IBS / bowel incontinence

Discussion in 'Fibromyalgia Main Forum' started by bakron, Apr 26, 2003.

  1. bakron

    bakron New Member

    I have been diagnosed with FMS for a little over 1 year now, but believe that I've had it for nearly 24 years (I'm 56). I have two questions:

    (1) For most of these years, I've had IBS, and it hasn't been uncommon for me to have episodes of "not making it" during the day. This has caused the greatest disruption in my life, especially during the earlier years. However, recently I've had more "flare ups" of the FMS with many symptoms that are fairly common witht the disease. One thing that has happened that is fairly new to me is that I've had bowel incontinence at night or while I sleep. Has anyone had this happen?

    In the past, My physician (GI) has placed me on Questran (Cholestyramine), but I would stop it after it caused the opposite effect, constipation. I tried cutting the Questran in half, but never could get just the right dose to do what I thought it should. My other physician (IM) has told me to use various OTC meds, but have had same effect.

    (2) Has anyone had a similar problem with bowel incontinence and / or periods of "not making it" and found a better solution? My husband wants me to get Depends. I told him I'd "rather die than wear diapers" (I know that sound odd, but this has been a real fear all these years).
  2. leokat

    leokat New Member

    Sadly yep I've had IBS for a good long time and yes I have had periods of 'not making it'. Fortunately, I have never had a problem at night.

    I don't really have any suggestions but I'm pretty sure my probs are diet related. I think wheat is a major factor. It might be worth a look at your own diet. There is some evidence to suggest that fod allergies might also be responsible for the muscle pain of FMS but that's really only a theory as yet.

    Digressing a bit for a moment - I think IBS might be partly responsible for my weight problems. I reckon that cos I get 'empty' after an IBS flare I tend to eat more. Also, I find refined foods seem to cause me less probs (wheat fibre is the worst)and I eat the wrong things. Having said that I'm pretty much addicted to carbohydrates and addiction to the foods we are alergic to is a real prob.

    I can understand your fears re: the diapers. (I have fears around using a wheelchair outdoors even though I know I'd be able to get out more), This DD seems to take away far too much of our dignity as it is. But hey who would have to know? Also, I know I'd find the task of having to clean up worse than having to take precautions.

    It might be worth you having a chat with your doc and seeing if s/he has any suggestions.

    One final thing IBS can also manifest as constipation in some people.

    I hope you manage to find a way of dealing with this.
    leo
  3. Fibromiester

    Fibromiester New Member

    and Welcome to the Board!
    As to this problem, my FM/+ started 25yrs ago,getting worse, and the IBS/diarrhea started several years ago, getting worse. At first I wore pads for fear of "mistakes", day and night. Then after waking up Screaming and Running to the Bathroom a couple of times! and the sheet-washing, my hubby suggested depends,too. I Finally agreed. I'm 53. I feel like a real flirty chick! But they help...
    As for med's...My Dr. put me on the Cholestyramine PACKETS ,--These you disolve in water or juice and down the hatch! DR. said to do it just before a meal because it would slow the food down more. I don't like it because it probably ABSORBS Nutrients, too(MY opinion only)-they say not to take it with your med's!
    I liked "Lomotil"- It does slow down bowel movement. Rx.(but don't get constipated)
    You can always take "Imodium" before bedtime(OTC)
    Are you allergic to dairy products?

    Have you been checked for wheat, or GLUTEN INTOLERANCE ? or Have you had an Upper GI, X-ray Dye Study done? or
    Have you been checked for Crohn's Disease?

    These 3 are BIGGY Tests that need to be ruled out for reasons for your diarrhea.
    Also, No Kidding- Get tested for Parasites, and Yeast. I have a Terrible Yeast problem from taking too many AntiBiotics in the past.

    Well, Sweety, I've wracked my tired ol' brain, and I need some coffee now(don't tell anyone) LOL

    'Hope I've Helped !

    Love,
    Fibromiester
  4. tansy

    tansy New Member

    You need to check out food intolerances, wheat and dairy can often cause this kind of problem.

    Also check out the possibility of candida and dysbiosis of the bowel (bad bacteria) both of which can be helped by probiotics. You can sometimes get a worsening of this problem when starting treatments for either of these but that settles down in time.

    Also get yourself checked out for parasites.

    I have similar problems with my bladder too. It can really get you down I know.

    Finding what's causing it should lessen how often it happens or hopefully make it go away all together.

    Cheers

    Tansy
  5. MildredAnn

    MildredAnn New Member

    Suggestions that might be helpful to you and the IBS problem:
    (1) See an allergist, be tested for Food allergies and start allergy test;
    (2) Once you know your food allergies eliminate those foods from your diet;
    (3) Take a calicum supplement 3 times a day (1 before each meal). Make certain the supplement does not have any, or very little magnesium in it. (it causes more IBS)
    (4) When in need, use Immodium or lomital.

    GOOD luck.
  6. bakron

    bakron New Member

    I’d like to thank everyone for his or her recommendations. I’ve been through allergy testing and am allergic to all animal dander, dust mites, and all molds. Luckily, I’ve never had allergies to food (not that I know of anyway). I’ve tried eliminating food items to see what results might be; however found little difference through the years. Most of these past years, it would come and go. I would avoid eating out to avoid having problems in social settings when I was younger, now I just look for the bathroom anywhere I go to make sure that I know where to go if needed.

    Yes, I’ve had GI series and I’ve had colonoscopies, and am probably due for one now (about every 2 years or so). Through the colonoscopy, the doctor has r/o many other physical problems through specimen and biopsies of polyps and tissue, etc. I will probably call my GI doc and schedule an appointment.

