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!