Bowel incontinence

Boy, I had no idea so many people have what I have. I’m 76, female. I’ve had bowel incontinence for over 10 years. It’s become daily for the last 4-5 years. I’ve discovered some things along the way: products can help a lot. I’ve found Northshore Supply dot com which has been a Godsend for all kinds of very high quality incontinence products. I’ve just ordered a bowel deodorant called Devrom. I’ll let you know if it works; I’m hopeful because it’s been around for 50 years. Another learning is be prepared. I carry several products in a separate bag so I’m prepared. Although I’ve had several really bad explosions in public places during the last 3 years. People can be very kind and supportive. I’m going to continue to read this blog or whatever it’s called because hearing others experiences calms me down. But.. I. Wish none of us had to go through it.

Are you taking Creon?
I ask because with E P I and needing to take Creon, it is a constant struggle for me to manage bowel "behavior." It becomes difficult-to-impossible to tell whether it's the underlying E P I (in my case believed to be the result as a pancreatic adenocarcinoma which Chemotherapy failed to reduce in size). Or whether I just don't have the d'd Creon dosage right. This situation leads to what seems like a never-ending cycle of anxiety and stress, neither of which are helpful in calming the watery "explosions."

Maybe some of you may find these 2 products helpful. I purchase them via Amazon.
For diarrhea - BHI DIARRHEA (Great to use if you feel something coming on. I keep them in my car and in my pocket when I go out.)
For gas -GASALIA by BOIRON (Great to avoid embarrassment)
The 3 traditional docs I see knew nothing about these homeopathic products which I found via consulting with a biochemist.

Of course, you should still talk to your doctor but I've had absolutely no side effects from them. They are very light and don't clog you up. I absorb them sublingually (under my tongue) and take up to the maximum recommended dosage when I am getting into serious trouble.

I've read just about every book in our local library about digestion and frequently refer to the internet (e.g., Mayo website, National Institute of Health, etc.)

My bowel incontinence has taken a toll on my life as many of you have posted here. I've kept a detailed food/mood diary for years. I don't have alot of fat in my diet. (I also have random bouts of intestinal blockages if I have too much fiber.)

Right now, I am experimenting with CREON under the direction of my nutritional MD and my gastroenterologist (even though I don't have EPI).

My vitamin levels for fat soluble vitamins are fine.

My stool test for fat malabsorption was "normal" with an "increase" due to "small bowel disorder". I intend to write to both my nutritional doctor and my gastroenterologist to find out why they did not talk to me about the "small bowel disorder" notation.

Its been one week on CREON (36,000 strength for lipase) and there have been no improvements. In fact, I think the CREON has made matters worse with 3 urgent full BMS.

I am told by the nutritional MD that if the CREON doesn't help, my next step should be to take cholestyramine which she already prescribed for bile acid malabsorption.

I am on linzess for about 3 or 4 months now. I was using miralax before and taking double the recommended dose per day. But that was per doctors orders. I was told to take a single dose daily and if I go a day with no poop to take a double dose the next night and if I still do not go to take a triple dose the next night and so on. Finally I was just taking a double dose daily to keep things moving but it was often the firmness of pudding. My big issues is I have Gastroparesis very badly and IBS mostly C. So when my colon stops moving even for a few hours my stomach stops to and often it will take days or even weeks to get everything to calm down and move again. I have a gastric pace maker that helped my Stomach to empty better and I can not say enough good about it. But I was having a lot of accidents day and night so we are trying linezz. I am taking it in the Evening and I am sometimes having accidents at night but overall the urge incontinence i was having got better during the day. I can handle it at night I sleep in a diaper so no big mess and I shower the next morning anyway. So the large urge accidents I was having has slowed. But The minor anal leakage is much much worse with it. I still wear a diaper 24/7 because I do not trust a fart and I have ladder urge and interstitial cystitis going on 30 plus years but all the bowel issues is the last 5 or 6 years since getting the GP disease. So I gave up on pads and pull ups and I wear something I can trust but OMG they are 3 bucks a piece for a diaper. I am to the point I do not give a shit what other think and I came to the conclusion no one cares what type of underwear I have on. But the constant leakage I have now since starting the linezz even on a lower dosage at first it is like a mucus my bowel discharges and it causes inflammation and swelling and burning that flare up the hemorrhoids even more. So My doctor prescribed a new med that works a lot like linzess but different. She told me it has shown to help with gastric emptying to which is what GP is and there are very few meds for GP and none are cheap. So I went to fill it and I guess it makes linzess look like pocket change and my insurance refuses to buy it at $1600 a month. So we are trying to appeal it but it does not look good. The New med is called Motegrity. You might ask your GI about it and maybe your insurance will cover it. She said it has far less negative side effects over linzess. I am on a medicare Advantage plan and my linzess is only $4.15 my cost and I have the best plan Humana has to offer. The Gold Choice plus. I am 47 and had to retire and take my SS-disability because of my joint and gut problems. So I feel for what you are going through. For sure don't give up on living. If you have to wear a quality diaper and just live life. You can take a med that stops the odor if you do have an accident in public. I like the NorthShore diapers best and they do offer free trials if you go to their webpage.

