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Sjogrens Topics => Living With Sjogren's => Topic started by: Carebear on October 02, 2019, 11:31:02 AM

Title: Bowel incontinence - warning TMI
Post by: Carebear on October 02, 2019, 11:31:02 AM
Dear friends,

This is an embarrassing, disturbing topic.  I have thought for some time about reaching out to this knowledgeable group, and I guess it is the right time.

I hope to hear about possible answers or solutions, or maybe people can share their similar experience.  Or maybe I'm just venting.

For several months I have had bowel issues - diarrhea often with severe urgency, and frequently resulting in "accidents ".  The worst is not being aware I need to go to the bathroom and I discover this the next time I urinate.  It can happen a dozen times each day.

I've had a barium swallow which only showed moderate acid reflux.   I say only because that isn't causing my current bowel issues.

A colonoscopy is scheduled for next month.  Maybe the specialist will see something.

Any thoughts?  It can't be from medication.  Any possible culprits have been reduced or eliminated.  Health and stress wise,  I am relatively stable.  So now what?  I'm only 62 years old and hope this isn't my future.
Title: Re: Bowel incontinence - warning TMI
Post by: sixty on October 02, 2019, 12:11:51 PM
I used to have urgent diarrhea when I was working and it was so embarrassing.  It totally stopped when I quit so I'm thinking it must've been stress.  Now I have times when I've gone in my pants without knowing it occasionally.  It's always a small amount but surprising none the less.  I also take magnesium to help with my constipation because I take opiates for pain.  I sometimes take more than usual so that's what it turned out to be.  I forget and take it twice or three times instead of once, so my bowels get loose I guess.  Getting old is no joke!!  I hope you can find out what's causing this and you are not alone.
Title: Re: Bowel incontinence - warning TMI
Post by: irish on October 02, 2019, 01:17:49 PM
I am sorry that you are going through this cause it really is not easy to deal with. The one thing I noticed is that you say you don't feel this when it occcurs much of the time. This makes me wonder if it is a neuropathy related to autoimmune disease. I don't remember if you are diabetic but I have seen bowel issues in people with the neuropathy of diabetes.

I would be surprised if a colonoscopy would totally nail this problem. I think there are gastrointestinal drs who specialize in the type of problem you speak of. I don't know what they are called but I think that Linda196 could come along and give you information that would help you out.

I also wonder if taking magnesium could be causing the whole problem. Magnesium is known to cause muscle weakness. I have Myasthenia gravis and magnesium is a no-no for me. I have muscle weakness much of the time and it can be quite bad at times. Taking magnesium when one is a myasthenic patient can put us into crisis mode.

It would be good to see if you could replace this magnesium with another type of stool softener. Sometimes a stool soften with a dose of milk of magnesia to stimulate the colon every other day or so does the trick. The best thing I saw years ago when working as a nurse was dried fruit ball eaten every night or so.

You can probably do a search and find a bunch of recipes. I know that our dietary department used to grind up apricots, prunes, raisins, etc ( the dried fruits of choice)and mix with some bran. You can ask your pharmacist about the type of bran powder cause there are several kinds available. Mix bran powder with the ground fruits and roll in balls and store in refrig. Because of the opiates you might have to use a combination of stool softener caps, fruit balls and milk of magnesia to find the desired effect. The milk of magnesia gives the colon the kick to move the stool along after it is softened. Just some thoughts, Good luck. Irish

Also, drinking the fluids is important as we hear from all our docs. :)
Title: Re: Bowel incontinence - warning TMI
Post by: Linda196 on October 02, 2019, 01:54:54 PM
Like Irish, when I saw that you weren't aware of the passage, my mind immediately went to a nerve problem, and when i saw that you have both osteoarthritis and cervical stenosis, I have to wonder if there may be some lumbar stenosis or osteo causing degeneration around L1-3 or the S 2-4.

Of course Celiac can cause some fecal incontinence, but it's more a case of urgency, and there is no masking of the feeling.

Title: Re: Bowel incontinence - warning TMI
Post by: Carebear on October 02, 2019, 02:10:59 PM
Good suggestion about the magnesium possibly being the cause.  I stopped taking magnesium about two months before this all began so unfortunately that's not it.

