll be right back!" Another sprint down the hall.

And if, later during our meeting, another urgent feeling would strike then, "My pen seems to be dying. I'm so sorry. Let me just run to our supply room." (This once back-fired on me when one of my clients once whipped out a pen. "Hee, hee...Gee, thanks...Did I say I needed a pen? I meant a...pencil..." If anything my Ulcerative Colitis kept my mental faculties sharp.)

Were my customers on to me? I don't know. How long does it take to make photo copies? (Especially long since not only did I have to use the bathroom but then I also had to make said photo copies). If anyone suspected anything, they kindly didn't say so.

I really don't like lying.

But I wonder how many of my clients would have preferred hearing, "I've got the runs. I know I just barely used the bathroom, but I've got to go again and if I don't go right now, you'll probably see it running down my legs in just a few seconds."

Later, my office was moved to a floor without a bathroom. How convenient. Using the bathroom, which I did probably 20 times a day, then involved running down a flight of stairs. Or should I say jumping down a flight of stairs.

Now that I've quit, I'm going to have to come up with a new exercise regiment.

Ignorance is not bliss

2010-05-13T20:23:00.001-07:00

This past weekend my family and some of my extended family all drove a few hours away to go to the big zoo in our state. Now that I am just 8 weeks from my due date and getting quite big, I waddle everywhere. Even though I still have two months to go, I have already passed the size I was when my first son was born. I think the difference is I am not in a flare this time. I definately have a lot more energy this time around even though I am busy keeping up with a toddler.

The zoo trip was a lot of fun. By the end of the day, I was pretty stiff from having walked so much with the extra weight, but it hadn't effected the trip at all.

Being there brought back memories from my last trip to that zoo. It was several years ago in the B.C. period (before children).

That trip it was just my husband and I, escaping for the weekend for some couple time. It was miserable. I was miserable. I remember being at the zoo and visiting the bathroom more than the exhibits. I could only walk short distances before I would have to curl up with intense cramping. I would sit on the ground and wait for the pain to subside before going on. We didn't dare venture too far past the public restrooms. And even when we did go to look at things, I had so little energy my husband had to pull me along the walks. What was supposed to be a romantic weekend was. . . not. We took a few pictures on the trips and the forced smile on my face says everything. It was horrible. Thank goodness for a wonderful husband that has endured so much and still stayed by my side.

I will never be at the place mentally or physically again though. It doesn't matter if my UC flares up again, I will NEVER be in the place I was then because I have something I didn't have then--a diagnosis.

I was actually on medication when we went to the zoo all those years back. I was on sedatives. After seeing multiple doctors, they all had said that intense anxiety was the cause of my "stomache ailments". But, I never felt any better. No matter how many sedatives I took or how many hours I spent relaxing/meditating, trying to clear my life of stress, I never felt better. It wasn't until years later when I had my first colonoscopy (something I had unfortunately purposely avoided previously), was told I had UC, and received the proper medication that I felt better. And boy, did I ever feel better! It wan't over night, in fact it was months before I felt normal again (it has taken that long for each subsequent flare as well), but I could tell things were improving after just a few weeks.

But now I have knowledge. I know what it is that is wrong and what my options are to treat it. Knowledge really is power. So even if I have another bad flare up (still in remission!), it will never be as bad as it was then because I know now what is wrong. And I know I'm not crazy.

And in the words of G.I. Joe, "Now you know, and knowing is half the battle."

Genetically, You're Screwed

2010-04-04T21:01:00.001-07:00

Genetically, you're screwed.

That's what a distant relative said to me the day my father returned from the hospital after having two stints surgically put in following a heart attack.

The relative, of course, was referring to my genetic health history (at least I hope so, otherwise, that's quite rude!).

There are some health issues that run in my family. My father has heart disease and has already suffered a heart attack. A few months prior, his brother, who is in his late forties, also had a heart attack. My grandfather died from heart disease.

My mother is in remission from breast cancer. She's had a mastectomy. I have three aunts that have also had breast cancer. My mother was told by her doctor that the cancer she has was not caused by lifestyle or diet, but by genetic predisposition.

High blood pressure and diabetes also run in my family.

So, yeah... Outlook not looking really rosy.

Then, for me, there's the UC twist. Forget that I have a disease that may or may not have genetic involvement but when I got my diagnosis, I was also told "There is a significantly increased risk of colorectal cancer in patients with ulcerative colitis." And while I am not sure if these numbers are accurate my gastro. doc. said my risk is 10% above the general population for colon cancer and increases by 1% each year I have UC.

That's great.

So when one is "genetically screwed", what are they to do?

Here's what I think my options are:

1. Eat, drink, and be merry, for tomorrow we die! This approach is basically assume that my future is bleak and so I might as well make the most of my life now. Today is all about having fun and worrying about the consequences later. Eat what you want, when you want it. Take the big risks now. Forget about the check-ups, have to squeeze in the living while you can.

2. Fight for your right to party. This approach is to take things in stride. Sure, we can live a little but there's also going to have to be sacrifices. You want to enjoy that hot dog? That's fine, but you better make up for it by eating your veggies and going on a bike ride. This option takes into consideration my potential health risks, but let's me do the things I want to as long as I am making efforts (through diet and exercise) to minimize my risks. I want to be around for a long time, but I want to be happy and enjoying life while I have it.

3. Ignorance is bliss. This approach is to basically plug my ears and go "Na-na-na-na" whenever someone talks about my family's health history. It ignores my family's health history and basically says to make no changes to my lifestyle. Live life as I would if I didn't know I had an increased risk for illness.

4. Be institutionalized. This approach gives in to the hysteria that basically I am doomed. I spend all my time worrying about the future and obsessing over little health hiccups, convincing myself it is the beginning of the end. Ultimately, this option ends with a peaceful rest at a mental institution.

5. Convert to "wholeness". This approach treats life style as a religion. What I eat, how much I exercise is strict and studied. Most of my time will be spent making sure I consume only the healthiest things and exercising. Good-bye sugar, fat and nitrates. Green smoothies become like the holy grail. Strict rule-following is mandatory.

What option did I pick for myself? I picked number 2. I have the great advantage of knowing there is a bit more risk to my health, but I also know there are no guarantees. My mother was told there was nothing she could have done to prevent her breast cancer. I could obsess and worry about it, but it won't guarantee anything. A good diet and exercise are the only things shown to reduce the risk of cancer and heart disease, but even then there's no guarantee. On the flip side, people who do everything wrong and have a genetic disposition for a disease still may not end up with it.

