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06-24-2011, 03:10 PM   #1
JC1919
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Fistula Advice

Has anyone ever experienced a fistula from the colon to the bladder? My GI has started me on Remicade to try and heal mine, but after two infusions i'm experiencing little improvement in the symptoms. How long should I expect the healing to take? He said I can have surgery if I want, but not really sure if I should go down that route? Any advice would be appreciated
06-24-2011, 04:27 PM   #2
Grumbletum
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I've got one too - small bowel to bladder :-( Just finishing a course of antibiotics they gave me to see if it would close. I think they've helped a bit. I've kind of forgotten what my normal bladder habits were like.
My GI told my GP that they would try Aza or Humira if the antibiotics don't work. From what I've read, they are difficult to heal with meds. But I too would love to hear of anyone who has non-surgical success.
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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
Helen x
06-24-2011, 04:51 PM   #3
JC1919
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I've had the fistula for 2 months. I've been on 150mg Azathioprine for the whole time. The only meds which seem to give relief are Metronidazole, but once the course is finished the symptoms return. Are you getting air and debris in your bladder? Do you find it painful to urinate?
06-24-2011, 04:52 PM   #4
DustyKat
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Hey JC,

My son's fistula's originated in his ileum. I see yours is located there Grumbletum, is that where yours is too JC?

He was in hospital at the time and being over the New Year/January break he was reviewed by 4 colorectal and 2 GI's, one of which was a Crohns specialist. They all said the same...fistula's that arise in the ileum are very unlikely to close with medication. Even though Matt wouldn't have been a candidate for biologics, he had an abscess, I asked just the same about their effectiveness with fistula's located where Matt's was and they said that biologics are really only effective in healing perianal fistula's.

Matt had a drain in for 3 months prior to surgery and during that time the fistula did not heal and he was taking antibiotics and Imuran throughout that time.

All the best guys and good luck...
Dusty. xxx
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06-24-2011, 05:01 PM   #5
JC1919
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Hey Dustykat,

My fistula originates in the Sigmoid Colon. The symptoms are really unpleasant and I just want to get it sorted so am considering opting for surgery. How long did your son take to recover from the surgery? Has he been free of fistulas since the surgery?
06-24-2011, 05:03 PM   #6
Grumbletum
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Thanks, Dusty :-) I have an abscess too, so the fistula is probably originating from there?
JC, I had several UTIs when I first flared almost a year ago then was still having the urgency aNd frequency despite testing negative for infection.
Yep, I've got the air- urine was very cloudy and bubbly, tho it's been more still than sparkling in the last couple of days!
06-24-2011, 05:13 PM   #7
JC1919
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Thanks Grumbletum....I have an abscess too....I understand that its the abscess which is preventing the fistula from healing. My urine seems to vary in colour daily! The worse symptom for me is passing faecal matter and undigested food through the urethra...so painful! Are you considering surgery to remove the fistula?
06-24-2011, 05:13 PM   #8
DustyKat
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@JC, He is 10 weeks post op now and I would say from about the beginning of week 4 post op he had a significant change in his recovery. He was able to move much more freely and do so many more things. He had open surgery. He has had no problems post op and has had no return of any Crohns symptoms. My daughter has been in remission for 5 years following the same surgery and she also had fistula's.

@Helen, Since you have a fistula it would most likely be causing the abscess.

Dusty. xxx
06-24-2011, 05:22 PM   #9
JC1919
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Thanks Dusty...glad to hear he recovered well and is symptom free. Seems like surgery will be the most likely option for me, as the meds are having little effect so far.
06-24-2011, 05:28 PM   #10
Grumbletum
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Ah....it sure is complicated, this Crohn's business! JC, you poor thing, that sounds awful. GP said a 'small fistula' and I haven't noticed debris, just bubbles. Yes, if it's the best option I'll go for surgery. Having a battle to knock the inflammation on the head and there's quite a bit of narrowing. I suspect I might be heading for a resection, but maybe I'm being pessimistic.
06-24-2011, 05:37 PM   #11
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Yes, its all very grim! The thing is, my inflammation is under control and I have no abdominal pain. The only pain is in the bladder and when I urinate.

I know surgery to remove the fistula will also involve a resection of the colon, which seems a shame as I have no pain in the colon. Its a bit of a dilemma to know what to do for the best.
06-24-2011, 05:48 PM   #12
Grumbletum
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Difficult decisions indeed. I guess a positive is that many people on the forum have had long remissions after a resection. I see my GI again on 17th so will see what he says. They didn't give you any indication how long to try the Remi for?
06-24-2011, 05:56 PM   #13
DustyKat
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I really feel for you guys. We really had no choice with my kids surgery so the decision, although difficult, wasn't clouded.

