Bladder fistula

[gracifer]

bladder fistula

So I had an MRI scan the other day to show them where and how many there were. I also had that thing where they put the camera up my bladder, and all the doctor could see was that it was inflammed in a particular part but not the hole or holes.
I've probably had it for 6 months.. cloudy/painful/sometimes very bloody pee, bladder farts (occasionally). When the crohns was really flaring at times I could feel what was like air passing through, which was very painful.
The thing is I'm going to see the consultant next week. I already know I need an operation (no drugs have been tried) and I am so so scared that he is going to say I am going to have some gut removed or something, or that I'm going to need a bag. I'm 21. I feel that this is destroying my life, dramatic i know.. but still. I dont mean to cause offence to anyone out there but i don't think i could cope with a bag...
anyway.. whats there usual attack mode? sow it up?

 

[Grumbletum]

Hi Gracifer. Sorry to hear about this :-( You're not being dramatic. Many of us know how distressing this type of fistula can be as is the idea of surgery.
The first line of attack is powerful antibiotics, often a combination of Ciprofloxin and Metrodinazole. If these don't heal the fistula, they might try you on Remicade/Infliximab. You say you know you need to have an operation: have they said that's to remove the part of the bowel with the fistula?
I know they are hard to heal with meds, but mine did.

 

[gracifer]

Oh well, he just said you'd have to have an operation. I asked if there any drugs I could take and he said no. He didn't even tell me what the operation was for, I assumed it was for getting rid of the hole..

 

[Grumbletum]

Who said that, Gracifer? The GP?

 

[gracifer]

this consultant of urology..
when i said about drugs he said i could always go for a 2nd opinion..

 

[littlefreebird]

with most cases i don't think they can just sew up the fistula because the area where it formed is usually already in bad condition.

you may not need a bag, a resection may be possible (where they remove a section and join the healthy bits together).

i had a recto-vag fistula and was expecting to have a temp bag while it closed up, but an mri scan showed the whole colon wasn't worth saving and 6months ago, in july 2011 i had my colon and rectum removed and now have a permanent ileostomy bag.
i'm also 21, and honestly, it was the best thing i ever done and i am now living a crohn's free life, i don't regret a thing.

there are many mis-conceptions about bags- please don't believe everything and the horror stories you may read.

hand on heart, yes recovery wasn't nice but anyone that asks me now what having a bag is like, it's actually no big deal.
i work full time, i'm out every weekend and i'm living life.
i've forgotten all about it and nobody (apart from close family) know about it!

it's probably unlikely you'll need one but i wanted to comment from someone who has a bag and thinks it isn't a big deal

good luck and keep us posted.

 

[Grumbletum]

this consultant of urology..
when i said about drugs he said i could always go for a 2nd opinion..

Do you see a gastroenerologist as well? The one I see locally referred me to a hospital on the mainland for surgery but by the time I got there the fistula had healed ( was on Pred, Aza and antibiotics. ) It was the surgeon who advised me to give the stronger meds a try.

 

[PsychoJane]

As Helen said, I would try to see with a GI for a second advice on medication. Some therapeutic options allow the track to heal so it stop being "active" if I may say. It will never disappear but it can close up and become inactive with the treatment, usually antibiotics + biologics (humira, remicade, cimzia). So depending of how serious it is, maybe you can go without the surgery as of now. Nothing says that it won't bring problems further in the future though, that is why the surgical aspect might be interesting to an extent, it is a long term solution. And as littlefreebird said, having a bag is not necessarily a big deal, I've had one for the past 12 years and it is not a problem for me! It has allowed me to live a normal and healthy life until recently!

 

[gracifer]

Ok I really REALLY need some help here. Basically went to see the consultant, only got given this man who could barely speak any english plus had a seriously strong accent, so whatever he did say you could barely make it out, had no idea who the hell i was, didn't know i had crohns. Kept saying 'well it isn't cancer!' (well i know that you idiot.. no-one mentioned cancer AT ALL, because the consultant who knows me is away.
What we did get given is a sheet of paper about my MRI. Now, its so full of complicated medical jargon god alone knows what its saying. The opinion at the end however says:
A large collection is seen superior and anterior to the bladder which is closely associated with the inflamed mid sigmoid and this may be secondary to a localised perforation.
What the hell does that mean?! Can anyone help me?
Thank you so much!

 

[PsychoJane]

Is that all you have from the paper? I'll try to word it differently from what I understand but once again, it may take different meaning according to the context and the document associated with it. From what I understand it sounds like, he probably mentioned cancer because of the "collection". If he was not aware you had crohn, that's maybe why he brought that up as the "collection" would be even more suspect for someone with no previous health condition. The need is to determine what that collection is basically. It could be an abscess resulting from the Crohn inflammation. The abscess is pretty much a collection of pus, that results from the inflammation in the guts usually. There are several layers that constitute the intestinal walls and it happens that inflammation happens in between the layers if I may word it that way and then the puss collect there and creates an abscess (I am not sure to be right about the way I explain it, but this is how I understand it). Since this collection is abnormal, it needs to get out. The abscess may be drained out surgically, but with no intervention it may happens that the abscess find a way to drain itself "naturally". This usually result in a fistula. Usually it will reach hollow organs, or even the skin. I am under the impression that this is what happened with your situation where you had inflammation of mid sigmoid(terminal part of your colon) and it probably evolved in the formation of a fistula that link to your bladder (I might be wrong, this is just what I understand from the situation as I said).

I read your other post in diagonal but I saw something about crohn/not crohn? Only test (colonoscopy + biopsies)would really clarify that, but if they brought up it isn't cancer (which is a great thing) and if it is not crohn, then there is also diverticulitis that can lead to that type of issue. Can you ask for another consultation with your regular consultant any time soon? Also, is that consultant a GI? I hope you get to clarify that soon, it's annoying to be dealing with uncertainty. Did the consultant you saw mentioned something about the treatment option or something?

 

[Grumbletum]

An abscess is what I was thinking too. It's very common to have one with a fistula. I had one on my bladder. I also agree with Jane about finding someone who will explain the results for you. Generally when I've had tests, I've had a follow up appointment with either my GP or GI to discuss the results and what it means in terms of my treatment plan.

 

[Tay]

Might be worth asking your GP to refer you to St Marks hospital, London (professor Leonard-Jones team) they have a particular interest/expertise in Crohns. Good luck.

 

[gracifer]

Just wanted to say (my broadband been down for AGES,finally got it up again!) that I went back to my crohns consultant, (why my doc didnt tell me to go to him straight away i dont know) and he said the results suggest that i have both a fistula and an abcess, but i need MORE tests *sigh* because he doesnt just want to operate on me straight away (unlike the other guy who apparently is going to talk to surgeons to see when there free). God i just want this hell to be over with so I can get on with my life!
Also Tay thank you so much for suggesting them! had no idea it even existed! So am going to try and have my operation done there! My consultant even said that it was a good idea!