I'm going to make careful and balanced choices. For some people, going the whole foods route is a perfect match for them. It's not for me. At least not right now. I'm trying to exercise regularly and include more fruits and vegetables in my diet. I'm also making great efforts on how I handle my stress. But if I am at a summer barbecue and they are serving hot dogs, (they have nitrates which have been linked inconclusively to colon cancer), I'm going to eat one. I'm not going to deprive myself of things I would like.

Why? Because I don't just want to live, I want to live now.

But all the colors are brown...

2010-03-09T13:16:00.000-08:00

Every now and then, I come across a product that I think U.C. sufferers might appreciate a little more than others. This product gave me a laugh!

"Every evening I turn my worries over to God. He's going to be up all night anyway."

2010-03-01T21:40:00.001-08:00

I haven't posted for a while because I've been...stressed. Really stressed. I've got problems at work, with finances, in my family, with friends, in my personal life...and I've been worrying a lot about a lot of other things too. The fact that I'm stressed and worried about things also worries me because I'm terrified it will trigger another flare.

I'm kind of good at worrying. It's a talent. I can see scenarios (negative ones) that others just couldn't fathom. It's not just recently either. My mom tells me that even in grade school I was always worried about something and would always have this scrunched up little face. It's part of my personality.

But, I've spent too many days with my life filled with worry. It's sucking the joy out of the rich blessings I have. So, I've been reading a book by Stephen R. Covey called How to Stop Worrying, and Start Living. I haven't finished it yet, but I've really enjoyed it so far.

He suggests some exercises to cope with worrying and I've been trying them and I do think they are helping, but I am going to need practice! Here is my own variation of some of his steps to take when you are worried.

1. Write down what you specifically are worried about. This might seem unnecessary, but I discovered that once I wrote it down, it seemed more manageable.

2. Ask yourself, "What is the worst thing that could happen." Then, write down if that happened what the result would be.

3. Come to terms with the "worst thing" happening. How would your life change? What would happen? Write your answers down. A lot of things I was worrying about relate to my family's finances. When I asked what was the worst that could happen, I thought of our house being foreclosed on and having to declare bankruptcy. If that happened, we would probably rent a townhouse. The rent for even a really nice townhouse around here would be less than our house payment. When I thought about this, I discovered even though it wasn't the ideal, it would be alright. And if that happened, I would feel a lot more relaxed because more of our monthly income would be freed up for other things. (So, what was the point of worrying?)

4. (I added this step myself) Ask yourself, "What is the best thing that could happen." So many times I focus on the negative things, but it is just as likely that something good will happen as something bad. It can't hurt to be positive! Write your answers down.

Just those four steps sure have helped already. And so far, I haven't had any hint of any bowel issues. Since stress seems to be a trigger for a lot of us, I challenge you to try these steps for something you are worrying about and see if it helps you.

In other news:

We are having another boy!

Yeah! We are really excited, although I was certain I was having a girl this time. My husband says I jinxed myself.

Also, I am only taking Asacol right now and just found out you can't take that while breastfeeding. I'm torn. I really believe that breastfeeding is super important, but all of the doctors are saying to stay on the medicine and just bottle feed. This is one of the multiple things I have been stressing about. I am actually leaning towards ignoring the doctor's advice and getting completely off medications. A sacrifice for my child. Scary. If my UC flared and got bad enough, I would probably have to stop breastfeeding and get back on the meds. I'm hoping that if I can relax and reduce my worries and watch what I eat that I will be okay. Hard to do with a new infant. Still have about 4 months before the decision has to be made.

In closing, this song was running through my head the whole time I was writing this post probably because of the line about worrying being like trying to solve an algebra problem by chewing bubble gum. Remember to wear sunscreen.

If wishes were fishes, we'd all have a fry.

2010-01-23T15:04:00.000-08:00

The other day while I was playing cars with my son, my mind started wandering. Something it often does when we play cars since we only play that about a million times a day.

And a question came to my mind.

If you could wish for something that would change your life, what would you wish for?

And I thought, "Easy. I'd wish I didn't have Ulcerative Colitis."

And a moment passed.

And then I started wondering if that is what I'd really wish for. After all, I am in remission right now. Right now, besides the 10 pills I take each day, the illness has little impact on my life and as I wrote in my last post I don't really remember the pain.

Now if you had asked me during some of those flares what I would have wished for, no doubt I would have said to get rid of the UC. But now having had the experience that it is a problem that can be managed and dealt with, would I really waste a wish on it? I know that my experience is not the same as others with the illness and that for many their UC is a million times worse. My heart goes out to them since I have only had a taste of the pain and misery they experience.

But for me, I wondered if having UC was really all that bad. I mean if you HAD to have an illness, was it so bad? I don't know. I know that I at least have full use of my mind and I most likely am not going to die from it. There are periods of pain and seclusion, but also moments of real life. Sure, it's an embarrassing illness, but it keeps me humble, right? For all I know, if I didn't have UC my head would be so big I'd be floating.

So if I didn't wish away the UC, what would I wish for? Well, I'd wish to be happy or healthy. But those things are relative. I mean you could argue that I already am happy and healthy, even during flare ups.

Then, I'd wish my mother didn't have breast cancer and didn't have to have a masectomy. But then again, she's had such personal growth and has gained such wisdom from that experience. Would I deprive her of that for my own selfishness? I'd wish my father didn't have heart disease and hadn't had a heart attack. But since his heart attack he has cut back on work, spent more time with family, started eating better and exercising. If it wasn't for the heart attack, would these positive changes have happened?

I'd wish to be financially secure or for my house to be paid off. But honestly, if my house was paid off, I'd probably just go get a bigger house and as for the financial security--I can pay my bills, I have enough to eat and a safe home--isn't that financial security?

I'd wish my grandfather hadn't died. But, my grandmother remarried a wonderful man, whom she loves. I'm not willing to say one marriage was better than the other.

I could wish for world peace, but what does that even mean? Do I want to live in a world where there are no struggles? If anything I have learned that we are made better in the refiners fire. Our trials can lead to our greatest strengths.

Would I risk wishing something away, thinking I'd be better without, when in reality it could have been my greatest blessing? A lost job could lead to a better job. A broken relationship could open the doors for a soul mate. Things are not always as they appear.

And then suddenly, my thoughts were interrupted because my son apparently noticed I wasn't moving my matchbox car.

So my final thought is that wishes are hard stuff...best left for the professionals in fairy tales. I don't need any wishes, my life is perfect just the way it is. Especially with it's imperfections.

Life is pain, Highness. Anyone who says differently is selling something.-- Princess Bride

2010-01-13T18:56:00.001-08:00

Physical pain is a funny thing. Unlike emotional pain, it's hard to hold on to. Once the pain stops it is hard to recreate...to remember. I'm in remission now, and thinking of the pain associated with my UC I wonder if it was ever really that bad. I feel great now and I can't feel the pain.

