Fistulas, Fissures and Abscesses Support Group

Crohn's Disease Forum

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Can't say I'm happy to be part of this support group, but I'm happy to be part of it with you guys
 
I know I don't post on here much, but I'm happy to join this group (or at least as happy as I can be, given what the group is for). I'm still pretty new to a Crohn's diagnosis, but fistulas have taken the early lead as my most bothersome manifestation of the disease.
 
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!!!
 
Jaano711 said:
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!!!
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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 :-/
 
I'm fortunate enough not to have had fistulas (touchwood) but Intestinal abscesses have ruled my life. Still have one under my liver even though I just had a resection and ileostomy to get rid of them. This one developed from the surgery - You just can't win with this disease!
So count me in - at least I'm with great company. :) :) :)
 
AlliRuns said:
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 :-/
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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).

I realize colostomies and ileostomies are not exactly the same thing, but my point is that we humans are incredibly adaptable, and many people live full and normal lives with them. My father's example means that, should my Crohn's ever reach a point where either of these would be considered necessary, I would be at peace with it.
 
Hello everybody. I just wanted to say that I had surgery on my fistula on January 21st and it hasnt returned yet. :D
 
Thats good cody!
I had surgery on my fistula on 3rd Jan. I just had a follow up appointment with my surgeon today and he said it looks good. Healing but not healed yet, and he is fairly confident it has fixed it.
 
The permanent ilieostomy is actually a relief. It is an awful to get your head around both physically and emotionally, but once I got to the point of having everything fail. I had seasons and fistulas splayed open, been on remicade that nearly killed me. The reaction saw me helicopter retrieved to a capital city and being in a coma - not a good thing for m kids and husband to go through!

Basically my rear end had sprouted so many fistulas it was more like a watering can (CRS description). I also had rectovaginal fistulas that were just down right depressing, and had started developing a labial abscess. As you can imagine both painful and embarrassing.

I had the surgery in August last year, and whilst the rear wound is being a little problematic, the Stoma itself has actually given me freedom and my life back. It may be somewhat different than before but it is much better. Everyday I accept the Stoma more. I am back at work, can actually go swimming, have an alcoholic beverage if I desire. I know longer scan for the toilet as soon as I enter a building. The only things I am yet to do is cycle as me rear wound is still being packed and draining.

So from here on in it is onwards and upwards. I now share my life with my new friend, my Stoma. She is lovingly revered to as Miss Piggy in our house.

Remember though, this is a worst case scenario and even so it is actually a huge relief.

Cheers
Jano
 
I'm new to support group but need to be in contact with people who understand about Crohn's. In a flare, can't take any biologics or Imuran, messed with bone marrow. Precnisone 45mg a day. Fistula, anyone heard of hyperbaric treatment for fistula's, my GI is referring me for it, non invasive oxygen therapy. I guess drug trials are next.:ack:
 
had a seton in now on remicade and happy to say they seem like they are closing .. i no longer have mouth sores and im starting to feel less tired.. there is light !
 
If you have an abscess and fistula when first diagnosed, does this mean that the disease is already in a severe stage when there are no other symptoms?
 
Yes. GI says that this is a complication that usually happens down the road. When found first presentation, the most aggressive tx needed. My daughter has had numerous hospitalizations with TPN, steroids,antibiotics, Remicade, and finally took her to Vandy for Setons. Added Methotrxate recently. Great difficulty in getting her in remission. Life changing for a perfectly healthy young girl until this. This is my second daughter with this disease. Older daughter(31 yrs) getting small bowel resection and ileostomy March 13th at Vandy.She presented with typical belly pain and wt loss, and has fought a good battle for 15 yrs until now. Please pray for both of them.
 
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.
 
I'm definitely joining this group! I'm open to any and all tips. I have an abscess and a fistula and am having a seton placed on the 15th. Not looking forward to it.
 
aloe said:
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.
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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.
 
Augmentin was a kind of antibiotic that is supposed to be taken after a course of Cipro and Flagyl if they don't work. That is sort of how it was explained to me at least. It didn't work either though.

