Sooo embarresing! Have to ask... "Bowel Incontinence" REALLY URGENT, NEED ADVICE PLEASE )

First off, never, ever be embarrassed to ask any question concerning GI issues, okay? Most of us on this forum have read everything you could possibly imagine! People describe their output during bowel preps, just for one example. In detail!

So I for one am certainly not turned off by your topic. Far from it. Living as I do, with chronic severe at times IBS-like symptoms, nothing bothers me now. I only draw the line between discussing bowel issues during meals! That's the only time I feel uncomfortable discussing topics like this with anyone......

As for what can I advise. Well I am not an expert, just a sufferer like you, so hopefully someone with medical knowledge and credentials will reply to your topic.

I will suggest that you begin a food diary. Just record every single thing you eat each day, along with your beverages and if you take meds, were sick with another health condition at the time (the flu for example or had your period). The GI tract is very, very touchy. And stress can really throw it out of whack too.

One more suggestion, for added protection, you can always wear Stayfree Ultra Thin XL or overnight Maxi Pads. They offer protection in the very back of your underwear for minor drips, until you can get to the restroom. Like you, I don't want to wear depends either (I'm much older than you though, 57).

I'll open up the discussion for others to chime in now - I hope you find some answers. But in the meantime, try and form a pattern with a food diary. You may find that something as simple as dairy products induce D.

Please don't be embarrassed to talk about it here. I know that it can be a humiliating and embarassing occurrence and I've been through it more times than I care to count.

I've had so many accidents that no one knows. I've had accidents in my car, in my backyard, in my house - I have NO notice, maybe 2 seconds sometimes, maybe! Many times it's like a full blown 'going to the bathroom'. No control whatsoever. It's truly awful. I have severe Fibro with constant pain and I would say that this IBS-D is often worse to deal with.
We recently stayed in a motel because we had to - I walked out the door to my car that was right outside our room. By the time I unlocked my car to get something out, I had had an accident. Of course, no washer or dryer, so I had to throw out my clothes, in tears over the whole thing. So sick of it.

I had IBS-C many years ago, although painful, it is much easier to deal with. It turned to IBS -D about 9 yrs ago. I would have an accident in the middle of the night. God forbid, you have to pass gas - no way, you never know what it going to happen!!!

about a year later, I was put on narcotics for my pain. The wonderful side effect was that they constipate most people, for me, they made me normal!! It didn't surprise my Dr. as he told me that he had several people who had IBS -D that they prescribed a small amount of codeine for.

Well last year, all hell (or other I should say) broke loose. The diarrhea was back with a vengeance. I was/am afraid to go out on the rare days that I can get out because of my Fibro. It got so bad that I was going up to 30 times a day. After an ER visit, a trip to the gastro doc and a colonoscopy I was told it was just my IBS.

As I learned many years ago (28) it is a functional disorder - how our colons spasms. That is why if you have IBS - D you shouldn't lose weight. It's basically just how it comes out. (sorry, graphic). Every Dr. Ive spoken to has said it's not related to diet because it's not diarrhea in the normal sense that we think of diarrhea being. Now some foods CAN trigger episodes in people. I have yet to find out what triggers mine. I can eat things one day, be fine, then not another. I have tried prescription anti-diarrheals to no avail. But they do work for some people. The one thing that helped me was Pepto-Bismol. However I couldn't take it as I am allergic to it (yeah, big bummer. I'm allergic to aspirin)

Funny (not really) after talking to Gastro Doc who did colonoscopy, and asking what I should do, he said take Miralax. I said 'WAIT a minute, that's for constipation". "Oh yeah, you have diarrhea". My Gosh!

I think we should start a thread of embarassing stories so that we all know we're not alone. It's not a subject we want to talk about with just anyone, but sometimes we just need to be heard and understood. My poor husband has to get the details.

If you can take Pepto - try it and see if it does anything for you.
I'm sorry you're suffering so. ;(
Jacey

Hi-
I've been dealing with colitis for 10 years. This is what works for me. Probiotics and slippery elm powder. You will also see from my signature that I have given up lactose and most gluten foods.

You could try a good probiotic first and see what happens.
I take a heaping tsp. of slippery elm powder in a little water mixed with honey at night before bed. It soothes the digestive tract overnite. Also use it during the day if something upsets my stomach.
There is lots of info on cureforulcerativecolitis.com about natural supplements.

Marsky
Initially, I tried some capsules from a health food store. Saw some improvement.
Then I bought a 1 lb package of Starwest organic slippery elm powder which resulted in a big improvement.
It's for sale at the Starwest website and Vitacost and Amazon.

On the UC forum, InSoFla recommended mixing it with VSL#3
at night. I started out mixing my probiotics with it at night, too.

Hope this info is helpful.

kookla34,

I am very sorry that your GI did not give you any better meds or advice. GIs seem embarrassed by IBS. It is not something they can easily treat or even identify except through a process of elimination.

I hope the doctor that did your colonoscopy also did a few other tests such as:
1. A broad blood panel test including Vitamin D levels. Research is showing there is some sort of connection between low vitamin D levels and IBS. Vitamin D is not usually included in blood panel tests so your doctor has to specifically request it.
2. A fecal sample test for candida, protozoa, fecal pathogens, ova and parasites.
3. A hydrogen breath test to exclude fructose and lactose malabsorption and bacterial overgrowth. A surprising number of IBS cases turn out to be bacterial overgrowth and respond positively to appropriate treatment with Xifaxin (an antibiotic), moderate levels of soluble fiber, and a very low level antidepressant that stops intestinal spasming.
I was given the diagnosis IBS but what I probably have is Irritable Pouch Syndrome. I do not have a large bowel. What is working at the moment is the treatment for bacterial overgrowth plus oxycodone.

I have been using a phone app called GI Buddy to track diet, pain, exercise, meds, sleep, lifestyle, and stress levels. It puts together a report for my doctor that summarizes everything so that we can look for patterns that may contribute to bad IBS episodes.

The GI Buddy app is sponsored by the Crohn's and Colitis Foundation of America but it is useful for anyone with digestive problems. It is only available in North America. If you live outside that area you will need to go to Gibuddy.ibdetermined.org to download the desktop version.

For most people with IBS doing three days of clear liquids followed by an elimination diet while keeping a food journal helps identify triggers. Is this the diet he discussed or did he try to convince you to try the FODMAP diet? The FODMAP did nothing for me but others say it has been very helpful.

Over the years, I have had many diets suggested to me. I tried almost all of them. Finally, I did an elimination diet and figured out my food triggers. The reason I am in a diaper tonight is that I indulged in two of my trigger foods: Baklava and spiced apple cider. Each of us has very different trigger foods. The fastest way to identify yours is through an elimination diet. It does not take long and is not hard to do.

This is one of the best elimination diet directions I have found:
https://www.fammed.wisc.edu/sites/default/files//webfm-uploads/documents/outreach/im/handout_elimination_diet_patient.pdf

Having IBS on top of lupus must feel overwhelming. I have IBS on top if IBD and a few other auto-immune diseases. There are days that are very tough.

Sticking to the meds, avoiding trigger foods and forcing myself to exercise and socialize helps a lot. I hope you find a combination that helps!