I remember when I was in a really bad flare up, before I was even diagnosed with UC, that I actually said to my husband that I wished I could die. I wasn't suicidal, but I do remember thinking I couldn't go on feeling that much pain. I remember saying that... I remember where the pain was and generally how it felt... But I don't remember the pain. Not like the pain I felt when I found out my father had a heart attack or that my mother had breast cancer or when a friend made a particularly cutting remark. Those pains I can summon back and feel it almost as intensely as the moments in which they first happened.

But not the physical pain...

It's like when I gave birth to my son. A few hours after the delivery someone asked me if there was anything I would have done differently and I said, "Get the epidural sooner." I remember I was in a lot of pain but again, now that some time has passed, I don't remember THE pain. (Someone said that was Mother Nature's way of making sure the Earth stayed populated.) :)

I don't know why this is. I guess I don't really care. It's a blessing, right? Then again, maybe I'm just a weirdo with some psychological defect and everyone else can remember the pain.

More thoughts on this in my next post.

My UC in 2009

2009-12-30T21:09:00.001-08:00

This has nothing to do with UC :)

2009-12-18T22:06:00.003-08:00

They say humor is the best medicine so for all my fellow UC sufferers please enjoy this real-life comedy moment that made me laugh out loud (click on the image to enlarge it):

Medication?

2009-12-18T21:32:00.000-08:00

Over a month and no new posts from me. Wish I could say I was off doing something fabulous, but I wasn't. I've been miserably sick. First with morning sickness, then I think I got the actual stomache flu, then a sinus infection. To top it off I got two large fever blisters on my lips. No only was I feeling marvelous but I looked oh so lovely... The good news is that my UC was NOT acting up. I honestly believe it was because of God's tender mercy because I don't think I could have psychologically handled having to deal with UC and the other stuff at the same time. But then again I've been surprised by what I've survived.

The absolute good news from all of this is the morning sickness has eased, I'm over the flu and sinus infection and the fever blisters are gone AND... I am optimistically thinking that I am finally in remission! Best Christmas gift ever!

The last time I was in remission it lasted eleven months...but I had gone completely off all of my medications. This time my GI doctor wants me to stay on the Asacol three pills a day, three times a day. That's a lot of pills.

And things are complicated because I'm pregnant now. If Asacol was completely known to be safe during pregnancy it would be classified as Category A. It is classified as Category B. I talked to my GI doctor, he said he thought it would be better for me to take the Asacol to keep my health up and there are not any known risks from that medication.

I talked to the pharmacist. He said that he felt completely comfortable telling me to take it while pregnant. He said he has known several women that have taken it while pregnant with no ill effects and that Category B means there are no adequate and well-controlled studies in pregnant women. He said this is mostly because the drug companies don't feel it is ethical to do drug studies on pregnant women and not necessarily because the drug is unsafe.

Then I tried to call my obstetrician. I couldn't reach her over phone, I'd have to wait for my first appointment, but I did talk to her nurse who looked it up in a book and said it was fine to take.

I was at that point unsure what to do... This is a personal decision and each individual facing this circumstance has to make their own choice. These were the things I thought about:

If I'm already in remission, and know that if I am careful could be in remission for a long time, why would I risk taking any drug at all if I didn't have to.
Not exposing myself to chemicals and drugs is one way to keep my baby safe, but I also need to be healthy to keep the baby safe.
I was in a flare-up during my entire first pregnancy. I was induced three weeks early because of intrauterine growth restriction (IUGR). This means my son was below the 10th percentile for his gestational age at that point. He weighed 5 lbs 11 ozs at birth and the doctor was concerned about him having serious problems (he's absolutely perfect now). While the doctor said the cause of this was unknown, I can't help but wonder if it was related to my flare and my body just being so depleted.
Why would I risk going having another flare-up if the medicine can help prevent it.
How will I have the energy to care for a toddler and a new baby if I am sick

I felt like everyone was saying I should stay on the medicine and if I wasn't pregnant I knew I would for sure. I finally made up my mind when I talked to my Ob/Gyn.

I told her my concerns and asked if I should try to get off the medicine or at least try to cut back the number of pills. She told me that in her opinion Asacol was completely fine. She said she has many patients on it and that she has seen studies involving pregnant women that indicate their is no harm. I know that she isn't one of those doctors that say anything is fine because with my first pregnancy I wanted to take Probiotics to see if that could help with the flare and she would not let me because she said it was unstudied and the risks weren't known.

So, ultimately I decided to stay on the medicine FOR the health of my unborn baby. Having enough energy, getting enough nutrients, feeling well, getting good rest, etc. is just as important as avoiding things. I am sure there are people that disagree with this decision or think I should take non-medicinal approaches, but I feel this is what fits best for me, my lifestyle, and my family right now. I'm feeling good and I got to see the ultrasound of my baby and hear his/her heartbeat. Life is good.

I'll keep you updated!

Not So Skinny Girl

2009-11-11T09:08:00.001-08:00

A few weeks ago I really thought I was just weeks away from remission. I was only feeling sick in the mornings and usually by about noon I felt completely normal and could really enjoy the rest of the day. There was hardly any bleeding and there was starting to be more form to my movements.

But then I had a couple days when I was extremely sick again. Going to the bathroom 20+ times a day, and feeling sick all day and night. My doctor called them "episodes". It was like I had started all over and no progress had been made.

There was something different too... I also had this queer queasy feeling. Like I'd eaten too much sugar on an empty stomach (possible, it was Halloween recently). Or maybe kind of a seasick type feeling.

That was odd. I hadn't felt that with my UC before. Perhaps it was something else. Swine flu maybe? Regular flu? Then I had another thought. When I ate, I had my regular UC type sickness. When I didn't eat, I had the seasick type feeling. Hmmm....

That's right! I'm pregnant! Baby is due July 9, 2010.

I am excited and happy and scared and worried and every emotion in between!

After I found out I was pregnant the bathroom issues calmed down a bit, not as good as before but not much worse either. I kind of feel like the "episodes" were my bodies attempt to get my attention. "Hey Skinny Girl! Something's going on in here!"

In a recent post I wrote that I was feeling terrific, and I am, but it isn't because my UC is better. In fact the UC symptoms are a little worse (but I'm still hoping remission is right around the corner! Maybe by Christmas). But I have just been in such a darn good mood lately that even feeling sick with UC and morning sickness can't bring me down. The morning sickness is new to me, I didn't have it all when I was pregnant with my son. So that is my big news! Like I said we are really, really happy! And I guess I won't be Skinny Girl much longer!

