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The Disease

Good morning All,

I was diagnosed with Crohn's disease in 2003 after experiencing the usual symptoms of diarrhea, rectal bleeding, cramps, etc. By the way, I am 69 years old, which makes me in somewhat of a different category from most folks with Crohn's, since "they" seem to be stricken at a younger age.

Initially, I was treated with three infusions of Remicade over a three or four month period. (Please keep in mind my age - I'm often stricken with "old-timer's disease" and have difficulty remembering certain things and times.) The symptoms continued and eventually my small bowel totally closed off.

Along with these symptoms, the Remicade lowered my resistance to the level where I was hospitalized with bronchial pneumonia, pneumonia, and congestive heart failure - the last of which required me to be on a respirator for 24 hours.

The decision was made to perform a colon resection since no medication relieved the blockage. The surgeon removed my ascending colon and about three feet of small bowel. I had thought that this operation would have solved the problem, however, it just didn't work out that way.

The situation required a year of trying various methods and medications to reduce the frequency of incontinence. (I have also been diagnosed with severe depression - which, at the time of operation and recovery, was at a peak.)

The medicine that seems to work the best for me is Welchol - three 625 mg pills taken before each meal. It works about 95% of the time, and, I still have instances of incontinence happen without warning. I also use Dicyclomine during periods of constantly appearing incontinence, however, normally, the diarrhea has ended before I can even think of taking this pill.

Recently, I began experiencing pain in my right side - right in the area where the large and small intestine were joined. In late 2008, I was told by the gastro doctor that there was an area of Crohn's at this juncture, but it appeared to be "in remission". Also, in recent years, I have experienced inflammations (sores, if you please) appear on my legs especially, but in various other places too. (Erethema Nodosum, perhaps).

That's about the gist of the situation. This is not my sole physical "problem" - I've had five "stents" implanted over the years in my heart, illiac, and left leg due to peripheral artery disease. But, that's for another forum.

Right now, I'm concerned about the pain in my right side; the continued appearance of skin lesions; and, of course, the continued occurrences of incontinence. My next appointment with the gastroenterologist is early December.

Overall, the disease has caused a severe change in life style. I was extremely fortunate that I'd already retired (1996) prior to the Crohn's onset. Even so, there are limitations on what I can eat, (i.e., no fruit), and when I can be fairly sure of going outside without incidentally experiencing incontinence. Approximately once a month, I am totally surprised, if you know what I mean.

I have been truly blessed by lasting this many years - especially with all of the physical and mental problems besetting me. If anything, I would be pleased to offer hope to anyone who is going through this debilitating disease.

Have a wonderful day, everyone.
Bill - aka Tymentide
 
Hello Bill :) it's good to meet you, though I wish it were under nicer circumstances. Sounds like you've managed to retain your sense of humour despie everything you have been/are going through. Does sound like you may have something going on in the ileum.
The waiting around for appointments is such a drag, so I hope you'll stay and chat with us til you can find out what's going on.
 

xJillx

Your Story Forum Monitor
Hi Bill and welcome! Though Crohn's reared its ugly head later in life for you than most, it doesn't make it any easier. I am sorry Remicade didn't work and you needed surgery. It's a shame surgery didn't offer terrific results either.

Are you taking any medication at the moment? It sounds like there could be some active disease going on considering the pain you are in and the skin lesions. I sure hope your GI can figure out what is going on quickly, and prevent things from possibly getting worse.

Hang in there!
 

Astra

Moderator
Hiya Bill
and welcome

Your sense of humour is such a joy!
I'm glad you found us, hopefully you can find comfort here with us, and a few belly laughs along the way! Laughter is the best medicine.
Lotsa luv
Joan xxx
 
Jill: I'm not taking any Crohn's specific meds. I do give myself a shot of B12 once a month. I have to be very careful of any kind of additional medication because of heart and blood pressure problems. In the past, many meds have negated the one med I take for irregular heart beat. Those meds have caused the Toprol not to work, and the painful PVC's return. It's a very delicate balancing act.

I am wondering if other members of this forum, after months and years of dealing with Crohn's, get to the point where some of the symptoms become so "every day", that we/they miss the fact that something else needs to be taken care of -- like additional medication, test, etc. I deal with a lot of pain from other illnesses, and it's like "well, just deal with it, and go on", which may not be the best approach in the case of Crohn's.

And I want to thank the other folks for welcoming me to the forum. I'm so grateful that I found this area of discussion.

Have a wonderful day!
Bill AKA Tymentide
 
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