HealingWell
Search Close Search
☰

I'm a mess. I need info.

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/28/2010 1:09 AM (GMT 0)
Nine years ago I quit smoking and within a year got UC. It was controlled by 8 400mg pills of Asacol aday. Then I maintained remission for 7 years with 8 Asacol per day. Last summer my GI guy decided I didn't need it anymore and 6 months the UC came roaring back and I spent most of December either in diapers (which I am allergic to) or washing out many pairs of panties each day. I had masses of blood and mucous. I've been trying to clear it up ever since and am no taking ten Asacol a day. I'm better but not great. I am supposed to go on my granddaughter's wedding cruise late in May. I'm worried about my smell and my frequent and uncontrolled poops! Any advice?

I've given up all fruits and veggies. Do any probiotics work? Does anything help? My doctor is not very communicative. Help!
Posted 4/28/2010 1:29 AM (GMT 0)
Hi Saralee.

I don't hang around here often, but I can tell you the folks on this board are supportive and full of knowledge. You have definitely come to the right place!

The most maddening thing about UC is that there is no one thing that works for everyone. I'm currently in remission - since I was officially diagnosed in 2007 I've been in a flare much more often than in remission, so I've totally been in the exact place you are. I take Asacol for maintenance and Rowasa enemas when things get rough. For me, all food is irritating when I'm in a flare, but things are a little easier when I follow a low-residue diet. I also went all-liquid for 2 days in desperation once, and that threw me into remission.

I think the first thing I would do in your situation is find a new GI doctor. Mine is good and has made all the difference. Yours, I wonder about. shocked

Well, I know more people will be by leaving comments with great advice! But welcome. You are far from alone here! Hang in.

Leslie
Posted 4/28/2010 1:47 AM (GMT 0)
Why your doc took you off Asacol I don't know. I feel bad for what's happened to you. Everyone has told me that maintenance meds, like diamonds, are forever.
Posted 4/28/2010 2:16 AM (GMT 0)
Hi Saralee!

I can only speak for myself and probiotics do work for keeping the gas and smell down. As far as controlling flares it hasn't seemed to be effective. Try to stay away from "MSG" like you'd find in soups, preservatives, and chinese foods, I find this really gets me going.
More info here on what to avoid, might be helpful while on that cruise: http://www.msgtruth.org/whywe.htm


~AA

Diagnosed Sep 2008
Prednisone positive outcomes when on it (currently - Apr 2010 - on 40 mg/day)
Florastor Probiotic 250 mg 2x/day (500 mg total)
Calcium Plus D 600mg 2x/day (1200 mg total)
Lliada Failed after 6 mo.
Remicade failed after 6 mo.
Awaiting to start Humira Injections
Posted 4/28/2010 2:24 AM (GMT 0)
Saralee,
I'd look for a new GI or at least approach your current one about getting on some other meds. There are options that it sounds like you haven't yet tried. Predisone works well for some and may get you back into remission, but be careful with it as the side effects can be brutal. Rectal meds such as Rowasa or hydrocortisone could do the trick. Entocort works for some. From there it's typically immuno-suppressants such as Imuran and MP6. Then come the biologics i.e. Remicade and Humira. Probiotics help, but are not a cure all. In any case it sounds like you need to talk to a GI about what to do next. Stay on the Asacol and good luck!
Posted 4/28/2010 7:09 AM (GMT 0)
Hi..welcome to the forum.

You need to get back on the Asacol and ask the doc for rectal meds as well.

You should also get a colonoscopy set up soon if you haven't had one in the last 3 years or more.

It's great you did well for 7 years....

quincy
Posted 4/28/2010 12:27 PM (GMT 0)
Hi - Gosh, sorry for your troubles!!
You're doing ten Asacol a day now....? You might be able to take a few more than that; 12 seems to be the general max dose, though I take more than that and have for years.
Also, as Quincy said, Rowasa enemas would be good - hit it from both ends, and that might really help your improvement move along faster.
I am one who has found probiotics to be a great help. There are a lot of them out there, and different ones seem to work better for different people - so experimentation seems to be the way to find one that helps you. My son's GI has a great story about a girl who wouldn't respond to any meds - but was brought into remission by probiotics!
I also swear by fiber, but there are some that don't... again, you need to see what works for you.
Posted 4/28/2010 1:27 PM (GMT 0)
Saralee:

I agree with the above 2-3 posts.  I would first switch your GI doc.  Second I would get a colonscopy to see the current stage and third I would consider some rectal enemas or foam that will help and take away that urgency and immediate poops.  When one with UC soils themselves, they have lost control.  Usually it's the rectum that inflammed and hence the sudden urgency and thus the soiled clothes.  In closing new GI, second get a colonscopy stat, third try treating from the bottom too and fourth consider some probiotics.

MyUC

Posted 4/28/2010 4:03 PM (GMT 0)
Thank you so much, everyone, for responding to my yelps. I made a mistake in my original post, 4 Asacol a day kept me in remission and I'm now on 8 a day. I have an appt with a new GI tomorrow and will see how that goes. Another question: why are doctors so reluctant to prescribe the pills for colonoscopies? I have had five cols so far and throw up with the liquid stuff, but can swallow the pills - Osmoprep, I think (basically salt pills) with no trouble. Can't find anyone other than my current GI who will use them.
Posted 4/28/2010 4:40 PM (GMT 0)
Saralee -
I can't answer your question about the pills for prep; none of my docs have used them. I did Miralax last time and it wasn't so bad - the stuff has absolutely no flavor.

Re. your comment about "taking an enema" - I remember when my mother used to help her sister with "taking an enemas" and it involved a big red hot water bottle and all sorts of unpleasantness. These medicinal enemas are very, very different: a small bottle with soothing liquid. I lie on my left side (so my descending colon is on the bottom, so gravity can help) and administer it at bedtime - the medicine goes right onto the inflamed places, and helps quite a lot.
To again quote (or at least paraphrase) Dr. A, a HW regular: "if my foot was on fire, I could pour water directly on my foot, or I could pour it on my head and wait for the cooling effect to reach my foot...."
So many of us have found, once we've gotten past the idea of putting something up our butts, that these enema meds are the quickest way to feel better soon. The trick is to think about them in a new way than we all used to when thinking about "enema."

Good luck with the new GI, and let us know how it goes!
Posted 4/28/2010 5:33 PM (GMT 0)
Oh you said "now" taking Asacol, not "no" taking asacol. sorry I misread the typo
Posted 4/29/2010 5:31 AM (GMT 0)
I think that you do need to get back on Asacol. Asacol alone will probably not ease your symptoms though if you are already having a lot of symptoms. You need to get a scope to see how bad the inflammation is if you haven't had one in a whille. I would suggest rectal meds.
I also take slippery elm everyday and it has helped considerably since i started taking it.I mix it with hot milk and drink it. After two days of doing this my bleeding and pain eased, slippery elm is very effective at easing my symptoms. Here is a link for more info on it http://ibdcrohns.about.com/od/altmedcrohns/p/slipperyelm.htm

Hope you feel better soon
Marty
Posted 4/29/2010 5:36 AM (GMT 0)
If your doctor isn't very helpful you need to get a new one urgently. One of the key things to living with a long term disease is having a doctor who will listen and respond accordingly. Sack your doctor and get a new one!
Marty
✚ New Topic ✚ Reply