Bladder Fistula??

[thisisme]

Hey everybody... Just looking for an opinion (and yes, I do have an appointment with my GI on Wednesday to discuss... I am just impatient!!! lol)

A recent MRI showed that my Terminal Ileum and bladder were "connected", therefore explaining the significant pain I had in the "bladder region". I had a cystoscopy done, and it showed that a fistula had not yet opened into the bladder as of yet (but there was a large dent into the bladder showing where it was connected), and as such my GI has me starting Remicade to try and "stop it in it's tracks" before it opens. I am still waiting for Remicade to get setup (insurance issues, but now that's finally been sorted!) ... but lately I have been having some "newer" symptoms, and I am getting worried that the fistula has in fact opened into the bladder?

I have been on Prednisone tapering off from 40mg (tapering 5mg a week). The pain was pretty much gone for the first 2 weeks, but once I hit 30mg it started to come back (although pretty minor). I am now down to 25mg and the pain is back and getting much worse.

The thing I am concerned about is that the pain when going "#1" is pretty significant. I havent seen any "debris" that I could tell.. but I have started noticing the odd very tiny bits that kind of look like human tissue? Not much though. And then yesterday there was also some blood. All in, the "#1's" have been pretty dark and not too great smelling! (Sorry for the details!!!)

Has anyone else experienced anything similar??? I am paranoid, because my GI said the one thing she doesnt want is for the fistula to fully develop and "open", as she said that these are very "messy" to deal with?! Not really sure what that means though!!!

Any advise or thoughts are appreciated!!! Thanks all

 

[Grumbletum]

Hi Amy
Sorry to hear that you are having issues and I totally agree - waiting for tests, results, appointments can get so stressful.
I've just had a resection and partial cystectomy to remove a bowel to bladder fistula. So many of my symptoms were as you describe.
I had the bladder symptoms right from the onset of my Crohn's and it took a while to be diagnosed because I didn't suffer much from D, so they thought I had appendicitis, UTIs etc. Bladder urgency, frequency and pain in my ileal area and also in the middle of my stomach lower down were the worst symptoms along with ever darkening urine which eventually got very bubbly. I was eventually diagnosed with the fistula and an abscess on my bladder.
I was treated with the drugs you see in my signature, along with a couple of courses of antibiotics and I think the fistula did heal for a while.
But then round about June/July this year, I started getting symptoms again that started with shooting pains down into my bladder area, then eventually I began to pass small amounts of fecal matter and, like you say, what looked like tissue. I didn't feel as ill or lose weight like I did last year, but when they went in to remove the fistula, they found that my caecum and ilecaecal valve were very inflamed again and damaged, so removed them too.
I'm now recovering well and really enjoying having an almost normal bladder again.
I really hope your fistula hasn't broken through, but from what you are saying, it must be getting pretty close :-(
Please fire away if you have any more questions. Me and the rest of the gang here will be here to support you as much as we can when you need it.

 

[thisisme]

Thanks for the response Grumbletum... It sounds like your diagnosis journey was very similar to mine... They never even thought Crohns, and were on the side of endometriosis for a couple years until an MRI came back showing the bladder and bowel being connected... one quick colonoscopy later and I ended up a Crohnie. I very rarely had D (although I can say my BMs were never completely "normal"), and most of my symptoms came in the way of UTIs, bladder urgency, and a lot of general bladder and ileal pain.

I am hoping the Remicade will work as she plans and close the fistula (if it in fact is opening)... but I am quite concerned about the possibility of surgery down the line! (although, it seems all to common for us to have to go through these procedures). I am currently experiencing probably very similar shooting pains down through my bladder area, it is probably the most unsettling.

I think you are right when you say that if my fistula hasn't broken through, it is probably really close , but it is very good to have support from a forum such as this! And at least convenient that I have an appt with my GI this week to discuss it with her. I guess it is just a waiting game right now

I hope your recovery is going well, and it sounds like the surgery was the best thing for you! Back to an almost normal bladder sounds fantastic!
Thanks very much for your response! It seems like everyone experiences things differently, and different complications.. but it is good to find people who have similar experiences to your own

 

[Ihurt]

Hi there.

