Fistula and Abscess 😡

[Andy1982]

Hello everyone

Crohns for 22 years and got my first fistula which is turning out to be a pain in the ass.

I have a fistula from bowel to skin, under my belly button. I was operated on twice to get drains in but the CT showed today that the abscess “Mush” as the surgeon described it is still hanging around after a few months, slightly smaller in size.

I’m just wondering if anyone has had anything similar to this and did it heal after a while? I was on TPN for 6 weeks but they want me to go on for another two months and train while in hospital so I can do it at home. Obviously not keen on the idea so any advice etc would be grateful I’m on Modulen at the moment but no meds as my Stelara can’t be given until the “mush” is gone.

 

[my little penguin]

Can you get a second opinion?
Remicade is known for helping fistulas from crohns
My adult child is on Stelara (no fistulas though ) which the infectious disease doc says in generally is less concerning than anti tnf for some infections .
Definitely get a fresh set of eyes .
Maybe there are other options

 

[Oldbie]

Hey Andy, I'm so sorry to hear you are going thru that. I have an enterocutaneous fistula as well located below the navel, and currently, unfortunately, have developed an abscess that will require percutaneous drainage pronto. I've been living with the fistula for three years, with low drainage and few problems, until very recently. I tried tpn for a whole year and it was not a good lifestyle, and it did not close the fistula. Remicade did not help me. My gastroenterologist wants me to try Rinvoq, the new drug, and tells me he has a patient on it with multiple fistulas that closed. It's so new I'm a little nervous, but my surgeon does not want to operate unless forced to (probably scared of the "mush" ), so I'm not sure there are many options. Good luck with your situation!

 

[bmulherin]

Hello everyone

Crohns for 22 years and got my first fistula which is turning out to be a pain in the ass.

I have a fistula from bowel to skin, under my belly button. I was operated on twice to get drains in but the CT showed today that the abscess “Mush” as the surgeon described it is still hanging around after a few months, slightly smaller in size.

I’m just wondering if anyone has had anything similar to this and did it heal after a while? I was on TPN for 6 weeks but they want me to go on for another two months and train while in hospital so I can do it at home. Obviously not keen on the idea so any advice etc would be grateful I’m on Modulen at the moment but no meds as my Stelara can’t be given until the “mush” is gone.

 

[bmulherin]

I have to Enterocutaneous fistulas and currently they are closing up. I can give you my protocol. I used listen to my gut protocols by Jinni Patel Thomsen. I also used leaky gut daily by emerald labs. Pm if want to talk. It’s ruff stuff