Stinky Experiment or The Power of Love

2009-11-06T20:10:00.000-08:00

Okay, I'm not posting my good news yet. After I wrote my last post I remembered something I did quite a while ago and wanted to share it with you. So I'll just tell you about it and then I'll give the thoughts on the mind a rest for a while.

Some time ago a friend of my named Katie showed me two jars she had. Here they are:

She told me that both jars contained rice and that she had labeled one with positive and good thoughts and the other with negative thoughts. The first week she put the rice in, she would open the jars and talk to them. To the jar with the positive label she would say things like: "You are beautiful" "I love you" "You make me happy" "You are so smart".

To the jar with the negative label she would say things like: "Why are you so stupid?" "You never do anything right." "I hate you." "You are so ugly." She also said if she were having a bad day she would give the negative labeled jar dirty looks.

She sealed up the jars. This picture was taken of the jars three years later. Katie wrote, "The 'positive rice' is still white and fluffy and otherwise unchanged from the years before (other than being jostled around by moving. The 'negative rice', on the other hand, continues to deteriorate and discolor." Nasty, right?

I was amazed when I saw the jars and told my husband about it. He was...skeptical. And so we conducted our own experiment. I however did not have any jars on hand so I used brand new Rubbermaid containers. Here is a picture after two weeks:

Now unlike Katie, both of my containers eventually grew mold and they started smelling so after a couple months, I threw them away. I don't know if I didn't do the experiment right, or if the difference was in using the Rubbermaid containers instead of glass jars or if I was because I kept in my laundry room where it is quite humid, but Katie has documented pictures over the last three years of her rice.

HOWEVER, it was clear to me that the one I labeled hate and spoke unkindly to had significantly more mold and rot and developed it much faster than the one I labeled Love and spoke kindly too.

The thought I had yesterday after my last post was, "What if the unkind words we say to ourselves are literally causing our bodies to break down." When I berate myself for making mistakes or not measuring up...am I hurting my body?

From our experiment I have tried to be much more careful about what I say to myself and to others. We can be a positive influence or a negative one. The choice is ours.

If this is interesting to you, I would invite you to participate in the rice experiment. (Do a google search to see more.) If you do try it, I would be very interested in your results, so let me know!

A man is but the product of his thoughts what he thinks, he becomes. --Mahatma Gandhi

2009-11-05T08:19:00.000-08:00

In my last post I wrote about a memory I had and about how it made me think about the powers of the mind. I am not alone in experiences like this. Is it intuition? Premonitions? Inspiration? Coincidence?

I personally feel we have yet to harness the real power of the mind. My question now is can the mind heal the body? And if the mind can heal the body...can it also make the body sick?

There are myths and urban legends that suggest this. There are also scientific studies about placebos and how if the mind thinks it is getting better, the body responds. And this article from Time magazine tells that it has been scientifically demonstrated that if a child younger than 11 has a finger sliced off, if nothing is done to it medically, it will grow back on it's own.

Is this because a child under 11 would believe that it is possible? Or is it because they are growing so quickly that there body just has that capability at younger ages. As we enter the teenage years do our experiences in life cause us to become jaded and disbelieving, thus making healing more difficult? Is faith the real secret to our health, for better or worse?

Can a conscious belief that we are healthy, cause a body to heal itself? And if that is true, how does one with illness come to fully believe they can return to full health? Just some thoughts from my wandering mind...

HEALTH UPDATE: Feeling terrific, and I've got some good news! More on that next post.

The mind is a terrible thing to waste

2009-10-25T14:39:00.000-07:00

I have a few memories that are crystal clear to me. They have been engraved in my mind since the moment they happened. This is one of them:

I am standing in front of my Elementary School alone. I'm ten and I am waiting for my mother to pick me up. It's the first big snow day of the year. It's already been snowing for several hours and there is nearly a foot of snow on the ground. Large, heavy flakes continue to slowly fall from the sky. The new whiteness of the world and the silence not only feel peaceful and tranquil but also eerie and strange.

This was an exciting day for me. The reason I was outside waiting for my mom while all the other kids were still in class was because my grandparents were coming to visit. I was so excited to see them.

The entire day I was filled with such excitement and happiness about their arrival (and about the fact that I got to miss part of school). But there was something else there too. Although I was in a very good mood, a fantastic mood really, I had this strange feeling that I could cry at any moment--that without difficulty I could form tears and cry. It was a bizarre feeling, especially since I wasn't sad (and I'm not one to cry when I am happy). Noting the feeling, I made a plan that the next day when I was supposed to go to school (while my grandparents stayed at my house) I could use this new found ability to fake being sick, allowing me to stay home and have fun with my grandparents. Just to test it I tried crying and saw that I could and that I could easily cry quite a bit. I stopped crying, hoping to save the big tears for the next day, and continued waiting.

After a while, I wondered what was taking my mother so long. She was quite late and I was anxious to get home. Finally I saw our old yellow truck pull up in front of the school. I ran and got in. Seeing my mother's red eyes and splotchy face I instantly knew something was wrong. In my childhood innocence I asked, "Are Grandma and Grandpa here yet?"

My mother burst into tears. I stared at the window-wipers whisking away the snowflakes as she told me my grandfather had died. And then I cried.

What does this have to do with UC? This was the first time I thought the human mind might be capable of more than we realize. I had the sensation to cry before knowing why. I feel like in some way I knew something bad had happened. William James wrote, "We are making use of only a small part of our possible mental and physical resources," (from The Energies of Men, p. 12). If our minds are capable of knowing more than our physical realities, perhaps on a subconscious level, could we then use our conscious minds to somehow access some of that knowledge? What abilities do our minds have that are yet untapped? Can we (as so many people believe) really heal ourselves? Did my subconscious mind know my grandfather had died or was it a coincidence?

More thoughts on this in my next post.

Why I Hate You

2009-10-16T21:02:00.000-07:00

Dear Ulcerative Colitis,

I really think that you are quite impertinent. You came into my life without invitation and have really behaved quite rudely. You have wrecked havoc on my life and particularly on my colon. I don't think we can ever be friends.

At one point in time I thought I could tolerate you--that I could adapt to living with you. But then I remembered why I hate you so much.

It's one thing to bother me--make me uncomfortable, embarass me, disrupt my schedule and routine--but it's quite another thing when you encroach upon the happiness and well-being of my son. You see, I love him more than anything else in the whole world.

And I hate you for the days I could hear him crying in his crib for me, but I couldn't come because I was with YOU on the toilet.

I hate you for taking away TIME and ENERGY that should have been devoted to my son.

I hate you for the all the playdates, outings, and vacations that were missed because YOU needed so much ATTENTION.

UC, honey, it's not me...it's you. I hate you and I don't want you in my life. Don't you EVER hurt my son again. I want you out of my life for good.