Prednizone didn't help me either. I think they gave me that as more of an overall med to calm down the flare-up and inflammation. It didn't help with that or the fistula.
 
The antibiotic in Augmentin is Amoxicillin. If you are allergic to the penicillins like I am, Augmentin is on the no way list.
 
so the mri results came back. they said they are pretty sure it is crohns in the illieum. They said a fistula is starting to form in the illiuem. not really understanding what that means. My understanding is that means its leaking. but there is no abscess. they now put me on entocort, flagly again, and still taking pentasa. im going next friday to NYC for a Gi that my GI recommended to get a second opinion on it. They also want to start me on humira after a TB test is done. Im still new to this stuff. My dr said we need to hope an abscess does not form at this point. Can anyone explain some of this to me, the good the bad? is there anything i should eat specifically to help with the fistula or prevent an abscess? does an abscess always mean surgery? also as of last night the back of my throat feels funny, like theres something there touching it and i keep drinking and stuff it wont go away.
 
Zxcvb, I don't think there is anything you can eat that will prevent a fistula, however, once you have one, nuts, seeds, corn, anything too rough will make things more painful.
 
My daughter has a fistula further into small bowel. You want to know where the fistula goes. My understanding is that humira, remicade and aza are all used to try and heal fistula. Pred is good for inflammable bit doesnot help when trying to heal a fistula.
 
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.
 
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!
 
cap13 said:
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!
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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.

My colonoscopy was normal as well, I have perianal Crohn's only. I've been put on Remicade.
 
a fistula is an abnormal connection between the bowel and another part of the body, either another part of the bowel or outside to the skin or to another organ. It doesn't necessarily mean there is an abscess there. Diet will not really help in my experience, however people have excellent results with humira and the clearing up of fistulas. If an abscess did form it would probably be drained by the insertion of a needle through the skin. This may be done under CT guidance if the abscess is hard to reach. Surgery would only be needed for an abscess if it kept returning due to a diseased part of the bowel. In that case they would probably remove the diseased part of the bowel and any remnants of the abscess as well s fix the fistula. Intestinal abscesses usually require a stay in hospital and Iv antibiotics. After it has been drained you may need to have a drain inserted so that it doesn't reform.
Hopefully the humira will do the trick for you. Let us know how you get on,
:heart: anna
 
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!
 
myriahdawn said:
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!
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Named mine too, Charlotte and Charlie.
 
Grumbletum said:
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.
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thanks for the info, more than what the dr explained.
 
so my MRI that showed the fistula was last tuesday, i was in pain all last week. friday they put me back on flagyl, on entocort, and ive been on pentasa. Sunday they pain was not so bad yesterday also it seemed to become less. Today there is mainly discomfort not pain. Is that because the inflammation has gone down? or could it mean the fistula is healing itself? Is the fistula what caused so much pain? i wouldnt eat anything and i was in pain. Now i feel somewhat normal, besides the bathroom time, the stomach feels a little discomfort but not the pain it was for the past few weeks. Im just concerned if its just the pentasa and entocort making me feel good now and the fistula still there open? or does that mean the fistula is healing which im hoping for.
 
Hi there did the doc say where the fistula was? I assume its peri anal, the flagyl is a great drug for that area, I would imagine its calming things down I think it would be a bit early for healing yet as they tend to be tricky little buggers! Has your doc mentioned treatment with azathioprine or 6mp as they have proven useful with peri anal crohns whereas the results with pentasa are very conflicting with some claiming they're next to useless. The entocort has a lot less side effects compared to prednisilone but only targets a certain area of bowel.
 
the crohns and fistula he said are in the terminal illeium, if that makes sense. i have the paperwork but not with me right now. does a fistula cause the pain though? because yesterday and today the pain is becoming less and less it seems. like discomfort right now, not the pain that had me crouched over last week. No talk of azathioprine, but he mentioned humira. My promethius test came back positive today. its like i dont know if i should be happy they know and can treat it properly or if i should be upset. honestly i like to eat, and i fear this will stop me from eating what i want and like.
 
