My Life With Crohn's Disease

My experience with Crohn's and its various limitations is in its eleventh year counting. I was originally diagnosed with this particular form of IBD (Irritable Bowel Disease) in 2000; however I believed symptoms to have been evident since 1996. This very hard to diagnose condition is often confused with many other conditions relating to the bowel. The first time I started to experience symptoms it was chalked up to having Gastroenteritis, then when symptoms kept on arising it was assumed I had GERD (gastro esophageal reflux disease). It was not until I moved to canton, OH that I met a doctor who was in very close contact with a gastroenterologist, for another one of her patients. I was given some preliminary tests, and later referred to the gastroenterologist for further tests.

After receiving my official diagnosis of Crohn's, I received prescriptions to knock down the symptoms of Crohn's and put me in what is called remission (this term is used mainly for cancer, and means the same). The first prescription I was put on was called Prednisone, which is a corticosteroid. Prednisone use is temporary since it is known to soften your tissues and organs. In addition he had put me on Asacol, which is an anti-inflammatory for the bowel. This particular medication was quite interesting to me since it is ingested and does not begin administering medication until it hits the colon. The last medication was called 6-MP (mercaptopurine), this one really scared me, it is what they call an immunomodulator (basically tames down the body's natural defenses). This one was used because in Crohn's the body's own natural defense system would attack the bowel, so the medication would hinder the attack to hopefully lower the amount of "scarring" and irritation of the bowels.

Successfully taking these medications, I managed to control some of the flare-ups to make them shorter or not as painful. That lasted for a little while, I soon became very fatigued, sleeping 12 hours of the day and still feeling tired and exhausted. I eventually started to have some severe symptoms, where I was doubled over in pain. This pain was focused in my lower right abdomen; I put this pain off as a big flare-up and tried to tough it out. After a week of experiencing this pain I was starting to notice something very strange and alarming, I was starting to pass stool and food through urination. After noticing this I went immediately to my doctor, he hospitalized me right away. He performed various tests on me, including barium enemas, x-rays, CT scans, and of course urinalysis.

After collecting all this data, the doctor told me I had what were called fistulas. Fistulas are tubes that connect 2 organs that aren't originally connected, mine from the evidence in tests and symptoms were connecting my bladder and colon. This turn of events in my condition called for immediate therapy and surgery.

The doctor treating me decided to try a medicine originally developed for rheumatoid arthritis, it is called Remicade aka Infliximab. This intravenous medication is an anti-inflammatory. He gave me a single infusion of Remicade, and after a couple of days noticed that the urination problem wasn't as evident. Still he wanted to perform surgery to remove my Ileum, and the four fistulas shown by tests. It was quite an anxious day for me not so much for the surgery, but to be symptom free!

After the surgery I woke up in excruciating pain, finding my stomach stapled up and not being able to move without screaming. I thought to myself the pain will never end! After successfully recovering from surgery I started to experience a better quality of life. No more painful urinations, no more abdominal pains, and of course less frequency of my bowel movements. I still remained on my prescriptions with an exception to the prednisone which was eventually tapered off, and kept on schedule for the very costly but very effective Remicade treatment.

From here on out I figured it was smooth sailing with my condition, but it was far from that. For years and years after that, I had to have my occasional flare-ups treated again with a prescription for a prednisone taper. Time after time this treatment was used and was successful in controlling and putting my condition into a remission.

I eventually moved to Idaho, and met with my new and current gastroenterologist. He assured me he would be there hand-in-hand with me to deal with this condition together. I kept appointments, and started to see once again my symptoms start to have a controlling part of my life again. Missing work, getting fired, and also not being able to afford some of the medications I was taking. The end result from this was me in the hospital again with even more troubles than ever before (fortunately however I was fistula free).

The doctor performed many of the same tests as before, and determined my small bowel was the part under attack now. You see Crohn's doesn't affect just one part of the digestive tract; it can affect you from the mouth all the way to the anus. This new section under attack grew inflamed very fast, causing me further hospitalization for 41 days!

The end result from this episode was another surgery, for a small bowel resectomy, and as well changes to my prescriptions. The first change was from Asacol to Pentasa, which focuses the medication more to my small bowel. The second was to Imuran from 6-MP, my doctor said this change was to be better for cost, and was essentially the same medication. Once again I was also put on prednisone tapers as well to trick condition to put it into remission mode.

Now today, I would have to say I have pretty fair quality of life, but far from normal. I know now to expect a surgery every 5 years for the rest of my life, just because this disease is so hard to control, as they don't know what causes it. My risk to my children is very slim as it does tend to be in the family but not passed on directly. I know that if anything, my kids would be able to live a full and healthy life, and to me seeing this makes everything alright.