Thanks, Irish. But I am not diabetic.

I have Celiac but it's 100% managed, verified by bloodwork because my doctor thought I was cheating on gluten.   I wasn't.

I thought of nerve damage too.  Any idea how this could be verified or ruled out?

Do you think it could be ulcerative colitis or crohn's?  I had a 10 day bout of night sweats back in May that made me think it was possible.
Title: Re: Bowel incontinence - warning TMI
Post by: Carolina on October 02, 2019, 03:04:15 PM
My husband has microscopic colitis with those symptoms.  He wears a pull-up which gives him some protection.

No fun at all! 

Elaine
Title: Re: Bowel incontinence - warning TMI
Post by: irish on October 02, 2019, 06:26:45 PM
I had a husband, now a son and grandson with celiac. Neuropathy is very common with this disease. I guess I would pursue GI with questions and/or neurologist. I would bet in this day and age there is a specialist in GI/neuro cause everyone is expanding their specialities. Good luck with this. Irish
Title: Re: Bowel incontinence - warning TMI
Post by: Carebear on October 02, 2019, 08:32:58 PM
Irish,  I was not aware that neuropathy and Celiac could be related.  I have a question.   If I have eaten gluten free since diagnosis, could I still develop neuropathy?

Of course I don't know how many years I had Celiac prior to diagnosis.  My guess is at least five years.  Is there a chance that this plays a role too?
Title: Re: Bowel incontinence - warning TMI
Post by: Carolina on October 03, 2019, 06:35:31 AM
How could I have forgotten neuropathy? 

I have neuropathy of my small intestine which causes SIBO (Small Intestine Bacterial Overgrowth).  Fortunately SIBO has an easy, definite test, and is treated with antibiotics (10 days) and then is gone (until it may return as the bacteria build up again). 

I have been symptom free for two years!  I was suffering terribly, tho' the FODMAP food elimination play did help.  Near the end of my misery I couldn't tolerate either glucose or lactose because they increased the activity of the bacteria.  NOW I can eat anything, even beans!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/

Regards, Elaine

Title: Re: Bowel incontinence - warning TMI
Post by: Carolina on October 03, 2019, 06:36:24 AM
How could I have forgotten neuropathy? 

I have neuropathy of my small intestine which causes SIBO (Small Intestine Bacterial Overgrowth).  Fortunately SIBO has an easy, definite test, and is treated with antibiotics (10 days) and then is gone (until it may return as the bacteria build up again). 

I have been symptom free for two years!  I was suffering terribly, tho' the FODMAP food elimination plan did help.  Near the end of my misery I couldn't tolerate either glucose or lactose because they increased the activity of the bacteria.  NOW I can eat anything, even beans!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/

Regards, Elaine
Title: Re: Bowel incontinence - warning TMI
Post by: irish on October 03, 2019, 11:23:25 AM
Carebear, I guess I don't know for sure about the neuropathy. I do know that my hubby was having symptoms of Celiac in 1964 when we got married and I asked a dr one time about Celiac and he just poopod me. Well he was diagnpsed in 1977 with the Celiac. He had a lot of leg pain and other pains that were ongoing and diagnosed as neuropathy.

He had been eating gluten free since 1977. The first few years were difficult as he was a traveling salesman but into the 80's it became so much easier to control his diet. He had to quit working in 1994 due to health and he ate a very good gluten free diet but still developed more neuropathy.