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 ?
 
Just to add I think you are in a much better position now once you've been diagnosed, you can now receive the treatments you require to improve your quality of life. Keep thinking positive and let us know how things are going.
 
I had better join here as well. I have severe Crohn's, in my colon and rectum. My fistulas were described as a "bowl of spaghetti", after two years I still have two that are draining under the skin, and possibly a recto-vaginal fistula. Having an MRI in April. The lining of my large intestine was ulcerated, and is now scar tissue. I had one awful rectal abscess, and don't want to experience that again. An ileostomy no longer scares me. The surgeon said that is my next option.
 
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.
 
Hi tuff my rectum is also a mess I have had many abscesses in that area and it has been described as a rabbit warren, at the min I have a loop colostomy but around 70% of my faeces still passes through the rectum! I have a sinus on my groin that used to pass gas and the thought is it is coming from the top of the rectum. I've been on 6mp for over a month now and am waiting on an MRI to see if they can identify where it comes from.
 
Catherine said:
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.
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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.
 
bigtruck said:
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 ?
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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?
 
To be fair diet is a very much an individual thing and what one person can eat with no trouble may have another doubled in agony, personally I have had Crohn's for over twenty years and can eat and drink most things, I would hope once you recieve the correct treatment you shall be able to eat what you please, the biggest problem is if you have a strictures which is a narrowing of the bowel, hard to digest and fibrous stringy foods can be hard to go through the narrowing causing pain and often partial or complete blockage. I wish you well and keep us posted.
 
Catherine said:
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.
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thanks i guess thats why im going for the second opinion.

thanks bigtruck. Kinda excited to see what they say with the second opinion. im feeling pretty good now. almost no pain as to a week ago i was in extreme pain.
 
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.
 
Catherine said:
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.
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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).
 
My fistula originated in my terminal ileum and was connecting my bowel and my bladder. I had a lot of pain when I first became ill, in my pelvis cos of an abscess connected to the fistula and in my LRQ cos of inflammation in the IC valve area. This pain reduced significantly when I was put on Prednisolone.
As you'll see from my signature, my doctors gave the med route a fair go and for a while I think the fistula did close when I was on Infliximab, but 6 months after I came off it, my symptoms returned. I believe people can have an intestinal fistula without pain, depending where it is. I did have pain - spasms in my pelvis from UTIs and ( sorry if this is TMI ) gas and fecal/food matter passing into my bladder from my bowel.
Like Catherine says, it's been proven that internal fistulae don't often heal on meds.
I know, it's a lot to take in in a short space of time. The good thing is that they have identified the fistula early in your case, as some people can have these things drag on for months or longer.
 
does anyone else have like grains in their feces? it has been a few days and looks like corn starch or tiny seeds. and theres alot of them every time. Not sure if its from the meds maybe? anyone else have this problem or should i mention it to me GI
 
Pentasa can cause small gritty grains in faeces, or are you eating anything else with grains or seeds in it.
 
no im being careful to not eat anything with grains or seeds. Ive been on pentasa for 2 weeks and this only started maybe sunday.
 
Count me in! I have struggled with fissures, fistulas, and abscesses since being diagnosed. It is nice to know that I am not alone.
 
Thankful to have found this group. I have gone from having a couple fistulas for years, now the Dr telling me that I should consider an ostomy because there are fistulas everywhere down there! Setons places Feb. 1, not sure if they are helping yet or not. Not really sure what to think about all of it.
 
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
 
Lewis said:
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
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It's bad enough for an adult, but for a child, that is awful! :( how old is your son now?

Sorry haven't heard of tracoliums.
 
Tacrolimus, just did a quick search, seems to be a newer drug, or new to Canada? (i could be wrong) maybe why I haven't heard of it. The US information I found said it was used for fistulizing Crohn's, but the Canadian information did not, maybe not approved here for Crohn's yet and why I haven't heard of it.
It does have side effects that are similar to symtoms of Crohn's, Diarrhea, constipation, so it may be counterproductive, but maybe the side effects don't occur in all patients.

