Temp ileostomy next step

[Amylou]

Hi. Has anyone here had to have a temp ileostomy to help perianal crohns heal? I have a fistula with setons in but the fistula branched off causing another deep tissue abcess!! As long as im going toilet its just filling up and bursting its absolutley awful!! I feel terrible down there!! Just need to know if it does realy help and how long does it usualy take until you can be reversed? I know i will have to have MRI every so often to check progress. I am seeing My GI nxt week to see if I can have the drug remicade but cant start this until Ive had the ileostomy. Im just hoping this will get me back on the road to recovery Its completely disabling me at the minute xxx

 

[Grumbletum]

Amy, love, hang on in there. I really feel for you, it sounds awful :-( My fistulae are internal and I haven't had surgery for them yet ( though it's probably imminent ) so I can't really advise, but I'm sure someone will be along soon who can.
Have you got a date for the surgery?

 

[Christie]

Hi I have had a fistula since having my first daughter 13 yrs ago, I have had so many procedures to help it!!( It has never actually healed properly) I got a tempory ileostomy in Feb 10 ( not for the fistula) although it did help it. I started Infliximab (remicade) this Feb and am nearing my 5th infusion, just before my 4th one I developed an abcess on my anus and had to have an MRI in which they found I had 2 fistulas, I am having them layed open in November. I am also wanting to get my ileostomy reversed at the same time but dont know if this is possible. When I first got my ileostomy it was heaven!!!! Hope this helps a bit x

 

[Amylou]

Hi Christie/Grumbletum!!

Thankyou for your msgs I go in hospital sunday for surgery Monday. Im having a realy bad time with my perianal crohns my bum is so sore from the abcess building up and bursting inside me I have setons in the fistula which is letting most of the pus come away but the pain and suffering with it is horrendos!! They have found I have strictures in the end of my small bowel after a barium xray!! The surgeon isnt realy sure whether it is connected to whats happening in my anal area with my recurrent abcesses!! He wont know this until he goes in and sees!! Either way im having the disease bowel taken away and then he will decide wheter I will need a ileostomy or not!! I realy feel like i do need one to give my bum a break and let me heal the abcesses to me are obviously being fed through my fistula hole in bum im not healing one bit :-( im scared and nervous about this op!! I have had a ileostomy before tho 8 years ago for 4 months for sphincter repair after all this I hope my sphincter muscles are not too knackered!! Realy want my life back I cant work or even look after my 2 year old daughter properley!! oooh grumbletum I havnt had any problems with internal fistulas yet hope they get sorted one day!! Do they bother you alot? Thanx christie just hope I get an ileostomy because I cant see no light otherwise!! How many ileostomys have you had to have? Can't believe Id ever be desperate for bag lol this disease is so nasty and painful I do feel for every one who unfortunatly has been blessed with it!! Well hopefully ive only got a few more days to suffer for this period of it!! Had 5 years remission before all this started back in december!! I know recovering will be painful but Im happy to go through it if it means im better in long run!!! xxxxxx

 

[Grumbletum]

Oh Amylou, that's awful. You've had such a hard time, and with a wee one to look after too. I hope and pray that your surgery goes well and that the docs can give you a lasting solution to your problems.
I've been lucky. Just come out of hospital. Went for a pre-op assessment and tests showed the fistula had healed. They put me on Infliximab for inflammation I can't seem to shake, so I had the first infusion yesterday.
Stay strong, love, and let us know how it goes xxx

 

[ameslouise]

Hi Amylou -Just wanted to say good luck on Monday! Hope the procedure goes well and you find relief afterwards. Sounds like you are more than ready to feel better! I hope it helps tons. Keep us posted!!

- Amy

 

[CrohnsGA]

Hi. Has anyone here had to have a temp ileostomy to help perianal crohns heal? I have a fistula with setons in but the fistula branched off causing another deep tissue abcess!! As long as im going toilet its just filling up and bursting its absolutley awful!! I feel terrible down there!! Just need to know if it does realy help and how long does it usualy take until you can be reversed? I know i will have to have MRI every so often to check progress. I am seeing My GI nxt week to see if I can have the drug remicade but cant start this until Ive had the ileostomy. Im just hoping this will get me back on the road to recovery Its completely disabling me at the minute xxx

Sorry you are in so much pain. Yes, I got my temp ileostomy place on Aug 19th. My Crohn's disease has been in remission for about 2 years now, EXCEPT for the disease that is in the perianal area. I'd been battling fussures, fistulae, abcesses, infections, stenosis...for over two years. Decided to go ahead with the temp ileostomy.

 

[Amylou]

Hi all!! Thanks for your msgs just thought Id update on how my operation went!! I woke up with an ileostomy whoop whoop and the end of my small bowel and beginning of my colon has been taken away!! 2 weeks post op and my bum feels almost normal apart from having wires in my fistula!! I dont get hardly any leakage now either . My tummys still quite sore tho I was opened up from under belly button and ive got a scar straight down!! Know its going to take a while for things to settle properley!! But hoping I will be back in the land of living in no time!! Gwen hope you feel better with your ileostomy gosh you have had it bad down there!! Its been decided to not go on any drugs for the time being and to just stick to pentasa. I have been so ill and have lost alot of weight so mine and the consultants main concern is to get my energy levels and weight back up first and get healthy!! The bad bowel has been taken away so am all healthy inside at the min!! Just have this fistula hopefully it will heal well!! Im am much happier now already Im getting used to the bag again!! Even tho I still screw my nose up cleaning it ha!! Its seems to be on overdrive a the min tho 9 times the other day I emptied it I go the loo more times now with the bag than I did without it lol!!! Stoma nurse has prescribed my some loperimide to help it calm own a bit!! My daughter was so pleased to have her mummy back I was in hospital for 2 weeks told her I shouldnt have to dissapear again for an while now bless her !! Hope your all ok xxx

 

[Grumbletum]

Hi AmyLou It's very good to hear from you - thanks for the update. Sounds like the surgery has gone well, thank goodness and hopefully the fistulae are on the mend.