This is a support group for those of us who deal with Fistulas, Fissures and Abscesses.
Is it as scary as it seems? To have a colostomy I mean? If Remicade doesn't work for me, I have a feeling that this will be the next step :-/Hearing you all loud and clear. My fistulas and abscesses got so bad that I have recently had my rectum and anus removed and have a permanent colostomy. So far all ok except for one abscess in my psoas region that keeps returning and is stopping the healing of my butt wound.
None of the medications worked and I had an anaphylactic reaction to infliximab( supposed to be best for fistulas) so I had no option as my CRS put it ' that is one wrecked rectum'. Have to say I don't miss being in tears with every BM and having up to 30 BM's a day.
I hate fistulising Crohns!!!
While I don't have one, so obviously cannot comment from personal experience, I can comment from 2nd-hand experience. My father has lived with a permanent ileostomy for over 30 years, which he had as a last resort due to life-threatening amounts of blood loss from severe UC. In fact, he has now lived longer with it than without. It certainly did require a few lifestyle changes, but he lives a perfectly normal life, and most people that know him don't have any clue that he has it. When my relationship with a girlfriend (who is now my wife) got serious enough that I told her, she was quite surprised, since his life seems perfectly "normal" to an outside observer (indeed, even to him, since he's had it for so long).Is it as scary as it seems? To have a colostomy I mean? If Remicade doesn't work for me, I have a feeling that this will be the next step :-/
What's augmentin? Pred is pretty useless for fistulas, at least that's what my doc told me. I was on it for awhile, it did nothing for my fistulas.I'm in. : (. I developed an abscess and fistula last August, and am still struggling with it. I've had 4 rounds of Cipro/Flagyl and Augmentin and one course of Prednizone, but it's still here. I had a seton placed about 3 weeks ago, and am going on Remicade in one week. Before last summer the Crohn's was only in my ileum (that I knew of), and I've been mostly in remission from symptoms for the last 15 years.
I'm depressed about the whole situation, and having to go on meds, and wanting this thing to heal.
It feels better not being alone though, so thanks for starting this support group.
A fistulectomy may or may not help. I had 2, one without seton placement and one with, neither helped. I got diagnosed after, my GI suggested that had I been diagnosed and they treated it as Crohn's before the surgery, it may have been successful.Hi all. I'm brand new here and happy to have found the site. Two questions for you. First, after 18 months struggling with recurrent fissures and anal abscesses, I've now been told I have a fistula and am having a fistulectomy in two weeks. While I'm hoping the procedure will help resolve this issue, I'm dreading the recovery. Any tips?
Also, I am in my early 30s and have had 15 or so years of stomach problems--alternating diarrhea and constipation, stomach cramping, need to have a bowel movement immediately after eating, etc. Even with the fissures, abscess, and now fistula, my doctor is hesitant to diagnose Crohn's (it runs in my family) because I had a normal colonoscopy in Sept. I can't decide to be happy that she thinks my issues aren't quite as severe or to push more for a diagnosis, especially given the fistula, which apparently does not often occur in a healthy person my age without Crohn's.
I'm grateful to find the group and appreciate any advice you have to share! Wishing you all a day of feeling well!
Named mine too, Charlotte and Charlie.Humira loading dose just 1 week ago and already my fistula is healing SO much better. I am totally shocked. I wasn't expecting such a quick result. I hope everyone on here gets better quick! These things are rough to deal with - My husband and I had named mine finally since we talked about it so much. Ha!
thanks for the info, more than what the dr explained.Hi zxcvb. Sorry to hear about your diagnosis - it's a lot to take in, huh? A fistula is basically a tunnel caused by inflammation and doctors here often refer to it as a 'communication' between internal organs which shouldn't be there i.e. between the bowel and the bladder. Like the others have said, they will probably try meds to see if they can close the fistula and prevent the abscess.
Getting the inflammation under control will be important for this too and food wise, I guess trying to avoid anything which aggravates your symptoms. It might be worth keeping a food diary or trying an elimination diet to identify the foods that make you feel worse.
Indeed I think resection of the diseased portion of bowel is the best option followed by treatment with immunosuppressant drugs and hopefully achieve a long remission.Zxcvb
You and Sarah have the same type of fistula. This type don't usually cause a lot of pain but are really hard to heal with meds.
thanks, i never had surgery, and it has not been discussed as this whole thing is still new to me. my pain and D have only started about a month ago. never had a problem before then. Pain was mild but no D first. Felt ok so went out that night and we ate buffalo wings for appetizer and a steak salad. so i guess that caused the small intestine to inflame further. thats night the pain was extreme. the next day as well. and thats when i went to the hospital. they did a ct scan and said crohns. i went to a gi, he did a ultrasound, mri with contrast and Prometheus test. ultrasound negative, mri and Prometheus positive for crohns. the MRi showed a fistula forming he said in the small intestine. I was then put on entocort, and for about a week before had been on pentasa. Going to a another GI for an opinion. But the first one basically told me eh i dont know take these and we hope for the best. my one question is will i ever be able to eat anything i want again? will i ever be able to eat a steak again or Chinese food or wings when i watch a game or is my life going to be different from here on out?The fistula may be causing some things to by pass part of the bowel, if its inflamed and thickened food may be struggling to pass through the narrowed section, have you ever had surgery or has it been discussed ?
thanks i guess thats why im going for the second opinion.Zxcvb
You and Sarah have the same type of fistula. This type don't usually cause a lot of pain but are really hard to heal with meds.
If I knew prior to my surgeries what I know now, I would have opted to go the medication route first as well (if my medical plan would have covered it).We have had the surgeon opinion we are going to try and meds first. Sarah disease appear to be 18 cm in length 10 cm higher than a colonscopy can reach.
My daughter is a competitive swimmer training between 12 and 16 hours per week.
