Fistulas

I have had Fistulas for about a year. I had them drained but they never seem to stop draining. Are they supposed to heel up or is this an ongoing thing? Pretty tired of puss draining and having a wet feeling all the time. Any answers would be appreciated.

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FISTULAS
by: RICH

My son is 26 and was diagnosed with CD 2 yrs. ago.
He had fissures and fistulas that were full of puss and very painful and was hospitalized. They pumped him full of antibiotics and started him on Remicade. His fissures and fistulas have gone away. If your CD is active then the fistulas probably won't heal. Thats what they told my son. They had a dilemna when he was in hospital, because if they tried to do surgery to close the f&f's, there was a great risk of them not healing properly because of what the Remicade does to your system to fight off infection, but if they tried the Remicade 1st, it wouldn't give the f&f's a chance to heal. What they did was heavy antibiotics to fight the infection, then did the Remicade and he's doing great and the f&f's have healed up. It seems he's in remission right now.
Maybe ask your Dr. about antibiotics?
Good luck & God bless

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anal fistulas

by jaycee
(massachusetts)

I had surgery for perianal fistulas, now I have lost sensation in that area. So I was wondering if there is anything to help me and my spouse.

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anal fistulas NEW
by: Anonymous


It is, unfortunately, one of the risks of surgery in that area. However, over time, the tissue can become reinnervated and it may be a matter of being patient. You probably don't remember it, but it will have been detailed on the patient declaration of consent that you signed prior to the operation.

I have also been operated in that area, but managed to retain feeling. I suggest that you discuss it with your doctor. Perhaps, there are means of stimulating the area to encourage the nerves to reform? For example, massage, heat pads, sitz baths, to increase the blood flow in the tissue, to increase oxygenation and, hence, innervation. I am guessing here. Men have a higher risk of losing feeling and it can lead to impotence.

This is a medical matter and should be discussed with your doctors. I suggest that you make an appointment and inform the doctors what has happened. They should work with you to finding a solution, although they will most likely suggest that you wait several months to see whether the body heals itself (see above).

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recto vaginal fistula

My question is regarding Recto vaginal fistulas. Lately I have had what I would describe as air bubbles coming out. When you have a RVF does gas come out both ends? I have no passage of feces out the vagina. Just the really annoying air bubbles for the last month. Haven't been diagnosed w/ Crohn's yet. Still saving money for the colonoscopy. Any advice would be appreciated.

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thanks for the encouragement anon
by: Anonymous

Dear Anon,
Thanks for the encouragement. I still haven't been diagnosed w/ Crohn's, since I am waiting on my dr. to approve the blood test. Finally got a call from them this week, and we are getting ready to order it. It is very scary. Knowing you have Crohns, but also knowing you are going to have a diagnosis. Of course all my family tells me its not that, but I am sure I have a fistula, and there is no other explanation. It is very heart wrenching but I try to be really optimistic. I am only 27 years old, and I stay home w/ my 4 children. They are so young, only 8,4,3, and 9 months. When you get to reading about chron's it is so scary so it is always refreshing to hear some encouragement from someone who has come that far in their disease. Could you explain more to me about the fistula? I am still kinda confused about it. Can they fix it and what is an ileostomy?

joanne
by: Anonymous

hi joanne and company
i was diagnoised with crohns coming up 24years now.i had some bad times when it was totally out of control.was in hospital every 2-3 wks getting the fistulas drained by having surgery it waas awful having general anastetic's all the time.Then i would have great times when in remission.I was 18 when first told i had it and it was scary i hadnt heard of crohns before and to be told it was uncurable i was gutted.Anyway i learnt to live with having to visit every toilet in the country(LOL).in the time ive ahd crohns i have had a son ive got a wonderful partner so its not all doom and gloom be strong dont stress to much i think you have to accept what your got and dont let it bet you.i finally had an illeostomy bout 6 years and that was very scary but i havent looked back and these no need to rush to the toilet anymore and ive had only 1 fstula since the op.ALL THE BEST TO YOU ALL

joanne
by: Anonymous

hi joanne and company
i was diagnoised with crohns coming up 24years now.i had some bad times when it was totally out of control.was in hospital every 2-3 wks getting the fistulas drained by having surgery it waas awful having general anastetic's all the time.Then i would have great times when in remission.I was 18 when first told i had it and it was scary i hadnt heard of crohns before and to be told it was uncurable i was gutted.Anyway i learnt to live with having to visit every toilet in the country(LOL).in the time ive ahd crohns i have had a son ive got a wonderful partner so its not all doom and gloom be strong dont stress to much i think you have to accept what your got and dont let it bet you.i finally had an illeostomy bout 6 years and that was very scary but i havent looked back and these no need to rush to the toilet anymore and ive had only 1 fstula since the op.ALL THE BEST TO YOU ALL

