A new medicine for me

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

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

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

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

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

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

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?

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

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!

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

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

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

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...

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."

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.

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

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

This has nothing to do with UC :)

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?

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!