I am a 35 yearl old male and have been suffering from Crohns/Colitis for the last 5 years...BAD! I had my colon removed in 2006 and had the Jpouch done in 2008. The pouch function has been great but in the last year I have developed a number of fistulas. My doctors started me on the remicade 4 months ago and now after 4 infusions they have had no effect on the fistulas. I am recently divorced and am now single and on my own, working full time, and these fistulas have become a real downer. They are so painful and go back and forth between draining and swelling. My social life has gone to crap, all I want to do is go home and take baths and lie in bed and rest. I used to be very athletic, worked out all the time and now I'm a home body, a recluse....this is so frustrating and depressing. Anyway, my doctors say the remicade should have worked by now and are now switching me to Humira. If this doesn't work, Im going to look at getting a Kock Pouch done at the Cleveland Clinic. Has anyone had any success with Humira and Fistulas? If I go back to having an ostomy, will this likely end the fistula problem down by my rectum? The fistulas sometimes leak stool like fluid so Im hoping the move to an ostomy will heal them up. I just can't deal with this pain anymore and am ready to throw in the towel, this is so depressing...All I want in life right now is to be pain free. Is there anything I can do to help get these under control besides sitz baths and Flagyl? Im hoping the Humira works, but I'm trying to hit them with everything I can!
Fistulas.....Ugghhh.....Help!
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Thats brutal Brandon!
I dont have any experience with Humira but I am on Remicade. It has worked for me but hasnt completely healed up the fistula in the 2+ years Ive been on it. Thats too bad that the Remicade hasnt worked for you. Hopefully the Humira does.
Good luck and welcome!
I dont have any experience with Humira but I am on Remicade. It has worked for me but hasnt completely healed up the fistula in the 2+ years Ive been on it. Thats too bad that the Remicade hasnt worked for you. Hopefully the Humira does.
Good luck and welcome!
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Welcome Brandon 
I can't help much with info. I had two fistulas in my small intestine and ::think:: they have cleared up with flagyl and steroids. trouble is they won't have a look as the scans are expensive, unless I get bad symptoms again.
I hope you can get some relief soon!
I can't help much with info. I had two fistulas in my small intestine and ::think:: they have cleared up with flagyl and steroids. trouble is they won't have a look as the scans are expensive, unless I get bad symptoms again.I hope you can get some relief soon!
imisspopcorn
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:welcome: Brandon......I don't have any experience with fistulas, but I just wanted to say, "hello".
I am on Remicade as well. There are others here who deal with fistulas, and have had good results with Remicade. Check out the Remicade club thread for some personal experiences. It is in the treatment sections.
Good luck, and don't give up. If you need a good laugh, there are plenty of funny and supportive people here.
I am on Remicade as well. There are others here who deal with fistulas, and have had good results with Remicade. Check out the Remicade club thread for some personal experiences. It is in the treatment sections.
Good luck, and don't give up. If you need a good laugh, there are plenty of funny and supportive people here.
Fog Ducker said:
Hey man thanks for the reply. Quick question - When you started the Remicade, were your fistulas pretty swollen and painful or just mild? It seems like the day of and after my infusion they feel great, but the swelling just comes back. I have gone into each infusion with bad swelling and pain and I have a feeling its too much for the remicade to overcome. I am thinking if i go into the next one with them somewhat under control that the remicade will take hold better? My docs are ready to switch me to Humira but I'm not exactly ready to give up on Remicade yet....I had such high hopes for it and once I quit I can never go back to it.
Thanks for welcome message, I have been reading this forum the last few days and notice you post quite a bit, thats great of you. Like I said my social life has gone to crap and I think joining this and talking about it will help me immensely. I know what you mean about the costs, since my divorce last year ive been paying $550 month just for my blue cross. It is a pretty good plan though, my out of pocket max for the year is 5k. Ive hit that max the last 3 years, so at least 11k a year i spend on this (25% of my income).....Im only 35 and sure wish I could spend it on something else! I hope things are going well with you, thanks again.shazamataz said:Welcome Brandon
I hope you can get some relief soon!
Hey Brandon! I'm a J poucher too! I found out a few months back I have crohns. I get awfully scared when I think of loosing my pouch. I have not had any fistulas (yet). So, I will be following your posts closely. I am sure it is depressing. I cried when they told me I had crohns. She said matter of factly...if the drugs don't work--that pouch is coming out! Nice! I thought about it...and K pouch is what I would do too! Keep posting. Try and stay positive. I'll keep my fingers crossed for you! Sue
Hi Sue! I was the happiest person on earth when I got rid of the ileostomy bag and got my jpouch....I was normal again. I did have some bad bouts of pouchitis the first 3 months after the pouch but since then it has worked great so hopefully it goes the same for you and I pray you don't get fistulas, they are horrible! The kock pouch would be the next thing for me, and to be honest would take it if it meant the fistulas went away. At least with the kock pouch you dont have a bag and all the awkwardness that goes with it. I would like to take my shirt off at the pool and beach! Where are you located? Before doing anything surgically, check into the cleveland clinic...they are awesome.Sue-2009 said:
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brandon13 said:
To be honest I dont really remember, sorry. I wish I did. What you are saying makes sense about going in with them a little under control might help. Do your docs say that the Remi should clear them right up?
