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04-06-2012, 04:22 AM   #1
nmgonzo
 
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First time for me

I have been dealing with peri rectal abcessess and fistulas for many years now off and on but the other day something very different happened. For the last three months I have had consistent, stinky drainage from two fistulas. The other day in an attempt to have a bowel movement liquid stool came out of both fistulas, nothing from my rectum at that time. I was totally shocked, never had this before! So far it is the only time it has happend but it still freightens me, maybe because it is different. Anyone have anything like this? Does this mean that these fistulas are just getting bigger (if that is possible)or more out of control?
04-06-2012, 01:14 PM   #2
Terriernut
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You poor thing! Sounds like they've opened up a bit more. What meds are they treating you with ATM?
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DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
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04-06-2012, 01:19 PM   #3
Carole Ann
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I have had these abcesses and fistulas. The oozing smells really bad...I would get it checked just in case you may have an infection. Take care
04-06-2012, 02:22 PM   #4
nmgonzo
 
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Terriernut I am currently on Cimzia and Imuran. I have been on Remicade and Humira also but taken off Remicade due to joint pain and Humira due to shingles. I don't feel that the Imuran has ever really worked well for me but the Dr tells me to take it because "according to reasearch".... I just wish these Dr's could go through this stuff one time, maybe they would have some compassion.
Carole Ann I have an appointment in June at the University of Michigan, if things get too bad I will definately go to my regular GI. Thanks. Pretty sad but it just seems to be part of life anymore to make sure I am changing my pad several times a day and cleaning up regularly. It will get better.
04-06-2012, 02:33 PM   #5
Terriernut
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When you got shingles with the Humira, didnt they dose you with antihystimines first?

Fistulas are awful, had one thru my fallopian tube. Oh my Gd it was awful.

As for the Aza and 6MP, yes they work. But your bloods need to be monitored all the time, is that happening? As for fistulas, I dont think the Aza is going to touch that. Only the biologics have been shown to have any impact on them. And surgery to remove the affected area. (what happened to me)
04-06-2012, 04:10 PM   #6
littlefreebird
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yes i agree- sounds like theyve opened up- they may still be very small but nethertheless if it hasnt happened before definatley contact your dr to let them know.
i had a rectal-vaginal fistula..if i was running to the bathroom with D trying to hold it in, it would come out of my V instead- it was very painful and distressing.

i really hope you're sorted soon! big hugs! hannah.x
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04-07-2012, 01:46 PM   #7
nmgonzo
 
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Terriernut, nope they never said anything about pretreating with anything. I really hope that I don't have to have surgery. I am hoping this new Dr that I am going to see will have a different idea of what to do.
littlefreebird that sounds horrible!! I really struggle socially, always afraid that gas is going to come out when it shouldn't. Within the last few weeks I am starting to suspect there is something going on with my vagina. Feels like some gas is coming through there and there is a burning sensation at times.
04-07-2012, 02:18 PM   #8
Terriernut
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You need to go back in and get looked at sweetheart. Dont ignore it and let it get worse.

And you need to be seen by someone who will treat your Crohns. And who knows about allergic reactions to Humira. If you have tried the biologics though, surgery may be a good option for you. Just a resection. (I know..JUST..hahhaaaa, not)

But sometimes the surgeons knife is our best friend. They can try other options first. I'm glad you are seeing someone else!
04-11-2012, 01:32 PM   #9
Carole Ann
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Hi...I think you really need to be strong and get some treatment fast before this gets any worse. You should not have to put up with this...I really feel for you. I know its sad and scary but sometimes you have to put health matters first. sending hugs
04-12-2012, 03:12 AM   #10
Thirdtime
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nmgonzo, you are not alone in this struggle/battle. I know the life of pads and trying to keep it all clean, etc. Not fun... and can get very irritated and painful. I had experiences similar to you - drainage from a vaginal fistula (started out only with air passing but did get larger and then stool passed too).

I did opt for surgery and have a temporary ostomy. I know - it sounds horrible and extreme but I had a fistula that branched out and the surgeon consulted his team and they all thought the best treatment for me would be an ostomy to let it close. They initially thought a flap placement and ostomy would do it, but decided to just start with the ostomy. Unless the remaining fistula spot heals on it's own following a repair in Jan 2012 (ostomy surgery in Aug 2011), I will still end up getting the "flap" placed vaginallly.

I agree with what someone else here said - sometimes the surgeon's knife is a really good friend.

I am healing... expect to be fully healed by end of summer - hopefully, and then I'll be reconnected and fistula free. It will be a full year in Aug but if this takes care of this problem, it will have been worth it.

Hope this encourages you more than discourages you. Want to give you hope and let you know that there are options. Yes, one way or another, you will heal.
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