If you do research on celiac you will find info on the site http://www.celiac.com

This site is an older one and has info on many things people don't even think of. People with celiac even can get a specific skin disease. There is also cases of neurological changes in the brain tissue from celiac. All of this is individual and not everyone gets all of the neuro or skin issues and if they do everyone is different is symptoms. Thanks, Irish
Title: Re: Bowel incontinence - warning TMI
Post by: Judie P on October 03, 2019, 03:36:27 PM
Hi, Carebear.  I started going through this when I took antibiotics for MRSA.  The one antibiotic, clyndomycin gave me C. Diff.  It is a form of colitis.  After taking 6 weeks of vancomycin, it stopped.  I just had a colonoscopy three weeks ago to rule out colitis and Crohn's.  What my GI found was internal bleeding hemorhoids and one polyp.  I never had a fever with the C. Diff, but it did cause diarrhea (about 10 times a day), with pus and blood.  Sometimes all people have is diarrhea.  I had to stay on a diet of boiled eggs, bananas, white toast, and white rice.  I lost 22 lbs, but needed to anyway.  I think a colonoscopy is in order. 
Title: Re: Bowel incontinence - warning TMI
Post by: Judie P on October 04, 2019, 01:17:42 PM
I hope I didn't scare you, Carebear.  I am not saying you have C. Diff.  The colonoscopy can rule out so many things that I just thought it was wise to get it.  I am normally constipated with my primary sjogrens, so it took 2.5 gallons of Garilyte and 3 days of just clear liquids to get me to being NEARLY clean.  So my diarrhea was more like semi-soft marbles.  I call it dry diarrhea.  I had a really good GI doc who told me that especially Crohn's, is not a normal thing for someone in their 60s to get.  You may very well not have that.

As far as neuropathy...  well, I have been trying to tell my docs for years that I have it.  Cervical and Lumbar stenosis, degrenerative disc disease and arthritis.  I am one of the lucky ones that is constipated, so I don't normally get soft stools unless I eat a ton of squash or avacado.  Then I do have bowel accidents and many times never feel it coming out.

Keep us informed on what happens.  Hugs.
Title: Re: Bowel incontinence - warning TMI
Post by: irish on October 04, 2019, 08:04:41 PM
Interestingly enough if you read a lot about the Celiac you will learn that some people don't have colon issues with their disease. Everyone is different of course and the neuropathy also occurs in some and not others.

The diarrhea is really one of the more common symptoms along with the cramping and nausea. Most people who talk about gluten intolerance don't realize that the diagnosis of Celiac disease is a very specific thing that needs certain blood work done and scoping of small bowel with biopsies of the villa found in the small bowel. This villa gets damaged in celiac and is what causes the inability to absorb food. Celiac disease is the inability to absorb the protein gluten found in oats, wheat, rye and for some people oats.

Celiac patients can't eat gluten because to do so would actually make them much more ill and can be fatal. It is not an allergy for celiac patients, it is the bodies inability to absorb the bodies nutrients found in the gluten. It is an autoimmune disease. Most patients had a very poor future with this disease until the second world war and the depression when there was hardship and food shortages.

At this time a lot of people had a very sparse diet and rice was their staple food. This was when doctors started putting all this info together and began figuring the disease out. The people with the celiac who ate the rice diets improved significantly and those who ate wheat rye and sometimes oats didn't do as well. Irish
Title: Re: Bowel incontinence - warning TMI
Post by: markt on October 05, 2019, 10:00:11 AM
I struggle with this... changing my diet (no refined sugar, wheat, processed meat, dairy) helped the most.  I also lost 30lbs.

I use senecot and digestive enzymes as well.
Title: Re: Bowel incontinence - warning TMI
Post by: irish on October 05, 2019, 05:03:08 PM
If a person is wondering about gluten intolerance (not celiac)or IBS read up on Bile acid malabsorbtion. I have this and it sure is bad enough that I could think it was going to ruin my life at time. It is also known as BAM. Basically the bile acids do a job on the colon and cause such bad cramps and loose stools.

By reading up on this I found that the IBS and lactose intolerance are also included in this. Docs have discovered so much the past few years and are classifying a lot of these into one disease process. I am having problems this weekend as I ate candy, ice cream and some other higher fat foods and that really kicks it up. The powder I am prescribed really doers help. Mix it in a liquid and I take it two times a day and it acts like it soaks up the liquid stool in colon and decreases the gas, pain and diarrhea. My GI doctor figurers this out. I guess it is becoming very common.

