Seeking Advice - Managing Multiple Abdominal Fistulas - What Would You Do?

If it was you, what would you do? I am waiting for surgery number 7 to repair a small bowel fistula which developed after my surgery last year (also to repair two fistulas). Basically, I have several holes in my abdomen that leak fluid, currently about 100mls. If it was one hole, I think I could manage, but currently I have 7 holes that leak. I try to manage it with wound bags, dressings, and pads. The holes quite often close and then the build-up either reopens one that has closed or it makes another one, which is painful for a week or two until it breaks open. The main problem I have is keeping the dressings etc. intact, so sometimes I have to shower and change several times a day. My surgeon is reluctant to do further surgery given that every time he tries to repair one, another one develops. The main problem is that I have a lot of scar tissue and adhesions as my illness was misdiagnosed for 20 years, and so it's hard to repair and puts me at risk of further problems. So I am in a quandary. Part of me remains hopeful he will crack it this time and all will be well, and the other part says, "Come on, Trish, try and manage it, get on with your life, and if in a year's time nothing's improved, go back and have the surgery." I really can't imagine having a sex life like this, never mind a relationship. I am desperate to return to work and have some sort of life, but can't imagine finding an employer that's going to be tolerant of someone that needs to wash and change during a working day. My career has always been a huge part of my life, and being out of the workplace for this long has been hard, not just financially but in all ways. So I know it's my choice, but if it was you, what would you do?

If it was me, I would opt for surgery, but that is solely based on my wanting to have a life. I hated it when I couldn't do things because I couldn't walk far, so I became limited as to where I could go. If I was going to have to shower X number of times a day and so couldn't work or whatever, I think it would really get to me (and having had depression once, I really wouldn't want to risk it a second time).

Good luck in whatever you decide.

When I was going through surgical repair procedures, I found it helpful to do my own research on options available. Many surgeons don't think of these options that are available if they haven't typically encountered them. One such option is Cook's Surgisis anal/fistula plug, a not-so-surgically-invasive possible solution. The fistula plug merges with surrounding tissue or does not, but it does not leave additional adhesions and site trauma.
I would suggest you do your own research on this and take in printouts from the sites. One helpful site is:
http://www.cookbiodesign.com/productinfo.php?product=fistulaplug&page=3
and also could research
Alloderm.
Good luck to you!

Hello Star,

What a very difficult situation for you to cope with. There are so many issues for you to consider.
Having been thrust into the reluctant stoma situation last year myself, I can well understand your sense of frustration and hopelessness.

However, it seems to me that you need to take some time to make yourself well again, and if you can stop focusing, for the time being, on a return to work, that rest, exercise, and maintaining a good diet will help your body heal. When the time comes, you can better face surgery with the prospect of healing without forming more fistulae. Just let your body, and mind, rest a bit - you have many years of life ahead and a while of 'time out' is possible.

Meanwhile, I wonder about the quality of your surgeon - is he/she a top gastroenterological surgeon at a hospital of reputation? If he/she isn't, then you could do a bit of googling to find a name and then ask your GP for a second opinion referral.

Don't rule out a relationship... magically, they happen in the most extraordinary of situations. My aunt met her future husband when he was in the hospital having an operation for hemorrhoids!

Hi Staruk,
I'm sorry to hear that you have had so many fistulas with the adhesion complication.
I too have had 7 abdominal surgeries and fistulas formed from the drainage holes. The problem with the abdomen and adhesions is that the intestines don't like being pulled about, and each time the surgeon goes in, it makes them worse. I was living between France and England during my fistula time, and the French stoma nurse said to use baby pouches until they heal up on their own.
It took a while, but it worked. Best of luck.
Regards, Marilyn

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Thanks Marilyn,
I know everyone is different but how long did it take for yours to dry out?

Thanks, I think you are right. I do need to get myself physically back to some sort of state before I put myself through more surgery. My surgeon is one of the best. He was my second opinion. I do believe in him and believe he wants what's best for me, so he is reluctant for good reason. He said he nearly tore my bladder last time, and I know his concern is he will leave me worse off.

So most days, Coral, my head says leave it for 6 to 12 months, get fit, and see where you are. Maybe, like Marilyn says, it may heal. I have time. But then other days, I think 4 years have already passed, and I am no better off. Just how much longer do I have to be on this treadmill? But in my heart, I know I am lucky to be alive, and you can't ask for anything better. Thanks for taking the time to answer.

Trish