Sincerely,

Skinny Girl

No man needs a vacation so much as the man who just had one

2009-10-13T21:16:00.000-07:00

I'm back from my vacation to Denver, Colorado. I survived! I actually had quite a good time. In the days leading up to it, I was feeling quite anxious because of a different vacation a couple months ago. On that trip I was just miserable because of the UC. I had been feeling a bit worse and I think it was because of me worrying about having UC and traveling in addition to the normal stresses of getting ready to leave. On the trip I visited many lovely bathrooms, some of the nicest public restrooms I have seen. Which is good, because I am able to use the bathroom more easily when it is nice than when it is not if you know what I mean.

My biggest stress of the vacation was where I was staying. Instead of getting a hotel I stayed at the home of my uncle and his family. They showed me the bathroom I could use. The bathroom opened into their kitchen...where the family pretty much stayed all day...and there was no fan in the bathroom...and a very thin door...and I could hear them when I was in the bathroom so...

They all know about my illness (thanks mom) but knowing someone has a sickness and hearing them be sick are two very favorite things. I hate that the bathroom was right by the kitchen where people would be preparing food and eating, who designed that? But it was fine because I was hardly sick at all the whole time I was there. Maybe it was because it was a 10 hour car drive to get there and so I had a (kind of) relaxing day instead of my normal hectic days. Or maybe it was something else. But I had a really good vacation and I felt like a normal person for a while.

While there, I visited the Denver Museum of Nature and Science. They had this exhibit where you put monitors on your forehead that read your brain waves. It was a game between two people. There was a ball in the middle of the two people and a goal on each end. The point of the game was to become as relaxed as possible. When you relaxed, it would move the ball towards your goal on the other end. But as soon as you started thinking about something and your brain waves (or something, sorry I don't remember all the details) would go up and the ball would move in the opposite direction. My mom and I had been watching a couple playing the game and watching their brain waves for about 15 minutes before the girl beat the boy. We decided to give it a shot. My mom has studied meditation and relaxation techniques for years and was pretty confident she would win. Also, my family pretty much all think the reason I have UC is because I can't relax and stress a lot. I thought she would win because there was a crowd of people there watching and I am naturally pretty introverted and also because I'm not known to be a laid-back person. After just a minute of playing the game though I had won. I had just repeated in my mind the words "calm" and "peace" and hadn't tried to focus on the ball moving much. After I beat my mom, my cousin thought he could beat me, but I won again. And then I beat my dad. They showed the brain waves on a screen and every time mine were just low and steady while the others' would go up and down a lot.

My mom turned to me and said, "If you are able to relax so easily, why in the world do you have Ulcerative Colitis?" Why indeed. Mom said I should buy one of these and then when I see I am stressing I can just calm myself down and wouldn't have to be running to the bathroom all the time. How much do you think a brain scanner thingy costs?

P.S. When I got home, there were three messages on my answering machine from my doctor's nurse to call them. Remember I hadn't called last Monday--maybe they thought I died. I called the nurse back and the doctor has given me new orders to increase my dosage back up and to be sure to call EVERY week.

Monday, Monday, Can't Trust That Day

2009-10-05T21:19:00.000-07:00

Today is Monday, which means it is the day I call my doctor's office. Every Monday I call and talk with nurse Kathy. She asks how I am feeling and then relays this information to my doctor who then tells her to call me back to either increase, decrease or keep my dosage the same. I think this is fantastic because I don't have to adjust my schedule, get a babysitter to come in AND I don't have to pay for a visit. Which is unlike my GP who would have me come in every week just for an update on how the medicine was working. So I've been very appreciative of him doing this.

The problem has been the conversations I have with nurse Kathy. It goes something like this:

Me: I've still been sick in the mornings, but after that I have been feeling fine the rest of the day.
Nurse Kathy: Define sick.

Really? Do I have to define sick? I mean, I call you every week. Do I really have to describe the diarrhea, spurting, bleeding, every week? Don't you remember from last week when I defined "sick" for you?

I know, I know, she needs to know specifically what symptoms I'm having so she can tell the doctor. Sick, after all, is relative.

It's just I am a bit uncomfortable talking about "bathroom" things. Going to the doctors for me is horrible when first you have to tell the person all the details when you call for the appointment and then at the appointment you have to tell the lady at the registration counter, and then the nurse that takes your weight and blood pressure, and finally the doctor himself. Why can't the first person just write it down and pass it on to the others? Why do they all need a graphic description? I think they like to see us squirm.

Writing about these things on my blog is one thing, but actually having to say the words out loud--to another person--is another thing. I think it has to do with my upbringing. My parents always taught me that it wasn't proper to talk about bathroom issues. In fact, I clearly remember the day one of my visiting friends stood up and said she needed to "go pee". My mother almost fainted. Women, or anyone for that matter, didn't pee or poo. We used the restroom or needed to powder our noses or merely visited the bathroom. But we NEVER talked about what happened behind closed doors, because there is a reason those doors are closed.

So last week when she asked me to define sick I sighed and reminded myself she hears this crap (sorry, couldn't resist the pun) all the time and I shouldn't be embarrassed. But today, I just didn't feel like calling. So, I didn't. I just felt today that if I didn't acknowledge I had Ulcerative Colitis, that maybe...I wouldn't.

Have a heart

2009-09-28T20:29:00.000-07:00

This article from the Associated Press demonstrates why it is scary for people with UC to travel. I could see something like this happening to me. I wonder if I would be as bold to run past the flight attendant to get the bathroom or if I would just stand there and mess myself.

They should make special considerations for people with UC. The same as the do for people in wheel chairs. There should be private medical bathrooms on airplanes only for those with medical conditions with those people being seated nearby. And the process for planes taking off should be expedited. I know I have sat ON an airplane for 45 minutes just waiting for it to take off. This article has upset me a bit. I feel bad for the man that was kicked off his flight and probably humiliated. I thought about writing a note to United Airline, but couldn't think of what to say. After all they were just following security procedures, which I support, but still... It's tough enough for those of us that urgently have to use the bathroom. What would you say to United?

Putting my fears aside though, I have planned a vacation for next month. I feel my health right now is well enough that with a little extra care I could travel and enjoy myself. I am looking forward to it.

Validation

2009-09-23T12:21:00.000-07:00

Everyone with UC needs validation. This is a cute little movie!

