Fistual Hell..I want my life back!

I'm scheduled an Advancement Flap at the end of this month. I am VERY weary, and so afraid it won't work. My journey began early last year while traveling internationally. I developed a boil on my buttocks and had to have it drained. I was given antibiotics and the infection cleared but the wound didn't heal. Back in the states, I went to see my PC when it flared up again, and she drained it and did a culture and found two separate bacteria in it. More antibiotics and again, the infection cleared but the tiny wound didn't heal. Then after yet another infection I finally sought out a wound specialist. She didn't feel it was very deep, and tried everything from hyperbaric chambers, to honey, to pressure bandages. Nothing. I was on 11 different antibiotics over a six month period. It was killing me. Finally, I sought a second opinion with another wound care doc, who immediately took a long wooden handled Q-tip and stuck it all the way into my wound. "We have a serious problem" he said. And so began my first foray into the world of fistulas. I was referred to a general surgeon, but asked our docs where I work who the best CRS was in town, and sought her services.

In September, I was scheduled for a fistulotomy, but once in surgery my CRS discovered I had two tracts; one crossing the sphincter muscles. I was given seton placement instead, and scheduled an MRI. In October, I had knee surgery for a torn meniscus. In November, I was given a Fistula Plug. Two days after surgery the wound on my buttocks had nearly healed. I had been developing a large amount of granulation tissue around the wound all year already. My body was in hyper drive to heal the darn thing. I remained in bed literally a grueling three weeks. At the end of the third week, my now nearly invisible wound, began bleeding again. My plug had failed.
So, two days after Christmas, I was back in the OR having it removed. My CRS discovered I now had a third tract. She gave me a fistulotomy for the lower tract, and three setons. Back for another MRI last month, which revealed only one tract now (I guess fistulotomy worked), and now I'm scheduled for this flap.

I had surgery in September, October, November, and December. As I said, I'm very weary, and very afraid. I've also been very depressed more so I think due to the brutal winter we had this year where I live. Trying to recover from all of that surgery is no fun being cooped up in the house. I am sooo worried my stitches will get torn loose or something. My CRS says she's going to put in a drain for a couple of weeks on the external opening, to make sure it doesn't heal too quickly on the outside again. . I have never been diagnosed with Chrons, although, I was diagnosed about 5 years ago, with a very mild case of Colitis, and some diverticulitis.

I have changed my diet after the first of the year, and only eat all natural, fresh foods and healthy proteins. I'm trying to give my body every advantage.

I worked as a health care executive, and missed so much work, I took a severance package to focus on getting well, so at least I don't have to worry about any of that for a while at least.

My surgeon tells me the fistula is high up enough that pain shouldn't be an issue much more than the Plug was. It was rough a few days, but was manageable. Other than Kondrumel, and Citrucel...does anyone know of any tricks to keep things moving along at a good, easy pace? Any advice or feedback would be very helpful.

Thanks!

Welcome to Healing Well, FistulaHell! Your screen name says it all - you have been through a lot. I have never had a fistula thankfully but lots of our members have. I am sure they will be along over the next couple days and offer some advice.

I want to address your inflammatory bowel disease. While it is not common to develop a fistula when one has ulcerative colitis, it does happen. Is your ulcerative colitis being treated? Have you had a colonoscopy since your UC diagnosis? I think you should see your gastroenterologist once you have recovered from your surgery. I worry that without treatment of your IBD the fistula either won't heal or you will develop another.

Facing another surgery after so much recently is pretty overwhelming. Hang in there and we are always here if you need to vent or ask a question.

Here’s my experience w fistula hell. When I first developed a fistula, I had no clue what was happening. My disease had been in relative remission for a while when BOOM- everything hit at once. I had a scope where my GI suggested Remicade when all I had been on previously was asacol/lialda. I opted to give LDN (low dose naltrexone) a try instead. Unfortunately, aside from some insanely vivid dreams, LDN was a bust. It actually, I think, let the disease take hold and I began to develop all the problems at the same time. I had a fissure and an abscess at the same time. The abscess blew and I thought I was better. Too bad it became a fistula. I was in major pain and had sings of infection (another abscess/soon to be fistula brewing) and went to the ER. They just thought that I had an infection so they “fast tracked” me and I got in right away. Since I was having pain in the vaginal/anal area, the doc used a speculum to do a vaginal exam. This made me literally scream aloud in pain, which made my husband come barging into the exam room looking to hit someone (it’s pretty funny, looking back). That’s when they saw the abscess and a small “hole.” The doc then used one of those wood Q-tip of death things to probe. After the urge to hit someone myself wore off and I stopped crying, the doctor told me I was going to be admitted and passed off to GI because I was a complicated case (duh!). Anyway, I ended up with three fistulas which were ridiculously painful and oozy and disgusting. They placed draining setons in them, which didn’t seem to do much but make me feel weird about having zip ties all up in my business. Anyway, a month or two later, my disease had gotten so bad on other fronts that surgery was necessary. When they did the surgery, they removed all the disease parts and installed a sigmoid colostomy. I have not had any trouble with fistulas since (knock on something lucky). They are just plain dumb and I’m sorry that you are dealing with this. I personally broke down and begged for surgery and even though my ostomy comes with its own set of special, dumb issues, I don’t regret it at all. Maybe you need another scope to get an updated dx? Also, as far as keeping things moving, I’ve always used Miralax (or the much cheaper store brand of it.)

I'm so sorry for all you've gone through. Fistulas are so awful. I also got an abscess several years ago that drained and never healed. Took a year to figure out what it was, this was before I was diagnosed with Crohn's. So I had no idea about fistulas.

Luckily mine only had the one tract and did not cross over in to too much muscle. They were able to lay it open with a fistulotomy. Took a whole year to fill and and heal, thankfully it wasn't too painful healing, but was rather frustrating.

One thing that annoyed me at the time was that I was having all the signs of Crohn's but no one wanted to look for it. Just fix up the fistula and send me on my way. If you've already been told you have colitis it might be worth looking in to see if you need further treatment for it. There are medications out there that are supposed to help with fistulas when having IBD. My heart goes out to you either way, we go through so much.