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May need surgery for Chrones and fistulas, looking for Advice

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Posted 1/27/2012 4:10 AM (GMT 0)

I've posted before so if you want to hear the long story look at my previous posts.

So for the short story, I've had chrones for 8 years now but in the past year its gone haywire and crazy. 5 months ago I got an abcess formed in my abdomen and fistulas formed. After 6 months of treatment it has not gone away and I am still having flare ups with the chrones. The main reason the docs say it won't go away is my chrones is flaring up constantly and the fistulas will prob never heal unless it goes in remission.

I've done the antibiotics for 5 months and recently talked to a new GI doc for a second opinion and he believes I have done everything I can as far as non-surgical treatments and I should go with the typical chrones intestine surgury and the other surgery to get rid of the fistulas.

I'm afraid to get the surgery becuase from what I know its a temporary fix for chrones and could lead to more surgerys or complications. But I really want to get back to normal in some sort of capacity and I think this what i have to do.

So if anyone has gone through this or surgery I could go for some encouragement or advice. Thanks!

Posted 1/27/2012 6:25 AM (GMT 0)
I just had resection surgery in the small bowel due to obstruction. (october) Before my surgery the pain was unreal, and came in waves. I was down to 92lbs. I couldn't hardly get out of bed. Had to be near a bathroom at all times. Like 20-30 D episodes per day. It was awfull. Since '03 I had tried pentasa, prednizone, entocort, asachol...nothing helped.

They took 18" out. Said that the section was so bad that it was going to be a fissure or fissula? soon. (I can't remember the word they used) But it was about to grow itself together or something. It didn't sound good.

(this was in October) and I still feel good, so far I'm glad I had it done. Only time will tell I suppose? But I sure am glad to feel better if even for a little while! I hope you get some relief and back to normal too, please keep us posted. Kathy
Posted 1/27/2012 8:04 PM (GMT 0)
It's unfortunate the situation that you're in. my only advice would be to put off the surgery as long as you can without seriously causing damage.

If bearable I would stick with med's and keep trying to find the right cocktail. Once you get cut there is no going back.
Posted 1/28/2012 6:11 AM (GMT 0)
Update.

Had a CT scan done today and had the docs look at my abcess in my abdomen and It looks like I still have 2 fistulas that drain from around my colon. They don't seem to understand why it won't go away (well I have chrones flare ups still so thats prob why of course). I've been on every imaginable antibiotic for this. I have a good drain set up that keeps the abscess from going out of control so they decided to keep with the same treatment and now I'm being referred to General Surgery. So I may need surgery.

So next week I'll talk to surgeons. I' m really up in the air and hear different advice from everyone. I'm afraid of going through with surgery.

As regarding torrencboys advice, I may just put off surgery as long as possible, but how long is too long or long enough?? I've had this issue for 6 months and basically no results. The GI doc said I should get surgery. This situation sucks, just want to get back to normal in the best way possible.
Posted 1/28/2012 6:16 AM (GMT 0)
Hi Attey,

Glad the ct scan is out of the way. That's progress, and gives you a few more answers.

I thought you might be interested in the "abscesses and fistulae" link in my signature (below). Lots of people have shared their stories about treatment and surgery, and I thought you might like to read them. Of course, some of them will be about rectal abscesses instead of abdominal ones, but I'm pretty sure there are some abdo stories in there too.

Keep hanging in there.

Ivy.
Posted 1/28/2012 7:53 AM (GMT 0)
I just got home from an emergency resection..they took 10" of small intestine and some lg...plus I had a fistula that had formed and was draing out my colon...which was why I was still having bowel movements..it was all draining from above my obstruction through the fistula. I am glad I had surgery but wish I had done it sooner as there where many complications. I was severly malnurished and my body was starting to shut down do ti lack of nutrition...I looked like I was starving...when in fact I was despite eating.
If your GI is recomending surgery that would mean he feels that medicaly he cannot treat you anymore and this is your next step. After your surgery is healed you will go on medication to keep you in remmision....I think it is something you should really concider and not wait like I did and have to have it done via emergency.
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