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Uc and fistula

Hi everyone
I am a new member and wanting to share experiences.
I was diagnosed with ulcerative colitis in early 2012 after having spent the previous year in a highly stressful job and watching as my mother succumbed to motor neurone disease dieing shortly before Christmas 2011.
Initially they tried to treat me using medication but although things would improve short term they would worsen again once I came off the meds.
Ultimately surgery was arranged for September 2012 and I had my entire colon and rectum removed and was given an ileostomy and a j pouch. After a few days recovery and trying to go for a walk around the wards, I was sweating and burning up so stood by an open window for a bit of fresh air. Next thing I knew, I was lying on the floor surrounded by doctors and nurses as I had passed out and cracked my chin on the window cill on my way down which left me needing a few stitches in there. Just the start of my bad luck.
After recuperating in hospital for a couple of weeks I returned home and things seemed to be improving until suddenly I started to feel much worse. I went back to the hospital to ask them to check me over but they sent me home saying it was usual to have ups and downs after such major surgery.
A couple of days later my stoma nurse came to my home for a visit and upon seeing my condition told me to get straight back to the hospital as something looked seriously wrong. Upon insisting that something be done they agreed to take me down to theatre to open me up and have what they thought would be a quick 15min procedure to confirm all was ok.
I ended up in theater for over 6 hours and they had even had to bring a second surgeon in to assist as when they took a look inside they found a massive abscess and also a perforated ulcer in the small bowel which had filled my abdominal cavity with poo and if left another day or so would probably have caused septicaemia and could have killed me.
After coming around from surgery I was transferred to a different hospital as they had facilities more suited to me and although I thought recovering from the first surgery was bad it was nothing compared to this.
After 6 weeks I finally had all of my various tubes and drains removed with the exception of one drain which was still discharging and was sent home with a bag for my stoma and another for the drain.
The takedown operation was planned for Feb 2013 and following this surgery I awoke and when having dressings changed at the drain site it was found that I was leaking bowel content (poo) from there and what had been leaking all along was mucous from the j pouch and I was told that I now was suffering from an enterocutaneous fistula.
After spending a couple of weeks being fed tpn through my neck (also getting infection there) they realised that the fistula tract was mature and not likely to heal by itself.
I habe now been placed under the care of Hope hospital in Manchester as they are a centre of excellence for treating these sorts of conditions but unfortunately things are moving slowly and after already having had numerous scans I have had to just undertake some more as they are still unsure of exactly where the problem lies. I am told that the issue may just be a leak in the tail of the j which will mean a relatively straight forward op but they are concerned that there may also be a leak in the seam of the j which is a lot more complicated and the op may leave me impotent and incontinent. As it stands, I do not know which way things are likely to head but with everything that has happened so far I fear the worst.
Currently op is hopefully going to be in or around Oct of this year so fingers crossed something will finally go right.
As it stands, I have had to leave work as I am constantly figthing infections around the area which leave me drained and sleeping for 12-16 hours a day and although I feel relatively upbeat when health is on the up I have crushing depression when laid up and ill. Having been used to being a fit and healthy 17 stone bodybuilder, it has been hard to adjust to weight crashing down to below 12 stone (although back to 14 now).
Sorry if I have rambled on a bit but could have actually gone on more. Please feel free to message back if you have had similar and also let me know if any of you have suffered depression and how you have coped. I am currently on a 23 week waiting list for therapy after explaining about suicidal thoughts to G.P. At 23 weeks may have to get them to drop my corpse off when appointment finally comes through.
 
Location
SoCal
Bloke your story is so sad and oh so familiar.
YOU HAVE CD NOT UC!
UC does not present in the small bowel nor cause fistulas, plus your docs fd up by not seeing you had fistulas had they then you shouldn't have had the colectomy.
They tried to pull that on me 40 yrs ago I was DX uc remove colon problem solved no thanks, 5 years later I got fistula disease then they said you have cd after all.
My buddies son went through exactly same as you removed colon said he was uc, he had suffered many years. Got the pouch and then got disease in the small bowel
Oops.
It's your life your decision. Good luck to you. You can still get your life back. My buddies son did and know he is a published artist.
 
Hi, what you have said rings true as not only have I suffered with the fistula and perforated ulcer but I am also troubled a lot with anal fissures and these probably give me more pain and discomfort than anything else. Have had all my biopsies and tissue samples rechecked and they still reckon uc was correct diagnosis but say as it is closely related to crohns I may be suffering symptoms of both.
I think that there is a degree of them misdiagnosing amd also f***ING up by not noticing fistula and was thinking of going down legal route but just didnt feel right trying to sue someone who was doing their best to look after my health. They have not got an easy job and I knew there were risks with all of this.
 
After months of waiting and having had MRI scan and contrast enemas nearly two months ago, have just heard now that results have been looked at by specialist and are still inconclusive. Op to repair enterocutaneous fistula has been constantly slipping further and further back and last date discussed was for op to take place in October. Now I am told that I will require an examination under anaesthetic which will happen 14th October with main op being pushed back further still. Have also been told that there is a good chance that op may leave me impotent and incontinent, am actually starting to hope that things go wrong altogether and I just don't wake up from operation, just so sick of it all.
 
I'm so sorry to hear that bloke, you sure have gone through much more than any person should have to. Sending my support and hugs. I have multiple fistulas and am about to start remicade for them soon, but mine aren't in the same area as yours. I wish I had some advice to offer to you, but just try to hang in there and stay positive, you can make it through this! And just think, maybe with your experience you can help someone else going through something similar on here. If you ever just need someone to talk to, I'd be more than happy to chat with you.
 
Hi Melissa
Thanks for the kind words and support. Hope the new meds work for you.
Have given myself a bit of a kick up the arse today and made conscious decision to try and stop moping around and feeling sorry for myself. Had come off citalopram (anti depressant) a few weeks back but have now decided to start taking it again as could feel myself starting to walk a very dark path again.
Am going to hit gym a bit later and hopefully that will give me a bit of a lift too.
 
You're welcome!! And thank you! I'm glad that you got yourself some motivation today and started taking your meds again. And gym will get ya some nice endorphins to feeling happier.
 
Hi, finally a bit of good news. Op has now been scheduled for February next year and I am also told that the areas to come under attack by the scalpel do not leave me at as much risk of impotence and incontinence as first thought.

Will have to have another ileostomy in order to give j pouch time to heal but they will be looking to reverse it six months later.

Got to say I am not looking forward to the recovery period after the op but at last I feel like there is a bit of light.

Speaking to new surgeon has definitely got me thinking that original guy f***ed things up and also lied to me about perforated ulcer and this was probably another leak left unstitched like the two I now have.
 
Hi, am currently lying in hope hospital in Salford Manchester after having surgery yesterday to remove the leaking tip of my j pouch and to have the other leaking portion of bowel pulled out to make a stoma. Can't believe how good I feel after the operation, have already been for a small walk around the ward, stoma is functioning and I have been able to eat three meals today. Finally it looks like things are going the right way.
 
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