I do not have fistulas but I do have chronic cuffitis and anal fissures (always have anal pain of some sort). I treat this with canasa and rectiv cream. My GI has indicated anucort would worsen the fissures so I am not sure if this would pertain to the fistula issue as well or not.

Where exactly is your pain from the fistulas? I often have lower pelvic pain, pain at the anastomosis (small ulcer there) and in the anal transitional zone. I have ulcers there that really do not heal due to the narrowing of the anal canal and anatsomosis after surgery and surgery related ischemia.

The way it was explained to me is that cortisone can, if used in excess over long periods, cause tissue to become thin and "papery" and that once damaged, it can't recover.

Now, as a caveat to that let me say that a DIFFERENT doctor pooh-poohed that, and said if it works, use it - but in his opinion there were more effective things to use.

So I would also be curious as to the current consensus of opinion in the medical community, having received two diametrically opposite opinions from two perfectly competent doctors.

I used cortisone a lot when I had UC, and I always wondered if the fistulas which the doctor recently cut out (still healing from that) might have been caused or aggravated by tissue damage from it. My current doc said absolutely no. No relation. But I still wonder.

PXD David,

My surgeon said the same thing about skin thinning for anucort, however Dr Shen at the Cleveland Clinic told me you could use anucort forever when I questioned him about this issue. He probably should have qualified that statement to say repeated use for short periods of time was feasible.

Possibly you still have pain from healing? I am not sure I would want to mix anucort in with exacerbated healing tissue. It could make things worse as it can be very irritating.

It's nice to read some anecdotal "evidence" that what my doctor said might not be entirely accurate. He's new to me, but was very tough to get "into" and is very highly regarded in Charlotte, NC. His assistant is even better, IMO. I'm about 75% sure that the discomfort (rarely actual "pain") and pressure I feel whenever my pouch isn't completely empty (?) is either cuffitis, pouchitis, stricture, or other non-fistula related, mostly because it feels fairly far up, whereas the fistulas are visible. To be blunt, it makes intimate situations involving my male organ particularly uncomfortable, and is a constant source of stress primarily for that reason. I am, also, 99% sure that the fistulas exacerbate the issues I do have, mostly from a leakage standpoint.

Ideally, I'll one day be able to have yet another fistula surgery, and then go on a regimen of drugs to completely destroy them. Remicade and--to some extent--Methotrexate terrify me, but both were mentioned as possible helpers in my future. Remicade will never be feasible until we have single-payer healthcare in this country, but the Metho seems to actually be available as a generic pill (?). One day. For now, I can't afford anything but office visits and generic drugs. The last fistula surgery was two years ago. Worked great, then just came back again.

To treat locally, all I really want is Canasa. Again--can't afford it, and no generic that I'm aware of is available. I've read many study excerpts/accounts of cortisone thinning skin. It's definitely something I'd bear in mind, and I'd never use them long-term. I'm just desperate now to try and get all of this inflammation down. I finally got a really great look at things by putting a mirror on the floor, shaving, using a flashlight, etc, and..it just looks like an inflammation warzone.

Dan-
I'm not sure why you tie Remicade to single-payer coverage (which doesn't seem politically feasible). I'd expect all (or at least most) of the plans that qualify for the Affordable Care Act to cover Remicade (and Canasa). If I'm correct you should be able to try these treatments effective January 1, assumiing you sign up for a plan.

There are oral mesalamine drugs that are generic. Sulfasalazine (if you tolerate it), Colazal, and even Asacol (but I am not sure there is any generic being made of that). My son uses generic Colazal (balsalazide). It does not contain sulfa, even though it sounds like it does. I think it would be worth a try, since Canasa is not in your budget. I have been on sulfasalazine for many years, and just use Canasa for the occasional flare.

During open enrollment perhaps you can change plans that has better brand name coverage. I have a high deductible plan, but once that is paid, my brand name copay is $30 for one month and $60 for 2-3 month's supply. So, my Simponi injections are $30 a month. Maybe something to look into, unless you already have.

Jan

What surgery did you have for the fistula? I have been dealing with this thing since September of 2012 and it's been hell!!!!! I've had 1 mushroom drain 2 cutting seton and numerous euas. I am seeing my surgeon tomorrow first time since April. Hoping he will do an eua to see if it's any better.