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bladder fistula and worried about PRED help!

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Posted 11/2/2010 2:22 PM (GMT 0)
Hello Everyone, new to the forum. After going for lots of tests, finally a CT scan has picked up why i have so much brown stuff in my urine, a small intestine to bladder fistula with crohns. i am in great pain and have been taking cipro for an antibiotic, my GI gave me Pred and i have taken 9 pills yesterday. i am scheduled to see a surgeon in a month but i don't know if i can last that long. I am also worried about taking Pred because off all the bad side effects. can anyone help me and give me advice.
Posted 11/2/2010 2:31 PM (GMT 0)
Hi Mikey,

It took forever for my bladder fistula to be dx'd a few years back - took a trip to urologist and a charcoal slurry test to convince them I wasn't crazy and imaging 'stuff' in my urine. I was on cipro, Pred, and Remicade. Nothing worked to close it. Ended up in surgery.

I don't think you need to worry about long-term effects from Pred if you are only going to be on it a month or two. That being said, some folks (like me) don't do well on Pred short-term either - paranoid, manic, psychosis, along with the more pedestrian side effects like insomnia, night sweats, insatiable hunger, weight gain, moon-face, etc.

Hang in there!
Posted 11/2/2010 2:34 PM (GMT 0)
Pred is a fast acting med, you should start feeling some relief in a few days. I am sorry to hear about the fistula and hope they get you feeling better soon. Hugs!
Posted 11/2/2010 2:37 PM (GMT 0)
Hey babs, since your a rare person who had this condition, could you tell me more about how the surgery went, how long was it before they took you into surgery and how long did it take to get back to a normal urinary and bowel state>
Thanks alot
Posted 11/2/2010 3:06 PM (GMT 0)
They postponed surgery for several months to see if the Remicade would work - which it didn't. The surgery was pretty routine but could not be done laproscopically, so I have a navel to pubic bone incision/scar. Repaired the fistula and removed 7 inches of large intestine.

I was hospitalized for 5 days and was on a self-controlled pain pump (awesome!). I was discharged once I produced a 'normal' BM - poop was cause for celebration! My urinary tract worked normally right away although I was cath'ed for a few days post-surgery. I was in a lot of discomfort for the first few weeks. Was off work and couldn't drive for three. Incision took several months to heal and close completely.

As with any intestinal surgery, there are risks, including a colostomy. Your GI and surgeon will review with you. I developed an unbilical hernia due to surgery a few years later which was repaired laproscopically.

I was in remission for about 7 years afterward. Just recently started flaring...

Hope this helps. Happy to answer any other questions.
Posted 11/2/2010 3:12 PM (GMT 0)
Thanks Babs,
Were you in alot of pain, before the surgery? i know i am, does the pred help with the pain?
Posted 11/2/2010 3:35 PM (GMT 0)
I had some discomfort from a bowel stricture that accompanied the fistula. Dr. gave me Rx'd pain meds because OTC drugs didn't touch it. I have never experienced immediate pain relief with pred.
Posted 11/2/2010 9:54 PM (GMT 0)
i had to have surgery to remedy that problem.
Posted 11/2/2010 10:11 PM (GMT 0)
I am sorry to hear about your current situation- should you maybe go to emergency or to a dr who can see you earlier if the pain is so bad? I am not sure holding out a month and hoping Pred will do it for you is the safest plan... but may be the necessary one. Just make sure you take care of yourself and call your dr if you need to. I really hope you get some relief soon, it sounds so challenging. I usually find Pred takes a week or so to help my symptoms and pain reduce, but I have not dealt with a fistula so it may be different for you.

best of luck

B
Posted 11/3/2010 2:11 AM (GMT 0)
Pred won't help a fistula...personally I think it will inhibit the healing of it especially if you have to have surgery. I would talk to a good colorectal surgeon asap. I have had many fistulas and have never been put on pred. Since you just started the pred, at least you will be able to stop it if that is what your surgeon wants.
Posted 11/3/2010 4:10 AM (GMT 0)
Had my fistula for nine yrs. Was on 6mp and remicade, most of that time it was manageable. June 09 got a lot worse. Real bad UTI till my surgery April this yr. Had the catheter for sixteen days to make sure the bladder was healed. After that no more air or fecal matter when I peed.
Posted 11/3/2010 4:46 AM (GMT 0)
like i said earlier, the same thing happened to me early in 2005. the docs told me that if i didnt have surgery it would never heal on its own and i'd die of a bladder infection. after surgery i've never had any problems or complications. it was well worth it.
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