Good luck with your appointment Helen...

I agree with Helen JC. Talk to your GI and find out what they deem an acceptable period of time to see results with the Remicade.

Dusty. xxx
06-24-2011, 05:59 PM   #14
JC1919
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Yes, this is true. I am having three remi infusions over 6 weeks. Ive already had two and the third is mid July. I was hoping to find that other people had been healed through remi but I cant find any evidence of this on the net. It seems some people have had external fistulae healed, but I cant find any information on internal fistulae healing through remi....I feel like im grasping at straws continuing with the meds!
06-24-2011, 06:03 PM   #15
Grumbletum
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Thanks again Dusty sweetie - you are such a rock :-) It's heartening to hear how well your kids are doing.
Must sleep now. JC, keep in touch and let us know how you get on.
06-24-2011, 06:30 PM   #16
DustyKat
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I would question the GI JC. In view of the fact that you have an internal fistula and an abscess you may well be right that you are wasting your time with Remicade.

Dusty. xxx
06-27-2011, 11:23 PM   #17
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hey JC.

about 6 yrs ago, I had a resection done for my crohn's etc. while during surgery they said I had a fistula going to my bladder, which they cleared out during the surgery..I had no symptoms of this, and was surprised. Needless to say ever since then I have the same problems you mentioined. the fistual to my bladder from my small or large, not sure.. comes and goes. Just had it act up 2 weeks ago, it's gone now. taking flagyl n cipro. and on Humira weekly. (this is my 4th week in a row for Humira after taking it bi weekly, for 3 months)

If you can avoid surgery I would, odds are, the fistula will come back anyways..they seem to have memories and find that weak part or opening..and break thru so to speak.

I have had, 'air/gas' pass thru it. feses too. burning . urgency to urinate all the above. mibe must be a small pinhole size.. and comes on every 4 months or so for a week or so, then clears up thank god. But it is a 'weird' feeling. I know the second 'gas' passes intp my bladder, you feel the pressure. it isnt a normal feeling we are use to.

Not sure how bad yours is. but Remicade should help it. with lots of flagyl n cipro too.

If you can tolerate the pain and uncomfortableness for a bit, I would try to get the meds to work etc.

Like a said, odds are it might return again anyways, cause they cut open your bladder, and put in a tube for about 5 =5 days, so the bladddr heals ,so you don't urinate normally etc.

Hope all works out for you. But mine has come n gone for the past 6 yrs, not too often though, luckily, but I have plenty of fistuale activity on my butt anyways lol.
06-28-2011, 10:12 AM   #18
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Hey Steve,

Thanks for your post.

I do get alot of relief taking Flagyl but my GI will only allow one 10 day course a month because he said being on it for long periods can permanently damage the nervous system. About 48 hrs after finishing a course, the fistula symptoms always come back. I've not heard of cipro but will ask my GI about it - maybe it has a different name in the UK?

I've got to have a colonoscopy and barium meal next week to ascertain the extent of the fistula - from the CT scan i had last month, my GI reckons its the size of a pin hole, similar to yours.

Maybe i'll hold off from surgery for another month or two and see how things progress on the remicade - i'm not sure i can tolerate the pain/symptoms forever though. Like you, if it closes for a few months, then reopens for a week or two, I'm sure I could deal with that.

Do you find eating/drinking certain foods give the fistula more of a chance to heal? I was thinking about sticking to fruit, vegetables and water to put less pressure on the colon.
06-28-2011, 10:28 AM   #19
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well I would say to avoid anything that gives you 'gas'.. I know that is the first thing I notice when I have the bladder fistula, is air'gas passing into the bladder. WHich I know I will eventually pass thru the ureathra or whatever it is called..lol. not fun.

I have noticed if I am at all constipated, in makes the bladder fistual more active, if it was already active. so I have taken stool softener and that might help somewhat.

My fistual is prob a pin hole too. and it opens and closes a few times a year.
06-28-2011, 11:16 AM   #20
Grumbletum
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Cipro is one of the things my GP prescribed for the fistula ( see my sig ). For me I've found that refined sugars, sweeteners and things with yeast lead to increased urgency, frequency and pain so I've cut them out of my diet. Coffee was especially bad.
06-28-2011, 12:52 PM   #21
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Hi All,

Glad i found this thread, i have a fistula from my resection join although not leading anywhere (that i know of). I have recently seen my GI and we agreed to start Infliximab, so im starting tomorow but ive started to wonder if it will work.

Im seeing a surgeon next monday although it hasnt been explained why, im guessing maybe the theory is that if the fistula doesnt close, then surgery would be best? The only thing is i cant work out is whether the pain is from the crohns or the fistula or both, and the only way of determining this is to have regular CT/MRI/whatever else scans.

