Crohns Disease/j pouch
QUESTION: I was diagnosed with UC 10 years ago. The extent of my disease has never left the bottom 70 cm/ 27-28 inches. All pathology/ct/colonoscopy reports say nothing to suggest crohns. This past october was scheduled for j pouch surgery. The mri showed a small rectal/vaginal fistula so the surgeon cancelled and said he thinks most likely I have crohns now but can't say for sure until the colon has been removed. Either way the surgeon said I'm not a good canidate now. I really want the j pouch. How have you done with yours? What made your diagnoses change from UC to Crohns? The GI agreed with the surgeon and have been on Cimzia 4 months now. When does it start to work? My fistula was created during the 3rd incise and drain of a perirectal abscess in 2008 and disappeared in 2009 when I went into remission. My gastro said I got the peri rectal abscess most likely from squeezing intently trying not to deficate on my morning runs with the running group. Told me to quit squeezing to hold it. lol.
ANSWER: Hi Jill,
I have had my jpouch now for 13 years and I have been doing great with it. I had a similar diagnosis, where I only have the disease in my large intestine- which is what made me a good candidate I guess. Even before my surgery my doctors toyed with the idea that I had Crohn's because I also had mouth sores, and a condition on my legs called erythema nodosum.
I was so sick, and meds weren't working so I had to have the surgery without being able to question it. And luckily, it worked out. I was on Pentasa for years, and 2 years ago I stopped taking it and have been doing well without it. I had a fistula and perirectal abscess as well a few years ago but I was lucky that after taking Cipro and regular soaks it fixed itself without surgery.
I'm sorry I'm not familiar with Cimzia. Here are my thoughts not having had a choice, sometimes I wish I was able to keep my UC under control with meds. Not having a large intestine has it's downsides. Every time I go to the bathroom to pee, I have a bowel movement. It can be loud and embarrassing. But on the other hand, I've been living without medication for 2 years now.
The j-pouch is not a cure-all for everyone. I went through a nasty bout of "pouchitis" 3 years in which felt just as bad as UC. Also "cuffitis" is a common problem, where you still have a little of the disease left in the anal cuff which can cause problems. I had that for a while also and was very lucky that the meds worked to put me back into remission. Those along with my fistula is why my doctors still all think I have Crohn's. I think if you have a chance to save your colon with this new drug, you should try everything you can and exhaust every possibility. The j-pouch also has a life span, so keep that in mind- the longer you can wait now, the older you will be before it starts failing.
I hope this helps, feel free to follow up- as well as check out the discussion boards on jpouch.org Lots of great people on there and a wealth of information.
p.s. I'm a runner too- I've never hear of squeezing to hard being a problem!
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QUESTION: Thank-you so much for your insight! I totally agree with your point of view in exhausting all efforts to save the colon. Guess you can say that the grieving process is still in process with the change in diagnosis. When the doctors and surgeons dangled the carrot of the j pouch cure after exhausting all efforts with the UC diagnoses I was still reluctant but scheduled for the surgery. The day before surgery to have that all taken away and change in diagnosis was a big mind blow...
Cimzia is a biologic drug with the possibility of dangerous side effects (lymphomas, stroke, skin problems, infections, neurological issues). It is the last resort before surgery unless a new drug is approved. Remicade never worked. Humira gave me pustular psoriasis on 90%of my body with the pustules testing positive for staph. Humira was discontinued after only 4 months of usage and symptoms were tolerable until the darn skin stuff..my back was really stiff. I went on methotrexate for the psoriasis, cipro for the staph and UC went into remission . A year later thankfully that disappeared and was in remission for another 2 years and no meds. WooWoo!
After 4 months of being on Cimzia I have been treated for thrush, bladder e-coli infection. IV levaquin was used and affected tendons in my heel and hip. No more levoquin for me! Needless to say running has been out of the picture for some time. lol
How have your setbacks effected your running? Your work? Do you struggle with redefining yourself? My biggest fear is not being able to work. Seems that this disease takes away new hobbies/interests to redefine myself. My husband and I are weighing the continued risks of these drugs verses surgical options. The treatment for the side effects of both options are in consieration too. My rectum is a big problem so "cuffitis" would most likely be an issue should the surgeon agree to j pouch. What meds worked for you in treating that? Has your small bowel showed any sign of disease? My job is in the dental field. Would having an ostomy be foul smelling to my patients?
My regular GI doctor referrered me to Mayo clinic in Rochester september of last year. A real eye opening experience at many levels in health care. Rochester is far away and have agreed to work with a larger facility in my state. My appointment getting plugged into this facility is Feb 28. They will be evaluating my condition and work with Mayo to help me.
Well, seeing that you've tried every medication in the book I can understand why you would be disappointed! Especially with all the side effects you had to endure.
My setbacks were pretty minor in the grand scheme of things, and actually all happened before I started running. I did however backpack through Europe after my second bout of pouchitis. I've never let this disease keep me from doing anything I want to do. When I trained for my first half marathon I was a little worried about having to use a porta-potty along the way. However, in all my long training runs I never had to stop mid run to use a bathroom! (Although I was running for the Crohn's and Colitis foundation so they were sure to train in bathroom accessible places) Long ago my Dr prescribed me Tylenol and codeine to take when I knew I would be away from a bathroom for a very long time. It works like a charm for me- I would take it in the morning, and that along with not eating too much before the race I think is what worked. I also take Immodium pretty regularly which is great for work. I'm a flight attendant. I travel, hike, backcountry camp, snowboard, lots of outdoors stuff that keep my away from a bathroom. Sure, sometimes I have to go in strange places but I never worry about that.
If your rectum is a problem area, they may elect to remove it completely. That is a choice between you and your surgeon. Mine told me the risks of keeping it, but the advantage of keeping it he thought was more control over your bms. Being able to hold it in longer. Generally though, cuffitis is painful but is easily treated with a suppository and Cipro (at least for me)
My small bowel has stayed completely disease free. The ostomy does not smell unless you are emptying it. Which is in a bathroom anyway. I had mine as a 16 year old and at first it was devastating until you realize that it's completely unnoticeable. I even wore a bathing suit with it. And, that was 14 years ago! So I'm sure the products are even better now. It's an adjustment, but after being so sick, it was just such a relief to be healthy. I remember almost just wanting to keep it and not get the j-pouch for the fear of going to the bathroom again.
If you want, send me another question and mark it as "private" and I can send you my email. (I realized this post has gotten a tad personal) I would be happy to chat more before your appointment if you have more questions. This is a really big decision, it's good to have as much information beforehand as possible!