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rottlover 12-11-2004 01:23 AM

? about crohns and fistula
Hello everyone,
I was just wondering if anyone else has a problem with fistulas with their crohns and what meds that you are taking? I am going on 23 with having said i have crohns for almost 1 year. please help with some info.thanks

twisten 12-13-2004 04:34 PM

Re: ? about crohns and fistula
I also have crohns disease. I've had 1 fistula because of it about 5 years ago. I've had bowel problems most of my life but wasn't diagnosed until 3 years ago and I am now 40. The only med I'm currently on for it is asacol. There aren't too many on this board with crohns or UC but there are a couple so hopefully you'll get more responses. I take it you're having fistula problems right now?? When I had mine I had to have a temporary colostomy done so it could heal and then I had it reversed. Good luck with everything.

rottlover 12-13-2004 08:39 PM

Re: ? about crohns and fistula
thanks for replying. Yes I have a bad problem with fistulas. they will not close. they really dont want to any surgery becouse i am so young (23). So i guess i will just deal with it. thanks again

twisten 12-14-2004 10:41 AM

Re: ? about crohns and fistula
What meds have they got you on?

rottlover 12-14-2004 06:38 PM

Re: ? about crohns and fistula
Right now i am on asacol and augmentin xr. the augmentin is suppose to clear up the fistulas but no luck yet. I have been on some type of antibotic for probably close to 2 years. but i have only been on the augmentin for about 6 months. they said that sometime it takes awhile to clear things up. this is kinda gross but they said i have a hole in my rectum that it draining through the fistula out the sides my vagina. Sometimes when i pass gas i can feel it releasing through these spots. did you have this problem?

twisten 12-16-2004 11:07 PM

Re: ? about crohns and fistula
I had what they called a colo-vaginal fistula. I think its similar to what you have right now. Feces and what not drained from my colon through my vagina. I ended up with septicemia, massive infection and came pretty darn close to dying. I have a friend that has trouble with fistulas not closing also. They finally gave her remicade and it worked wonderfully for her. Is this maybe an option for you? I know it is very expensive so unfortunately not an option for many people. Have they mentioned surgery at all? With mine they did a temporary colostomy so it could heal and after about 4 months they went back in and reversed it. I was so full of infection they couldn't locate exactly where the fistula was but they did know the general area. Are you on acidophilus (sp??) or something similar to combat losing all the good flora bacteria from being on the antibiotics? Two years is a long time on an antibiotic. Do you see a GI doc?

rottlover 12-17-2004 11:33 PM

Re: ? about crohns and fistula
I have thought about the remicade but my GI told me with the drug being so new that they could not tell me the effects it would have if i wanted to get pregnant or while i was pregnant. I dont see kids in my near future but i dont want to start something that could keep me from having kids. i am really looking forward to having kids. He said that the asacol can be taken durning pregnancy. So right now that is my choice. they would like me to try remicade but i am uncofortable with it, not knowing. my surgeon said that unless i started to have really big problems he didnt want to do anything becouse of how young i am. he is afraid of messing up my bowel control.

twisten 12-18-2004 10:26 AM

Re: ? about crohns and fistula
I would want to wait too then if I were in your shoes. My friend that went on the remicade had one child and couldn't have any more so that was never an issue for her. Have they given you any indication as to when you could expect the fistula to have healed by?

rottlover 12-22-2004 07:38 PM

Re: ? about crohns and fistula
The last time I went to the doc he said that sometimes the antibotics can take up to a year to clear up. I have to say that if I miss a dose of the antibotic they will get bigger and be uncomfortable the next day or two. My problem is that my ex knew about the problem and knew that i had some bumps down there. but now that i am single i worry about future sex partners wondering and even being scared of them. I have been single now for about 6 months and really dont know if i will be comfortable to get intimate with someone. I dont know if the granulmas(spelling) can be removed again or not. I go back to my ob/gyn in april and my GI in May and i plan on asking both of them about it. I have a ? for you. My last 2 yearly paps have came back abnormal and I have never had a problem before but since i have had the fistulas they have been abnormal. Have you had this problem? Last year they did the whole pinch a piece of my cervix and check it under a microscope and said that there were no abnormal cells but this year it came back abnormal again. my GI said that sometimes ob/gyns have a problem with Crohns. Just wondering if you have had the same problem. Thanks for all the help.

twisten 12-24-2004 12:10 AM

Re: ? about crohns and fistula
Actually before my crohns diagnosis I had 2 pap tests come back abnormal. One I had lazer surgery for and the 2nd one was cryo surgery. These were probably a good 5-10 years before the fistula. Interesting though.

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