On the plus side, it costs approx $30 a day, so cheaper than Remicade.
 
I found that my fistula is less irritated after my Humira shot but slowly becomes more irritated, bleeding and draining right before my next shot. I went back from biweekly to weekly so I hope that eventually, I'll be able to get this thing healed. My GI started me on Imuran as well.
 
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...
 
simplelife said:
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...
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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.
 
I hoping for some advice and support I had a loop ileostomy in 2010 because my bottom was riddled with perianal abscesses and fistulas, also vagina so the surgery was done to try and settle this all down. (Setons were placed to start with but failed to help) i ended up having some of them removed which left me completely incontinent. As one went 3cm into my sphincter. While the loop was suppose to settle things down things only got worse. So last year in June I was left with no decision but to have a total proctocolectomy. When the removed my large bowel it was literally rooted strictures inflammation etc ! Ideas lucky I survived.

Fast forward to today and I'm still dealing with post surgical complications....perineal wound break down and a fistula going from the sinus to the vagina. Sorry for the opennes.

Just Tuesday I had my routeen fortnightly appointment with my surgeon and stomal therapist who are great by the way. And it seems all my complication add up to the fact there my be communication between the small bowel and vagina now. He done an eua a couple of weeks ago and 'found' something but didn't know what it was but with all my symptoms now vaginally bleeding he's certain there's another fistula.

I guess my concern is I thought after the major surgery I had last year would give me a little freedom but I guess not. I have severe advanced crohns and have so since the beginning.

I'm scared and don't know what to think. My crohns just keeps spreading and not giving me a break ! I had to have a part of my vagina removed in June last year so it worried me.

If it is a communication what do you think he would do ? More surgery I'm guessing, I'm already infliximab for the fistula I had vaginally post surgically.

Thankou for reading my long post I think I just needed to get it out as its been bothering me.
 
Oh Bottomless Mummy, you really have been through the mill :-( What happened with the fistula from the sinus to the vagina? Did they manage to heal it? Internal fistulae are notoriously difficult to heal on meds, but with vaginal involvement there are a few non-surgical options. There are quite a few people in this subforum who can advise about these.
 
Thank you grumbletum, I tell you what I'm over it. When they done the eua the other week they decided to lay it open so perineal right through to the back of the vaginal skin sorry in advance for openness so at the moment I have an open wound which is what it has been since June last year when it broke down. Surgery isn't my friend when I had my proctocolectomy every wound broke down !! And because of the extent of damage with my bowl and vaginal wall they had to cut pretty much from my just bellow my breast plate right into my pelvis.....straight down 36cm ! Not what I was expect. To say the least. Their now trying to obviously heal the fistula which has been laid open with remicade....which doesn't seem to be doing to much. When I went in on tues for my app they had to burn the granulation back.....hyper granulation....and they'll have to no doubt do it again next fortnight !!
 
simplelife said:
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...
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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.
 
Hi all, just found this thread. Its nice to have found a place where there are others that are going through and understand the course of this disease. Dx crohns this past january at TI w/fistula bladder to TI and abdominal abscess at surface draining on its own. Currently on remicade, waiting to see if the fistula will close on its own. No pain just discomfort. Hopeing (like the rest of us) for the best. Time will tell
 
AlliRuns said:
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.
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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.
 
These fistulas are so horrible! Its horrible to think how much damage they can cause to the rest of the body.
:hug: to everyone in this thread for everything we go through.
I know how much they get us down, but together we can support each other through the hard times. x x x
 
aloe said:
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.
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Yes, sometimes it hurts, but the pain goes numb after about 20 minutes.
 
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.
 
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!
 
AlliRuns said:
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!
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Congratulations! That's so great.

I was supposed to get my first Remicade infusion Monday, but got poison oak! They told me to postpone for at least a week and get a cortizone shot. I am hoping it's turned the corner by tomorrow, and that I won't need the shot, though I don't want to go against my doctor's orders. I think it's starting to get better, but still at the miserable and hideous stage.
 
