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Enterocutaneous Fistula

I currently have an entrocutaneous fistula draining from my former surgical wound, a remnant of my Stoma reversal surgery that I had back in February. It has been healing really well since appearing in April and my surgeon is really happy with how things are going. I've only had a dressing over it for ages and just a small amount of yellowish output.
However, yesterday evening I suddenly had a load of gas come out of it and lots of brown output with what looked like some bits of food in it.
I've put a little Stoma bag over it for now as it was leaking through the dressings I use. My surgeon is on holiday this week (typical eh?) and I'm waiting for a phone call from the surgeon he left in charge of his patients. I don't suppose there's anything they can do about it, I just feel gutted that I've taken a step backwards after finally making some progress in getting better.
 
I had one of these form last year from bowel to my navel and it produced at such a rate I always had to have a bag over it. I found it was more volatile depending on what I ate or drank, and would lead to me having gas come out of it and poo whilst normally it was pus. I was on no medication for it either, and in the end my bowels were in such a bad way they had to do an operation in which they found several more pesky fistula's inside. So I can totally emphasize with how your feeling. This is such a glorious disease ha.
 
ive had one on my belly between the bellybutton and where the ribs join since december last year, started with a lump that got painfull when sleeping on my front, ended up in hosp and was told that they were gonna operate as it was a fistula that had tunneled to the large bowel, and also sort out the areas that were also causing me trouble from the fistula to the area of a previous hemicolectomy which keeps narrowing frequently, so that was me all set to get sorted out, then the surgeon came round and said what would happen and told me i could be left with a stoma, told them to go aheda and if they cant join me up again, just leave it but on no account leave me with a stoma, so off he went op cancelled a few hrs later, instead they want to put a tube drain into the abscess under the scanner, and then later another colonoscopy to see what they can join up if they operate, the tube lasted a week or so, and hell it stank, so now its a wound managment bag on it, which is even worse i hate these things with a passion cant sleep with it, leaking and soreness, and hell doesnt that stuff burn???,waking up if i do manage a rew hrs smeared in its contents , having to wear a t shirt in bed, any way ,then another hole apppeared anbout an inch below the original drainhole, brillaint, scope was a no no because i wasnt konked out for it in jan, rescheduled foe gen anaesthetic didnt happen till may and i still dont knpw whats going on lol, have an appointment now for the 29th and will find out if i can get any answers, i hate this bag and everything that goes with it and have turned into the snappiest angry lazy and not even wanting to talk or speak to anyone, a diff person, mostly all due to not being able to sleep more that 3 hrs in a row , so roll on the 29th ill find out what im gonna do one way or the other
 
Thank you for your replies, I'm sorry that you're all going through this too!
I spoke to my IBD nurse a couple of days ago about it, she's going to speak to my surgeon tomorrow to see what to do with me.
I can't have any more surgery for at least another six months as my insides are so messed up from the last one in February.

Just out of interest gmm, why were you so against having a Stoma. I really miss mine!
I hope you have more luck with the wound bag. I just use a normal Stoma bag over my fistula, is it the same? I have found that some of the products I used for my Stoma really help with stopping leaks with my fistula. I use stomahesive paste around the edge of the fistula which helps the bag stick better and also acts as an extra barrier. I also use skin safe barrier wipes before applying my bag to protect my skin from any output. Maybe you could try some of these things?
 
wow 6 months is a fair wait,just hope you can get it sorted out, thats all ive been waiting for since this "thing" appeared , the reason i wont accept surgery that ends up with a stoma, is what ive been going through the last 7 months, i really am not the person to put up with the hassles involved and as for the last few months, ive bought seals , tape , to stop leaks but no go,using using oakmed om-m wound managment bags. have even looked into ways to seal off these damn holes myself, just to get a decent sleep again and not wake up at times smeared in the bag contents, thats why , fingers crossed on the 29th ill find out exactly whats in the future
 
Yeah, I've got a whole lot of adhesions and scar tissue inside, so any more surgery would do more harm than good :-( Hopefully my IBD nurse, gastro and surgeon will have some ideas.

I'm so sorry that you're struggling so much with this. I've never seen the oakmed bags before. Personally I use coloplast, one piece Stoma bags, the smallest size they have. I guess, possibly, because they are designed for stomas, the baseplates are more durable as they are used to acidic Stoma output. I can get more than 24 hours out of a bag and I only change it because I like a clean bag every day. I used coloplast two piece bags with my Stoma and never had a leak with those in the three months that I had it, so I know that I get on well with them.
You shouldn't have to put up with leaks all the time, I can totally understand why you're seriously fed up!
Will be keeping my fingers crossed for some good news for you!!
 
thanks absentminded, yeah the acid part is the culprit i think, looks like we're in the same boat gut wise lol, but also in my sleep , when i do get some, is turning onto my front, the only way i can sleep. all my trouble is from a hemicolectomy area to the middle of the transverse colon, hoping that all that can be taken out and i can be rejoined,getting rid of the strictures and adnesions and wsp this fistula/adscess, hoping that the 6 month passes quick for you and they can do successful surgery
 
Oh I don't know, sounds interesting though. Spoke to my surgeon last night, he said I can't have any more surgery for a year, so I've got a year for it to heal up.
He doesn't think that infliximab or Humira would help either as its not a Crohn's related fistula, it's related to my surgical complications. So I guess I just have to keep going with the Stoma bags for now......
Most embarrassing thing about is that when it releases gas it is so loud!! Much louder than Norman, my Stoma, ever was.
 
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