‘crohn’s’ Category

History

Hard to fit 19 years of health issues into a single journal entry, but here goes:

1987, went away to college in Pittsburgh, PA and almost immediately became sick. In the summer of 1988 I was diagnosed with Crohn’s disease, a type of Inflammatory Bowel Disease for which there is no cure. However, treatment with Prednisone steroids during a flare-up would put the disease into remission for a year or two.

Starting in the late 1990s, symptoms started getting worse and more frequent, and didn’t respond as well to treatment. I was started on long-term immune suppressants called 6-MP. Health continued to decline, and in 2005 I began receiving IV infusions of Remicade, a powerful immune suppresant which has tremendous success at treating Crohn’s. Treatments didn’t help me at all, however, and were stopped at the end of 2005. I also went through a variety of antibiotics, such as Cipro, Levaquin, Doxycycline, Flagyl, and Xifaxan, to try to control the Crohn’s, as well as one of the secondary symptoms of Crohn’s, which is bacterial overgrowth in the small intestine.

During the fall of 2006, symptoms became so bad that I was in constant pain, and could barely eat because sections of my intestines had become so narrowed due to scarring from repeated cycles of inflammation. I had surgery on October 10, 2006 where 4 1/2 inches of my small intestine was removed where a fistula was discovered, and other sections were cut open and widened in a procedure called strictureplasty.

On October 16, 2006 the pathology results for the removed portion of intestine were complete, and indicated two things: first, the presence of a type of cancer called Hodgkin Lymphoma; and second, no indications of the presence of Crohn’s disease. This diagnosis is very unexpected, so further tests are being conducted to confirm both of these results.

Surgery

Well, I’m home now. Was discharged from the hospital yesterday (Saturday) afternoon. My surgery was Tuesday morning.

Here’s what happened:

I was scheduled to have 8-10 inches of terminal ileum (including ileocecal valve) removed due to an 8 inch long stricture causing partial obstruction. The doctor said there was a chance he’d be able to do a strictureplasty instead (where they cut the intestine open and sew it shut in a different way in order to make it wider, thus relieving the stricture) but it was iffy because of the length of the stricture.

When I met with my surgeon after the operation, he said things were pretty messed up inside me, and I actually had two strictures, and a fistula in between (the fistula hadn’t showed up on any of the x-rays or scans). He cut out 4 1/2 inches of terminal ileum where the fistula was, and reconnected the two ends. He then did two strictureplasties on the two strictures (which was a bit easier since they were smaller than the 8 inches we originally thought). The good news is that this way, I got to keep the ileocecal valve and he didn’t need to touch my colon. The bad news is that he said a lot of the small intestine leading up to the strictured area has been stretched out due to the obstruction, and is about 3 inches in diameter, whereas a normal intestine would be 1 inch in diameter. He thinks this will gradually shrink now that the pressure is releived, but it may not return to normal. Oh, and he removed my appendix of course.

Hospitalization and recovery details below:

I had my bowel prep on Monday — boy was that no fun. Phosphosoda and 4 cups of water in the morning and evening, and a bunch of antibiotics in the evening. I obviously spent a lot of the day in the bathroom, and was feeling really weak and having abdominal pains. Also ended up vomiting some of the evening phosphosoda/water. Had a killer headache all day and night, and wasn’t able to sleep at all during the night (due to headache and bathroom trips and abdominal pain).

I checked in at the hospital at 6am and taken into the pre-op area around 7am. Met with lots of people (anesthesiologist, nurse, techs, doctor, etc.) and got an IV put in, and got a muscle relaxant injection. Once I got that, I was feeling much better. They wheeled me into the operating room, and that’s the last thing I remember.

I woke up and remember being in a fair amount of pain. I don’t actually remember the pain, I just remember that I was in pain. Apparently I was in the recovery room longer than expected (something like 3 hours) due to the pain. I think I was drifting in and out of sleep most of the time. I don’t remember being wheeled to my room, but I remember waking up there and my family coming in.

I had a tube down my nose into my stomach, hooked up to a pump to keep my stomach empty, a catheter for urinating, a weird tennis-ball sized sphere full of a pain killer taped to my side with a tube going into my incision, and an IV with patient-controlled morphine button. Looking down at my stomach, I have a tiny incision in the lower-left (about 1/2 inch long), another tiny one about two inches above my belly button, and a larger one vertically from my belly button down, about two to three inches long. Overall, not bad! The nose tube was definitely the most uncomfortable thing about the whole post-op.

The first day I didn’t get out of bed at all, and just slept or watched TV, clicking the morphine every 10 minutes, and getting a shot of toradol (strong pain killer) every 6 hours. Day #2 I was allowed some clear liquids and got the catheter out, and started walking the halls. I got the nose tube disconnected from the pump, but left in my nose in case they needed to re-enable it. Day #3 was more clear liquids, and got my nose tube out. That was extremely painful. Day #4 I started on soft foods, and was walking around a lot on my own. I got my IV out and started getting percocet for pain. Saturday I went home!

Going to try to keep walking around at home as much as possible, and am hoping the pain will get better each day. Don’t yet know how the surgery will affect my Crohn’s symptoms… need to get past this post-op period first!