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10 replies

Fistula problems

SavannahSavannahMember
I wish fistulas were not so tenacious and hard to treat. I have been to Mayo seven times in the past 3 months for tests and procedures trying to close my fistula and to date they have not been successful (I guess the jury is yet out on their last attempt). The fistula is just above the inlet to the pouch in the ileum and there is a stricture at the inlet. They have been trying to close the tear with a covered stent in the stricture that also covers the fistula to allow it to heal. The fistula is also clipped. I suspect the narrowing and the perforation are related as stool was hard to pass building up too much pressure in the small bowel. I hope they will be able to fix it. I guess my diagnosis has gone from UC to Crohns or Indeterminate Colitis although it hardly matters as the various treatments and drugs are about the same. It has been disheartening these past few months. I know I have to adjust to coping with flares that will come and go and require continuous monitoring and treatment. I thought I had come to terms with having a chronic illness only to discover that it is an endless, on-going process of denial at times, then being struck with reality, and then settling into acceptance and then the cycle repeats. I feel fortunate that I am being treated at Mayo where I admire their conservative approach and their perseverance. I just hope it will not come to a major surgery. SIGH. I admire all of my friends on this site who seem leagues ahead of me in gracefully accepting life with chronic pain and medical interventions. All of your combined experience and sage advice give me hope and strength. I will post to let you know how things develop for me with the fistula treatments. I would welcome comments from all of you and PMs from those who have struggled with fistulas.

It is a bittersweet season right now, isn't it. Here in Minneapolis the trees are spectacular but there is a winter bite to the wind despite warm, sunny days. I hope everyone is enjoying walks and being outdoors, fall chores, and the beauty of this time of year. The blustery cold and snow will be upon us soon I'm afraid.
Best,
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J J.T.Member
Hi - I also have has a fistula or a sinus tract as my surgeon calls it. It is at the bottom at the connection. I had it from day one in 1993. For years, it would scar over & open up as I got pouchitis. It gave me tailbone pain I have been on Humira for about 6 years, and it has been doing the trick of keeping it closed.

Have you tried Humira?
n/an/aMember
Savannah, so sorry to hear about all this. It sounds very complicated - you have certainly been through a lot.

I've had just a rather "plain vanilla" fistula (RV) for about 4 years now and have decided, for the time being, not to undergo any fistula-repair surgeries, so have been living with a seton. Livable, but as you are no doubt aware, it is not easy on the psyche, thinking about living like this forever, or wondering what the alternatives are/might be.

What other procedures have you had done in an attempt to close your fistula? I hope and pray that the latest attempt works.

Mayo is great, glad to hear you are being treated there. And, I LOVE the cities! I visit on occasion, MN is a wonderful state.
J JJAMember
A general surgeon laid-open my fistula. My fistula is healed, but now my sphinchters are damaged and I am now incontinent. Eventually I learned to "manage okay" in spite of things and adjusted to my "new normal." Then a few years later I developed chronic pouchitis on top of it all. It was like readjusting to a chronic illness all over again for the 3rd time.

Just wanted to say I can relate to the roller coaster of issues and emotions. The good news is that every time, eventually, I seem to acclimate/adjust/find my new normal, and life goes on. I agree there is something comforting about being treated at a place like Mayo where at least you feel like you are being treated by people that are competent and you are not just this anomaly in your small town doctors office where you are only the first or second pouch patient they have ever encountered, and you know more than they do.

Up here, the fall colors have been absolutely gorgeous! I personally think the colors have not been this vibrant in 12 years Smiler Enjoying the moment and not future tripping about what might or might not happen with my health has been an important tool in toolbox for coping with my latest twist in my medical journey, so for now, I will enjoy the beautiful leaves until I can enjoy those diamonds glittering in the snow on a cold sunny day Smiler
rachelravenrachelravenMember
Hi Savannah,

I developed an intrasphincteric perianal fistula in 2012-2013. I also had narrowing of my outlet (see below my issues).

Currently on a Medrol taper and Humira and feel so so so so much better. The fistula tract is smaller, not draining as much. It's no longer sore or hard to touch, and the granuloma tissue on the outside is almost gone.

He's treating me as if it's another form of IBD creating the issues. We are hopeful the Humira may close the fistula tract if that's the case. My doc said "old" pouches are sometimes developing "new" IBD symptoms, but whether it's truly Crohn's or a newer IBD type syndrome is unclear (think of IBD as an umbrella vs distinct diseases).

Anyway, have they thought about Humira or Remicade to see if it'd help your fistula issues?
SavannahSavannahMember
Rachel......... So far, medications other then two rounds of Cipro and Flagyl have not been discussed. I had a mild/moderate case of ileitis which seemed to calm down a little with the C and F but did not appreciably effect the fistula. I imagine the Mayo docs may try a few more times to close the tear with the covered stent (which also expands a sticture) and clipping before other treatments are considered. I hope it is on the mend now and won't come to that but I realize these fistulas are very stubborn issues. It is good to know that Humira and the other medication I am not familiar with that you are taking have helped you feel better and are gradually healing the fistula. I know from reading some of your posts that you have been through sooo many complications. I am so sorry. I sincerely hope your skies will be brighter soon. Is it hard to be on a "biologic'? I know very little about this class of drugs.
Thank you for replying it means so much to me. Take good care.
Savannah
SavannahSavannahMember
Thanks to all of you who have shared your personal experiences with fistulas and treatments and the multitude of complications that arise when repairs are tried. I feel fortunate to hear your stories as it helps me feel so much less alone and better equipped to consider various alternatives to my situation. Take good care everyone and keep posting, PLEASE.
Blessings,

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