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Bowel-to-bladder fistula

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Posted 9/28/2008 5:05 PM (GMT 0)
I have had Crohn's for 35 years, and a bowel-to-bladder fistula for 15 of those years. Have treated resulting UTIs with antibiotics (treatment of Crohn's has been Remicade, imuran, small dose of prednisone).

My Crohn's symptoms are under control but the fistula symptoms have recently gotten worse and surgery (resection) is being recommended again.

Has anyone treated this particular complication w/o surgery? Or, if you've had surgery, what were the results? Thanks.
Posted 9/28/2008 6:10 PM (GMT 0)
Hello CJ102,

I don't have that type of fistula so I can't provide anything useful. I just wanted to welcome you to the Forum. I recall one or two others having bladder fistulas and hopefully they will be by soon. Welcome again!
Posted 9/28/2008 9:51 PM (GMT 0)
Hi CJ102.  I can't give you any advice at the moment as I too am suffering from this and am due to go into hospital for a resection and to have my bladder fixed and also the top of my lady parts!  I've never had surgery for Crohns before though I'm on Azaphioprine, but I am really suffering now.  I intend to tell you all about how it went when I do have it hoping it won't be as bad as I think so I can re-assure any other sufferers.

 

Posted 9/28/2008 10:53 PM (GMT 0)
this happened to me and i ended up having surgery. i actually developed the fistula while on remicade. doh! (remicade is supposed to prevent fistulas and i was on it for 5 years or so before the fistula developed). surgery sucks, but the good part of it is that you wont get a bladder infection (which can potentially kill you) and all/most of the diseased portion of your bowel is removed so you'll end up feeling tons better once you recover from the surgery. plus your bladder needs fixing as that hole is not supposed to be there. from my experience i say do the surgery.
Posted 9/29/2008 12:43 AM (GMT 0)

I had a fistula to my bladder and had surgery. I couldn't use Remicade because I had developed a kidney infection before it was diagnosed (although I had a UTI for about a year on and off). I was in the hospital for about 4 days. I had to have a urinary bag for some time afterwards. Not sure how long but guessing a week because I went back to work 2 weeks after the surgery. The bag may have been the worst part.

I also had part of my stomach removed when I was 16 and the resection when I was about 28. Although I think medical technology has gotten better I found surgery harder as I got older.

Good luck...

Posted 9/29/2008 2:13 AM (GMT 0)
The fistula getting worse is your Crohn's acting up, did the remi work on it at all?...I've had many perianal fistulas all a result of my lovely disease!! If the dr suggest surgery for it, I'd do it, at least you'll get back your quality of life.
Posted 9/29/2008 5:18 AM (GMT 0)
HI,i myself have perianul fistulars ,had a colonoscopy and they found perianul disease dose this meen surgary for me iv been in pain for about a month now really scared to have an op,and how many surgaries can you have before its a prob iv had 2 sml b illium removed.
Posted 9/29/2008 4:57 PM (GMT 0)
I just had this surgery in July and I feel 200% better. I have to admit (and I never thought

I'd say it)....but I kinda missed the cathether when they took it out. It was great sleeping through the night without having to get up to pee every few hours! LOL

 

Posted 9/30/2008 11:35 PM (GMT 0)
Thanks. Just to answer: at first Imuran and then Remicade seemed to keep the fistula symptoms under control. I would just have a little air in the bladder. Now I am having more frequent UTIs, urinary frequency and sometimes urgency. It's just not entirely clear whether my symptoms are all due to the fistula or perhaps another issue (e.g., overactive bladder). Since my Crohn's symptoms are so manageable, it seems crazy to have surgery unless I absolutely have to.
Posted 9/30/2008 11:40 PM (GMT 0)
For those who had the surgery -- anyone in the Boston area? If so, any docs you'd recommend? Also, Miss UK, I deleted your reply by mistake. How do I un-ignore someone?
Posted 9/30/2008 11:57 PM (GMT 0)
To Miss UK: by "lady parts" do you mind me asking what you mean? I ask because I also have some issues with uterine fibroids and there was a question as to whether that was adding to my symptoms. Are you having a hysterectomy in addition to the surgery for the fistula?
Posted 10/1/2008 5:16 PM (GMT 0)
tsitodawg--I have never had any problems with my bladder, but I think pass air when you urinate and a lot of UTI's can indicate a problem.
Posted 10/1/2008 10:13 PM (GMT 0)
Hi CJ102 and for tsitodawg no as far as I know I'm not having a hystorectomy, it appears that my deseased bit of bowel has fused onto my bladder and the top of my vagina meaning that very nasty stuff is leaking into places it shouldn't leak smhair .  It started off with UTI's which the antibiotics just weren't sorting.  I had an MRI scan where they found out that it's like perforated skin where everything is leaking into the bladder if it had been anywhere else I probably wouldn't know about it as apparently lots of people suffer this unaware.  I have got gradually worse over the last two months now pretty much spend my whole day and night on the toilet and constantly having to clean up.  Sorry if I'm being graphic I'm just trying to be helpful blush .  I will be having a colonoscopy soon then in for surgery where they will cut the bowel away from the bladder and vagina and resect the bowel.  I'm just praying all goes ok as I've suffered enough and I'm on my own with a 2 year old! 