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Welcome Brandon! I have only had anal fistulas--two healed up on their own but left lovely skin tags in their place...ugh. One I had to have removed surgically (fistulotomy). At the time, I wasn't diagnosed with Crohn's so all I was given was antibiotics, but the surgery worked for me. Taking a hot bath always helped also--I think it helps them drain and get rid of some of the soreness. I don't have any fistulas anymore, but I'm currently on Humira. Aside from injection site reactions (redness and now a small bruise), I haven't had any side effects. Best of luck to you and I hope you find this forum helpful as I have!
Brandon, I'm in Michigan...about six hours from Cleveland Clinic. I am not sure if I would do the drive or go to U of M. I really hope they can save your pouch. But, remember how good you felt with the ostomy (hated that thing) but, I remember thinking..."wow, I was really sick!" We get so used to feeling like poop (HAHAHA) But, if my meds don't work, I would do the K Pouch. Life is way to short to live in agony! Good luck, either way...you'll feel better. Its gettin' there thats tough! Sue
SueHey Brandon,
I had fistulas, very bad, for quite awhile. We tried Remicaide and it failed. We then tried Tysabri and that also failed. I then had an ileostomy done for a year to rest the tracks (while on Tysabri) and let them heal. But they didn't heal. So no I have a permanent colostomy and had my rectum removed...which did take care of the problem...though it was something of a nuclear option.
The short answer is that I don't think Remicaide is the only line of defense. I know Humira occasionally works for people for whom Remicaide fails. Tysabri is another option, though some people do not like the possible side-effects. Also, before giving up on Remicaide, you should make sure that you have tried the highest doses. They generally start people on lower doses and then build up.
The ileostomy definitely significantly helped my fistulas...the problem was just that the tracks never healed, so when they reversed me I would have gone back the same way. My surgeon considered going in an doing a "fistula cap" that might have helped it heal, but it turned out I also had developed strictures from scar tissue (so my options for reversal were really limited).
Otherwise, I can completely sympathize about how hard fistulas can be. The constant drainage caused my skin "down there" to become constantly infected and irritated. There were many times I couldn't walk or even sit up comfortably! Forget about other types of activities.
Anyway, I'm really sorry you're going through this. Good luck and feel better.
Erin
I had fistulas, very bad, for quite awhile. We tried Remicaide and it failed. We then tried Tysabri and that also failed. I then had an ileostomy done for a year to rest the tracks (while on Tysabri) and let them heal. But they didn't heal. So no I have a permanent colostomy and had my rectum removed...which did take care of the problem...though it was something of a nuclear option.
The short answer is that I don't think Remicaide is the only line of defense. I know Humira occasionally works for people for whom Remicaide fails. Tysabri is another option, though some people do not like the possible side-effects. Also, before giving up on Remicaide, you should make sure that you have tried the highest doses. They generally start people on lower doses and then build up.
The ileostomy definitely significantly helped my fistulas...the problem was just that the tracks never healed, so when they reversed me I would have gone back the same way. My surgeon considered going in an doing a "fistula cap" that might have helped it heal, but it turned out I also had developed strictures from scar tissue (so my options for reversal were really limited).
Otherwise, I can completely sympathize about how hard fistulas can be. The constant drainage caused my skin "down there" to become constantly infected and irritated. There were many times I couldn't walk or even sit up comfortably! Forget about other types of activities.
Anyway, I'm really sorry you're going through this. Good luck and feel better.
Erin
Erin...I hope you have adjusted to the the ileostomy well. I have the jpouch and worry that it will go someday. But, I have to remember that its better than being sick all the time..Did your fistulas heal with meds or on there own or with surgery? I've said it before...this disease just is bad...very bad. Sue
I actually live up in Alaska, i just go to cleveland for surgeries because I trust the docs there. thanks for the info Erin. my fistulas are on the inside of my left butt cheek, there is three openings. I just started humira 2 days ago and have seen some improvement, I pray that it takes hold. If not, im gonna have to go the ileostomy route....maybe someday the fistulas will heal and i can try it again. Did you look into the kock pouch or BCIR? they are essentially a pouch under the abdomen, so no exterior bag.
Brandon...I don't know what a BCIR is...I am so happy the the humira shows some improvement...I keep looking for your posts! Actually, I am using pentassa and rowasa enemas..But last night, I felt something in my rectum area..nice, its Saturday...THis stinks! Keep us posted...I do pray for you and me that something will help us! Good luck! Sue
Hello, I'm a new member...I have had a koch pouch for about 30 years, (I'm 54). I had ulcerative colitis and have fistula's in the past, and one now. My rectum and colon were removed at the same time in Boston, Mass. I've had multiple surgeries in N.Y., S.F.,CA., and in Oregon. Now, my DR.'s want to put me on one of the two drugs you've used, and don't like the possible side effects. Anyway, nice to "meet" you.Goodnite.
I've really been struggling with my condition, if have as abscess on my anis that I can't get to go away, and I have needed to had it drained twice. I have the fistula for about 4 months now and I really just want to know how long these take to heal
Thank you for any help
Thank you for any help