Set me free, why don't cha babe

2009-09-20T14:51:00.000-07:00

Set me free, why don't cha babe
Get out my life, why don't cha babe
'Cause you don't really love me
You just keep me hangin' on
You don't really need me
But you keep me hangin' on

That's the first verse to Diana Ross's "You Keep Me Hangin' On". I certainly don't love UC, but sometimes I wonder if I am "hangin' on" to it. Today I'm wondering if I get a subconscious payoff from being sick and in some twisted weird way I like being sick. No, I DON'T like to be sick. But...thinking really hard about it, here are some reasons I could see why someone might subconsciously hold on to an illness:

If I don't measure up or if I grow up to be nothing, or worse a failure, it's not really my fault. It is because of the UC. Anything I am unable to achieve I can always blame on not feeling well.
I get some attention for being sick. It makes me unique from other people and grants me sympathy from those that know.
If there is something I don't want to do, I can always say that I'm not feeling well because of my UC. It allows me to avoid responsibilities.
I always have a good excuse to procrastinate. Those goals that I set can wait indefinitely until the day that I am well.
Puts my loved ones in a care giver role and myself in a dependant position.
Allows me to be a cautious observer of life instead of an active participant.
If I do something wrong or say something hurtful, it was beyond my control because I wasn't feeling well.
I can blame the other people in my life for not doing enough/not loving me enough, causing me to be ill.

These were all the things I could think of for a subconscious mind to cause a person to stay ill. Can you think of others? Most of these I really don't think apply to my situation. I could maybe possibly see #1, 3, and 4 applying to my life, but not the others. To my subconscious mind: I don't want UC anymore.

HEALTH UPDATE: I am feeling quite a bit better. I feel like remission is right around the corner. It's been three months since I started back on the medicine. Currently I am still having moderate symptoms in the morning and the rest of the day is fine. (Okay, maybe a bit more gassy than the average person). I honestly think I could live the rest of my life in this condition and be completely happy even though I am not completely well. I can manage being sick in the mornings, it just makes the rest of the day sunnier.

Oh, and my husband replaced the tire I ruined that I wrote about in my last post. Actually, he said he had to get a new set because the wear on the tire wouldn't be the same as on the other side. So, more costly. But from that experience I have learned that I should trust myself more.

The great art of life is sensation, to feel that we exist, even in pain. --Lord Byron

2009-09-18T16:25:00.000-07:00

Recently I had a flat tire on my car. I was driving it at the time and didn't realize it was flat and kept driving for quite a while (ruined the tire). In case you are wondering (like my poor husband), yes, something didn't feel right. I did think something was wrong, but I am one of those paranoid people that frequently feel like the car doesn't feel right. I have pulled over countless times to "check" the car only to see nothing wrong. So I didn't pull over to check until I reached my destination a few miles away. (I really am a good driver! Please don't think ill of me from this lapse in judgment!)

Besides the strange noise and bumpy ride, there was another clue. The other drivers all had this blank look on their face. I passed a jogger and he had it too. It's the face you get when you know something is wrong but you don't have time to react. It's kind of a wide-eyed, mouth ajar, staring look.

But this is my UC blog, so what does this experience have to do with it? Well, on occasion I have found myself in a public place when the urgent need to find a bathroom presents itself. It doesn't matter where I am or what I am doing, once I get the feeling, finding a bathroom is the only thing I can concentrate on. Very quickly, I go into a state of shock and then panic and then survival mode. When I saw those other drivers with their shocked faces it made me wonder if that's how I look when I urgently have to go. What do you think? Is there such a thing as the "UC Urgent Need Face"?

The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.

2009-09-16T16:20:00.000-07:00

I've been feeling really great lately. Not normal yet, but manageable. Talked with my doctor yesterday and we are going to try to slowly decrease my dosage. That's good news. Mornings are still hard for me but other than that I feel completely fine. Mornings have always been the worse for me, not sure why, but that's the main reason I am always late for things. But feeling so well lately, I even dared go with my husband on Saturday to a big car show. He was entering his car in it and really wanted me to come. I was nervous because it is outdoors, without bathrooms. And while they do have a few port-a-potties, they almost always have long lines. But I went and I was fine and I almost forgot I had any issues at all. That's what I really want--to be so well that it's not even something I think about. To be able to go somewhere without first finding where the nearest bathroom is. Or having to think about what I'm eating. To be free to live my life.

Now that normalcy is on the horizon I want to work on gaining back some of the weight I've lost. I was quite content with the weight I was before. With the weight loss, I look tired almost always and my skin has lost it's luster. You might think that gaining weight would be the easy, maybe even fun, part. But this needs to be handled delicately because, remember, I have a sensitive digestive system. What that means is that I can't overdo it on any foods or I could get sicker. Moderation in all things! I don't want to undo the progress I've made, so I'm going to avoid the things that aggravate my UC:

Movie theater popcorn -- Maybe it's because I am allergic to corn, but anytime I've eaten this, even just a handful, I've become extremely ill. Popcorn at home doesn't seem to be a problem as long as I don't eat too much.
Greasy foods (Pizza, hamburgers, french fries, fried anything)
Sweets
Spicy foods
Not getting enough sleep
STRESS
Getting too hot
My food allergies (corn, wheat, and soy)

I'm lucky because with the exception of the first item I can have a little bit of all these things and still be alright. The key is balance. I can handle a bit of stress or being out in the sun. I can eat my lovely sweets and spicy foods. I just need to be a bit aware of what I am exposing myself to and making sure I am not putting my body under extra stress.

Pill Popping On The Weekend and Positive Results

2009-09-11T17:18:00.000-07:00

For some reason I always seem to run out of pills right before the weekend. When you take ten pills a day it is hard to anticipate when you are about to run out. I look in the bottle and say, "Oh, there's a lot of pills in there. I'm good." Then, two days later there is just one sad lonely pill. (By the way, if any of you are on Asacol there is a $25 off coupon on their website that you can use once a month through December.) I called the automated system to refill and sent my hubby in to pick it up. Only there was a problem. He couldn't get the medicine. See last month I was only taking 5 pills a day but then my doctor increased it to ten a day. Only he didn't tell my insurance company and they won't let me get a refill for another month. Must be trying to prevent me from selling them on the black market. Probably a high demand for the butt pills. Don't worry said the drug store. We'll call your doctor and get this all sorted out. But it's Friday. If you were a doctor, would you work on Fridays? Well, apparently mine doesn't. Which means it can't get sorted out until Monday. I'm still in a flare-up right now and really don't want to make it worse by missing doses.

Luckily, the pharmacist had pity on me and gave my husband enough pills to get me through the weekend. Pills without paying, huh... My criminal mind was spinning. How many pharmacies are in this town... Don't worry, I'm a virtuous person.

Other news: Reading these positive thought posts on some of your blogs reminded me of The Secret. http://www.thesecret.tv/ It was very popular around here the last couple years. Someone gave me the video (I was too lazy to read the book) a year ago and I had watched it then but not paid it much thought since. I remembered how it talked about using positive thoughts and visualizations to make things happen: improve your health, increase your wealth, get the relationships you want. The video suggests you test it. To think of something you want and visualize getting it and how you would feel and then to believe you will get it and not let any negative thoughts about it not happening get in your mind.

