Confused about Ulcerative Proctitis treatment

Hi,

    I went to see my new Gastro doctor and he went over my file.  My previous Gastro doctor left and she told me to still take the Asacol.  The new doctor said usually when its pancolitis or left sided you take the pills.  Most of the time doctors will give you both pills and enema, but once your in remission they stop either the pill or enema.  He said with ulcerative proctitis it's different.  He said he didn't want to keep me on pills for the rest of my life like that because of my age.  He gave me three options (1)to go off the pills, (2)only treat UP when I flare, or (3)have another colonscopy.  The colonscopy is out of the question.  I'm feeling fine. 

I told him I would just treat the UP when I flare.  Then, he said you realize if I take you off this medicine it's a chance you might flare again.  It's been a year for you in remmission it could get worse.  I just don't want you to think I'm the bad guy if you have a flare.  He ask me do you plan on having children.  I said not now.  He told me if you are then you need to stay on the pills.  Most patients flare up when they become pregnant.  He said I'm going to give you more time to think about it, but I want you to stay on the pills.  He told me to find out what others do.  Join chats or google it.

He really confused me.  I guess he wanted to give me the worse thing that could happen.  I read some of the previous post about when others stop meds and that scared me.  Do most UP patients treat each flare up as they come? 

CeeJay

I always take a maintenance medication every day. For me, it's Lialda.

     I suffered with UP for twelve years before having surgery.  My maintenace drug was switched from Asacol to generic form of Colazal because my former GI doctor felt that Colazal treated the rectum better than Asacol.  I can say this much for the Colazal.  While it did NOT keep me in remission, it DID keep the ulcerations confined to the rectum.  Never did my disease spread further into my colon.  Every colonoscopy I endured showed NO inflammation in colon, no polyps, no dysplasia, only minor diverticulosis.  Unfortunately, my rectum was a mess.  I became unable to retain any of the rectal meds which I took faithfully throughout the years, they just oozed on out.  Prednisone seemed to be the only drug that gave me any relief but I became dependent on it.  You certainly do NOT want that to happen.  It gave me full blown osteoporosis, high blood pressure and type 2 diabetes.

     Since surgery in 2010, I have been off the prednisone and, while I will always have osteoporosis, my blood pressure is easily controlled with only one pill a day and I no longer have any form of diabetes.

     When I was able to retain rectal meds, Rowasa seemed to work pretty well.  I was switched to Cort enemas alternately with Canasa suppositories.  The best of luck to you in finding a suitable treatment.

I have proctitis and I have just taken rowasa and canasa suppositories. I was taking the rowasa first but when I switched to a new GI doc recently, the new guy told me to just take canasa because the rowasa is going higher up than I need it to. I don't know why a GI doc would treat proctitis with oral medications. Its my understanding that those meds do not help problems in the lower rectum. I wonder if you could slowly taper off the oral meds while starting to take some form of rectal meds. I personally learned the hard way that regardless of what our specific diagnosis is, most of us should be on some type of maintenance dose-even those of us who just take rectal meds.
My plan is to continue on a maintenance dose of canasa and if I have another flare I'll do the canasa every day and maybe add rowasa at night.

Good luck. I hope you find a good medication protocol that works for you.

Having recently switched to a new GI myself, I find that doctors are reluctant to say that they think another doctor did something wrong or went a different route than they would have. Maybe your new doctor is afraid if you just stop abruptly it will cause a flare. Can you call him and ask him what he thinks about tapering off the oral meds while at the same time starting rectal meds?

@ Chrissy I think you have a point. He told me to give myself three months and then let him know if I want to stay on medicine. I guess I will just wait until my next appointment. Just wanted to see what others with UP are doing.

@DBwithUC, I think my previous dr. had that in mind. She would always say I'm trying to keep it limited to the rectum. You don't want it to spread. You will really be in trouble. I guess thats why she said some meds is better than no meds in your system. No, I'm not allergic to 5asa.