Yesterday something urgent had come up, therefore I am completing today:), I have a question to all of you.

DD2020 said:
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.
Click to expand...

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?
 
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.
 
DD2020 said:
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?
Click to expand...

I am starting to notice improvement after three doses. Got a feeling it's going to take awhile for them to close though.
 
xX_LittleMissValentine_Xx said:
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.
Click to expand...

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.
 
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
 
Lewis said:
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
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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:
 
Help please!

Hi All...

I'm really hoping someone will be able to give me some advice. I have had 3 fistulas for 2 years. I have a j-pouch, and crohn's disease. Original diagnosis was UC, blah, blah, blah. My surgeon doesn't want to do any other surgery save for the gricilis muscle repair flap surgery. He said that he is afraid any other treatment would be ineffective, and he wants to go for the "gold."

Is there anyone on here that has had this surgery? I am scheduled for the surgery at the end of June, and starting to get very nervous about what to expect. I am so afraid of pain, my first 3 surgeries were absolutely horrendous (colectomy, sepsis, and jpouch connection). I can't find very much information online.

Thanks so much for any advice you can throw back at me... I really appreciate your help.
 
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?
 
myriahdawn said:
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?
Click to expand...

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.

Ill cross my fingers for you in hopes that your fistulas heal! Mine don't have setons in them anymore, but scar tissue is preventing them from closing.

Good luck!
 
Hi Missiereann, I don't know anything about the surgery you are having so can't help you there but wanted to send you a hug anyway. Its scary when you know you have surgery coming up.
Re pain after surgery: Make sure when you see your anaesthetist (and surgeon for that matter) that you are worried about the pain after because last time you didn't have enough pain relief. They can then look back at your history and prescribe more pain relief this time. Don't get me wrong, its never painless but they need to give you enough pain relief so that you can get up and get moving as soon as possible after surgery.
Good luck with it all,
:heart: anna
 
Hi!
Since I'm one of the lucky ones who has fistulizing Crohn's, I thought I'd join this support group. I had a rectal fistula develop in 2000. I went on Imuran and took 4 infusions of Remicade and it closed. By 2003, the skin around it started to to tear, and I was just tired of it being there. I still had pain from it after sitting for long periods of time. So in August of 2003, I had surgery to repair it. Haven't had any more problems with it.
I started having diarrhea pretty much every day starting in December of 2011. I'd been in remission since 2007. There were several things going on around the time the diarrhea started, (you wouldn't even believe the year I had that didn't have anything to do with my Crohn's) and it ended up being August before I went to my GI. After the usual torture chamber of procedures and tests, he told me I have 4 tiny fistulas connecting my small intestine to my colon and they were coming from a brand new patch of Crohn's a few inches from my old patch. So I've been on a cycle of Remicade. I'll take my forth infusion on Wednesday. If it hasn't worked, I'll probably be looking at surgery. Something I'd really prefer to avoid!

Current medications:
Imuran 150 mg
Lialda 2.4 gm
Levbid .375 mg twice a day
Multivitamin
 
I am so sorry to hear that Crohn's poked its tiny little head back into your life after 4 years of remission! Good luck to you... I really hope that the remicade works for you again this time around.
 
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.
 
Sorry for everyone's problems today. I am in a flare and on TPN if it doesn't work I will have to have surgery, I also have a fistula that may heal while I am not eating. I am supposed to get hyperberic treatment but don't know if insurance will pay. But you know I feel better than I've felt ever sense I was Diagnosed, I think I have accepted whatever happens happens and all is well. Keep your chin up, God will get us through.
 
Hi I think I have it bad sometimes. I have read through past posts and I have nothing at all. All I have is moderate active Crohns disease. I have fissures and anal skin tags but that is it. I am extremely lucky. In 14 years no abscesses or fistulas. I feel for all of you suffering. Take care everyone.

Alison
 
hetzbaby said:
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.
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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.
 
HELP - I have searched everywhere and I can't seem to find anything on this...

