Back from seeing Dr. Shen yesterday. I'm so sick I don't even know how I managed to make the plane ride. He says that I have one of the worst cuffs he has ever seen and was wondering how i've been functioning. On a scale of 0-6, active inflammation is a 5 with nodularity and polyoid lesions and possible sinuse. The pouch he said is level 2 of inflammation and wasn't concerned about it. He seemed to feel that no amount of medications or dilations would help until the cuff was out. That all my problems including swelling of the pouch opening were coming from the cuff.
He absolutely wants Dr. Fazio to do surgery, but he says there are no openings for almost 2 months. I'm supposed to call Fazio's office Monday to try and set up an earlier time, but it doesn't sound good.
I don't know what to do! I'm in so much pain! I can barely move. He prescribed an opium suppository which I took today, but so far no difference.
I really don't see how I can last even a couple more days like this. All this pain since early June. Some of it subsided for a couple weeks, but it seems to have gotten worse again the past week.
Somebody PLEASE HELP WITH ADVICE! I don't know what to do! I'm in an absolute panic with this pain. I don't know how to hold out...

I wish I could help you. My only suggestion, if you haven't done so already, is to contact your local CCFA to talk to a patients' advocate. Often they have advice regarding local physicians or surgeons (I mean in your geographical area). Ask for an advocate who's got a j-pouch with part of the rectal lining remaining. I think they are not allowed to give direct referrals to surgeons, but they can tell you who worked with them and their experience with their doctors. The one I contacted in Houston was very helpful to me. It seems like you should be able to get something stronger to help for the pain (if there is anything). I feel so bad for you; I wish I could do more. I hope someone can help you with your problem quickly.

Wendy, I feel for you, I got the same reaction from Dr. Shen in June. I am set up with Dr. Fazio for surgery in September to have the infected cuff and a fistula removed/repaired. I am in an awful way this past week. I have cufitis so bad, I can't even eat. I have not eaten since Thursday night. I tried the B & O suppositories you are talking about, and I too felt that they were no help. Right now I am self-medicating with pred, flagyl, and percocet ( of course I'm not recommending self-medicating, by any means). I have made my doctor aware of my current course. The percocet have helped the most, they slow the diarrhea and relieve my pain and cramping. I am going to do the pred very short-term so as not to compromise my healing when surgery is up.
You should tell Dr. Shen you want better meds.
Contact Gina in Fazio's office to see if she can get you in sooner, SUTCLIG@ccf.org, she's really nice and tries to be accomodating, she may even be able to get you in on a cancellation list. It seems as if things are happening so fast. PM me if you want...

Unfortunately, I too found out the hard way that our surgeons do not consider "pain" an emergency. After 4 months of hell, I checked myself into emergency and refused to leave until something was done. Although I did have to wait a few more weeks for surgery to remove the cuff, at least I was finally given a combo of meds to help ease the pain.
Susan

Hi Wendy,

I'm so sorry you are going through all this pain right now. I agree that you need to get your pain under control until you can have surgery. Can your doctor refer you as an emergency to a pain management specialist? I always have problems with anaethesia and pain meds so I'm under the pain management team whenever I am admitted to hospital (for whatever reason) as well as when my joint pain gets out of control. I would be the squeaky wheel until one of your doctors does something about you pain as it really isn't acceptable that you should suffer in agony for the next two months.

I hope you get some relief soon, but in the meantime come here for support or just to let off some steam, that's what we are all here for.

Take care and keep us posted.

Shell