Tuesday, January 22, 2013

Celiac's and/or Crohn's

My Situation
I am feeling much better now. The clot has not returned. Every day that it does not return is one day closer to the promised land of being a healthy person. I don’t know exactly what they did differently to stop it from clotting again but the surgery was more aggressive in several ways so something worked. I am still very weak and get lightheaded if I move around much but these are all common effects of just being in bed so long. I still walk funny because the entry point was my ankle so I can not put pressure on it. My leg was all kinds of swollen but now looks relatively normal. I think I have a small clot in my calf but that is not surprising. The doctors are not concerned with small clots.

I will have a procedure done tomorrow, hopefully recover on Wed, and maybe leave the hospital on Thurs. I hope to be at work on Mon but my hopes and predictions have been wrong so far and I am not putting much weight behind them.

Celiac Disease and/or Crohn’s Disease and/ or something else?
I had occasional GI issues when I lived in Kenya and Tanzania and they mostly went away when I came back to the US. I also have anemia which has shown up pretty regularly over the last decade or so. I figured since I had decent insurance I should resolve all my health issues before I went to a new country. I eventually went to a GI doctor who suggested a number of tests. I did all of these before Christmas and got the results back a couple weeks ago. I phoned the doctor’s office and the secretary said “Oh, you have Crohn’s Disease.” She faxed the results and I had one sheet that had a big check mark next to Celiac’s Disease and another with a big check mark next to Crohn’s Disease. The Crohn’s sheet had “probability of complications chart” with 45% chance of complications in the 1st year and the probability going up every year. I have no idea what complications they mean but it sounds bad. It was pretty bad to go from thinking you are a generally healthy person to now knowing you have 3 lifetime diseases- some autoimmune disease that causes me to clot like crazy, Celiac Disease, and Crohn’s Disease.

I know what Celiac’s Disease is. A friend of mine has it and basically you can’t eat gluten or wheat products. The big things verboten are all bread products though there are a bunch of foods with preservatives that have gluten. If you don’t eat them your stomach is happier, you absorb all the right nutrients, and you are generally healthier. I am pretty flexible in general and can switch my diet if it makes me healthier. The thing that bothers me most is that I hate to refuse food. I believe food is one of the great connectors of people. Accepting and eating food from someone is a sign of friendship, love, and companionship. To refuse food is to refuse all of these things and to, at a basic level, reject a person and their culture. I also like to be low maintenance, not asking for special things or to make waves. Now, if I have this disease, people will have to make other arrangements whenever I eat at their house or we talk about going out to lunch. I also have never worried about food. I generally eat healthy food but have never calorie counted or had to worry about food. Now, my life is slightly more complicated in that I need to pay attention to labels and learn a whole new gamut of information. I am told that the assay I took is 95% accurate and that it would explain my anemia.

I have never quite figured out what Crohn’s Disease is. I have read all kinds of literature but it never seems to add up to something understandable. The definition is something meaningless like “inflammation of the GI tract”. The symptoms seem to vary quite a bit. A fellow grad student had it and my memory was that he had incredible pain in his stomach. The Wikipedia page told of people becoming retarded and had pictures of people with disturbing skin rashes. My brother told me of his neighbor with it who, because of it, leads a painful and useless life and cannot leave his apartment. Everything about it sounds horrible with painful and debilitating long term consequences. The GI doctor left a voicemail saying I have the disease and the results printout looks very definite with positive results and big check marks. The GI doctors at GW didn’t seem to think the assay is very accurate and that nothing in my history suggested that I have Crohn’s Disease. They did a CAT scan looking at my stomach which showed my stomach linings have not hardened which means there is a at least nothing exceptionally advanced.

When I received these results and talked to the GI team they said there was only one way to tell if either of these results was accurate. The test is called an endoscopy/ colonoscopy and involves a camera checking out your whole GI tract as well as some machine which takes bits of your stomach for later analysis. I was supposed to do the test last Monday but the GI team balked because I had an occasional high temperatures and my heart rate was high, both of which are side effects of clots. They are used to doing the test as out-patients and commonly delay the test if someone doesn’t feel 100%. This delay frustrated the hell out of me and my blood doctors, who are looking for a possible cause of my inflammation. My main doctor found a more senior GI doctor who is more used to working with non-traditional patients and I will receive the test tomorrow. The test will also say yes or no to a whole variety of other GI issues and things like parasites or other leftovers from Africa.

When I got the blood tests about Crohn's and Celiac's I showed them to one of the residents on my hematology team and he got very excited, photocopied the pages, and disappeared for several days. I found out that they were excited because this could explain everything that is going on. GI diseases like these can cause massive inflammation which can lead to both autoimmune disorders and cause clotting. They were especially excited about Crohn’s, as it often causes pretty severe inflammation, which my body was showing. The GI doctors on the other hand were saying- Don’t blame this on GI issues. His history is pretty mild and shouldn’t cause massive clots like this.

I was put on a very sensitive blood thinner two weeks ago in anticipation of this endoscopy but my blood has to be checked every 6 hours to be sure it is in “therapeutic” range. The situation is not ideal as my arms are like pin cushions with people often trying twice before giving up and finding the local blood drawing expert. The normal goal for the drug is 60-70 but for me it is 80-90 and my level regularly alternates from 30s to 120s in the course of a few hours. Even with the blood thinner my blood usually clots immediately so there is no bleeding from the blood draws. The hope is that with the endoscopy over I can go on a normal blood thinner by tomorrow night. There is considerable debate as to whether to take me off the blood thinner. It is dangerous to have thin blood while chunks of your stomach are taken out but my leg can also clot up again within hours. I never heard what the results of the debate are.

Being in a hospital you see all the misfortunates of the world. Theoretically, I like to know that unfortunate people exist because it gives me something to work for and a reason to live and improve the world. Life is not just people getting bigger houses or snappier cars. I have had maybe 10 roommates who represent about as diverse a group of people as you can imagine. Generally people don’t affect me emotionally but the latest roommate gets me close to crying at times and other times I just want to yell at him to shut up and stop whining. He is blind, hard of hearing, can’t do anything, and is confused about the world. He still thinks JFK is prez. Every time anyone does anything too or for him he yells out constantly “Please don’t hurt me!” It must be tough to live in a state where you don’t know what is going to happen to you and to have no control over what is going on. Not that it was lacking before but I have much more respect for nurses now. 


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