Living with a Fistula: Seeking Advice and Cream Recommendations

I have a nasty fistula that drains bile, acid, and other unknown yucky stuff out of my vagina. This happens when my bag stops up and isn't working, so it has to go somewhere. The surgery to fix it is worse than the fistula, 10 hours and no guarantees. Does anyone know of any good cream I can get to help me? It actually took the paint off the underside of my toilet seat. I have to sit on a donut at work and walk funny! Thanks...

Hi Jeannie,

I too have a nasty smell and "stuff" coming from the anal area and vagina. I have sinuses coming from a collection in that area. It is not nice, but I suppose you could deal with the smell with a femme spray. The surgery to fix mine has no more guarantee than 40%... So, we just don't go there... I also sit on pillows at work and walk like I have a 10-foot pole where the sun doesn't shine... My thoughts are, if people don't like it, they don't have to look at me...

As for creams, here in Australia, I found a really good one called Nilstat (vaginal inserter also) that has helped me out quite a lot. It also helps if the discharge gives you a bit of thrush...

JAx

I hope it helps you out.

Hi Jeannie

I too have a nasty smell and "stuff" coming from the anal area and vagina. I have sinuses coming from a collection in that area. It is not nice, but I suppose you could deal with the smell with a femme spray. The surgery to fix mine has no more guarantee than 40%... So, we just don't go there... I also sit on pillows at work and walk like I have a 10-foot pole where the sun doesn't shine... My thoughts are, if people don't like it, they don't have to look at me...

As for creams, here in Australia, I found a really good one called Nilstat (vaginal inserter also) that has helped me out quite a lot. It also helps if the discharge gives you a bit of thrush...

JAx

Hope it helps you out      


Not sure if you have it over there, but there is a great nappy cream which I still use called Sudocrem - sort of a medicated barrier cream, may do the trick? Also, if very sore inside, not sure if that is the case, there is something called Instillagel which comes in a syringe and you just 'point and shoot' it inside - hope that they may be of some use? Rachel xx

Thanks ladies. Not sure if they have those meds here but I will ask. Mine is outside, like diaper rash. I have a man made vagina and no rectum...they took it out. Barbie butt. You are right about the surgery, mine is scheduled for Mar 2 but I am cancelling it today. The side effects are worse than the drainage. Might have to be on TPNs for the rest of my life, did that for 14 weeks, hated it. The drainage comes and goes, today it is better, I will get some of the spray to fight odor. I hate that part. You girls are the best..Jeanie in Georgia

Hi Jeanie, just had a look on eBay for Sudocrem - there is a UK seller who will ship to the US if you can't get it over there - the link should get you there.... Rachel xx




http://cgi.ebay.co.uk/Sudocrem-Antiseptic-Healing-Cream-400g_W0QQitemZ380172014119QQcmdZViewItemQQptZLH_DefaultDomain_0?hash=item5884049227

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