Since I’ve had my jpouch, I have never felt awesome. Fatigue seems to get the best of me and at times, I have even been noticing some blood. I also have regular nausea, pain and cramping. I have tried to brush it off in hopes that it will get better in time and that this is all just part of getting used to life with a jpouch.
I had an ER visit a few weeks ago when I was having some serious abdominal pain. I left work early and headed over to the Cleveland Clinic (where my surgeon is, why would I not go there?) Turns out the CC has the worst emergency room I have ever been in, which is saying a lot because I’ve been in a lot of ER’s.
The nurse was terrible, doctors didn’t seem to care, and I was worried I was obstructing with the amount of pain I was in. They didn’t help very much, they performed a CT scan, found nothing and we basically asked to be discharged due to everyone’s poor attitude and work ethic.
What they failed to tell us was that my blood work was starting to look off again. My platlet count was up to 550,000, which is on the higher end of things. I’m always borderline malnourished, along with iron deficiency. My hemoglobin count was also down to a 9.2, which is getting to be too low, considering I’ve been transfused at 8 before.
I knew my iron and hemoglobin had to have only gotten worse since that ER visit, which was on June 4th. I’ve been bleeding more, tired, irritable, extremely nauseated, and just not feeling like myself. My nasty ice chewing habit is also back, one that is terrible when I am iron deficient. It’s a condition called PICA, where your body is trying to search for the nutrients it is missing in items that have no nutritional value. Some people eat paint; I prefer ice, thank God.
We discussed the fact that I may have pouchitis and my dad started me on some Cipro and probiotics. He also yelled to, “start taking your iron!” Which I hate taking iron.
I also knew something was wrong when my mom sister aunt and I went to the CCFA Take Steps fundraiser over the weekend. We planned on volunteering then completing the walk. I was 100% certain I would have no issues, considering that this was a fundraiser for Crohn’s and colitis, there has to be bathrooms everywhere, right?
We were about a mile into the walk when I realized I had to find a bathroom. The nice thing about my jpouch is the fact that I don’t have serious urgency issues; I can usually wait about 10 minutes before I start to feel extremely uncomfortable.
Well, my 10 minutes was up and a mile away from the nearest bathroom sent me into an absolute panic. A feeling that I thought I would never have to feel again. Where the only thing you can see is red until you spot a bathroom. When just breathing hurts and nothing else matters except finding relief. It’s painful, unpredictable, humiliating and above all, frustrating.
We left the walk after I found the bathroom. I was a mess. Crying, hyperventilating, so angry and confused as to why there would be no bathrooms available on the path. I would have NEVER agreed to complete the walk had I known there were no bathrooms. Weren’t there other people walking that had symptoms like mine? What were they going to do?
When we got home my dad gave me an IV with fluids in it, I felt like I couldn’t keep up with my G2 and I was beyond tired. I knew I needed to be checked out immediately. I wanted to know what the problem was now.
I went to see my GI doctor yesterday morning and had some more blood work drawn up. After looking over my labs from the ER a few weeks ago he confirmed the diagnosis of pouchitis-anemia. Once again I’m back on quite a few different medications and am so incredibly exhausted.
When my labs came back yesterday, my dad informed me that they were awful. Hemoglobin is even lower at an 8.6 and I am severely iron deficient. Enough so that my dad and I thought for sure I would not only be receiving an iron transfusion but blood as well. My platlet count (which measures inflammation) is at an all-time high of 660,000. Iron is at an all-time low of 4. Dad says my labs look like I have UC again. Great.
I’ve had both kinds of infusions before, blood takes forever, as I’m sure some of you know, and iron takes quite some time as well. Both of which I have to go back to the infusion center at Aultman hospital, a place I thought I would never have to be again after having these 3 operations.
When my doctor explained to me that patients with IBD cannot digest oral iron properly, I was intrigued. I had no idea that taking oral iron was making my nausea worse, especially since my dad, who is a doctor, was so insistent on me always taking iron. My doctor told me that I do not absorb iron when I take it orally, so when I am this iron deficient, he has to infuse me with it instead. Dr. Korkor told me about a talk he had attended recently that shared new information on oral iron with IBD and that there is a new gene in those that have IBD that prevent us from absorbing the iron into our systems properly.
So, now that I have IBD in my jpouch, where do we go from here? Dr. Korkor assured me that taking the cipro with flagyl (I HATE FLAGYL), suppositories and the iron infusion that I should be feeling much better soon. I’m hopeful, because I can’t take these symptoms again! I’m so tired of being tired, it’s incredible.
But, gotta stay positive! There’s always a lesson! Maybe I was getting too comfortable or too confident and needed a reminder that some things, especially healthy, takes time, dedication and patience (which I definitely don’t have.) I’m trying to keep my complaining to a minimum and my head held high, I’ll get through this, too! Let’s do this!
More information about pouchitis, Iron and IBD and Anemia::
Interesting study on oral iron in IBD patients here: http://www.ncbi.nlm.nih.gov/pubmed/16305723
Another interesting article on Iron and IBD: http://gut.bmj.com/content/53/8/1190.full
Information about pouchitis (its Wikipedia, I know, but it explains it pretty well): http://en.wikipedia.org/wiki/Pouchitis
This one has pictures! http://www.medscape.com/viewarticle/805380