    I saw my IM doc today, and she encouraged me to continue to use the Imodium for the diarrhea.

    One of my friends at work suggested applesauce as it has pectin in it (the ingredient in Kaopectate). After her suggestion, I remembered that when I was small, my mother would give me an apple that she would cut in half and let sit until it turned brown when I had diarrhea. Another friend suggested “rice water” as an old remedy. In addition to going to the GI, I will try the digestive enzymes, applesauce, and rice water.

    Again, thanks to everyone for the information and support. Fibromiester, maybe I’ll try the Depends. I looked at them today and saw that they make them to look more like panties now.
  7. layinglow

    layinglow New Member

    Welcome to the board. I had IBS for a number of years, and also had not been able to reach the restroom in time.
    It is so limiting---I know your frustration.

    I have not had any symptoms in months now. I had a stool test which confirmed candida (yeast) overgrowth. As we age the gut flora becomes dysregulated. Also use of antibiotics disrupt our guts killing beneficial bacteria, allowing overgrowth of the less desireable.

    I began taking Berberine to kill the yeast (I could not tolerate the prescription antifungals Nystatin and Diflucan). At the same time I began with a good quality probiotic to replace the good flora. (the good probiotics require refrigeration in order to keep the little critters alive :) It takes a while for the gut to repair, but I have not had problems for months. Its so wonderful. The probiotics are continued daily.

    I have urinary incontinence and do wear diapers all the time. When it initially began a maxi pad sufficed...but for a couple of years I have been using diapers. It is hard at first I understand. Once you have been doing it awhile it just becomes mote, though. I promise--it will allow you much greater freedom, due to an increase in security that you won't face embarrassment. I suggest the newer diapers you mentioned that are more like panties, or I just use the large size toddler diapers. They stay remarkably in the correct place without fastening or pinning, and the generic are much cheaper. Simply open both ends wide after setting inside your panties, pull them up and do a little of adjusting...they do stay put. I originally tried the full size adult diapers...that fasten on the side. They are difficult to put on, by yourself...impossible to put on unless you are lying down, which makes changes not possible anywhere but home. They also crinkle like mad when you walk...what a giveaway!
    Thats why I opt for generic toddlers. I haven;t tried the adult pull ups but may, someday.

    Best wishes to you---bite the bullet--its really not that bad, its the worrying over it that is worse.
    LL
  8. dan0248

    dan0248 New Member

    I could have written, just about everyone these responses, well at least some, I have never tried using a diaper yet. My morning ritual is to take my hand full of drugs, with a cup of coffee, (only one). I take all my meds that the good doctors have given me and I also take two cheap anti diarrhea tablets, this is the poor Boy’s answer to Imodium AD. I take two of them every morning and every night, and may take another couple if I have problems during the day. And O yes it happens more then I care to share. I too have tried eliminating food items to see what results might be; and however found little difference through the years. Most of the time it wouldn’t brother me at home and you would get to thinking that you were safe there. And then it would hit you. You could be down stairs, or in the garage, laying in your bed, cutting your grass. It would come and go. I too have tried to avoid eating out several times to avoid having problems in these settings, and would only go if I could drive by self. Now I know where every bathroom is, where every tree, every dumpster, every place that could be used! I can crawl in bridge cannel and do my business; I can and have used a cardboard box in a Company truck up in a bucket of what you all can identify as a cherry picker! I can’t even begin to tell you how many pairs of underpants that I have had to cut off to be thrown away. I still carry another set of cloths with me every where I go. I too have IBS, and have had episodes of "not making it" during the day. This has caused me an enormous amount disruption in my life as well. Man you talk about shame and discomfort try this will working in the city, or better yet while you are taking your daughter to a school play. I’ve been there I could go on for pages but I have been scolded for taking up to much space or beating a topic to far into the ground, especially during the earlier years. However, recently I to have had more "flare ups" with this damn FM and the symptoms that accompany it.
    Just one more thing then I’ll get off. All of guys taking Cholestyramine hope this right spelling need to know that it will affect the other drugs you are taking. Make sure to talk with your doctors because Cholestyramine taken to close to the time you take your prescriptions will encapsulate these medicines and render those drugs useless.
    Maybe there will be no getting by with out diapers but I’ll fight it tooth and toenail to the very end.
  9. PatPalmer

    PatPalmer New Member

    It`s a common problem for CFS/FM sufferers.

    Have you had long term antibiotics in the past? If so, they would have wiped out all your good bacteria, leading to this problem, caused by Candida.

    Probiotics or Acidophilus and Digestive Enzymes taken just before each meal may help sort you out.

    You need medical advice on taking Nystatin and Diflucan to wipe it out over 10 days before taking the supplements above.

    If not the Antibiotics, then some kind of toxic has compromised your immune system, in which case you need a doctor who specialises in environmental medicine to screen you for common pesticides and heavy metals to identify the cause of your problem.

    Wishing you better health soon,

    Love Pat.
  10. Cycie

    Cycie New Member

    Hi, I too have suffered with this losing control at night for quite a while and it made me feel quite sick and sooooo low, I had all the tests for bowel complaints and they all came back negative..It stopped after a couple of years BUT
    I do still lose control in the daytime, I find if I go out on an empty stomach and eat while I am out I have to be within stepping distance of a toilet or I am done for, I was out the other day selling raffle tickets for the support group and this happened and I only just made it.
    How embarrassing. Darlin I know very well how you feel, but as for answers I don't have any, either.
    Take Care and here's a big hug 4 u...... Cycie