@jvmiller95
Regarding Motegrity- I have bout it online from a Canadian pharmacy. I even decided to try the generic- it works just as well. The price is so much better.
I just started looking at Certified Canadian pharmacies and compared prices.

Hi am in Canada and hadnt heard of Motegrity so will check internet. I have similar symptoms and its a life changer for sure. Mine I think from radiation damage to pelvis was way back in 1985 cancer of cervix stage 2 but hadnt had bowel or bladder problems before.. so its been a long time... starting off with bouts of diarrhea after eating salads, fruit etc. Rushing to bathroom as we all have to do... and just got a bit worse every year and also cutting down on fruit and vegetables and anything "tasty" or spicy is out! Then spouse got anal cancer. Good thing we have two toilets in the house. Mine got worse 2018 after about 6 antibiotics in as many months for UTI's and then got C.Diff... when I didnt think could get worse and was horrible after over 100 pills but thats another story. After CDiff got bowel incontinence and when someone referred to consistency of stools I agree - pudding - which makes clean up so march more difficult. And I also get frequence UTI's no matter how careful I am, shower every morning etc. I can pass up to 10 times and a mess each time, thing is even a small amount is smelly, yucky and as you say, having to change clothing and I have a stack of only for bum facecloths and keep a bowl for them and wash with bleach... because can go through a roll of toilet paper in a day me and spouse! I take Imodium - which is Loperamide - used to pay for but now under prescription so almost no cost but if take a bit too much then only "rabbit pellets" come out - and have pressure - this can happen through night as is said above: I dont wear "diapers" except if say going to hospital for something else or dentist - but truthfully they do not sop up mushy stools and then would be sitting in it. My worry at 80 is ending up in a nursing home setting and no one is going to clean me up at 3am or 6 times a day!! Sympathies to everyone with this! No cure for me.

Oops reading too quickly, thought Montegrity is for diarrhea.... wrong problem, sorry for my confusion. Another day, another shower clean clothing and then what's that odour..... another wash, more clean clothing and washing bedspread as had sat on end of bed - hadnt felt a thing.... no wonder don't go out very often.... been years but still haven't found the magic solution, good luck to everyone for their bowel issues!

I don’t know if this will help anyone but I thought I’d throw it out there. I’ve struggled with the whole constipation/diarrhea now for over four years. Tried every med and even combined some. Motegrity did help for a little while, then not. I soon discovered that when I had “accidents” it wasn’t really diarrhea but overflow diarrhea. I would cut back on my constipation meds, which only made the problem worse. I finally did find a combination that works for ME. Mestinon, which is typically prescribed for myasthenia gravis but also acts as a motility agent, and Miralax. The combo has been life-changing for me, and, also cheap!

I'm 76 and have mild bowel incontinence and IBS. Incontinence runs in phases. Days when I empty completely, I feel fairly confident that I can run errands without protection. Other times, I wear the small butterfly pads. Exercise and gravity are more likely to result in incontinences. I had radiation for endometrial cancer 26 yrs. ago, and I believe that caused the problem. I saw a Dr. at Johns Hopkins for my IBS, and when she heard about the incontinence she sent me for a test to test muscles and nerves. (I forget the name of it). At the end you have to poop out a balloon within 2 minutes. I could not. They recommended physical therapy for pelvic floor. The therapy did help. Actually the therapist said I had a retroceale ( a pocket) in the rectum which pushed into the vagina. This is a lot of the problem. The exercises helped some, and at least she actually examined me physically, and I have some idea what is happening. The idea is to keep the pocket from expanding. I also find that when I am constipated, yet feel I need to go more, I will get down on all fours until the urge to go sends me up to the toilet (squatty potty style of course). Mine seems like a mechanical problem. I am on gluten free, dairy free, no alcohol, no caffeine, low fod map diet. Taking fish oil has been a huge help also to lubricate stool expulsion.

I had a small nodule in anal area and had to have that removed several years ago. Now I have mild bowel incontinence because of the surgery. Maybe physical therapy would help with my problem.