rectal fistula suggestions

by david
(buffalo,ny)

I have had crohns for over 30 years. I had 1 1/2 feet of bowel removed including my ilium. Since then I have had a draining fistula ,of which I could handle and live with. Recently, I have had abcess like pockets forming outside of my rectum. They are draining but they take awhile to empty.

I had tubes put in about 3 years ago and it helped for 3 years but after a few months the rectal specialist took the tubes out. I may need to get that surgery again but I was wondering if others could give me what has worked for them without having to go for surgery. The dr. did say that this next time he would leave them in permanantly. They didn't hurt but the outpatient surgery did. The dr. did say that these new pockets are draining and as long as they are draining, I should be ok. Just take 3 sitz baths a day but the pressure is still there.If these do close up I will need to see him immediately.
For 2 weeks I have been taking cipro & flagyl to calm down the flare up & the drainage which was always on my left side of my outer rectum. Since then,it has moved to my tailbone and then to my right side outer rectum under the skin. My left side no longer bothers me but it is my right lower rectum under the skin that fills up after I go to the bathroom. I try to push on it to help the drainage.
I am currently taking pentasa and my doctor is in the process of trying to put me on 6mp but this needs to clear up first. Sometimes, I think it is just me making it sound worse than it is but then again you find yourself not looking forward to go to the bathroom.
My questions are:
Is there a diet that could help me with this condition?
(My only problems from crohns are not my insides but when it comes out,filling into pockets from the fistula or fistulas. I say it is a simple thing but really it is a big thing....)
What natural vitamins have helped...?
I do go to a support group which helps but no one from my group is specific to my problem. This is also my 1st time writing on line & I have no idea of what type of responce I will get...
I think this is a great idea and I hope it helps many. Also, I believe that diet it very important but no dr. will tell you & there is so many products on the market it becomes confusing what is good for those with crohns and for our specific condition.






Comments for rectal fistula suggestions

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Anal Fistulas
by: Anonymous

I was diagnosed with Crohn's Colitas last year at the age of 50. Healthy all my life until now. Major changes like taking 30 pills daily (vitamins included). Taking daily, prednisone 20mg along with colozal 2250 mg, methotrexate 15 mg, flagyl 1000 mg and cipro 1000mg. Do have a good doctor that is trying to get me in Remicade but crappy insurance/bad coverage.

Went in for surgery last year for fistula (who knew such pain) and had a seton out in (Plastic loop in fistula, leads to drainage but manageable except for the 3' x 8" pad in my underwear to catch seepage)

Back 1 year later for draingin of abcess but need to schedule surgery to see if new fistula connects to original fistula or is new problem.

My surgeon says I have to weqn myself off of prednisone for long term health reasons as well as make me a suitable candidate for the next surgery.

The most frustating thing is how little anyone knows about Crohn's including both Doctors (Whom I respect) regarding diet, excerise, treatment etc.

I am told maybes, will sees, etc. Maybe if this had the allure of other autu-immune diseases we could get some attention. Feeling sorry for myself but I have a good support group (family) and will muddle through. Depression is not a symptom of Crohn's but a psch symptom of not feeling healthy, clean, and energetic. I try to push my self every day. Small business owner with no option but to push forward. But I do recognize the need to listen to my body and take the rest needed. Hard to do with type A personality but absolutely required. Set realistic goals and rest when needed. Your suport will understand. Joked with my wife recenty about swapping illness (swine Flu) She not for a $1,000,000.

I am looking for feedback on two issues.

I am weaning off prednisone and wonder if rashes are part of the detox.

Is there remicade treatment outside the US that would make treatment a mini vacation.

Fistulas and crohns
by: Anonymous

i'm on Immuran now (dx with crohn's in 1986), never
have fistulas anymore THANK GOD (they are sooo painful!!!!)

Fistulas and crohns
by: Anonymous

i'm on Immuran now (dx with crohn's in 1986), never
have fistulas anymore THANK GOD (they are sooo painful!!!!)

same problem
by: Ann

David,

I'm sorry for your problems and I feel for you.

My rectal fistula popped up, and I had no idea what was going on. After a few doctors and multiple surgeries on the rectal fistula, I found a doctor who noticed that my right lower quadrant was tender and sent me for a CT scan. This showed thickening of the ileum (indication of Crohn's) and appendicitis. When they went to take out my appendix, they found a fistula that went from one part of my colon to the other (ileum to cecum). After my appendectomy and small bowel resection, the rectal fistula has stopped draining. The whole time there was an internal problem. It wasn't until that point that I was officially diagnosed with Crohn's disease even though there was nothing found during the colonscopy or small bowel series.

I think that once they got rid of the active diseased areas within - the outside stopped draining. As far as diet, I understand the frustruation. I tried the no white flour and no sugar diet for two weeks and couldn't do it any longer. I did talk with a naturopathic who went even further than that with a diet similar to the Loflex diet. My GI doc recommended this one to me. It's very limiting but really helps. You can find it on the internet.

I hope this helps. Good luck to you!

Surprised at fistulas lack of input
by: BARB

Hi there, it surprises me that theres only been 1 response. l guess people learn to live with fistulas. l had my illness since 16 lm 45 now. about 12 yrs ago my first one poppped out a boil that was on my right side of retum lol can't spell. it was lanced and so began the fistula questions, understanding, frustration. diet is a big thing you need to know what irrates you and stick to it.. theres so many degreees of crohns and other bowl problem. l got rid of mine for a while when l first went on remicade it was beaut . but things changed and l just finished my last treatment decidecd lll keep looking. my fistula's 3 plus a vaginal 1. bother me daily usually in the morning, and calm dowm as the day goes. lve never had surgry thank god, but yours sound a few degreees worse. maybe more people will write and talk about this stupid things. well take care, and always be hopeful and positive. new things come along all the time

Surprised at fistulas lack of input
by: BARB

Hi there, it surprises me that theres only been 1 response. l guess people learn to live with fistulas. l had my illness since 16 lm 45 now. about 12 yrs ago my first one poppped out a boil that was on my right side of retum lol can't spell. it was lanced and so began the fistula questions, understanding, frustration. diet is a big thing you need to know what irrates you and stick to it.. theres so many degreees of crohns and other bowl problem. l got rid of mine for a while when l first went on remicade it was beaut . but things changed and l just finished my last treatment decidecd lll keep looking. my fistula's 3 plus a vaginal 1. bother me daily usually in the morning, and calm dowm as the day goes. lve never had surgry thank god, but yours sound a few degreees worse. maybe more people will write and talk about this stupid things. well take care, and always be hopeful and positive. new things come along all the time

Have them too
by: Shawna (Missouri)

David,

I too have problems with fistulas also on the left side of my rectum. Mine drained, but never got better. Last September I had a C-ton band put in. It was in for 4 months before it fell out. It was the most uncomfortable thing, but I think it worked because now the fisutla seems to only pop up when I am having a flare up, but nothing like it did before I had the band put on. I am also on 40 mg pen shot of Humira every 2 weeks and that has helped tremendously with the fistulas as well as the skin disorder on my hands that is from Crohn's. As far as diet, it's different for every person. Good luck with everything and I am glad I am not alone with the fistulas.


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