It's bad enough for an adult, but for a child, that is awful! how old is your son now?hey im with u all guys . my little boy . has been plagued with abscess.s and fistulas si ce the age of 2 hes has 3 drainages. fistula layed open twice. he. ant have a septon put i. cause the fistulas are blind . hes developed a new one but this time it has boken at the surface so we may be able to have a septon placed . hes been on infliximab since octobrer and aza since dec .we had to stop it end of jan as his neautrophils went to 0.03 but e gave it another go and bis levels have been 1.3 for 3 Weeks so hangi g in there . hes had to flares of an abscess since hes been on these drugs and a new fistula form we giving it til april to see if the meds are working then its back to the drawing board for us . has anyone use tracoliums biologics im going to ask at our nxt apt . keep the faith we find a cure .xz
Hi there, have you tried wearing fitted briefs boxers( just so nothing can fall out the legs) and folding a few 10cm by 10cm gauze swabs and putting them between your butt cheeks.Does anyone have any tips on playing sports with a perianal fistula? I really want to start getting active but the drainage gets bothersome at times...
I run and cycle, the only times my fistulas were bothersome during either were when they were new, and when I had setons. Sometimes when they swell up, running helps relieve the pressure.Does anyone have any tips on playing sports with a perianal fistula? I really want to start getting active but the drainage gets bothersome at times...
Wow, you ride a bike after going through that. That's inspiring. I used to do that, but can't imagine it now. I've been wondering if I'll ever be able to again.I run and cycle, the only times my fistulas were bothersome during either were when they were new, and when I had setons. Sometimes when they swell up, running helps relieve the pressure.
Congratulations! That's so great.Have now had 3 doses of Remicade and my fistulas are actually starting to feel better. They are still there, but I am seeing much improvement!
One more surgery was scheduled (to remove rectal stump and mucus fistula+close the rear), but doctors are advising to postpone that and take atleast 3 doses of Remicade, and continue Remicade 'atleast for a year' after surgery also. If the fistula dries up before surgery, then 'we might try to separate the intestine from the tummy wall when we open you up'.Hi all,
I had a notorious colocutaneous fistula before my surgery in Aug 2012. Currently I am medicine free. However the fistula site on tummy skin never fully stopped discharging in last 6 months (something like 2 drops of puss a day). CT scan followed by CT enterography both showed the small intestine is stuck at the same site with the inside of the tummy wall and probable 'initial stage of enterocutaneous fistula formation'. As you can easily understand, during the next flare this can easily turn into a full flowing fistula.
I am starting to notice improvement after three doses. Got a feeling it's going to take awhile for them to close though.Yesterday something urgent had come up, therefore I am completing today, I have a question to all of you.
One more surgery was scheduled (to remove rectal stump and mucus fistula+close the rear), but doctors are advising to postpone that and take atleast 3 doses of Remicade, and continue Remicade 'atleast for a year' after surgery also. If the fistula dries up before surgery, then 'we might try to separate the intestine from the tummy wall when we open you up'.
It seems Remicade is effective in closing fistulas. My question to all of you is, those of you who had fistulas and have tried Remicade, was there any partial improvement/ total closing? How long it has taken?
Though I am medicine free now, I have mild symptoms like uneasiness when I try to sleep/ hear lot of sounds in the abdomen after a meal. It is not an emergency, but should I go for Remicade hoping that it is likely to do more good than having adverse effects?
Thx littlemiss, I am thinking in the same direction. One of my worries initially was to use this weapon now and stop it after sometime and later on not being able to use it in time of real need, because it might not be effective for many 2nd time around as it seems.I would say go for the remicade.
I'm due to start it next week and I don't really have any symptoms atm. But I hate knowing the fistulas are there and I'm not doing anything to try and prevent them. They can cause to much damage and as you know lead to surgery. So its best to try and prevent that in any way you can in my opinion.
Poor little guy, bad enough having to deal with this as an adult, must be really rough on a kid. I agree on not letting it take over his life, it's important at any age, but especially for a child so young. :hug:hi alliruns lewis is now six hes having a rough time at the minute after his last infliximab hes been getting head aches and his lympnodes are swollen in his neck his stomach is hurting again i think we are going to be giving up infliximab soon and our doc may want to try something else god knows what but i.ll be damed if i let his disease take over his life i.ll fight tooth and nail to make sure we get the best care for him and the right treatment
. i make the kids laugh by saying i.ll kick crohns bum and start doing karate kicks . u gotta laugh and have fun or i think ud cry lol hope all your lovely ladies and gents are well and not having to many problems .xx
Do you think that maybe your fistulas are irritated? Do they hurt? I'm not sure if bleeding is a problem when there is no pain. I would check with your doc, just to be sure. I have a jpouch and go to the bathroom often, so mine tend to get irritated more often.I am supposed to see my doctor to get my seton removed tomorrow, but I am feeling not very optimistic. He said 2 weeks after being on Humira we can take the seton out and it may just heal up!!! Things were looking great until about 2 days ago... My drainage has been improving greatly, but then all of a sudden fistula seems to be bleeding more?!?!? Is this a part of the healing process, as in maybe a good sign?
Getting back in to see my surgeon was so difficult that I didn't get to decide, I got the appointment cards in the mail. I was still getting drainage when my setons came out, though it wasn't that much, can't really quantify it, but I was using 2-3 panty liners a day.For those of you others with perianal seton, how do you know when its stopped draining enough to see the surgeon again? I have to pay a hundred dollar copay each time I go in because I don't have insurance so I'd like to be sure.
Getting back in to see my surgeon was so difficult that I didn't get to decide, I got the appointment cards in the mail. I was still getting drainage when my setons came out, though it wasn't that much, can't really quantify it, but I was using 2-3 panty liners a day.