I decided to test it. I thought I would try something small so it would be easier for me to believe that it would happen. I decided I wanted $20. I visualized getting it, believed I would and wouldn't you know it by the end of the day, I did NOT get $20.

I got an unexpected $100!!! My mother stopped by and gave it to me. She said she wanted to help pay for my son's preschool. I tried to refuse it, but she wouldn't have it. It wasn't until I was in bed last night that I realized I had gotten the $20 and then some.

I'm going to try this again sometime with something loftier. And maybe one day with my UC.

Did I Do That?

2009-09-09T16:14:00.001-07:00

During this most recent flare-up, while spending quite a bit of time on the throne of thought, I've had a reoccurring question come to mind. After getting better the first time, I honestly believed I would never be sick again, so when it came back it shocked me. I had to ask if I had done this to myself. There is a mini Steve Urkel in my mind saying, "Did I do that?" while squinting through large glasses. Was something I did or didn't do the reason I am sick? Was eating certain foods or not eating something I should have the reason it came back? Was over-extending myself and not resting enough the issue? I just want to know if it was my fault. Not that it would change anything. I would like to say that it was out of my control, that it couldn't have been helped. But I don't know that.

Some other bloggers have supposed drinking to be a link. I've never had a drink in my life. I've also never smoked. Interestingly, UC is less common in smokers. I do admit that I have a sweet tooth and have indulged it over the years. I also am more "Type A" and worry a lot. Those things can be contributors. I have a relative that died with Crohn's disease...but we weren't blood related. So I'm not sure what the reason for my illness is or if I inadvertently or subconsciously caused it.

Then there is the left-sided thing...

I have Distal Colitis, meaning the disease is only in the left side of the colon. Why is this significant? Because when I was visiting with so many alternative healers there was a reoccurring theme that illness on the left side of the body is the feminine or emotional side where the right side is the masculine or intellectual side. This didn't mean much to me when I was meeting with them because I didn't discover it was on the left side until after I had the colonoscopy. When the doctor told me, I remembered the comments from the other healers. Left side = emotional side.

Recently I have started reading Louise L. Hay's book You Can Heal Your Life. I haven't finished it yet but it is basically about changing your mental patterns that create "dis-eases" in the body. Louise has a section in the book where she writes about the emotional causes for illnesses. These are some of the ones I looked up:

Colon: Fear of letting go. Holding on to the past.
Colitis: Insecurity. Represents the ease of letting go of that which is over.
Itis/Inflammation: Anger or frustration about conditions you are looking at in your life.
Left Side of Body: Represents receptivity, taking in, feminine energy, women, the mother.

She didn't specifically have UC in her book, but I think the above things would cover it. So what I get from reading her book is my left-sided UC would be caused from a fear of letting go and potentially involving females. The thing is I had kind of a lousy childhood with some traumatic events that happened. I've always felt like those events didn't have any bearing with me in my adult life, but could the fact that I have never confronted those issues be playing into my health now? If that is true than just burying those issues instead of dealing with them did cause my UC, ergo I did cause it.

Louise L. Hay said in her book that all "dis-ease" comes from a state of unforgiveness. Again, I haven't finished the book yet, but I have read where she said forgiving those that are the hardest to forgive and loving ourselves is the key to healing ourselves. Louise herself had quite a crummy life (so much so that mine seems quite rosy in comparison) and also was told she had incurable cancer. She writes that changing her thought processes allowed her to completely heal herself and she says that it can work for anyone and for any illness.

More thoughts to ponder on the throne of thought I suppose. (P.S. If anyone wants me to look in her book under other ailments, let me know and I will see what she says is the emotional tie. A friend of mine was having low back pain. I looked that up and it said lack of financial support. She is in the real estate market and has been having a tough time in this economy.)

How I Got Here

2009-09-07T16:18:00.000-07:00

I actually consider myself quite lucky that I even know I have Ulcerative Colitis. I sometimes wonder how many people are out there with this illness--knowing something is not quite right--but not knowing what it is. I was sick for five years before I found out I had UC. (Sorry, this is going to be a long story).

I had always had a sensitive stomach. I would always get butterflies in my stomach whenever I was nervous or upset. I remember pretty clearly the day I knew it was more than just nerves. I had been asked to be a guest lecturer for a college class of 500 students. Being quite introverted I was scared out of my mind. The morning I was supposed to speak I was incredibly sick and spent most the day in the bathroom. I still went to give my presentation and before it started made several trips to the bathroom then too. It was then that I first saw blood.

I was convinced I was dying. I thought the blood meant cancer or something worse. I was a college student and didn't have a lot of money so I went to the free clinic at the University. The doctor there talked to me about my symptoms and checked the regular stuff (blood pressure, weight, etc.). She asked how many credits I was taking. I told her 21 (it is considered full-time to take 12 credits) and that I was a student fellow and also had a part-time job and an internship. She said with all that going on it was no wonder I had these symptoms. She told me to make sure I was eating well, to get plenty of rest, and to try to eat more fiber. Looking back at this time, I was under an incredible amount of stress. I thought I could handle having that much stress if it were for just a short amount of time (I was close to graduating). But I think now all that stress triggered my UC.

A year passed and I was still sick. In fact I was quite sick every morning though I would feel better as the day went on. I went to a nurse practitioner. She also had a discussion with me and said it looked like I wasn't handling the stress in my life very well. That confused me a bit because I really didn't feel like I was under stress at that time, especially compared to how I was the year before. She prescribed sedatives for me and told me to have a follow-up appointment in a month.

Back in her office a month later she asked me to tell her on a scale of 1-10 how much improvement. I said a 2. She frowned and said she would have thought I'd be feeling a lot better than that. Then she prescribed anti-depressants and again told me to follow-up in a month. The process of me trying the prescriptions and returning for a follow-up continued for quite some time. Each visit she would prescribe a stronger medication, but I never really felt much better. Eventually I decided if it was about stress, it was just something I needed to get control of on my own. I stopped seeing the nurse practitioner. I started a regular exercise program. I also learned about a friend with Caeliac disease that had similar symptoms so I got tested for that, but it was negative.

