All the fun of the fistula :-(

[Grumbletum]

I had a bowel to bladder fistula and abscess which healed on meds at the end of last year. Started having pelvic pain again, but lower down than last time and not with the severe UTI symptoms I had. I did go to the nurse with a sample and she gave me a three day course of antibiotic which helped a bit.
But pain is back and - gross detail alert here. My pee is often bright yellow from the Aza. I've been wearing pantyliners cos of a bit of discharge and they are stained that color, so I think I might be leaking urine?
I've been procrastinating hoping it might be nothing or just symptoms from a stricture, but I had a sudden surge of pain the other day and urge to pee but I also passed something foody/poopy looking!
That spurred me into emailing my IBD nurse who thinks I should have a scan and/or scope and will consult my GI.
For those with a similar thing, is the passing of the nasty stuff constant or does it come and go?

 

[stevereds]

HI Grumble

I have a bowel to bladder fistula too. Had it for about 6 years, the past 3 months it has been active ... leakage, air passing,feces etc., seeing a specialist in mt. sinai in nyc in sept.

To answer your ques. Over the course of 6 years that I ad it, I would go months without any symptoms at all, none. then some days I would pass air or feces for a day or two and it would again dissappear without any symptoms for many many months. So it can come and go.

My guess is you have a small opening/fistula. hopefully it close quickly. Like mine use to....now I think mine is a larger opening and the meds havent been able to close it as of yet.

 

[Grumbletum]

Thanks Stevereds Yes I think it must be small so hopefully it will heal quick. I'm sorry to hear yours is giving you bother too :-( 6 years is a long time!

 

[guitarjamie03]

It is intresting that you said that stevereds and grumbletum becasue I think that I passed some stool today in my pee as well. It really scared me. But I am glad to hear that it cane be healed with biologics (I am on Humira).

*Sigh* Hang in there everyone! We are in this together!

 

[Grumbletum]

Yep, it's a bit of a shock first time you see it! You should probably mention it to your doc if it's the first time it's happened.
My IBD nurse has spoken to the GI so they'll admit me for tests in hospital on the mainland in the next couple of weeks.

 

[kimmy86]

I am pretty sure I have a fistula..my 1st one I am due for a pelvic MRI scan tomorrow morning. my main question is really for those of you who have had them can u lead a normal life with partners sexually?? I am worried this will stop me ever meeting anybody as sex will be a big fat problem all the time

 

[Grumbletum]

Good luck with the scan, Kimmy and hope it's something that can be easily fixed.

 

[AlliRuns]

Kimmy.. bummer! Literally..

I won't sugar coat it, having fistulas has put a damper on my sex life. My husband has gotten over the fact that they are ugly. But when they are active they drain pus constantly, and they are painful, I pretty much don't want to be touched. Then if you're one of the lucky ones, the surgeon will give you setons, and those don't help the cause either.

 

[Grumbletum]

Yup, oozing stool through the lady parts is not a big turn on :-(

 

[Sailorluna]

In fairness though, it may not always be active. My rect-vag fistula drainage comes and goes and when there is no drainage sex is not an issue. Even when I had the rect-vag seton sex was still an option when things were calm. Felt weird with the seton but still do-able.

 

[kimmy86]

hmm thanks everyone, well I had my MRI no results just yet strange thing is so far it isn't painful and although occasionally a very small amount of puss comes from it that's all! I've had no stool at all and the puss is barely noticeable I don't think I'll cope if that is what ive got to come

 

[smallfry]

Anytime you need to talk Kimmy feel free to PM me.

 

[Grumbletum]

Well, the IBD nurse, true to his word, has got me a bed for Wednesday so it's off to the mainland for tests. The consultant on the letter is medical and a lady, not the guy I saw last time I was over. I had a Google and she's a gastro specialist and involved in lots of studies etc so I'm pleased

 

[littlemissh]

Good luck )

 

[littlemissh]

Good evening,
How did your tests go Helen?

I hope you got some answers and a treatment plan.

 

[Grumbletum]

Hello there One down, one to go. Infection signs in urine and platelets up in blood. Colonoscopy looked pretty clear, I think, but not got results yet, bit groggy from sedation and starvation.

 

[Terriernut]

Hoping things turn out well for you Helen!

 

[littlemissh]

Hope you get to eat soon, what tests are next..are you having CT or MRI ?

 

[PeggyEld]

I have a fistula and its pain and drainage comes and goes. Its pretty dormant until a week before my period, then it opens up and drains brown, powdery, foul smelling junk. I am not 100% sure if its old blood or feces. I do know sometimes the jabbing pain down into my urethra is TERRIBLE. Actually I joined this forum tonight to meet others with fistulas like this. Glad to meet you all.

 

[Grumbletum]

Hi Peggy and a big welcome to the forum Fistulas suck, that's for sure. Do you have a seton in to drain it?
I'm having an MRI on Monday, first time for one of them! So like last time they've said I can come and go. But to be honest, I'm really wiped out. I've done nothing but sleep since I got here. Have a very achy back and hip but don't know if it's the Crohn's or just me getting old!!

 

[Grumbletum]

Well, Freddie Fistula has reared his ugly head again so won't be getting out of hospital today. Not the lady I thought it would be, but Dr Potts my GI from my stay last year.
Wish I'd brought my knitting :-(

 

[Terriernut]

:thumbdown: No fun. Hope someone can bring you something to keep occupied. Lets hope they get this sorted for you very quickly.
:rosette2:

 

[Grumbletum]

I am working on the nurses to give me a pass for an hour to go to Hobbycraft up the road. What an amazing place.