Fistula questions

[zazasnana]

Ive had a fistula for about a year now. Ive had 7 surgeries for this that have not worked. I was blessed with a liver transplant and have to take drugs to lower my immune system. I dont know if this is why this wont heal or if this is common. At the moment i have 2 setons. These are so uncomfortable. Im just wondering if there is any hope for this to ever go away. Has anyone had any experience like this?

 

[xX_LittleMissValentine_Xx]

Hello, have you been diagnosed with IBD?
It sounds like you are having a hard time, sorry to hear this. Unfortunately fistulas are tricky things and often don't respond to treatment. You have had 7 surgeries in a year? That sounds like a lot.
There are several of us on here who have fistulas and similar experiences to you.
What surgeries have you had?

 

[zazasnana]

I havent had any major surgery, just seton placement a few times and fistula plugs a few times. Nothing seems to want to work. I know by reading posts on this site that things could be so much worse. I was just curious if anyone has had a similar issue. Setons to me are bad. just constant irritation. Ive not been officially diagnosed with Crohns. Its suspected but really the only issue i have is this darn fistula. And with my liver transplant, i have been truly blessed.

 

[AlliRuns]

Welcome. Fistulas can be really stubborn. Been dealing with them for 8 years, none have healed. I didn't have any other issues at the time of my diagnosis either, but I was finally diagnosed with Crohn's after 7 years of having fistulas.

 

[zazasnana]

Im so sorry to hear you have been battling these for so many years. Gives kind of a hopeless feeling. I know things could be so much worse, but these are annoying and painful. I probably will be diagnosed with crohns eventually. From reading on this site, i do have other problems associated with it. Mainly the joint pain. I hope you get some relief from this soon. Thank you for the support.
Linda

 

[Jaano711]

The setons are just meant to keep the fistula tract open so that faecal matter will drain out rather than having the fistula start healing at the sin surface, with faecal matter greeting trapped in the fistula and having an abscess form. I know at times they can be uncomfortable, even downright painfull. I once had one that stretched and tore the skin that was awful, but in saying that it was no more painfull than a full throbbing abscess and the temps and malaise that comes with the infection.

I am wondering if you are taking antibiotics as well as having the setons. As often the antibiotics are also crucial in the healing of perianal disease. The biological drug remicade is the most successful treatment for fistulas in my gastroenterologist and CRS's opinion.

Hope it starts to heal for you.

 

[zazasnana]

Yes, i take antibiotics but unfortnatly i'm allergic to Cipro. I cant take the remicade or Humira because of my low immune system due to my transplant. My Surgeon feels its my immune system that is preventing these from healing. Kind of a catch 22. Have to lower it to prevent rejection of my liver, but that can also mean ill have more infections. I'm optimistic that it will all work out in the end. You never know what kind of curve balls life will throw you. I hope things are going well for you Janette. Thank you for the support. This is really helpful.

 

[xX_LittleMissValentine_Xx]

How long do you have to be on the immunosuppressants for your liver transplant? And which ones do you take?
A lot of us are on them for crohns, but in a lot smaller doses than for a transplant I expect.
I recently had fistula surgery and my surgeon thinks it has fixed it. I know I am very lucky he was able to do that. But I thought you might like to hear about some success with them! Although I think I also have more fistulas, but my doctors don't really mention them. I need to ask about them at some point. I'm about to start infliximab (Remicade) so I'm hopeful it will help.
I hope you can find some relief soon

 

[zazasnana]

I take Prograf and prednisone to lower my immune system. They will soon be taking me off prednisone but ill have to take prograf for the rest of my life. How wonderful that your fistula has healed. I see you are only 21. I hope things work out for you in the future and this disease is easy on you. Thank you so much for the support.