I am so sorry you are dealing with all this. I am not sure about fistula situation, but I do have bladder issues. I have a disease called interstitial cystitis(a bladder disease). I know when I am flaring I get those pieces of tissue come out as well. I was told this is from the bladder being inflammed. I am guessing you were checked for bladder infection already??

Hopefully someone else with more experience with fistulas will chime in. I am guessing that the risk of getting bladder and urinary infections are going to be very high if you develop a fistula from the intestines to the bladder due to fecal matter being introduced into the bladder. Maybe you should call your GI's office and let them know that things have changed and you are more concerned(i.e. more bladder pain, blood and darker smelly urine). Maybe he can get you in sooner... Good luck and hope you get better soon.













QUOTE=thisisme;514749]Hey everybody... Just looking for an opinion (and yes, I do have an appointment with my GI on Wednesday to discuss... I am just impatient!!! lol)

A recent MRI showed that my Terminal Ileum and bladder were "connected", therefore explaining the significant pain I had in the "bladder region". I had a cystoscopy done, and it showed that a fistula had not yet opened into the bladder as of yet (but there was a large dent into the bladder showing where it was connected), and as such my GI has me starting Remicade to try and "stop it in it's tracks" before it opens. I am still waiting for Remicade to get setup (insurance issues, but now that's finally been sorted!) ... but lately I have been having some "newer" symptoms, and I am getting worried that the fistula has in fact opened into the bladder?

I have been on Prednisone tapering off from 40mg (tapering 5mg a week). The pain was pretty much gone for the first 2 weeks, but once I hit 30mg it started to come back (although pretty minor). I am now down to 25mg and the pain is back and getting much worse.

The thing I am concerned about is that the pain when going "#1" is pretty significant. I havent seen any "debris" that I could tell.. but I have started noticing the odd very tiny bits that kind of look like human tissue? Not much though. And then yesterday there was also some blood. All in, the "#1's" have been pretty dark and not too great smelling! (Sorry for the details!!!)

Has anyone else experienced anything similar??? I am paranoid, because my GI said the one thing she doesnt want is for the fistula to fully develop and "open", as she said that these are very "messy" to deal with?! Not really sure what that means though!!!

Any advise or thoughts are appreciated!!! Thanks all [/QUOTE]

 

[Grumbletum]

It's good you've got the appointment with the GI this week. Do you know when you can start on the Remicade? I felt brilliant on it after the second infusion, but the way the system is in the UK, they stopped it after the third infusion cause I'd gone into remission. Here's hoping it can catch your fistula before it goes any further. Let us know how you get on on Wednesday.

 

[thisisme]

Thanks ihurt - And yes, I get UTI's quite often, and have over the past couple years. I will be seeing my doctor on Wednesday, and hopefully she can help me out! We shall see...

Grumbletum - I went through some issues with insurance, but everything finally went through for the financing today, so I should hear from the clinic to schedule my first Remicade infusion this week. I'm quite excited, as it sounds like most have very good results from it... fingers crossed!

Thanks for all the helpful advice and support!
Will keep you posted after Wednesday at the doc's

 

[D Bergy]

I had air and chunks and bladder infection when my fistula broke through.

Men generally do not get bladder infections often.

I hope the Remi does the job. I had surgery but I had more than one fistula, and a massive infection.

Dan

 

[thisisme]

Looks like Remicade will be starting within the next week or so! so hoping for the best!!!... although now I am concerned I may have a UTI which will delay the start of Remicade... ahhh complications. Hope to hear more from the GI tomorrow, and hoping to hear good news re: fistula NOT opening! lol (although, doubtful I will hear much about that tomorrow)

 

[Grumbletum]

Best get checked for a UTI so they can get you on antibiotics to clear infection, if any. Often I would have all the signs of a UTI, but negative sample tests.
My GI put me on a course of Cipro and Metrodinazole last year and I'm sure they helped close the fistula.

