www.incontinentsupport.org

I was just wondering if anyone has problems similar mine and what caused your problem. I haven't gotten a diagnosis from my doctor which is really frustrating. I starting having bowel accidents in bed about fours ago. They were infrequent at first, maybe once every couple of months. I dealt with them by getting a good mattress protector and kept extra bedding in my bedroom. This worked until about a year ago. My nighttime accidents became more frequent. Sometimes I might have upto three a week. What was frustrating was my problem would come and go. I could go as long as a month with no accidents and then I'd start having accidents again. Maybe only once a week maybe more. It was completely unpredictable. When my problem got worse about a year ago it affected my sleep and I was constantly tired. When I was only having accidents once every couple months, it wasn't to bad to shower and change my bedding even though I usually couldn't get back to sleep afterwards. I could handle it because it was so infrequent. Since I had been a bed wetter into my teens I had some experience with diapers (hence my screen name) When my problem became more frequent I started wearing diapers to bed so I could sleep. About 7 or 8 months ago I began having minor bowel accidents during the day. I was also having severe bouts of diarrhea which I chalked up my gastric bypass I had about 12 years ago. Initially my accidents were small enough my underwear usually contained it. They were as as random as my nighttime accidents. I controlled it with lots of imodium and strictly limiting my food intake. Eating seemed to make it worse and I'd often feel need to go right after eating and sometimes even mid meal. What I ate didn't matter. Even without eating I had many close calls where I nearly didn't make it to the bathroom alono with the minor accidents. I should have gone to my doctor then but I was too embarrassed and in denial. It took an accident in public that was blatantly obvious to force me to accept reality. Nothing like total public humiliation as motivation. I started wearing diapers during the day about five months ago and went to the doctor. I've had several accidents since that made me damn glad I had a diaper on. Some were small enough I could clean up and change and others were so bad I had to cancel my plans and return home to shower. As usual, there was no pattern and they occurred completely randomly. I've had several tests including an upper scope and colonoscopy. I've also submitted more blood than I thought my body contained and two stool samples. So far all my doctor has been able to tell me is my B 12 levels are low and I've begun taking a series of B 12 shots. The tests are on going. Since I never know when where or how bad my accidents are going to be, I never left the house undiapered except for work. Fear of discovery kept me from wearing protection were I needed it the most for a long time. It's been due several near misses that again forced me to accept reality. I began wearing diapers to work every day about two weeks ago. I used the toilet when I can make it but sometimes the need to go hits me and can't stop it. Sometimes I don't realize I need to go until after my bowel movement has already started, which by then it's obviously too late. It's worse when I have diarrhea, but occasionally happens with a firm stool. I go from diarrhea to constipation with little in between. This sounds like IBS to me but can IBS cause my symptoms? My doctor won't say anything until he's made a diagnosis and the lack of knowing what my problem is is maddening as is the unpredictability of my accidents. I now wear diapers 24/7 because leaving my house is like playing Russian Roulette, some days I'm fine and then bam, and my diaper is the only thing protecting my dignity. I never want to experiance the public humiliation I felt the day I accepted reality but I'm afraid I might have to wear diapers for rest of my life. The lack of knowing is the worst. Sometimes I fear my doctor has no idea. Has anyone experienced anything like this? Please let me know.

Hi, diapersagain, and welcome. I'm sorry that you have had an extremely rough time of it. I'm glad to hear that you have been working with a doctor and that you had a colonoscopy. Since you had your bypass 12 years ago, and you've only been having bowel accidents for 4 years, I would think that the bypass is likely not related to your symptoms. Does your doctor know about your bypass?

Just a thought: Are you diabetic and taking Metformin? I have a history of Ulcerative Colitis, and when I was diagnosed with Type II diabetes 3.5 years ago, my PCP prescribed regular Metformin. He ramped up the dosage slowly, and when I reached a therapeutic dose, I began to have severe and urgent bowel incontinence episodes. I work from home and all of my accidents happened there, until one weekend when my husband and I went out of town with friends and I had a bowel accident in public in their presence. It wasn't like I pooped my pants in the middle of LAX, but it was humiliating enough, thanks, and soon after that I had a serious talk with my PCP. He apologized (too little, too late) and switched my Metformin to an extended-release formula. It's been working well for me for 3 years (why didn't that happen at the get-go, since he knew of my history with IBD??!). My husband also takes regular Metformin and he has bowel issues as well. He doesn't have accidents, but he has chronic and frequent diarrhea. He claims that drinking coffee exacerbates the effects of the Metformin, but we've tried decaf coffee and green tea, but he still has problems.