All the best of luck to you!

Posted 10/1/2008 10:35 PM (GMT 0)

The symptoms include passing air through the bladder after you pee, frequent UTIs (typical symptoms of those are frequency, urgency, burning when you pee, sometimes lowgrade fever and malaise).

 

tsitodawg said...
What are your first symptoms that you had a bowel to bladder fistula? For the past month and half, I have had urinate so frequently that it is driving me crazy. I have been having sciatica problems and I feel that it might have something to do with that, but I just had my second epideral today and the doctor that did it did not know. He said that if I had a herniated disk and not just bulging disks, than he would be more inclined to think so, but it may be the crohn's. I was on Remicade 10 every 4 weeks for 3 1/2 years, but had to stop it back in March. Ever since getting off remicade, I have had my arthritis become unmanageable and my body just seems to be breaking down. I feel like I always have to pee and when I drink anything I am in the bathroom pretty quick. This along with my flare has kept me in the bathroom constantly and I swear that my water bill from all the toilet flushing is going to be in the hundreds. So, if there were any obvious signs of a bladder fistula that you can share with me, it would be greatly appreciated.

Posted 10/1/2008 10:36 PM (GMT 0)
Thanks. Hope you do well with the surgery!

Miss UK said...
Hi CJ102 and for tsitodawg no as far as I know I'm not having a hystorectomy, it appears that my deseased bit of bowel has fused onto my bladder and the top of my vagina meaning that very nasty stuff is leaking into places it shouldn't leak smhair .  It started off with UTI's which the antibiotics just weren't sorting.  I had an MRI scan where they found out that it's like perforated skin where everything is leaking into the bladder if it had been anywhere else I probably wouldn't know about it as apparently lots of people suffer this unaware.  I have got gradually worse over the last two months now pretty much spend my whole day and night on the toilet and constantly having to clean up.  Sorry if I'm being graphic I'm just trying to be helpful blush .  I will be having a colonoscopy soon then in for surgery where they will cut the bowel away from the bladder and vagina and resect the bowel.  I'm just praying all goes ok as I've suffered enough and I'm on my own with a 2 year old! 

All the best of luck to you!

Posted 4/22/2011 5:51 PM (GMT 0)
Anyone that posted about surgery for a bladder to bowel fistula can you please tell me what type of incision you had? The first time I had this done 18 years ago I woke up with a 9 inch cut up my belly. Are they able to do this laproscopically now?
Posted 7/25/2011 8:35 PM (GMT 0)

melinds said...
Anyone that posted about surgery for a bladder to bowel fistula can you please tell me what type of incision you had? The first time I had this done 18 years ago I woke up with a 9 inch cut up my belly. Are they able to do this laproscopically now?


I don't have Chron's but I have a bowel to bladder fistula due to diverticula disease. I'm due to have 2 operations to correct this! I'm having a colonoscopy in a few weeks and then the first op! I've been told that if the op is elective then it WILL be keyhole - if not then it is a central cut in an emergency as you described!!! So I think the answer to your question is yes!
Posted 1/18/2012 10:35 PM (GMT 0)
I have not been diagnosed with Chron's, but have the bladder to colon fistula. Mine was discovered 11 weeks after a TURP surgery to fix a prostate problem.
They found it while looking to see why I was still passing blood and trash from the surgery. I am having surgery to repair the problem on the 17th of Feb.
It will be laproscopic. The plan is to remove several inches of the colon and if necessary, close the hole in the bladder. I have been told that it will require 3 to 5 days in the hospital, and a catheter for about a week. I will be so glad to get rid of the pain from the infection. I am now on my 4th antibiotic, and am ready for some relief.
Posted 3/8/2012 1:22 AM (GMT 0)
I had that surgery 3 weeks ago this Saturday. It was done laproscopicly. Mine was so bad ( an abcess formed in the fistula ) they had to remove 10 " of colon.
I was lucky that the bladder had healed, and didn't need any work. On the other hand, I did have to have a bag, so I will have to go through it again in a few months to reconnect the original plumbing.

