Julie-
I am so sorry your medical care is poor. Both enemas and suppositories are very standard treatment for cuffitis. I cannot believe a doctor would suggest prednisone before going through the standard treatments. Search through this board and you will read a lot about cuffitis. BUT be forewarned there are some people on here who have refractory cuffitis.... meaning it doesn't respond to standard treatments. But for most people cuffitis is easily treatable. Get those suppositories from your doctors and give it a try.

And yes... go to Cleveland Clinic.. or at least somewhere where doctors have knowledge of jpouches if your cuffitis isn't resolved with standard enemas or hydrocort or canasa suppositories.
good luck

Canasa suppositories are the only thing that worked for me. The only other thing I tried was Auucort. It sounds like the doctor wanting to put you on prednisone doesn't know much about cuffitis. Please do not take it. It might help but it would be over kill if it did - plus I agree with you. I had the surgeries a I refused to take prednisone again.

Cleveland Clinic or the Mayo Clinic both have excellent IBD GI specialists and surgeons. I went to Mayo and it gave me a great peace of mind. My GI referred me there when he didn't know what else to try, I'd been on Anucort or Canasa for months before he referred me to Mayo in Rochester. There could be other doctors with more knowledge where you live, I don't know.

Take care

Actually, I probably would go with prednisone, with the hope that it could induce a remission, then perhaps stay in remission with the suppositories. But, that is only if the inflammation is severe, and I'd want to try the suppositories first.

I have learned to keep an open mind, and am not willing to suffer, in order to keep a vow I made to myself. Since surgery, I've had to take short courses of prednisone 3-4 times for acute arthritis flares (which happened to also coincide with pouchitis/cuffitis flares). It was only a little over two weeks of treatment, but got me turned around.

Still, it would not hurt to get a second opinion if you think this not appropriate for you.

Jan

Well you know us accountants Jan. We tend to see everything in black and white. I need to look in the gray areas more.

Hi Julie G,

I'm more or less in the same situation as you as my surgeon suggested me prednisone after I tried mesalamine for a month without much luck.

I'm eager to know what you were told at the Cleveland Clinic.

I have never tried prednisone (my UC was detected only two weeks before my first operation), but I have heard some pretty bad stories about it.

Thanks.

I agree with Jan. I've had Cuffitis numerous times over the years. The suppositories and enemas never did anything for me except further irritate my tissues, and ramp of my stool frequency. My GI's Docs over the years have usually subscribed to the theory of 'Let's knock it out now, and quickly, and not let it get out of hand', and I agree with that approach. The times when I have fussed around with Topicals and suppositories bring back memories of some some bad days and nights for me. When short runs of Prednisone were ordered up I usually felt a dramatic improvement within 48 hours and felt better than I had in months.


MK-

Thanks for your replies.

I have been on Mesalamine for more than a month now and it has basically not helped me - lately it's even getting worse when I use the suppositories, so I think I stop using them.

I have a two months old son and a two year old daughter that need their dad back to normal, so I might be willing to try the Pregnisone although I have heard a lot of bad things about it.

The pregnisone you have been using has been suppository or oral? 10Mg?

KrummeEs,

Over the years I've only ever been prescribed oral Prednisone. A short course run is usually between 20mg and 60mg a day for a week or two then I begin a slow taper over a couple of weeks, then done. Very minimal side effects for me on those short runs. The improvement though is always really dramatic and very swift.

Within 48 hours I usually see a complete resolution of my issues. That's a good deal to me.

If I fuss around too much with Topicals and Non-Steroidal alternatives with no improvement I just end up prolonging my misery for days or weeks longer, and end up really NEEDING to take a short course of Prednisone to right the ship.

MK-

Did you ever take Asacol or Mesalamine orally? Some people can't take it, someone on this board ended up having their colon removed as the Asacol actually made their problem worse. If it is making your cuffitis worse then I agree you should stop taking it. I thought it was just causing you a discomfort stinging when inserting it and apologize for encouraging you to keep taking it.

What ever you decide I hope it knocks it out and it never comes back!

I tried Pentasa 1g (oral) twice, but it for sure didn't make me feel better.

To be quite honest, then I no longer know if I'm better with or without Mesalamine (oral or suppositories), I have so many ups and downs. I just know for sure that it has not made a significant difference for me and I'm more sore if I have been using it.

TEMarie, don't worry, I understood perfectly what you were saying and appreciate your replies very much! Thanks!

I think ghats I'm ready to take the next step, it being Hydrocortizone, prednisone or something else. My surgeon is on holiday and when he is back I'll move on. It's been two months of pain, which isn't easy to manage with a good job and two kids aged 2 months and 2 years. Thank god I have my very supportive wife ... And you guys :-)

Out of curiosity: Is the any difference between Asacol suppositories and Canasa suppositories?

They are both Mesalamine products, right?

You (Americans) always mention Canasa - is it supposed to be better than the Asacol? I can't buy Canasa here in Spain and Asacol doesn't seem to work for me.

Asacol is a name brand of mesalamine here that orally has a special coating so I think they'd be the same thing. Some people take hydrocortizone suppositories and they clear it up, they didn't work by themselves for me. I use them with the canasa when having a bad flare, Canasa (mesalamine) at night and hydrocortizone (anucort) during the day.

If you can zap it with a short course of prednisone then go for it. It appears to be getting worse. Mental Kaze is giving a good alternative to the standard treatment. When the standard isn't working you need to think out of the box.

I was lucky the mesalamine, whatever name it is called, ultimately worked for me, but it keeps coming back. I'd be interested in seeing how this all works for you, if you do the prednisone route. It might be worth me doing it if it would put me in a long remission.

Please let us know how you are doing and how you finally get rid of this pain in the a$$!