Is this normal?

[k2smile76]

Hi,
Long time forum reader, first time poster...
Firstly a little about myself... I have crohn's disease. Diagnosed in 2005, currently on 6x salofalk 500mg and 4x Azathioprine 50mg daily and i am hoping someone will be able to give me some advice...

I have an anal fistula that is approx 3.5cms deep and has self opened up to at least a 1cm tear. I have recently developed another lump (similar to the first one before it tore open) between the anus and the vagina that feels as if there are 2 openings to it that are yet to open up and drain. It is around the size of a small marble and sore to the touch. I also have what feels to be 2 other fistula draining holes in between the torn fistula and the new lump. I have been to my specialist who sent me to a colorectal surgeon who I saw before the the new lump appeared. He put me on a waiting list for a non cutting seaton.

I am a little confused as to why he has chosen to do a seaton as with such a large opening to the main fistula, it is constantly draining already. Isn't that what a seaton is supposed to do to fistulas that aren't draining? It drains so much that I constantly have rashes and feel like crap. The only way I can feel even somewhat normal is to wedge toilet paper between my cheeks and hope to god it doesn't fall out my pants leg. Also as I couldn't afford the $3000 out of pocket for surgery, I am currently on a waiting list which is a min of 6mths wait. In the time I have been to the surgeon and been put on the list (approx. 2wks) I have developed a second and possibly third fistula. I am desperately trying to get another appointment with my specialist to see what he can do but I'm scared that I will still be forced to wait for a very long time and it will get to the point where a seaton will not be sufficient and I will be looking at getting a colostomy bag or intestines removed or something

Should I be scared? Worried? Going to hospital?

 

[David]

Welcome to the forum

I don't know the answer to your seton question, I'm sorry. Hopefully someone else will be able to comment.

However, have you discussed the idea of additional treatment options with your doctor? That you are developing new fistulae tells me your current treatment regimen isn't working well. Adding Remicade and enteral nutrition to the arsenal comes to mind.

Again, welcome!

 

[ontariomom]

before i got my seton put in i was draining quite a bit, in fact in the last year i have been on 6 different antibiotics and nothing worked for long and the last two didnt work at all. When i got my seton put in i weeped alot for the first 6-8 weeks. The surgeon said he had hoped it would have settled down by then. It took about 12 weeks before i noticed it slowing down and eventually stopping. I now ony weep on days when i find myself too active or have alot of BM. I have a fistula in both butt cheeks and a seton only in the one complex fistula.

So far i havent developed any others so i can only hope that its helped. Right now i have a huge ache in my butt cheek but am not feeling well today at all so i am sure that is why.

I have used no threaded guaze pads that i stick inbetween my butt cheeks. i find they absorb the weepage well and easy to remove and change. They are thin and dont feel weird, for the most part.

I hope you get some answers and some relief. i always figure it never hurts to see a dr or talk to one .

 

[PsychoJane]

I would not know what to answer about the seton either, I never had them. I dealt with fistulae for the last 2 years, not the same type but I think it should still be pertaining.

I see that you are taking salofalk and Aza. Are these medication you had for a while? Aza is suppose to be beneficial for fistula and more even when antibiotherapy is combined for a few weeks. Did they ever gave you the Ciproflaxin (1000mg/day) + Metronidazole[Flagyl](1500mg/day) combo? If not, it worth considering a try at that. It is nothing miraculous and is a short term strategy and helps to reinforce any other treatment. If you have been on Aza for a while, I would agree with David that the treatment should probably be reconsidered as it does not seem to be too concluding considering the new fistula. Has your GI ever mentioned that Anti-TNF could be used (usually Humira or Remicade). They are the reknown to work good with fistula in general.

 

[k2smile76]

Thankyou for your replies and sorry about the late response.

I have finally managed to get another appt with my specialist next week and am hoping to fast track the surgery. The fistulas seem to be feeling a little better today, not too sore to wipe after a bm and not as weepy as it has been in the last few weeks.

I am going to discuss a change of meds at my appt because I have been on azathioprine since I was first diagnosed in 2005 and only changed from salazopyrin to the mesalazine this year. I also take steroids every now and again when my blood tests call for it which hasn't been for at least a year now.

 

[David]

Sounds good, let us know how you do and if there's anything we can help you with

Good luck!