New and looking for advice on fistulas

[broken_guts]

Hi, everyone. I'm 29, new to the site and was hoping to find some people who I can relate to and who can relate to me. I've had crohns for a little over ten years, but its gotten progressively worse. The disease has begun to affect my mouth, and I've developed perianal disease; I'm dealing with four fistulas right now, and its the most disgusting embarrassing thing I've ever dealt with. I lost my insurance when the company I worked for closed, and I've had no luck finding a job, let alone benefits, so I joined a trial, but the medication doesn't seem to be doing much. Has anyone had fistulas and/or mouth issues, and what made them feel better, if anything? Did anyone ever have their fistulas close without surgery?

 

[Astra]

Hiya broken guts
and welcome

I've moved your post to the fistula sub section, hopefully you'll get a better response in here.
Good luck xxx

 

[Ginger is her name]

I had surgery in feb to repair numerous fistulas. I am 36 yrs old and newly diagnosed with Crohn's. I am still healing, and I have been prescribed Flagyl to assist with healing. When I had the fistula surgery, I also had a colostomy done...my drs will not reverse it until my anal fissure is healed. It's certainly not comfortable, but the surgery has helped me.

 

[AlliRuns]

Flagyl is a temporary fix, helps while you are taking it, but doesn't usually heal. Some people have had success with Remicade, but even with that, my doc has said my fistulas may never close completely. I had two surgeries as well, neither were successful. Been dealing with this for almost 8 years. Wish I had answers.

 

[MikeinBklyn]

I had two surgeries to "lay open" my fistula. My docs put me on Humira every 14 days and it greatly improved, but did not fully heal. My fistula did not close until I went on to Humira every 10 days. That was 3 years ago.

We know what it's like, you are not alone. Feel free to vent, that's what we are here for.

The antibiotics will help but they won't close it.

Best of Luck

 

[evescott]

Hey!

I had persistent fistulas for as long as I can remember. They tried me on Infliximab & Methotrexate which worked for a few days then it was back to the uncomfortable awkward routine. I've had to wear pads for them as they constantly discharge which as you said, is so embarassing and frustrating!

I had an emergency ileostomy done a few years ago to give the area a break but unfortunately this didn't work after a year so they put a seton into one of them. It helped it drain but was obviously still there!

Since my proctocolectomy they've begun to heal at long last though!

I found the best thing for mine was to have a bath at least every other day, to really deep clean them which in turn makes them less sore.

Over the years I kind of adapted myself into sitting in a position that didn't agitate them so much without even really knowing I was doing it!

I hope you feel better soon!

 

[Needhelp24]

I'm new and have an issue that I would like to discuss....can someone please tell me how I start a new thread?

Thank you!

 

[Needhelp24]

Hey Broken Guts,

I started having issues first back in 2005 and was told I had UC. Then landed in the hospital for 10 days in 2009 and they did extensive exams and whatnot and said it's definitely Crohn's. They put me on Remicade and it's been such a blessing with only about 4-5 flare ups due to strong antibiotics. Anyhoo---about mouth ulcers...I've dealt with them all of my life, even as far back as kindergarden. I get them horribly...like 10-15 at a time. When I first started remicade, it seemed to help a TON. But just in the past 9 months or so, I started having bad issues again. Then, in the past 6 months I started having them south of the border. When I first when to my gyno they said herpes and I was about to go Lorainna Bobbit on my boyfriend of 3 years! However, 3 tests have come back negative for HSV 1 & 2. So they are not saying it's Crohn's related. Unfortunately, I haven't found anything that heals them fast :-( You may ask your doctor for some magic mouthwash though that helps relieve the pain. It has lidocaine in it. I do understand your frustration though.

 

[lgpcarter]

Hi broken_guts,

So sorry that you have joined the fistula club. Truly the worst part of the disease for me and making me miserable at the moment as well. I did have really great results from Remicade for my fistulas. Closed one pretty much completely and the other one was quiet and not painful at all while I was on it, and through 3 years of good, drug-free remission.

Flaring now for 6 months, and had an infusion reaction to Remicade, so no more of that for me. Humira weekly doesn't seem to be working, but I know it helps for some people's fistulas. I have also been put back on Cipro/Flagyl for perianal disease and fistulas (both of which drain externally through the skin - on right in the middle of my butt crack up fairly high and the other one out my butt cheek an inch or so from my anus).

Waiting for a surgical consult to see whether the cheeky one is operable or would benefit from a seton.

As for mouth ulcers, I have a prescription steroid cream that helps a bit, but really what makes them go away for me is getting the overall disease under control.