asacol is the be all end all

My GI says that the only thing between me and a flare is asacol. nothing else I'm doing -- Canasa (rectal) probiotic (VSL), diet, supplements, psyllium husk, matters. That attitude is discouraging, particularly his comment about rectal meds. I had to beg for Canasa when rectal pain set in below 10 mg on prednisone. And it worked.

Anyone have docs like that? For all you have encouraged me to take rectal meds, being still a newbie, this is what has kept me from them, his attitude. Otherwise good doc.

Given the nature of UC, doctors don't have all the answers, and some doctors definitely have their own biases. So it's really up to you take the initiative and responsibility of researching options and then working with them to figure out the best treatment plan.

I've consulted with some leading specialists (in the D.C. area, England, as well as in India) and they have all differed in their approach to treating UC. That's why it's a good idea to get second opinions on your treatment so you're more confident with whatever you're doing.

journey2health...I don't like your GI, based on his comment about asacol or his apprehension of giving you rectal meds...I hope you continue with your daily regime regardless of the fact that your GI has his head buried deeeeeeeeeeeeep in the sand.

:)

My doc thinks it's great that I'm so willing to stay on my meds, especially the enemas. He said that most patients don't stay on them in remission because of the ick factor. But I say that I think flaring is much more icky than using an enema!

I think that you should ask your doctor if Asacol is all you need, then why do studies show that people who use mesalamine enemas twice weekly in addition to oral meds for maintenance of remission stay in remission for longer than those who only use oral meds. I agree with quincy that you should request enemas.

In the middle of reading this thread I went to the bathroom and saw drops of blood.. I hope it's just hemmorroids., Never got that one sraight, which is hemmies and which is colitis blood I haven't seen a spot of blood since starting canasa two months ago. He'll keep prescribing Canasa, which he calls a feel good, "icing on the cake" med. I haven't ruled out enemas. He just has and he'll prescribe it if I want it.

I still flare while using my maintenance meds. Life gets in the way, it is what it is. I'd not ever stop using them because I flare. Meds won't keep you from having a flare, they will help keep your flares to a minimum.

Flares...subjective. Some may not consider mine a flare....depends on what criteria UCers follow. Treat now, treat later...I don't wait as I did 20 years ago.

Regarding food. The word role is semantics. If food disagrees, don't eat it, but it won't cause you to flare.

Start on the enemas rather than skirting the issue with the suppositories. They're more for support than for treatment. Use them for maintenance.

When you had your bm, did you have any discomfort? did you have only one bm?
Was there blood on the tp or throughout the stool?

You're just off the pred and need to step up the rectal meds until all resumes normalcy again. Maybe in the future, you can avoid pred altogether.

quincy

My doc generally doens't discuss alternate treatments unless I bring them up, but when I do he has no issue prescribing them. He says he generally doesn't prescribe rectal meds due to low compliance. He was also more than willing to give me a florastor script when I brought up probiotics...but I couldn't afford to fill it.

Quincy, I'm so burnt out on meds and he won't give me rectals unless something goes awry and I demand them. I realize they aren't for treatment, just maintenance. Experience will be the judge. Sunday, was hemmy drops and after taking canasa that night everything fine today. Bowel movements scrape a little against the hemmies, but not painful, just awareness of them. BMs are medium quantity, bally to one and a half inches long. 1 to 3 movements a day. No blood. I'm satisfied with the regularity, stool could be a little softer, but I'm taking psych meds that cause constipation as does calcium, so I'm grateful/happy with what I've got particularly since I had a year of serious constipation before the first flare. Everybody's different. Let's see how it goes... I could see adding enemas to the maintenance arsenal after a second flare.

Ellen, I would actually think the enemas might help with the constipation and softening of the stool a bit. I have been using them and can tell the difference in the days I use them vs the day a week I take a break. They make my movements softer and less formed (looser).

Next appointment. March 3. Will discuss with doctor.

I take psyllium husk 2 tbs. a day for constipation

Question to Quincy and Beeswax: How bad and how frequent are your flares?

Ellen, Mine are not as bad as some I have read on here. My first one (aside from all the previous times I tried to quit smoking and went back to smoking) started in August of 08. I generally have a lot of mucus, blood, gas, cramping, urgency. I went on asacol and prednisone. The prednisone put it into remission but about 2 weeks after I was off I started to flare again. This time the prednisone did no good. I was at 40 mg for 2 months and my symptoms kept getting worse. Finally my doctor had me get the remicade infusions. I was going 20 times a day and during the middle of the night, mostly blood, blood clots, mucous, and small formed bowel movements intermittently, lots of gas, bloating, rumbling, gurgling colon that would go on for hours and sometimes keep me awake. I was never hospitalized. Though my doctor suggested either that, for higher doses of IV prednisone, or the remicade. Fortunately the remicade had an immediate effect and put me into remission. But my doc only set me up to get 3 infusions. about four months later I started flaring again, not as bad as the previous. I tried anucort suppositories and used them religiously every night for almost 2 months and just kept getting worse, typically going about 10-13 times a day. Finally I went back to the GI and back on prednisone again... I have 2 more days and I will be off it. My doctor never told me how far it extends. I don't think I have pancolitis. I suspect it is mostly left-sided. I am concerned that I will flare again once off the prednisone. I have started taking the boswellia/curcumin and am doing the enemas nightly. hopefully things will calm down. No blood for now but I made 4 trips to the bathroom already today and my bowels are pretty loose. My lower back and left hip are also hurting so this concerns me. I still have some rumbling. I am wondering if the enemas might be masking symptoms going on a bit higher. Sorry to write such a long response. I tend to be overly detail oriented, can't help myself...

F/49