persistant fistula

hi, all. new to this particular forum, and just wanted to get some thoughts/opinions. so, please, SOMEBODY tell me that their persistant non-healing fistula finally healed? I have had crohns for many years, I am only 22. I have had a peri-rectal fistual for 2 years. I have had 3 different drains placed, including a draining seton and this tube that was literally stitched into my perineum. Everytime they think I am healed and we pull the drain, it heals up and abscesses again. I am starting to lose hope. I had my first surgery when I was seven weeks pregnant and it was horrible. Tomorrow I am going back for another possible drain placement or flap procedure to try to get it to heal. I just need some positive thoughts. I am very young, I am a nurse, and I can't even stand to do what I am needed to do at me job because of the pain.

I had one that lasted a couple years in my 30s. Surgeon sliced it open twice as I recall and it hurt like all get out. He said after the second "slice job" that he would have to remove part of the muscle if it came back again. It did finally heal. i thought it was coming back a few times after the exterior healed (like a huge pimple or hemmi) and I used to push on it with my finger. Felt like it would drain internally and never opened again and finally never came back at all. Probably a dumb thing that I did but I don't claim to be a smart guy. i think very warm sitz baths are the the best way to help it.

I wish you well.

I always take baths so hot I can not hardly stand it. Which is probably silly of me too, but I dont know what else to do. I could not imagine being "sliced" twice. They tried 5 times drain mine before they realized my fistula was very deep in the tissue. But they only used a huge needle. I am very grateful for you well wishes. I really thought that this was an uncommon thing. I was very wrong.

oh my goodness wow. I am truely touched to hear that.... I am so glad after all that pain you finally healed! I am extremely sorry to hear about your colon though. I now have a new attitude about going in to the OR tomorrow morning. Congrats on feeling better and thank you so much for your story!!!!

I hope that your surgery/procedure goes well today!

I have had a chronic problem with perianal fistula since I was 21 years old (so 16 years.) When I had my first abcess, I had it drained in my hometown. After a fistula remained, I went to a surgeon/specialist for an exam and discussion of surgical options.

In my case, there was a little more than some risk of damage to the sphincter muscle, and hence loss of bowel control. I had MRI's to check out the tracks. While it was open/draining, there was no pain or any other problems with it. I opted to not have surgery. The need to attach gauze pad daily was a much better option for me than the risk I had of incontinence, IMO.

I have had 2-3 additional occurrences of abcesses that had to be cut as part of an outpatient procedure. My GI is OK with me doing nothing about it, if it is not bothering me in terms of pain or way of life.

I currently have just 1 open fistula. This one actually has tracked up a little higher on my left cheek. The amount it drains varies based on bowel habits. A lot of BMs a day, especially loose or D, and the fistula is more active. However, recently I have had more C than D, and I believe Humira has helped close (earlier this year) a 2nd one I used to have near the anus.

I found a good Q&A online that details fistulas and possible treatments:
http://www.diethealthclub.com/askquestion/279/anal-fistula-advice-i-have-been-suffering-from-fis.html

Good luck again to you today, and keep us posted!

Tired,

You have me a little worried. I have had problems with a fistula and have gone through a couple of surgeries. However I'm having a flap done and maybe its not the same as yours. However I'm about 50lbs overweight and I have repeatly asked if my colo/rectal surgeon if being overweight would be a problem etc. and mine has sworn it wasn't. Did your surgeon explain why you need to loose weight? I have actually been loosing weight once I found out i had a low thyroid and been taking medicine for it. However I don't want to go through a surgery and it not work cause i'm fat.

to seraphina - Well she never told me to my face I had to lose weight. She told my fiance that when she talked to him after my surgery. She never even spoke to me yesterday. But I am also about 50 lbs overweight. She told him that being overweight, when I stand up from a sitting position it puts more pressure and strain on my peri muscles. And that the flap would just rip again.

I wish she would have told me to my face exactly what her plans were. It worries me as well. I know a lot of ppl are against it, but I think I am going to talk to a doc about Adipex. Has anyone with crohns evertaken adipex?

And to This-to-shall-pass (I love that btw) - I was thinking seriously about switching. Its just that my GI doc and my Colon Surgeon are from 2 different states. And they dont really agree on what I need. My GI doc would like to put me on a Diff med, but my colon surgeon refuses to see me if I am not on pentasa. Isnt that comical?

Absolutly lovely (being ironic). Having two specialist that cannot agree on your medications.
Getting a second opinion? I at least belive that the GI should have some more knowledge about meds than the surgeon but of course I don´t know.
And a stupid question- can´t you be on both meds? I know you can take metotrexat and remicade at the same time if needed.

Either way I wish you good healing!

I'm almost 6ft tall and truely have a large frame, so I don't appear to be as overweight as I really am, I know its so much harder for people who aren't as tall as me, so i'm lucky in that aspect. But I sit all day at work, so I'm even more worried. :(

I have to wonder if maybe she is confussed about my weight, she did an exam so she saw me obviously half dressed. After the exam I talked to her about my being overweight and she didn't blink an eye and said it shouldn't be a problem. I'm going to ask her again when she does the seton placement, because I'm not going to have that rip apart, I think I would have a complete break down. But I'm thinking maybe its differen't muscles or a different type of flap. My fistual is a high fistula, its not that close to the rectum but it's not that close to the vagina. She said it is an anal fistual but it's more in the perineal area.

