Enteroctauneous fistula

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Groundhog
New Member


Date Joined Sep 2013
Total Posts : 6
   Posted 8/28/2017 1:22 PM (GMT -6)   
Hi all, hoping for some positive stories but I won't hold my breath...
I had a stoma 31 years ago and it's been OK - it was an ileostomy for bowel disease, posibly chrons. Never had any further bowel problems.
Almost 3 years ago I had a hysterectomy for endometriosis - my bowel perforated and I ended up with fistula. I went in for repair in March ( anastomosis) and nearly died ( respiratory failure owing to sepsis). I still have the fistula. I wear a small bag over it. No drugs as no evidence of Chrons!
I hate it and it controls me, I no longer have a life.
Has anyone else got one and if so how do you cope.
I'm in UK.
Thanks - please be gentle, I'm so down because of this, I feel like my life is over - I'm 57 by the way.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3257
   Posted 8/28/2017 2:42 PM (GMT -6)   
I'm so sorry. I know a bit of how you feel. I got my recto-vaginal fistula just four months after I got married, a little over 5 years ago. It still has never healed, but I had a seton in it for a while, and the skin around it healed over. Kind of like an ear piercing, if that makes sense. Now it's just there. It can cause some problems at times - sometimes it aches, or after sex it might be painful if the angle was weird. And if I need to pass gas, I can't hold it in. I had to have c-sections with my kids because of the fear of tearing more with dilation.

But honestly, it's really gotten easier and been okay. It doesn't really act up, and it's become no more different to me than any other gross thing my body might do (like ear wax or snot).

I think you should have a colonoscopy to check for Crohn's. If so, then you could start a biologic like Remicade and those have pretty good success rates for helping fistulae heal.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

73monte
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Date Joined Mar 2007
Total Posts : 1739
   Posted 8/28/2017 6:45 PM (GMT -6)   
I second the recommendation to try Remicade. It has a very good track record for healing fistulae.

Groundhog
New Member


Date Joined Sep 2013
Total Posts : 6
   Posted 8/29/2017 3:06 AM (GMT -6)   
Thank you for your replies.
Would they prescribe Remicade though if there is no evidence of Chrons?
X

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3257
   Posted 8/29/2017 11:41 AM (GMT -6)   
I'm not sure, but honestly your symptoms match so much they might. I'd ask for a new colonoscopy and pill cam though for sure.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

randynoguts
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Date Joined Jan 2003
Total Posts : 6115
   Posted 8/31/2017 2:20 AM (GMT -6)   
while remicade does get prescribed for crohns, it also is prescribed for fistula healing as that is what it does best. reducing inflamation and in so doing lets the fistula tract heal.

as a side note you asked if we had one or have one. in my case it is HAD. I had 9 at one time on my abdomen some were close enough together that a ostomy bag could collect 2-3 at a time along with the jujenostomy my skin was being digested no matter what barrier film I tried. hurts like heck right? once those were removed during a surgery later that same year one big one came back within maybe 3 weeks of surgery. right on the midline incision just above where my belly button used to be. that sucker would shoot out 3-5 ft if not covered and it happened a lot. I used bags to contain it but it would fill a large bag in seconds when it let go, just as my jujenostomy would. . I lived with that sucker for almost 4 years.no one would try and fix it seeing as I was already short gut, had loop to loop fistulas already and was on TPN and generally poor health. one surgeon finaly saw that I was at the end of my rope and said she would try. she did and succeeded . that was in '04. it was so uplifting and sense of wellness repairing that it saved my life. my outlook changed, I started to live again.

if you are in good health otherwise now , if it were me knowing what I went through before , I would INSIST it be rectified if they wont let you try the remicade. we should not have to live like that. hope you find relief soon, randy

Groundhog
New Member


Date Joined Sep 2013
Total Posts : 6
   Posted 8/31/2017 3:50 AM (GMT -6)   
Thanks Randy,
Yes it is a nightmare although yiur situation sounds worse than mine is. I have an ileostomy which is fine and then this darned fistula which is low output but it hate it with a passion, it has stolen my life - I have become somewhat obsessed with it and it governs what I do, so even if I feel OK - if it's discharging a lot, I just cannot seem to function, so awful so depressing.
My surgeon is going to make enquiries about Remicade and see if it can be prescribed for non chrons patients. I'm in the UK. Don't fancy the side effects but il try anything.
Thanks again.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14966
   Posted 8/31/2017 8:04 AM (GMT -6)   
Groundhog, I was on Remicade for 3 1/2 years & had no issues. The day of infusion I always felt tired when I got home & that was pretty much it. I had an initial reaction on my 3rd infusion, was given pre-meds & did fine. By law they are required to list any potential side effect. Keep in mind the side effects are things reported mostly when the drug was in the trial process, so if you get approved try not to stress over that. It's easy for some to get hung up on thinking every little off thing is related to the drug when it isn't. Don't waste precious energy worrying yourself.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

RobLee
Regular Member


Date Joined Apr 2017
Total Posts : 365
   Posted 8/31/2017 9:45 AM (GMT -6)   
Our son was on Remicade for several years for psoriatic arthritis after his insurance declined Humara, and he seemed to handle it well... though infusions were inconvenient and the co-pays were expensive. I think he is now back on Enbrel again, but we were told that Remicade is a longtime standard treatment for a variety of conditions.

Groundhog
New Member


Date Joined Sep 2013
Total Posts : 6
   Posted 8/31/2017 12:58 PM (GMT -6)   
Thanks all. I'm in UK - hoping my Consultant will authorise it.nnim willing to try anything now as living with Fistula is not good, it's so unpredictable and I don't really have a life. My husband and I are arguing a lot as he wants his wife back! If only it was that easy, I want me back too x
Thanks again x

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6115
   Posted 8/31/2017 8:27 PM (GMT -6)   
ground hog. i named my fistula "frank" when he was calm and "****head " when he was not. humor helps a bit.. .
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