Just an inconvenience? Incontinence t

I have had UC since I was 23, for 23 years. I have had some bad flares, but have been on Immuran for more than 10 years, flares settled down. The problem is, after all those years with the disease, when I need to make poop, I have no control... It must happen immediately or I will lose it in my pants. Since my overall health has been ok, it would seem silly to operate. Nowadays, every morning before work I use 4-5 suppositories to try and get everything out of my bowel before I start driving, and I take 6 it 7 immodium to keep me stopped up during the work day.

Does anyone know of something that might allow me to be more continent? The problem seems completely confined to lower colon and rectum, but the worry is disrupting my whole life and limiting my participation in many activities.

Thanks!

Have you ever used rectal meds, Maureen? Either mesalamine-based or steroid-based? Do scopes show inflammation in your lower colon/rectum?

Thanks, everyone. It is good to know I'm not alone because it often feels that way with this stuff. I do take caffeine. Fruit girl, I have used steroid enemas a long time ago; different doctor, and they really helped. I have an appt with my doctor on the 12th and am going to talk this out and ask for those..this doctor doesn't seem to want to change anything if I am not flaring, but I am only 56 and I don't want to be a shut in because of this.
I saw kegels recommended somewhere but don't have much hope; it's not lack of strength it is pain that is causing incontinence. I have not had a scope in a while, bet I have one next month.

That is a good point, I think the doctors attitude is rubbing off on me. I can eat, not losing weight, etc, but it certainly is psyching me out. I used to have flares where I basically semi-starved myself to be able to keep working. I am taking probiotics, but have made no diet changes yet.

Are you talking about suppositories that get things moving along faster? I wonder if the Imuran is even doing anything at all. It would be theoretically possible to be in your same condition with no Imuran, given the other things you are doing.

Maureen57, I am a health advocate for Butterfly Health and wanted to reach out to you to see if I can help. Your concern is one that I am familiar with, and we know there is a great unmet need in this area. Our product is brand new to the market called Butterfly Body Liners and is intended for light to moderate accidental bowel leakage (ABL). We have heard from many customers that this product helps them get back to doing the things they love without having to worry about episodes of leakage. You can find the product at www.walmart.com/butterfly. Also, I would like to point you towards ABLinfo.org as well. It is the only website focused on this issue with tips to help to manage ABL. I realize ABL affects each person differently and it varies person to person, but I hope this helpful for you.

Thanks for all suggestions! Unfortunately, with me too it is not leakage. Whatever is in me, all comes out. That is why those hints to keep a change of clothes at work do not help. If it happens to me I need a bath. I hate it but have been living with it a long time.

Maureen57 said...
I have had UC since I was 23, for 23 years. I have had some bad flares, but have been on Immuran for more than 10 years, flares settled down. The problem is, after all those years with the disease, when I need to make poop, I have no control... It must happen immediately or I will lose it in my pants. Since my overall health has been ok, it would seem silly to operate. Nowadays, every morning before work I use 4-5 suppositories to try and get everything out of my bowel before I start driving, and I take 6 it 7 immodium to keep me stopped up during the work day.

Does anyone know of something that might allow me to be more continent? The problem seems completely confined to lower colon and rectum, but the worry is disrupting my whole life and limiting my participation in many activities.

Thanks!

Is your UC under control? Are you in remission? If so, then I believe what you describe is entirely psychological, the product of years and years of UC pain and desperation. It takes a long time for your mind to adapt. So, while every urge may feel desperate, but is it physically desperate or just in your mind? I think this is a very important point.