I started Humira about a month ago & my doc felt my fistula looked healed enough that my seton came out about 2 weeks ago!!! Everything has been going well, but the exit hole is soooo irritated and swollen. The area around the fistula exit is not hard or tender - it is specifically the exit hole itself. It is starting to look almost like a bubble or something... Is this normal healing process and is there anything that can help??? It is so sensitive. : (

PS - It is still draining, but really only after a sitz bath or when I push on the area around it. I'm very frustrated.
 
I don't really have experience with your situation, as nearly 2 years after seton removal, my fistulas are still draining. I think it would be a good idea to talk to your doctor. Good luck and hugs!!!
 
AlliRuns said:
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.
Click to expand...


I don't even have to use gauze or anything anymore, I just make sure I wipe well since the seton is in the way. That's why I'm wondering if its time to see him again.
 
Hi everyone! My husband has been suffering from all of the above (fistulas, abscesses, fissures) since about August 2012. Had a surgery to drain one of his abscesses at the very end of 2012, and that didn't do any good whatsoever. He just kept getting more and more, worse and worse. So, he just recently had his first ostomy, and we're hoping that his fistulas/abscesses/fissures will heal up some.

My question is: Have you had surgery/surgeries to help with your fistulas/abscesses/fissures? What helped? What didn't?
 
I am as happy as one can be to find this thread!

I had my first fistula almost 20 yrs ago. It's presentation actually ended up saving my life and helping with a quick diagnosis of Crohn's. It resolved on it's own after starting me on medication. About 1.5 yrs ago I started having fistula symptoms. The CRS, GI MD and myself decided to try and medically manage it (I was already on humira) as I really wanted to avoid surgery. We added antibiotics (flagyl and cipro). I had to stop the flagyl after developing severe neuropathy (which resolved immediately after stopping the med thankfully). The fistula kind of got better and didn't really bother me much but it just seemed to come and go and never really healed. I was just tired of dealing with it. So, the beginning of Feb 2013 I started Canasa suppositories to target the rectum. I had to stop after 5 days. I've never experienced such intense, excruciating pain. I'm not sure if the canasa contributed to it or my symptoms just progressed but I developed an abscess right by my rectum. Holy crap that was the worst pain of my life. It was like a war zone down there and my rectum was really really angry. At this point, I would do anything I could including surgery. I was put on prednisone, levaquin and a lower dose of flagyl. I had a seton placed 3/28/13. I really was stressed beforehand and shed a lot of tears. I was worried they were going to find multiple complications and suggest further surgery, colostomy, etc. I had read a number of really concerning personal stories re: setons the weeks leading up which didn't really help with the anxiety. I have to say I'm only one week out but I have had no real issues. The outpatient procedure turned into a one night admission, which was great. I would have been home second guessing what I was doing but instead I had access to IV pain meds, anticoagulants, and nurses to change my bandages. I even obtained the best night sleep that I have ever had during a hospitalization. I have had minimal pain if you could even call it that (I'd rank it at most a 1-2 with 10 being the worst). I took a week off work just take it easy but I probably could have gone back sooner. I think I went in expecting the worst and came out on top. I'm so much better than I was 3 weeks ago and if I had known it would have been this easy I would have considered this months ago. I do realize I'm only one week out but the power of positive thinking.

I'm just experimenting now with what kind of bandages work best, what's the handiest way to clean the area when you are out and about, etc so tips would be greatly appreciated. Also, my CRS said he probably wouldn't consider removing the seton for 6-9 months. I know some people seem to have them in indefinitely, I was just trying to get an idea on how long others had theirs. I'll do whatever it takes not to try and prevent another abscess.

Thanks for any input!
 
PREV POST: Everything has been going well, but the exit hole is soooo irritated and swollen. The area around the fistula exit is not hard or tender - it is specifically the exit hole itself. It is starting to look almost like a bubble or something... Is this normal healing process and is there anything that can help??? It is so sensitive. : (


UPDATE: saw my doc today and apparently the swelling around the exit hole was scarring and granulation. He chemically cauterized it and said we will need to do it again in 2 weeks. Has anyone else had this done? It was pretty painless... i just hope it helps!
 

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