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Posted 1/31/2012 5:37 PM (GMT 0)
I've been in a flare for awhile, which is improving, but when I have to go to the bathroom I literally can only hold it for only a minute or two. This is so difficult especially when I'm working! I've had a couple of bad accidents a week the past few weeks. I use pads and even bought some disposable underwear, but this is so gross. Any suggestions?
Posted 1/31/2012 5:40 PM (GMT 0)
jsummer, the only way to stop having accidents is to get the inflammation under control. When you're inflamed and you put anything against the area, you will develop the urge. Are you using rectal medication?
Posted 1/31/2012 5:53 PM (GMT 0)
Yes, I'm using cortisone suppositories and the cortisone foam. I'm allergic to mesalamine in all forms so Ive been told those are my only options, except for cortisone enemas, which I've also tried.
Posted 1/31/2012 6:01 PM (GMT 0)
jsummer, I was in the exact same spot from mid-November through the first week of January. I tried mesalamine enemas and cortisone suppositories etc etc etc and finally the only thing that worked -- and it worked immediately -- was oral prednisone.

I hate prednisone and I get all the side effects and I really wanted to avoid it this time but I just can't complain. Five accidents (I only call them "accidents" if they involve serious clean up afterwards) in just a few weeks was way more than I could handle. I was depressed, crying a lot, feeling frustrated and hopeless. No matter what prednisone does to my moods, not having accidents cheered me up so much that the prednisone is worth it to me.

I was able to start tapering a week after starting the prednisone, and two weeks later I was back at my fitness bootcamp.
Posted 1/31/2012 6:04 PM (GMT 0)
Prednisone can be great if you can get on and off of it quickly. It does the trick, that's for sure. I would be scared to go on it again after all of the sid effects I suffered but the main reason I had such terrible side effects was due to being on it for too long & not being able to taper off.

Are you on an immunosupressant? What do you use for maintenance of your UC when you're in remission?

I am happy you're feeling good janey!!

Posted 1/31/2012 6:15 PM (GMT 0)
I was actually on prednisone for almost 2 months and it only made things worse! I had more accidents on it than off it! As I said,  my symptoms overall seem to be improving except for this.
Posted 1/31/2012 6:31 PM (GMT 0)
jsummer7, canasa is a mesalamine. If you are allergic to the oral med, perhaps you should not be using this suppository.
Posted 1/31/2012 6:36 PM (GMT 0)
I just updated my signature with the right meds. I've been off canasa for over a year. I had a colonoscopy in Dec. and was told I'm primarily dealing with rectal inflammation- proc***, which is supposedly the most difficult to treat, though medically the least serious. We discussed remicade, etc. but since the inflammation is almost exclusively in the lower area it seemed a bit extreme. I also have very bad health insurance and it would cost me over $1,000 pre treatment!
Posted 1/31/2012 7:41 PM (GMT 0)
It's such a cruel nature of this disease...it's not bad enough we have frequent BM's (and often with D and all the other nasty stuff that goes with it) but add the incontinence on top of it is just cruel!

Have you tried using fibre supplements daily and indefinitely (my GI suggested this to me 6ish yrs ago and it's been very helpful) I still have urgency issues and if I didn't make it to the toilet in time it would be in my pants too but it's definitely helped in other ways, I don't have to "go" as frequently as before I started taking them, they've firmed stools up for me and helped cut excessive mucous out. Fibre may really help your incontinence issues so it's worth a shot.
Posted 1/31/2012 8:02 PM (GMT 0)
pf4 that's a good point -- jsummer, I think that a major factor for me going from pure D to formed stool was adding Florastor and psyllium seed powder (I was already taking psyllium husk caps) to my daily supplements.
Posted 1/31/2012 8:24 PM (GMT 0)
How much fish oil are you using? Sometimes that can cause a bit more urgency regarding the slipperiness.

I definitely agree with the fibre supplements, although you'll have to find what can agree with you.

Are your symptoms more formed stool? and how often are you going?  Are the accidents with more mucous or just formed stool?


q

Posted 1/31/2012 8:34 PM (GMT 0)
Here's something to try. It can't do you any harm and actually might help with the urgency. Years ago a former land-lady suggested drinking the water from boiled rice. I'd had what I now suspect might have been my first episode of ulcerative colitis a few weeks prior to her making this suggestion. Cooked rice can be mildly constipating and may slow things down sufficiently for you to give you additional time. And its not going to have anything like the force of a anti-diarrheal, which would be a bad choice in any case. If you're going to try this, I'd suggest cooking a whole grain rice, perhaps brown basmati. If it doesn't help you, at least you can consider it an improvement on being poked in the eye with a sharp stick. :-)
Posted 1/31/2012 9:02 PM (GMT 0)
Thanks everyone for all your suggestions! It really helps to communicate with people who understand!
Posted 1/31/2012 9:09 PM (GMT 0)
and answers to the questions I asked you?

q
Posted 1/31/2012 9:24 PM (GMT 0)
Hi Jsummer7
You might think about trying slippery elm bark (nature's mesalamine). There is quite a bit of info about it on the website cureforulcerativecolitis.com

I have been using it for only a short time and have already experienced a reduction in inflammation. I take as few drugs as possible and look for natural ways to deal with UC symptoms. You can purchase it in various forms but the powder seems to be the best because it is easily mixed in a little water with probiotics and honey. I drink it after dinner and sometimes in the morning. It coats the digestive tract. You should not take other meds for 2 hours before or after because it will interfere with absorbtion.
There are quite a few posts about slippery elm in this forum. You can search on it in the box under the tab in the upper right Join Healingwell.

Hope this is helpful :-)
Posted 1/31/2012 9:30 PM (GMT 0)
http://cureforulcerativecolitis.com/products-used-in-the-alternative-protocol

Here is the actual location on the website where you will find info on slippery elm.
Posted 2/1/2012 6:35 AM (GMT 0)
Have you tried a low-residue diet for a while? Plain boiled white rice, natural applesauce, scrambled eggs, white toast, skinless chicken or fish, no caffeine or carbonated drinks. That might help to calm your rectum 'til the inflammation comes under control. In the meantime, wear the disposables; they really can prevent an ungodly mess when you're out & about. / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)
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