You asked if IBS can cause your symptoms, and from personal experience, I think they can. When I'm having a flare, I also sometimes have to run to the bathroom during or right after a meal.

Wetters

Thanks for responding I very much appreciate it. Yes my doctor knows about my bypass. I realize he can't do his job without all the information so despite how embarrassing it is sometimes I make sure I answer his question without holding back. I do have a history a diabetes. Before my bypass, I was taking several meds for it including metformin. I did have minor diarrhea when I first starting taking it but it went away after a few months. My diabetes gradually became worse even with pills and I was to the point were I was going to have to start insulin shots. The major reason I chose the bypass was to hopefully loose enough weight to would bring my diabetes under control to avoid insulin. I weighed over 340 pounds before the bypass (yeah I was a fat one). After the bypass I got down to about 180 pounds and was able to stop taking all my diabetes meds. My doctor warned me I still needed to monitor my blood sugars regularly despite this, but I'm ashamed to say I got lax and quit after awhile. I have started taking metformin about 18 months ago, but this is long after my symptoms started. My doctor and I discussed the metformin and given the circumstances, doesn't think it's the cause although it might contribute to the problem. What I'm afraid of diabetic neuropothy. I wonder how bad my diabetes became when I stupidity stopped monitoring it. My doctor agreed that was one possibility. Is there a way to test for it? My doctor didn't mention testing for it and I didn't think to ask at the time. I know I'm lucky as many people deal with much worse medical conditions and endure far worse things than diapers. I'm at least lucky in that my condition came about gradually and I had time to adjust. I can learn to live with this even if it means diapers for life. It's not knowing if it is temporary or permanent that is hard to deal with. Thank you for responding, I greatly appreciate any help I can get.

First of all, let me express my sympathy for your ongoing condition. I cannot imagine what you must be going through as bowel problems are a very difficult thing to deal with. Furthermore, not having a diagnosis is extremely frustrating. I do not have bowel issues but not having a diagnosis for my bladder issues is extremely tough to deal with as well. My problems began out of the blue about 10 months ago now, with frequent urination which just got worse and worse. While I was dealing with all that I began to have small accidents after every time I went to the bathroom (small leaks and dribbles). Gradually the urinary frequency climbed from a dozen or so times a day to 20 to 25 times a day, all the while the accidents persisted and I was required to wear pads, pull-ups, and diapers. Eventually requiring the use of Foley catheters to keep me out of the bathroom and allow me to ride in the car for more than 45 minutes to an hour. As of right now I am just living with the conditions as I have been to 10 doctors now and nobody is able to find an answer for why these symptoms are persisting. I live life with protection 24/7 and foley catheters when I am home from work and the symptoms are really bad. These forums are a lifesaver because I am able to vent with people who understand what I am going through. Though my wife is an ER nurse and thus a medical professional, she still has only a vague understanding of what I go through daily. Hang in there, we're here for you!!

Many thanks for the kind words and advice. I wonder how people never get a diagnosis for their condition.

I often wonder the same thing. I also can't help but wonder how many people get just some BS diagnosis thrown their way just to get them out of the office because the doctors don't think its worth their time? When I first got see, I was told it was OAB. Later I was told it was also prostatitis. OAB is such a general diagnosis but it doesn't tell you "why" your bladder is acting up.
I think most of it is guess work in a white coat.

I think, to be fair, diagnosis is very much a matter of elimination of possible bad things - cancer etc - and then, if nothing shows up it is a matter of having to live with it. Of course, OAB, as an example, is a description of symptoms rather than a cause which would be MS or some neurological condition to all sort of problems surround the muscles and sphincters. Frankly, sometimes, a cause cannot be found - look at the people who grown up with what is called Primary Enuresis and who can't have any treatment as there is not a know cause to try and treat.

I think if there is nothing seriously wrong, we just have to learn to live with our problems and, having found a suitable method of containment, get on with life. If the doctor can't find anything that can be treated it is best to get on with life - we don't get much of it so we might as well enjoy what we get!

