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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Can Remicade help in my case?


11-03-2009, 03:19 AM   #1
Mazen
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Can Remicade help in my case?

I have put this in my story section, but I'm desperate for help, so I posted it here also seperately.

My latest MRI shows a fistula in my ileo-cecal region that is pushing outwards towards my abdominal muscles, and causing me a painful mass in my lower right area. It is like I have a small ball protruding from my abdomin that is sensitive to touch and hard like a rock.....

Now the questions is: If I start Remicade can it help in my case, or the only option now is surgery? One GI says try Remicade, the other says Remicade will not help in this case and the only option is ileocecal resection?????
11-03-2009, 06:50 AM   #2
drew_wymore
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I've always been under the impression that Remicade/Humira can be used in a conservative approach to treat fistulae and that surgery was only needed to drain it but not a resection.
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11-03-2009, 09:16 AM   #3
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My GI told me that Remicade has been successful in closing fistulae in a lot of people. I tried it, and it did not work for me, but I think it is definitely worth a shot if you are trying to avoid surgery. I did not have any problems with the Remi, other than it just didn't work for me.
11-08-2009, 05:38 AM   #4
kello82
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hey maze! srry i didnt find this sooner....i got my first fistula about 8 years ago and went on remi right away. i had a minor surgery to expose the tract as it was very shallow that way it could open to the outside...the remi healed it and kept it away! in fact, it wasnt until i stopped taking the remi, due to it losing its effect on my other symptoms, that i started having fistulas again.
so in my experience, the remi was very effective in helping my fistula. mine was on my butt though, never had one on the abdomen.

what will *probably* happen is that the bulb on your stomach will "come to a head" which means that the pus that is trying to escape is just near the surface. i could always tell when a fistula was ready to break through becuse it feels like a donut kindof. if you feel it and the center is very soft but then around it is a firmer ring....that to me was always a sign that it was almost there. a surgeon can amke a small cut and relieve the pain SO much. really maze, it feels SOOO much better when its released.

have you seen a surgeon about this at all? not about having a resection, but about other surgical techinques for a fistula? i had all kinds of drains and things to keep my fistulas open and draining while we tried from a medical standpoint to heal it. there is even this stuff called "fibrin glue" that is like the pump isulation around a window you know? like whipped cream! you squirt it out of the can and it expands in the bowl? its like that but they squirt it into the fistula tract and it expands to fit the tract. this gives the fistula a little nudge to have something to "heal to" if that makes sense and as new skin is formed the glue slowly disentigrates. its like packing gauze in a wound to encourage the healing...where as if you just left it naked it would heal incorrectly and create pockets for more infection to form.

ok that was way too much but clearly i have a lot of info on this. there are SO many differnt ways to try to treat a fistula so i hope any of these are possible for you instead of going straight for a resection!

if you have a question on any of that, ask away!
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11-09-2009, 07:47 AM   #5
Mazen
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Thanks Kello. I will hopefully start the Remi soon, but my doctor put me back on antibiotics to clear the puss from the fistula. Luckily I don't feel any pain now, but the mass is still there, and like you said when I feel my abdomin it is like it is soft in the center and hard arround it. But nobody mentioned other surgical optins then resection? Maybe I should ask my doctor about them........
11-09-2009, 07:55 AM   #6
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Hey Mazen, good luck with the remicade. Back to the old Flagyl and Cipro huh... well it is true with Remicade, no infections allowed. I hope you get long relief as some people did on here, I wished it worked for me. I am just taking a cipro or flagyl (1) every other day, and so far, no major pains. They say it is a young persons disease, thank goodness I am not young anymore! Good luck let us know your blog of your Remicade adventure!
11-09-2009, 08:38 AM   #7
Mazen
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Thanks. Yeah, the Cipro and Flagyl seem to be the only things that work for now. Hope the Remi works; i'm afraid of the side effects but i guess it is my best choice now....
11-09-2009, 02:03 PM   #8
CrohnsHobo
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I had a fistula many years ago and they gave Remicade then and it closed it up and now I have been on Remicade for about four years again. Have never had a fistula since.
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11-09-2009, 08:17 PM   #9
CanadianBella
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Im being put on Remicade because of a fistula, I havent started yet but should be next week.
11-10-2009, 08:19 AM   #10
Mazen
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Hi CanadianBella. so we are now in the same boat. I also should start Remicade next or the week after.....
11-10-2009, 08:45 PM   #11
CanadianBella
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Yes Mazen we are! My first infusion I found out today will be on Tuesday.

I found out about my fistula in June. I was in an insane amount of pain and went to the ER and the CT found it. Since then I have been trying to get the funding from the government for coverage and I finally have it all in place. I had two GI's tell me that remicade was the best option before me. Anytime thy can avoid surgery that is the best option. And talking to the rep helping me with this whole Remicade process she tells me that alot of her patients have had it work out too. Lets cross our fingers for us!
11-11-2009, 04:46 AM   #12
Mazen
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Yeah. The same for me. My fistula was found through an MRI. Where is yours located? Mine is in the ileocecal region. Do you feel a lump protrubing there or is it only pain?

Also I saw 3 GI's. 2 told me Remicade was my best choice, the 3rd was saying surgery. Well, I guess I'll chance with Remi on the hope that it helps me avoid surgery. Good Luck!!!
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