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08-02-2014, 12:27 PM   #1
Sailorluna
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possible bladder fistula

So week 3 of uti just ended. I am about to start antibiotic #4. Finally being heard about it being a fistula. Can anyone comment on how that is treated? I can't imagine a seton works
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Symptoms since 98
Resection and diagnosis June 2010
3 fistulas
abscess drained 6 times (so far...)
currently 2 seton in place 1 since 9/11 the other 4/14
1 strange small air pocket with an 8 cm sinus track leading into the great unknown
methotrexate weekly
folic acid
2 lomotil
2 Welchol
B12 injections (monthly)
Remicade

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Goodbye Humira
Goodbye Cimzia
Goodbye Azathiprine
08-04-2014, 04:39 PM   #2
Grumbletum
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Oh dear :-( Have you had a CT or MRI to establish if there is air in your bladder? I was prescribed Infliximab to try and heal a bladder fistula and persistant inflammation in the TI. I did get a lot of relief from that and they thought I'd gone into remission, so stopped the Infliximab after the loading doses. But I started getting the UTIs and other symptoms again after 6 months.
I'm afraid surgery might be the only way to deal with it. Trusty Dusty warned me that would probably be the case and she was right. They were just going to resect the part of the bowel where the fistula originated and the damaged piece of bladder, but removed my caecum and IC valve because they were also badly affected.
After 2 years of almost constant UTIs and near urinary incontinence, surgery was the best thing to happen to me.
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Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
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08-04-2014, 09:31 PM   #3
Sailorluna
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Hi Grumble, nothing yet. Four rounds of various antibiotics to make the uti go away. Strange results from the urine culture just makes me think it is possible. I am traveling for the next couple weeks but when I get back I expect an mri is in my future.

I had a resection for a blockage a few years ago, are we talking about the same type if deal? Do you have a catheter for a while after?
08-05-2014, 01:56 PM   #4
Grumbletum
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I had constant UTIs too, or at least the symptoms of them. Sometimes I'd test positive for infection and sometimes not. Other signs of a fistula are passing air when you pee, bubbly urine and eventually I was passing small amounts of stool when I peed.
Yes, I think it's the same type of deal as your previous surgery. Mine was laporoscopic. I had a catheter for a week after surgery til they did a cystogram to make sure that my bladder had healed up OK. TBH, I didn't mind the catheter. After two years of the UTI nightmare and worrying about urinary incontinence, it was kind of refreshing!
Hope the whole thing doesn't interfere too much with your travels.
08-05-2014, 03:03 PM   #5
Sailorluna
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The two antibiotics are helping with the fevers etc. But bubbly pee...man I have been having that for months. Guess I was hoping it would not mean anything. Is that the air coming out? I have not passed gas there like I do with the other fistulas.

Did you see your GI for this? A urologist? Straight to a colorectal surgeon?
08-06-2014, 11:29 AM   #6
Sailorluna
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mri on Friday when I get home. wonder how quick they react? they were awful anxious to get me in when the gi finally heard what was going on. Trip two starts Wed morning hope they dont make me miss it
08-07-2014, 11:20 AM   #7
Grumbletum
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Yes, Sailor, the bubbly urine is the caused by air passing from your bowel into your bladder. My local GI said he could see that on a CT scan I had, along with an abscess. When it and the fistula didn't heal on Pred and Aza, he referred me to hospital on the mainland for surgery.
When I finally got there, they did a colonoscopy and another CT scan and told me that the abscess had shrunk, but that my TI was still very inflamed. They recommended trying the Infliximab.
After the brief respite, I emailed my IBD nurse when I started getting symptoms again and he spoke to my GI who called me over to the mainland for a couple of days for tests. An MRI showed that the fistula had opened again and the colorectal surgeon came to see me the day after I got the result. He said he could do the surgery the next day.
I was a bit taken aback and wanted time to think about it, but he said the constant UTIs were putting my kidneys in danger and why didn't we just sort it while I was there, so I agreed. I'd had chronic back pain since first becoming ill and that went after the surgery.
08-08-2014, 12:45 PM   #8
Sailorluna
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thanks Grumble. I had the mri now just waiting. Meds dont seem to work that great for me. Given the choice I will likely just get the old slice and dice
08-08-2014, 01:17 PM   #9
Grumbletum
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From what Dusty told me from her experiences and from what I've read, internal fistulae are notoriously difficult to heal with meds, and that's what happened in my case. I would get some relief from antibiotics, but the symptoms would come back when I stopped them.
Are you still dealing with the other fistulae as well? Jeez, you poor thing. Damned disease :-(
08-08-2014, 07:27 PM   #10
Sailorluna
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Thanks Grumble - I appreciate your insight. Its amazing what a person can deal with if they are not willing to give in. I have 2 little girls and one is a worrier so there is no choice but to suck it up and take the bull by the horns. This will be fistula #4 for me - the others can not be removed seton is as good as it gets.
08-30-2014, 05:42 PM   #11
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Hey, how are you doing? Did you get results of the MRI?
08-31-2014, 09:00 AM   #12
Sailorluna
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Hi Grumble. I was sent to the surgeon who told me they did the wrong kind of mri. He doesn't think i have a bladder fistula - and the last multi week round of combined antibiotics seems to have gotten rid of the uti. However the mri showed a new collection of fluid by my backbone with a sinus track leading up 8cm along my spine. My gi went back on vacation in the meantime so I was expecting a call last week to schedule the other kind of mri (with the drinking) or a ct scan so they can get a better look at the whole thing. They want to go to a colostomy but because of my anal stricture say it may never be reversed if we do it. I am pushing for a few months on remicade since I have not tried it yet. Sigh. I will call Tuesday and get an update on what they have cooked up.

Thanks for checking up on me.
08-31-2014, 03:54 PM   #13
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Oh man, I wish it was better news :-(
09-09-2014, 05:11 PM   #14
Sailorluna
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The new ct scan confirmed it - bladder is ok!! Yay. Also, they have decided to try remicade before a stoma. Phew!
09-09-2014, 06:57 PM   #15
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Excellent!
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09-10-2014, 04:48 PM   #16
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Yes, result :-) :-) I sure hope the Remicade does the trick. Hang in there, girl x
09-19-2014, 11:42 PM   #17
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Out of interest, what are the symptoms of a bladder fistula? I have felt strange pressure from my bladder too recently and am wondering if it might be that
09-20-2014, 08:44 AM   #18
Sailorluna
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Persistant uti, matter in the urine, and my surgeon asked about green urine as a sign but I have never heard of that. I am sure there are other signs. Bubbly urine too... but be careful I though for sure my bubbly urine meant something but it was normal
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