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Surgery vs Remicade

This may have already been addressed in an earlier post that I couldn't find!!! I was just wondering what people's opinions are regarding surgery vs Remicade.
I have had a recto-vag fistula for about 10 yrs now. My GI thinks I may be getting another one going into my bladder. My Crohn's has been pretty quiet for about 4 yrs so the fistula wasn't giving me alot of trouble but last week I landed in the hospital after bleeding from it for about 5 days. I'm getting an MRI done next week to see the extent of the fistula(s) and the scarring etc.
The GI said I basically have 2 options (surgery/remicade) but made it sound like I have to pick the lesser of the two evils. Needless to say I'm kinda freaked about it!
I really don't know a whole lot about either option so I'm hoping I can learn from all of your experiences.
Thanks for any help you can give..........and I'm truly sorry that you have the knowledge to share, I really wouldn't wish this disease on anyone

Hi, Tammi:). I'm in a very similar position. I have an abdominal fistula. I have been on remicade for about a year. If I were trying to decide between the two, I would ask my doctor if trying remicade now means I can't elect to do surgery later. I enjoy my remicade treatments but they are very expensive and my fistula has not gotten any better after a year. I get periods of remission but it always comes back. I regret not trying surgery. My doctor is now refusing to consider surgery as an option, so I am seeking a second opinion.

On the positive side, my remicade had brought my crohns symptoms completely under control. I still occasionally experience mild pain between treatments, but I really feel that the remicade has saved my life. I honestly wouldn't be able to
manage my symptoms without it. However, something I did not know is that once you start remicade, you are advised not to stop (or at least I was) because if you go off the drug for extended periods of time, your body develops am allergy to the remicade making it difficult to get back on. I was told that pregnant women who have to discontinue use during pregnancy often have trouble going back on the drug. I have experienced no side
effects to the remicade.

If my doctor would allow me the option of surgery, even if there was only a 1% chance of it working, I would do it in a heartbeat. The risk is worth any chance of having a normal life to me.

Honestly, your doctor may advise you to do both.
Ps, remicade is not as scary as everyone makes it sound:). I enjoy my treatments. I get a day off work, we sit in lazy boys and watch chick flicks. It's very relaxing. If you do not have very good insurance or a stable source of insurance, I would think twice about starting remicade though. I take it every 8 weeks and it is $4000 per treatment. If you lose your insurance, they will not treat you unless you have cash upfront.

There is a rebate program called Remistart that helps with the expense of remicade and covers most if not all of the typical max out of pocket expense for most insurance plans. However, there is a $200 deductible per treatment using remistart and you must have insurance to qualify for aid. FYI.
Hi Tammi
Sorry to hear you have another one :-( I'm in a similar position too. I have a bowel to bladder fistula, and just recently felt another one starting which may possibly be vaginal. Had the Crohn's for about a year now.
My GI put me on Aza and Pred, then antibiotics when the first fistula was confirmed and another course recently when he felt the second. He also told me he'd applied for me to go on Humira. But since the second one's appeared, he has told me I will need surgery.
My understanding is that internal fistulae are very difficult to completely heal with drugs.
What's your GI saying: does he have a preference?
Thanks Loriebird :)
I have a feeling I may have to do both. Unfortunately, due to embarrassment and a cranky old doctor I had ten yrs ago I never told anyone about this and it's gotten quite bad. It bleeds everytime I have a bm, which is often now lol
It seems like everyone who has had surgery is happy that they did. I wonder why more people don't? Is it to hard to heal? The GI said that fistula('s?)(ea?) is actually a disease itself and apparently once you get them you're always prone to them
She also told me Remicade is quite expensive but Canada has some sort of funding that unless you're a millionaire you'll qualify so I'm happy for that.
But I'm glad to hear it's not that bad. The GI made it seem like neither options were very good!!
Thanks for the info, it really helps :)
I think doing both is probably your best bet, but if you think you can handle the trial on just Remicade to see how well you do, then go for it. I don't know if surgery and not moving to something like Remicade would be as effective though.

This is a tough decision. I had surgery a couple of months ago and I'm so glad I did it. Although I didn't have any fistulas, just an abscess. The fistula situation makes it a harder decision I suppose. My situation was luckily pretty straightforward once my doc knew the meds weren't going to get me better.

Good luck making this decision. I hope whatever you choose it's effective and you start feeling better and it lasts a long time.
Ya the more I read about it the more I am thinking it will probably end up being both. The twist I have to it is that for the last 2 1/2 yrs we have been trying to get pregnant. Because of my age (ripe old age of 43) we have just recently learned that we will have to use donor eggs. So we gathered up allllll the cash for that AND found a donor to boot!! And then BAM stinkin Crohn's rears its ugly head in the crappiest way yet lol
Fistulas. Which, I take blame for not getting looked at sooner.
So we are trying to figure it all out between my GI and Fert doctor and my body.
My thought is get the surgery to fix the fistula's, hopefully get my body to the point I can carry the baby and then afterwards go on the Remicade
Thanks for your kind thoughts, I really appreciate them
Helen, what smptoms did you have for the bladder fistula? I have to pee allllllll the time or at least the feeling of it and when I do my colon hurts :S There are bubbles in my pee but it's hard to tell where the "other matter" is coming from lol
When I was in the hospital I was on Cipro and Flagyl but I didn't get a prescription for it afterwards and now I feel almost the same as I did when I went in
I thnk my GI has the same thinking as yours-more than one is surgery-bound

You've gone through quite alot in just one year, I'm sorry to hear that.
Hopefully the surgery will help you immensely :)

Tammi xx
It's my understanding that once you become pregnant, you have to go off remicade. Might talk to your doctor about that if you haven't already. Don't know if same rules apply in Canada:)
Ya that's what I've read too. And that for some reason it's hard to get back on it? Like you could get allergic reactions or something and your body won't take it.
So I'm thinking/hoping I could wait until after I had the baby to even start it.
All this being said that I can even get to the point of being pregnant.
First things first though, one day at a time right?

Yeah, Tammi, I get all those symptoms too and was having a fair bit of pelvic pain. Had recurrent UTIs when I first flared. The endless peeing is so annoying, as is the worry about wetting myself: when I gotta go, I GOTTA go!!
Thanks Helen
REEEEAAAALLLYYYYY hoping it's not another fistula but ya, those are the exact symptoms I have. I'm at work and I have people coming into my office and I have to say sorry I have to GO NOOOOWWW!!! I can't even tell which I have to do LOL

Hugs :)