Frustrated with Fistula Dressing Changes - Need Advice!

Last few days I've had to change the dressing on fistula, driving me nuts! I have an ileostomy on the right side and this on the left...usually have no problems with the fistula...the odd shower/changing and little to worry about, but came across daily oozing...didn't change diet! It just stinks! Thank God no one is around and not able to work...home from the hospital last August. No real problems, eat as usual, chew thoroughly, it takes me 4x longer than most to eat a meal. Other than that, just snack healthy! Any output! - LOL

Ummm, not my kind of fistula that one, believe that is a 'mucous fistula'? Surprised no one has jumped in yet? Hope someone does ..... take care,
Rach xx

Probably it's serous fluid leaking from your fistula, it pours out of mine and really stinks. Speak to your doctor about it, there are several drugs available that will not only stop the flow, but heal the fistula too. Hope you can find a medical cure, cause the surgical options are a bit scary.
Very best of luck
Angela

I have an ileo on my right and a mucus fistula on my left. In the beginning, the fistula didn't do much... I was able to wear a cover on it. Now, though, it is pretty active. Very watery. Boy, does it stink! I need to wear a bag on it now. I think it was put there deliberately. Not quite sure what it does.... Sort of acts like an air hole, I guess, to prevent further obstructions?

Excuse my ignorance, but what the hell is a fistula? I've gone through the colostomy and a reversal, but never heard of a fistula.

Jacksprat

I'm not really sure myself! My stomas are a result of radiation damage...had an obstruction, went to surgery and woke up with them.

A fistula is an opening where there shouldn't be one. My colostomy resulted from a fistula between the colon and bladder---the clever docs put blue dye in my colon and watched the color of my pee---bright green...LOL

Lynsie, if it is a mucous fistula, check out ampatch.com

Fistula is an offshoot of your intestine, think of it as a new branch on a tree limb. It grows and attaches itself to whatever it runs into. I had five that broke through the skin: one at my navel, one on the left side of my abdomen, two by my anus, and one that started on my right side. I had many, many more that had connected bowel to colon and vice versa, inside that no one could see without a CT scan. There was one that was attaching itself to my bladder, it never entered my bladder, thank God!! These are a sign that the disease process is getting worse. They pass mucus at first and smell bad because they are trying to pass the contents of your colon. I used to pass food through mine when I had stool coming from them. There was no other option but surgery. Humira is a good medicine to close them up, but it does not work for everyone. My advice for those that have them is to have your doctor do a CT scan to see if there are more and where they are. If they pass more stuff more often than they did before, it is because they are getting bigger. Get help for them now! Hope this helps.
~DG44~

Thanks, dental guy. They took down my mucus fistula over a year ago. That was put there deliberately. Now, I have a regular fistula that has made 2 holes, one in my vagina and one in my groin area under my ileostomy.
They were VERY PAINFUL opening. Now that they're opened, they are a mess! The one in my vagina isn't bad because I have to wear depends because I am urinary incontinent, so they catch the drainage.
The one in my groin I use feminine products on! They work, but I have to change the dressing often.
One doc said they couldn't repair it. Interventional radiology said they could put a catheter in with a leg bag..NOT!!!! I already have the ileo and a Hickman port. I don't want anything else hanging off me right now!
I am setting up an appointment with an oncologist who has experience in radiation-damaged tissue. I'll see what my options are and go from there.

You are right, Janice - fistulae don't always lay in the GI tract. Most women have vaginal fistulae. I have a fistula between my bladder and the rectal stump below my colostomy.

Has anyone ever mentioned Hyperbaric Oxygen therapy (HBO2) to you?

I just completed 40 treatments (called "dives" because you are placed under the same pressure as if you were scuba diving 40 feet down). This pressure and breathing pure 100% oxygen for 90 minutes is the only treatment besides surgery (with plastic surgery/tissue flaps) that I have heard of that MAY possibly heal a fistula due to radiation damage. HBO2 is most commonly used to heal diabetic skin ulcers.

Warning: I went through this back in 2004 for 72 dives, no problem. This time, with a colostomy, I noticed the pressure really put a strain on that area so I called it quits at 40 instead of 60 dives. The treatments reach their maximum effectiveness (tissue healing due to increased oxygen in the blood) at 6-12 months after the last dive. In my 2004 dives, that was about early 2005 - wow, I felt like a million bucks! Better than sex. Pinky

Janice,

I have an anovaginal fistula due to Crohn's disease. I have had six surgeries to attempt to fix it, with each one making it worse. Now I have a colostomy, which the doctor is going to try a muscle flap surgery. This is where they take a muscle from the inside of your leg and flap it over the fistula. With all of these procedures, I am about to run out of my COBRA. If this surgery works, then I can have a reversal. I feel like Crohn's disease has ruined my life. The plastic surgeon who is going to work with the rectal oncologist to fix this, I had to see two plastic surgeons to get one to agree to the surgery. All of them now that I have the stoma say "Why don't you just keep it." I wish they all had to go through this, and then they would be so flippant. I wish I had never messed with it in the first place because it just got worse with every surgery. I have heard that on some fistulas, they are using Botox to close them. I was on Remicade for two years trying to close this fistula. A lot of money and no results, may cause lymphoma, etc.

I would not marry or have children because I did not want to pass this on. When I was first diagnosed, they did not know it was an autoimmune disorder. They told my parents I was making myself sick for attention. My dad had a very mild case, and my brother and I have very bad Crohn's. Lots of changes in the last forty years but not enough. When I was 20, I actually weighed 69 pounds. I don't know why I lived and finally went into remission, but I have had some real good years and some real bad. Knowing how sick you can get and not die, I think the people in Oregon have the right idea. If you're terminal and you want to go out with dignity, why not?

Wish me luck because I am getting really depressed, and I am seeing someone for that and have been tried on 25 different antidepressants, all of which make my Crohn's worse. Thanks for listening to my rant.