To the OP, do you have chronic or recurring abdominal pain or discomfort? That, in addition to changes in bowel frequency or the appearance/consistency of bowel movements is characteristic of IBS according to the current international diagnostic standard which is known as the Rome III criteria. Functional GI experts (IBS is the most common functional GI disorder) are literally meeting in Rome, Italy right now and working on Rome IV, which is the next iteration expected to be released in a couple of years. It's very common for the pain or discomfort to accompany the changes in bowel habits and to improve after the bowel movement, though not always. It's relatively uncommon among people with IBS to have bowel incontinence at night, especially as a first symptom, but it is very characteristic for things to be very unpredictable, and for people to have urgency, including mid-meal. It has to do with the triggering of the gastrocolic reflex when one eats.

If it is IBS (and you should get a physician diagnosis, as it could be other things also, but if your physician does not know what the Rome criteria are, you need a new physician Some iteration of the Rome criteria has been in existence for 20+ years. The Rome criteria are considered by international IBS experts to be 98% accurate. IBS is no longer a diagnosis of exclusion!) you should understand that all tests will be normal. This does not mean that nothing is wrong. It just means that IBS is very complex and there are no usable tests yet. As of now, IBS is considered a functional disorder, which means there is no visible structural damage (unlike colitis for example, which is an inflammatory bowel disease), metabolic problem shown in blood tests, etc. It is a disorder of how the brain and the gut communicate. Research over the years has shown abnormalities in how the brain processes pain, in gut motility, transport and signaling of neurotransmitters, including serotonin and many other factors being studied including genetic influences, gut microflora, etc. IBS can be mild, moderate, severe or very severe, intermittent or constant. Everybody is different and the relatively limited treatment/management interventions that work for one person will not necessarily work for another. There are a lot of different types of things to try, but it takes patience and time. Watch out for quacks and outdated information, as there is a lot out there.

I have had IBS for 7 years. With another person with IBS who has had IBS for 40+ years, I run scientific-evidence based website, blog and social media accounts for advocacy and awareness (We are not a business or charity.) We are known to many professionals in the field in several English speaking countries and communicate with several of them on an ongoing basis, so I can direct you or anyone else with IBS to good, up to date resources if needed. My sites, which Schoppy and the late JoeK gave me permission to post here in the past, are http://www.ibsimpact.com and http://ibsimpact.wordpress.com I can also suggest the International Foundation for Functional GI Disorders in the U.S. http://www.iffgd.org which is a not for profit organization, and the University of North Carolina Center for Functional GI and Motility Disorders in Chapel Hill, NC, USA, which is one of the world's foremost research centers for IBS, and one very committed to public, patient and professional education. Many others as well, but please get a physician diagnosis first.

Good luck.

Thank you all for the good information. I never realized IBS was such an involeded illness. I will look up the sites provided. I have a doctor I trust and he is running extensive tests. I'm trying not to second guess him as I'm no doctor, but I do appreciate the information and support. Thank you.

Rope_Wrench wrote:I often wonder the same thing. I also can't help but wonder how many people get just some BS diagnosis thrown their way just to get them out of the office because the doctors don't think its worth their time? When I first got see, I was told it was OAB. Later I was told it was also prostatitis. OAB is such a general diagnosis but it doesn't tell you "why" your bladder is acting up.
I think most of it is guess work in a white coat.

I have found this in my own bladder struggles to be SO true...i was frustrated when i was first dealing with this 4 years ago that every test they ran. they kept coming back with "we don't see a definitive cause" Since this has reocurred for a 3rd time, I am now content to just diaper up, and roll with the punches.. biofeedback helped..but it in no way guarntees a diaper free life, which really is the only thing i would consider a "success" and "cured" and worth my time pursuing.

Diapersagain, are your problems bowel only? If so, do you find that you still urinate in the toilet, or do you also, out of convienence use the diaper? The reason I ask is most, if not all diapers suitable for bowel incontinence make it difficult to take down the diaper easily in order to use the bathroom. If you find this to be the case for you, and still want to use the toilet to pee.. may i suggest a brief like attends Breathable Extra Absorbent, or Abena Delta Form? Both have velcro tape tabs that can be infinetly refasteneted and the Delta Form has leak guards that would be useful for bowel containment. Another product to try is the cloth backed version of NorthshoreCare's brief..i think its Called the Air Plus supreme.. It also has hook and loop velcro tabs as well as TALL leak guards that, again, would provide ideal containment. I wish all the best in finding a diagnosis...that way you can make peace with your situation, if not get cured outright..

Peace out!

Rob