I even spoke with her about the possibility of me having a child vaginally and she said it should not be a problem at all with the surgery she is doing. I again stated well I want to loose more weight before I have a baby and she said, did your gyn. tell you that and I said no but I want to be at a healthier weight and she said your weight shouldn't be a problem at all to have a child now. So I'm thinking she probably just thinks I'm not as overweight because she didn't weight me.

Tired, I don't have crohn's but I did use adipex back in college and it worked. Then they figured out i'm ADD and I talke adderall and that does help cut the appetite. But having this fistula really spun off my weight loss I was sooooo depression and I didn't want to eat. I found that if i drink tons of water and eat small meals through out the day seems to help me and drinking TONS of water. I have lost almost 100lbs in about a year and a half without weight loss surgery, so I know it's really hard, so I'm rooting for you Tired I know it will get better for you too.

I had a silk Seton placed on Wednesday. I had to beg for the silk seton, because I had a regular rubber one before about a year ago and that hurt really bad. She told me she didn’t understand why it hurt so badly and to be quite honest this one doesn’t feel any better. She didn’t even prescribe me pain medication, because she numbed the area. Well that is great and all but after the numbing stuff wore off the next day at work OMFG, I thought I was going to die and the knot has rub a blood blister next to it, even though I have gauze against it.

I’m not looking forward to the flap surgery in 2 weeks but I’m ready to get rid of this seton. The surgeon insisted that she had to put it in to prevent infection before the surgery, which I don’t doubt; I’m just ready to get this over with.

I asked her again about my weight before the surgery and she told me that I will be fine as long as I follow her instructions to the letter. Basically for 3 weeks after the surgery, bed rest, no lifting anything even if it’s less than 10lbs, no straining, no getting up and down repeatedly from a sit to a stand position or sitting for any long period of time. After the 3 weeks she will do an exam and see how its healing and I might be able to lift up to 10lbs and I might be able to go back to work part time then.

The oddest thing is I keep getting this fistula, it refuses to heal. This last time around it went a year and I thought it was healed and TMI I know but I started having horrible constipation and then boom it came back. I don't have Crohn's, just what one doctor called IBS-C. I was taking steriods for a back injury and I accidently scratched my pernial area while showering and got an abscess days later, my primary doctor told me it was just a freak thing that happened. I then went to a surgeon who drained it in his office and of course I felt it all. Then it turned to a fistula and it has been almost 2 years of dealing with this. So I don't think that is why I haven't been prescribed the flagyl.

As far as the healing, i'm a slow healer so that is why she said 3 weeks. I'm sorry your seton hurts, I had the plain rubber band one the first time and I can't even imagine a doubled up one, you poor thing. Does soaking in a hot tub help? I have read that some people put ice packs in the area and it helps maybe you could try that.

The adipex will really curb your appetite, I have done really well with eating 3 small meals and then 2 to 3 healthy little snacks, it keeps your metabolism going.

I'm going to have my surgery on Nov. 7 and i have to spend at least one night in the hospital. I plan on trying to do a journal, because I notice there isn't a lot of information about the flap surgery. I'll let you know how it goes so at least you will know what to expect.

It's the worst. I was seven weeks preg, I had just found out I was preg the week before. And I got this HUGE bulging spot on my peri area. I had not idea what it was. But I couldnt sit, stand, lay down, and I spent entire days in a near boiling abath tub. So after a little over a week (cause I thought maybe it would get better, haha) I went to the ER. Who referred me to a colon-rectal surgeon. Who tried 5 times in 5 mins to drain that area with a 18 gauge needle. IDK if you are needle savvy, but that is about as big as they use in the medical field. He told me, this should feel like a hornet sting (on my peri area).... IDK why he was even trying to drain it b/c there was no"head" to this thing, it just looked like a big red bump. so after the 5th time, he came back with that needle and i started to cry lol. So he put me in the OR that night. And I came back with a seton. He said he had never seen a abscess so high up.

Yeah I have tried hard to find some GOOD solid info on the flap procedure, but can't find any real life stories. I will be excited to hear if/when you heal! God knows having a fistula that doesn't heal makes you want to cry. I really do feel awful that you and I are in the same position.

Yes, I like taking baths so hot I can't hardly stand it. I turn the water all the way on hot, but that isn't hot enough for me, (our apt has shoddy water heaters) and then I make my BF boil 2 gallons of water and put it in my bath water too. It's the only relief I can find, too bad it's so temporary.


I will be praying for your recovery!

I was never given an option of antibiotics, I was told it wasn’t an infection. Whenever the surgeon put in the seton this last time, she told my husband there was no sign of infection.

I figured out why the seton hurt so much, the knot was not on the outside of my body. I’m not going to get graphic, but at least the pain is almost gone.

Tired: I know exactly what you mean about crying. When the fistula came back, I had a total breakdown. I’m having to lie to everyone at work because I’m embarrassed about the aliment, it’s not like you really want to discuss that with co-workers. I just made up a story about having to have ovarian surgery, I feel horrible for lying :(

I had found some more stuff about the flap surgery and now I’m starting to doubt if my doctor has enough experience. I asked her if she has experience doing the flap and she said yes, but I looked and she has only been out of school for 9 years. I’m sure I’m just really paranoid and scared, so I keep telling myself to stop thinking about it and that everything is going to be fine :)

I know we are both going to be fine and heal!