Bowel-to-bladder fistulae

[gemmafer]

I was wondering if anyone else on the forum had experienced this. I never read anyone else's experience with it. I had 2 bowel-to-bladder fistulae at the one time and there was air in my urine, blood, recurrent urine infections and pain when I had a "spasm" in my guts that would end in the bladder. I had surgery (right hemicolectomy, ileectomy) in March that also took care of my fistula problems which included removing them and inserting a catheter during my 10 day hospital stay to allow them to heal. I had a stent put in which caused me many problems til I had it removed by cystoscopy.

 

[gracifer]

I had one of these a couple of years ago. They thought it was just a recurring UTI but it really wasn't, so I was put on loads of antibitiocs that made me really sick. I had ALL the symptoms you say above, I also found I couldn't sleep on my right side because I could feel wind going through my bladder.. However by the time they got round to realising that this wasn't a UTI, and had tests done, on the last test it showed it had closed up by itself. However, due to the inflammation it then found another way out - through the navel! Such a delightful disease!

 

[gemmafer]

I had one of these a couple of years ago. They thought it was just a recurring UTI but it really wasn't, so I was put on loads of antibitiocs that made me really sick. I had ALL the symptoms you say above, I also found I couldn't sleep on my right side because I could feel wind going through my bladder.. However by the time they got round to realising that this wasn't a UTI, and had tests done, on the last test it showed it had closed up by itself. However, due to the inflammation it then found another way out - through the navel! Such a delightful disease!

I was put on antibiotics too for months and months. It was finally dealt with when I had a GI appointment with a different doctor and I mentioned my "urine infections". He said it may not be related but if I had air in the urine I had to phone right away, and guessed what happened the very next day! Every time I had an obstruction pain I would "clamp down" on my bladder because I knew the pain would end there, and it scared me to have pain in my private parts. Oh god, how awful for you mine were both internal. How did you have it repaired?

 

[DustyKat]

Hey gemmafer,

I have no experience with type of fistula but I know Grumbletum has so will tag her to this thread.

Dusty. xxx

 

[Grumbletum]

Hi Gemmafer. Poor you - one fistula is bad enough, but two? My story is very similar to you and Gracifer's. I spent months being treated with antibiotics for UTIs until one GP decided to send me for an ultrasound to see if I had another cyst in my ovaries. I had one years ago which also caused me bladder issues.
I eventually got the diagnosis of Crohn's complicated by a bladder fistula and abscess and it did heal for a few months on a combo of Pred, Azathioprine and Infliximab. But when they took me off the Infliximab it opened again and as well as blood and air in my urine, I started to pass faecal matter too, so that's when they decided to operate.
How are you now? Has the surgery solved the problems? And have they put you on any maintenance meds?

 

[Absentminded]

I had a bowel to bladder fistula, (as well as two bowel to bowel ones and one going to my rectum) but yes, I have a very similar story as you guys!
Doctors thought I had recurrent UTIs, repeated courses of antibiotics, for 3 years, which did nothing.
I had an MRI scan last September to see what was going on as my infliximab infusions had stopped working and Humira didn't work either. The MRI showed up the fistulas along with strictures and adhesions to my bladder and appendix and so it was decided that surgery was my best option. In the couple of months leading up to my surgery last November I started getting air and then stool and pieces of food in my urine, which was really horrible and pretty damn upsetting.
My surgeon closed the fistula and sorted out the adhesion (amongst other things) during my surgery, I also had to have a catheter for 7 days afterwards (which I hated with a passion!) but I guess it was to help things heal.
So, since my surgery I haven't had any urinary problems which is awesome! I did at one point think that I had interstitial cystitis, as nothing was working, which has no cure, so to find out that it was a fistula and could be sorted out made me (in a weird way) feel pretty relieved!

 

[gracifer]

Absentminded.. I too thought I had interstital cystitis when it had got to a certain point and no antibiotics where working. It wasn't actually until my mum (I call her my bulldog she has a severe hatred of GP's etc) who came with me and actually suggested to the GP that it could be something more and related to the Crohn's otherwise I have a feeling I would have been on antibiotics for years!!

gemmafer.. my local hospital didn't know what the hell to do with me, so was referred to one in London who actually did have a clue. I had to have a bowel resection, removing the diseased part, removing the fistula and couple inside me that no-one knew about. Because it was all so inflamed I had to have a temporary illeostomy which I'm hoping to get reversed soon! I remember if I lay in bed on my right side I could actually feel gas go into my bladder. Was so so horrible!

 

[gemmafer]

Grumbletum, I didn't know there were 2 until I was opened up. There was fecal matter in my urine too, that scared me a lot! I had a right hemicolectomy and ileectomy at the same time as my fistulae were repaired and I had trouble with the stent that was put in for a while but other than that, surgery was a success and I'm in remission! I started azathioprine last week and I'm waiting on a nurse contacting me to show me the ropes with humira. I know a lot of people get fistulae coming back, I just really hope I'm not one of them!

Absentminded, thankfully my catheter was put in when I was under and it didn't hurt being taken out but I hated having it in. It was a bit uncomfortable and I was feverish when I was in hospital so a catheter sweating against my leg didn't help and I hated it getting wet and tugging in the shower. Originally I was meant to be sent home after 10 days with the catheter but I got it out the day I left thankfully! I thought I maybe had interstital cystitis too. I'd had cystitis previous to all this but nothing as major.

Gracifer, I thought I was going to have an ileostomy too. My surgeon had seemed pretty certain about it but thankfully I escaped it. I hated feeling the gas pass in to my bladder, it was such a creepy sharp pain!

Ahh ladies, it's such a relief to know that I'm not the only one. I know a couple of men with crohn's and it's much harder to relate when it comes to the gritty details.