 

[thisisme]

So I saw my GI this morning, and she does think the fistula has likely opened into the bladder
She has ordered a urine culture, and given me a round of Cipro as well. Fortunately, given where I am in the Remicade process, she is confident I shouldn't have to delay my first infusion.... as she believes the antibiotics should be done with by then

She has also put me on Imuran given the severity of the inflammation, and is hoping that Imuran in combination with the Remicade (for the fistula) will get me sorted...

I also have to increase my prednisone for the time being :voodoo: ... grr.

Will see how it goes!

 

[Grumbletum]

Sounds like a good plan of attack

 

[hainman]

hi thisisme.i had one and it was bloody sore,pi55ing out parts of food,i was going in for a colonoscopy and just happened to mention to one of the nurses at the ranch(where you wait on the bed) i said i have a problem peeing and its bits of food,is it related,she said NO....just before the sedation kicked in during my colonoscopy i said to the specialist and he said,im glad you brought this up as yes it is connected,when i had my resection they operated and removed the join,but had to leave the bladder to heal on its own,which kept me in hospital that bit longer.....
hope it works out ok

 

[thisisme]

Wow, good thing you were able to get it mentioned to the specialist before you went under for the colonoscopy!
I did hear that they typically leave the bladder to heal on it's own after such operations, but glad to hear they at least took care of your fistula!
Hopefully Remicade helps me out in that department... now just to patiently wait for November 1st so I can start!

 

[Grumbletum]

Hey, how are you doing? Just wondering how things are going on the Remicade?

 

[thisisme]

Hey!
Things seem to be going alright... The Remicade seems to have a good hold on my main crohn's symptoms (which was primarily pain!)... The fistula on the other hand seems to so far be holding strong. I just got over a UTI a couple of weeks ago... and now I am pretty sure I have another one
When I talked to my GI a couple weeks ago, she pretty much said that remicade isn't nearly as effective on the bladder fistulas, but we are hoping for the best. Basically, she advised that if I keep having the UTI's, then its likely not helping, and surgery will be the next course of action
But, shes in a wait and see game! And... ive only had 3 remicade infusions... so I'm still crossing my fingers for some fistula improvement!

 

[Grumbletum]

I'll keep my fingers crossed for you too. All the best for the New Year x

 

[M30]

Hey!
Things seem to be going alright... The Remicade seems to have a good hold on my main crohn's symptoms (which was primarily pain!)... The fistula on the other hand seems to so far be holding strong. I just got over a UTI a couple of weeks ago... and now I am pretty sure I have another one
When I talked to my GI a couple weeks ago, she pretty much said that remicade isn't nearly as effective on the bladder fistulas, but we are hoping for the best. Basically, she advised that if I keep having the UTI's, then its likely not helping, and surgery will be the next course of action
But, shes in a wait and see game! And... ive only had 3 remicade infusions... so I'm still crossing my fingers for some fistula improvement!

Thanks for coming back and sharing the updates. Keep in mind that Remicade will weaken your immune system and make you more susceptible to infection.

Are you on cipro or flagyl / metronidazole?

 

[thisisme]

Thanks!!!

I've been experiencing the weakened immune system like crazy... currently have a cold and bronchitis, and the GI thinks its also possible the UTIs are due to the weakened immune system..

Right now Im not on cipro or flagyl... She hasn't mentioned either to me? I know I was on Cipro at one point, but just to treat a UTI

 

[CamsMom3]

Hi,
My son is the same exact case as you, except his HAS developed. The doctors can never see the actual opening with imaging, but his started like your; pain, then matured to an extreme UTI with blood; the doctors decided to put him on bowel rest: no food by mouth except clear liquids and TPN (nutrition IV). He has been on TPN for months now. We do it at home after being in the hospital for weeks. He could not have food for a little over a month. He now can eat, but with his TPN. We see the doctor in a couple weeks. They try do do everything possible to avoid surgery, but we think he will still have to have it. After all the efforts to close his fistula, he still has bowel and gas bubbles coming in his urine "#1". And yes it has a strong smell! Hopefully yours won't get worse.

Current meds: remicade infusion, methotrexate, vitamin d, tapered off prednisone recently, folic acid, fish oil

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