Crohn's & Fistulaurs
by: JoAnne

I found I had Crohn's the hard way I went to the ER thinking I had a stomach virus. 10 hours later I was in surgery and my husband was told that I had 2 days left to live if I hadn't come to the ER when I did. I had surgery 6 week before that on my colon for fisures they were so bad I wouldn't stop bleeding. The doctor checked them out and put me in the hospital as soon as I could get a few things together to get checked in. I had my gallbadder remover this year and found out that in 1999 the doctor had found Crohn's had started back then but never told me and I was just hurting and never knew why. The doctor that took his place told me just this year. The medication is differnet for everyone. I have a hard time with foods, my stomach doesn't like food, but I have fibromyagia as well so the two disease fight each other. So like most people that have Crohn't are slim and have problem gaining weight I have problem losing weight. Even thou I don't eat. I can't work because the many trips to the restroom and other health problems. You can reach me at tooperky01@aol.com Hope this helps you. JoAnne

Chron's test
by: April

JoAnne,
I was wondering if you could give me some hope about having chron's. How did you find out you had it and how did you cope? Is is terrible to live w/? What about the med's you have to take? Can you lead a pretty normal life w/ it? Also have you read about fistulas b/c I think that's what they air bubbles are. Have you ever had a pap that's checked for fistulas? Thanks for all the advice and info.

Recto Vaginal Fistula
by: JoAnne

The name of the blood work goes to Prometheus Laburatories. Address is 9410 Carroll Park Dr. San Diago California 92121. The Phone # is 1-888-423-5227 and the ICD code is IBD Erology 7 & 1007 this is Ulcorative Colitis & Crohn's Disease. This will check for both, but remember the test is $400.00. You doctor will have to order the test. Hope this helps you.

chrohn's blood test
by: Anonymous

JoAnne,
In response to your comment, I was wondering if you could tell me the name of the blood test. I would love to try that before the colonoscopy. Thanks so much for your response. I also wonder when are the air bubbles worse for you? Mine seem to be worse when I lift of bend or right after peeing. It is very aggervating. Please let me know about the name of the blood test. Thanks again!

Recto Vaginal Fictula
by: JoAnne

I have the gas bubbles as well. I have been having Crohn's seens 1999. But, I have never asked if the gas bubbles that came from the front had anything from the front had anything to do with Crohn's. But if you get any information I would love to know. And I know that the scope doesn't aways tell you if you have Crohn's. There is a blood test that you can take which is a $400.00 test that will tell you more than the scope will tell you. The blood test is sent to California. Hope this help you and I hope someone will let you know something you can pass own to me.

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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.






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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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fistula repair

by julie
(california)

Can anyone give me suggestions on fistula repair surgery. What works?

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Crohn's fistulas

I am wondering if there is anyone who has had fistulas after the Crohn's is no longer active?

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fistulas

by jodi
(nz)

i have had crohns for 22yrs i used to have an awful time with fistulas finally after heaps of ops for them i had a ileostomy done this was 6 yrs ago and until this year no trouble but in the last 3mths i've had 2 with them tunneling out my bellybutton.Does anyone else have this trouble and is there any natural remedies for fighting them?

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LIVING WITH FISTULAS
by: Anonymous

It is very important to know that crohn's disease is
a very individualized disease. I have been living, not existing, with crohn's disease for 48 years. I
have a husband (45yrs) 2 children and 2 dogs - The
reason I am telling you the above things about my life is because there is life after the diagnosis of crohn's disease. I have had most of the problems that others have had with crohns. I also have a rectal/vaginal fistula for as long as I can remember. It's not the most pleasant thing to have and as you know it can be very ebarassing at times. One thing that I've learned to do when expelling gas in a public place were there are people is to look around and say o my g-d and then walk away.- by doing this people do not realize that you are the culpert. When I enter
an unfamiliar place I check out the locations of
all the bathrooms. I always carry a pack of matches because the sulpher in the lit match overrides most odors. Try to keep your sense of humor and have the ability to laugh at yourself.
You can and will "live" with the fistula and any
other problems you will encounter. Don't let Crohn's take over your life.- you control it (by
taking care of yourself, don't let it control you.
You are a much stronger person than you realize
GOOD LUCK

any advice will do
by: Sandy

I have just be diganosed with crohns in January of this year. I am told by my Dr that l have fistulas in my rectem and vigina. They arent very plesent. The smell alone will knock over a horse. Can anyone tell me if the surgery is a major operation or a day surgery. I will be happy once all this is over (is it ever)thanks for listening sandy

fish oil
by: Anonymous

hi beca,

Yes the fistula's are a real worry a.Ive just started to tske fish oil,Ive been on them for about 6 wks now and the fistulas seemed to have to calmed down abit,I dont no if the oil has worked but im going to keep taking it for the inflamation it seems to settle my flare ups.Have you tried oil?

fish oil
by: Anonymous

hi beca,

Yes the fistula's are a real worry a.Ive just started to tske fish oil,Ive been on them for about 6 wks now and the fistulas seemed to have to calmed down abit,I dont no if the oil has worked but im going to keep taking it for the inflamation it seems to settle my flare ups.Have you tried oil?

fishoil for crohns disease
by: beca

hi jodi i am 33 had 2 bowel res and now just suffering fistulas mine r tunneling through my cervix i had one drained then it disided to take another direction,it can get so embarisnsomtimes to. i found antibiotics helped a bit but its like theres no stoping them.

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