Wednesday, August 24, 2011

Living With Crohns: The Aztec Two-Step

One of the biggest issues that affect Crohn's patients lives, particularly those who have small bowel resections and/or gall bladder removal, is the urgent need to find a bathroom when the dreaded diareah hits. For me when the pain starts, I have about 15 minutes to find a bathroom, and the pain and stress can be horrible. One way to keep from feeling like you have to remain homebound is to always plan ahead and be prepared. Knowing where the public restrooms are located can remove quite a bit of stress, and carrying extra clothing in the car or a travel bag can also ease your mind. I try to be honest and open with whomever I am with and explain the problem that I have in advance. Many states here in the USA now have laws requiring that IBD patients have restroom access and cannot be told "sorry, no public restrooms". I actually have a card that states this and have had to show it to shop owners on occasion. Of course, I've also resorted to "do you mind if I just shit on your carpet", and that usually works just as well. The best advice I can give is, keep a sense of humor, don't let this problem keep you from leading a normal life, and always prepare in advance.

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My Crohn's Experience: Introduction

My Crohn's experience started when I was diagnosed with Crohn's Disease at the age of 15, during a time when very little was known about this debilitating illness, and drug treatment options were few. In this blog I would like to recount my nearly 40 years of experiences with this illness; the good, the bad, and the ugly, and discuss current medications available to treat Crohn's Disease, such as Humira, Remicade, 6-MP, Prednisone, and others.

Crohn's Disease is classified as an inflammatory illness which is caused by the body's immune system attacking healthy cells in the intestinal tract, which can lead to intestinal blockage, rupture, sepsis and death if left untreated.

I have had three intestinal resections due to Crohn's Disease and the last nearly cost me my life. I say this not to be dramatic, but to raise awareness that ignoring symptoms can lead to serious consequences. In 1999, I had what I knew was a serious flareup, but instead of checking into the hospital for treatment, I tried to ignore my symptoms. I ended up in the ER with a 105 degree fever, semi-conscious from septic shock, with a heartbeat in lethal arrhythmia and requiring CPR. My intestine had broken open and the septic shock had set in. I spent four days in the ICU after having major surgery to repair my intestine, followed by IV medicines to fight infection. The doctors did not expect me to survive the night, but somehow I did, and I share all of this in order to tell you that if you suspect something is wrong, and you have a high fever and severe abdominal pain, RUN, do not walk, to your local ER. Call 911 if necessary, but definitely do not take chances. Get to a hospital pronto!