The surgery does have quite a lot of pain with it, but with the meds they have now in iv form, it is tolerable. I would say to you, have the surgery done before it gets out of hand like mine did. It was 10 days before I got out of the hospital. It is also not much fun peeing poop. And talk about stink.

One last thought, the ostomy bag is something I had feared all my life. With the new new bags they have, it is a breeze, and cleanup is simple.
I can now sleep all through the night without having to empty the bag. I have only had 3 accidents, and they were all in the middle of the night.
These were all caused by trying to use the 2 piece bags on a round belly. With the one piece, no problem.

Hope this helps, and best of luck. yeah

fishinjim
Posted 3/8/2012 1:29 AM (GMT 0)
CJ102, the above is a reply to you.
fishinjim
Posted 3/8/2012 9:02 PM (GMT 0)
fishinjim

I just wanted to say I hope you are getting to feeling better. It's sounds like you've been through the wringer with this! It sounds like you have a great attitude and I'm certain that is helpful. Thank you for sharing your story.
Posted 6/17/2012 1:23 AM (GMT 0)
Hi all-

New member and first post, but long-time chron's disease (about 26 years now). I've also recently been diagnosed with colon-to-bladder fistula, after air and blood and bits of stool in my urine. I was treating with pretty high doses of flagyl and cipro, in addition to my usual chron's drugs (humira, prednisone), but got a fever spike and had to go into the hospital for a few days of IV antibiotics.

Now weighing whether to repair the fistula surgically or wait it out. (I had a ruptured colon 20 years ago and most of my colon taken out then. Another surgery a few months later to put me back together and lose the ostomy bag. Another surgery in 2004, with a big incision, to clean out scar tissue from the first two.)

I'd love to avoid another surgery, but wonder about how hard it is to manage the fistula? Right now I'm low energy and taking it easy to heal up and let the antibiotics do their thing. But for most of the 8 years since my last surgery I'm had very good quality of life: episodic flare ups every few months that usually respond pretty well to bump-up in my prednisone (along with liquid diet when i get a flare), but very normal diet and good energy, exercise, etc. in between. Not really having chron's symtoms right now; just the UTI from the fistula.

Anyone out there with experience with a colon to bladder fistula and successfully manage the situation without surgery? Thanks.
Posted 7/14/2012 12:19 AM (GMT 0)
To cj102 and any others who are interested. I had the colon / bladder fistula which was repaired on 2-18-12.
Mine was not from Crohn's but from diverticulosis. The doctor removed about 10" of colon, and the bladder had healed it's self with antibiotics so there was nothing to repair there. The bad news was that I have had to wear an illeostomy bag for the last 5 months. That is something you can deal with, although it is a challenge getting used to the diet.
If you are interested in the diet, look up low residue diets. There is a lot of info out there.

The good news is, next Friday, 7-20, I am having surgery again to reconnect the colon. Had a colonoscopy done yesterday to stretch the scar tissue back to normal size to facilitate the reconnect, and the doctor said that I didn't have to come back in for another colonoscopy for 5 years. Another plus is no more diverticulosis.

I plan to celebrate the following Friday with Brats, sauerkraut, tater salad, and beans. That has been the hardest part, no fiber, corn and beans. Here in Texas, we do love our Tex-Mex food.

If anyone has questions, I will try to answer.
Posted 10/7/2012 1:30 AM (GMT 0)
Hi, I'm new; I just found you folks when I was looking up some symptoms I have recently experienced (watery diarrhea). I have been suffering from a bowel to bladder fistula for about two years now due to diverticulosis. I finally qualified for disability coverage since the hole is large enough that I have the bladder fill on a nearly daily basis now.Anyway I will now, hopefully, be able to get this worked on. It has been miserable, and the fact that there is so little information on the subject (at least that I've found) has made the whole experience an experiment in what to eat, how to live. If anyone here has had a good or bad experience with surgeons in the Ohio area I'd appreciate a heads-up. Thanks
Posted 11/21/2012 4:18 PM (GMT 0)
So nice to hear from people that know what its like. Had Crohns for 6 years. Just Went on the bladder and bowel foundation website and pretty much nothing on there!!! I have bladder bowel fistula and get by dealing with infections and the air which is really uncomfortable. Very lucky really, i just struggle with public toilets as its so noisy to urinating and i do take my time in the toilets at work. If i use any kind of disabled toilets for privacy and lack of embarrassment i just get dirty looks and snide under breath comments. Any advice/ ideas? Probably no answer really...
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