From what i saw on the colonoscopy in December the join area kinda looks like looking up a nose, with two tunnels and the join in the middle. I know some of you are saying yours open and close randomly, could mine be doing the same? Although i do think mine is bigger than a pinhole and it cant be right to just leave it there untreated?
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Infliximab 8 weekly
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06-28-2011, 05:29 PM   #22
Grumbletum
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Hi Dave
Nice to meet you - tho the circumstances could be better :-) Fraid I don't have a lot of experience of this, but I'm sure someone ( Dusteeeeeeee ) will be able to help.
Sounds like they are considering surgery as an option. I'm like you. I have a few pain hot spots but am not sure where the fistula origi
nates. When did you have your resection and do you still have inflammation?Do you get any other symptoms other than pain from the fistula?
06-29-2011, 02:56 AM   #23
DustyKat
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@JC - 10 days? Wow, that's a normal one course of antibiotics so I can't see it doing much at all. Like you say, you just start to feel better and you are off them again...
I guess there will always be the potential for the Flagyl to do that but at what cost is a never healing fistula. Matt has been on Flagyl non stop for 6 1/2 months with no side effects. Three months pre op in conjunction with Augmentin Duo Forte to keep infection at bay and 3 months post op as the Prof said that research indicates that it helps to maintain a longer remission.

@Hotspur - I would say the reason you are seeing a surgeon is for the reason you stated, if the Infliximab doesn't work then surgery is most likely the only option. Like I said before, all the colorectal surgeons and GI's that Matt saw were adamant that a fistula orginating in the ileum would not respond to treatment with biologics...(((shrug))). Azathioprine and antibiotics certainly didn't heal it but we didn't expect they would either. Matt's fistula was only a microperforation too.
I guess your pain may be associated with the inflammation. You wouldn't develop a fistula without inflammation and you couldn't rule out an abscess at the other end of the fistula that may also be causing pain.

Dusty. xxx
06-29-2011, 05:12 PM   #24
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Back from my first Infusion today, dont feel any different yet but i guess it takes time. I spoke with my Ibd nurse in there and what she says makes sense, once the inflamation stops the bowel has a chance to heal and then the fistula would hopefully close up. Im still to see surgeon on monday, as i understand it if things dont work and surgery is required then ill be ready to go rather than be put on a waiting list.

My resection was last may, i decided to go ahead with the infliximab because nothing seemed to be changing, the alternative was more test scope and CT etc and i didnt want to wait another 3 months for the results just to find out nothing has changed.

Fistulas have got to be one of the worst things about Crohns, i mean i can deal with everything else but tunnels .. seriously?! I am grateful that it hasnt gone anywhere, the abcess had gone last time we checked (not sure if they come back?) and pain seems to be the only problem - i am also grateful not having to take antibiotics too, they really gave me problems.

I hope you all get relief soon anyway, ill keep you posted with what surgeon says and my infliximab progress.
06-29-2011, 05:28 PM   #25
Grumbletum
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I know! The idea of tunnels in there is seriously scary. And for some reason reminds of that film 'Dune' with Sting in it!??
Hope the Remi works for you. I've finished the antibiotics now but after a year of bladder issues, I've forgotten what normal was like.
07-04-2011, 02:10 PM   #26
JC1919
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Hey Grumbletum,

Does your GI/GP allow you to have a course of antibiotics for more than 10 days ( assuming you are on Metronidazole/Flagyl ) ?

I spoke to my GI again today regarding having a longer course, but he is adamant this is unsafe so is unwilling to prescribe. I was wondering if he is taking this stance due to experience with other patients or maybe there is somekind of medical legislation in the UK which prevents prescription of longer courses?

JC
07-04-2011, 03:41 PM   #27
Grumbletum
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No, I don't think so. Both the Met and the Cipro were for 7 days only. I did think that was standard for antibiotics but am sure I've seen people here who are on longer courses of Flagyll.
Just found out today that my GI wants me to start on Azathioprine.
07-04-2011, 04:05 PM   #28
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Ok thanks. I've been on Azathioprine for 3 months now, with no side effects as yet. Hope it works for you!
07-04-2011, 04:59 PM   #29
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Thanks, that's good to know. Is the Aza helping you? Did the GP suggest any alternatives to the antibiotics?
07-05-2011, 07:29 AM   #30
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Aza has helped me alot in controlling general inflammation, although has had no effect in closing the fistula, hence I am now also on Remicade.

My GP reckons Remicade is my only hope for closing the fistula, but can take up to 6 months to work - not sure I can stand the symptoms that long!
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