My mother is really into alternative medicines. Around this time she started taking me to all kinds of wellness specialist, chiropractors, and spiritual healers. I would call them all witch doctors. I tried all kinds of alternative medicines including foot baths, foot zoning, laser therapy, clearings, and color therapy. They had me taking all kinds of vitamins, herbs, and special diets. I was skeptical of all of these alternatives to traditional medicines. My mother would pay for them because they weren't covered by insurance and I wouldn't have tried them if I had to pay for them. Ultimately though, I never felt better, not even after trying the different treatments for several months. When I finally did discover that I had UC I started feeling slightly better within days of starting Asacol. To do this day though my mother still thinks the reason the alternative treatments didn't work was either because I didn't believe them (and thus willed myself into still being sick) or because I didn't stick with the treatments long enough. But I couldn't let my mother keep paying for the expensive treatments that weren't working and to me seemed no more beneficial than a sugar pill. Sometimes they would say they could sense an emotional problem for my illness. I think there could be some legitimacy to those claims and I'll write a post about that later.

More time passed and I had grown accustomed to my condition. I didn't realize how sick I was because I was just used to it. At this point, I would get sick anytime I ate anything. And I felt sick pretty much most of every day. People would ask my mom if I had an eating disorder or cancer because I had lost so much weight and I looked (and felt) horrible. One evening I went to a movie and ate some theater popcorn. After I got home I felt extremely sick. It was the worst I had ever felt with extreme abominable pain and diarrhea. The pain was worse than giving birth (and I'm a mother, so I know!). My husband took me to the Emergency Room and after four hours and receiving some type of pain killer (I don't remember what), they sent me home. The next day I went to see a family physician. She suspected the violent attack was due to an allergy to something I ate. Probably the movie theater popcorn since that is the only thing that was unusual that I had eaten.

I had my blood drawn and tested for allergies. They came back positive for mild to moderate allergy of corn, wheat, and soy. The doctor thought I had the attack because of the popcorn and that I was regularly sick because of everything else I ate. I was instructed not to eat corn, soy, or wheat in any form for the rest of my life. I met with a dietitian who helped me create menus. It was very difficult because so many things use corn or wheat as fillers and alternative food products usually used soy. Still I did it. It was very hard and very expensive but I went one full year without eating any of the foods. I was willing to do it because I just wanted to feel better. But I just kept getting sicker. I thought I must still be eating the foods I was allergic to. That maybe I was missing them in the ingredients or that there were trace amounts in the foods I was eating.

During this time I was pregnant with my son. Because of my dietary restrictions I was eating really healthy (there aren't a lot of junk foods or dessert type foods without corn, wheat or soy). I was still sick though and talked to my obstetrician about being sick while I was pregnant. She said I probably had hemorrhoids from having diarrhea so much and that was what the bleeding was from. She felt that if I continued to not eat those things I would get better but it would take some time for my body to heal.

Then, my son was born. This was another really stressful time in my life. I was still working (though working from home then) and I was also helping writing a grant for my old college department. The night wakings/feedings and responsibilities of being a new mother were overwhelming. I think I weighed 107 then. A couple days later my body went into shock. I was freezing and couldn't get warm, my temperature had dropped quite a bit. I had another trip to the emergency room.

After this my mother had had it. After a friend of hers told her I really needed to see a specialist she convinced me to see a Gastroentrologist. I had thought about going to one before but I was scared they would make me have a colonoscopy which I was terrified of having. I went and he did make me have one. It's really funny because the colonoscopy wasn't bad at all. In fact I don't remember any of it! The worse part was the preparation, which wasn't that much different from how my days went anyhow. (If anyone out there is scared of getting a colonoscopy, don't be! They really aren't that big of a deal!) That is when I found out I had UC.

Doctor prescribed Asacol and a few months later I was completely better! It was amazing how it felt to not feel sick at all! I couldn't believe I was willing to live with the symptoms when I could be feeling so good! After a couple more months on the medicine the doctor said to stop taking it and to see how I would feel without it. I still felt great! Every morning I would have so much gratitude when I was in the bathroom (weird, I know). I honestly thought I was healed and would never be sick again.

Eleven months passed and I suddenly had a flare-up. It was surprising to me how quickly I went from feeling just fine to feeling just as bad as ever. I desperately called my gastroenteroligist but he was on vacation and couldn't see me until the next week. It was one of the longest weeks of my life. I begged the nurse to put in a prescription of Asacol for me but she said she couldn't until I saw the doctor.

I finally got to see him and it has been a couple months now. I have gradually started feeling better. It seems to be taking longer to feel well this time than last time, but maybe I have just forgotten. I am taking 10 pills a day and hope that once my symptoms are under control I can reduce the amount of pills. This time I won't stop taking the medicine. My doctor said I will probably have to take pills the rest of my life.

Call it what you want, but I consider getting the diagnosis and the medicine a miracle in my life. I hope everyone that feels ill can get the help they need. It is amazing to me that I had met with so many medical professionals without any of them considering UC. Next time, I'll start with the specialist.

Potty Humor

2009-09-06T08:26:00.001-07:00

The other day my two year old ran down our hall in front of me. He ran into our bathroom and slammed the door shut. I paused at the door for a moment before I opened it to see if I could hear what he was doing in the bathroom. He isn't potty trained yet. I heard a familiar sound. Opening the door, I confirmed what I was hearing--he was blowing raspberries on his arm.

So THAT's what he thinks I'm doing in the bathroom all the time...

What's Your Secret?

2009-09-05T21:16:00.000-07:00

I'm a skinny girl. I'm going to be completely honest. I'm skinny. I am 5'7 and today I weigh 115 pounds, which is five pounds less than what I weighed when I graduated high school nearly ten years ago.

Pretty much any day I go out in public someone will comment on my weight. "You are so skinny," they say, as if they were giving me a compliment. Their next comment is predictable. I've heard it from family members, friends, acquaintances and strangers. "What's your secret?"

At this point, I usually just smile, shrug, and say, "Oh, I don't know." And that's the end of it. But it's not the truth. The truth is that I know exactly why I am so skinny. But most of these people probably don't care anyway. They are just making conversation. Somehow commenting on someone's weight just became everday small-talk.

I was recently at a community picnic when I ran into a distant relative I had not seen in sometime. "You are so skinny." I never know what to say. Do I say thanks or what? Do I say that she looks skinnier? I never know what to say. Then it came. "What's your secret?"

I don't know what came over me. I must have been feeling a bit snarky. I suddenly found myself telling her my whole medical history. I have Ulcerative Colitis. And I told her. I told her about how I feel sick and how it causes me to lose weight and I really told her more than I should have.

And she replied, "That must be so nice."

I was shocked. I stared at her to see if she was joking. But she just had a smile frozen on her face. As I related this incident to a friend I wondered if the girl just hadn't been listening. How could she have said that it would be nice to have a chronic illness???

Then I got my second shock. My friend told me that she would be willing to have my illness if it meant she would be as skinny as me.

SERIOUSLY PEOPLE?!? So begins my rant...