It is called Cholestyramine and comes in a packet. I can get by with taking 1/2 the prescribed dose. It slows my colon down fast enough that taking the whole dose can almost give me constipation. A lower dose works great and the stool doesn't get as hard as with metamucil. I put my powder in diet coke about 3 ounces then be sure to drink movre fluids. If I know I am going out to eat I will take my morning to evening dose prior to going out and this helps to prevent bad symptoms. Have to take meds 1 hour prior to the powder or 4 hours after the dose. Once you get the hang of it works great. Irish
Title: Re: Bowel incontinence - warning TMI
Post by: toad3737 on October 14, 2019, 08:28:08 AM
I was dx with microscopic colitis. My accidents were a way of life . . .until I did an elimination diet and realized I had a sensitivity to gluten and dairy. UGH!! So, I do my best with diet, and I also take a maintenance dose of Budesonide. I went from 3 x's a day to 3 x's a week (once I changed my diet).

Have the tested for C-Diff??

 Pull-ups might not be a bad idea until your colonoscopy. Sorry, I know it sucks.
Title: Re: Bowel incontinence - warning TMI
Post by: susanep on October 14, 2019, 10:01:45 AM
I have sometimes where when I go to pee I end up doing the other with no sign before that.

susanep :)
Title: Re: Bowel incontinence - warning TMI
Post by: irish on October 14, 2019, 03:49:34 PM
Microscopic colitis is a colitis that accompanies Celiac disease. My hubby had this also. It affects less of the mucus membrane than the ulcerative colitis does so there is less shedding of membrane and bleeding than U.C. Also, Celiac disease patients often have lactose intolerance. My hubby had that also. Thanks goodness for the almond milk.

When my hubby was first diagnosed with Celiac sprue in 1978 he was also diagnosed with ulcerative colitis cause he was in tough shape. A few years later he had biopsy of colon and was told by his GI doc that he had the Microscopic colitis and that it had just been identified. So, yes, the years go by and new testing does come out. Irish
Title: Re: Bowel incontinence - warning TMI
Post by: irish on October 14, 2019, 06:49:53 PM
Susan, I was just looking at you med list and you have picked up more drugs over the years haven't yoy. I am getting on the band wagon about meds and trying to keep an eye on what I take. Big intake of meds can also cause weakness and loose stools. Is there a pharmacist at your clinic or drug store who does drug  assessments to make sure yoy are not taking meds that can cause increased weakness, etc. This is such a problem for us "older" folks cause we have diabetes and kidney function that isn't quite up to par as it was years ago.

Man, sure disgusting how much work it takes to take care of ourselves with our poor health. Take care. Irish
Title: Re: Bowel incontinence - warning TMI
Post by: Deb 27 on October 22, 2019, 01:51:33 PM
Hi Carebear, it sounds like you are getting lots of information here. I would ask for a stool culture, if they haven't done one already. You could have an infection of some sort. I would ask for one, just in case. I don't know why they don't order a culture before they put you through a more expensive colonoscopy.

I also find it interesting that you do not feel when the incontinence happens. That does sound like a nerve thing. Have you had any other symptoms of neuropathy?

I hope you get an answer soon and get this resolved.
Title: Re: Bowel incontinence - warning TMI
Post by: Carebear on October 22, 2019, 02:06:27 PM
Hi Deb,

I did have a stool culture done about six weeks into this saga. It was clear of all the usual suspects.

As for neuropathy,  I do have some symptoms but it has never been diagnosed.  I did find that once I began using gabapentin,  it felt like a wet blanket had smothered a raging fire.  My doctors just raise their eyebrows and say "interesting ".

This issue continues to change, waxing and waning like so many things do for those of us with autoimmune diseases. I can say for sure it is not food related though.  I have the colonoscopy scheduled for two weeks away now. Not feeling optimistic right now. But maybe they can rule out more causes.
Title: Re: Bowel incontinence - warning TMI
Post by: susanep on October 22, 2019, 02:56:49 PM
Yes irish
I sure have picked up more meds. My husband brought up to me that the drugstore guy said that I can make an appointment to go over them all. I want to do that. I will have to plan it out.
Thank you,
susanep :)
Title: Re: Bowel incontinence - warning TMI
Post by: bloodless on November 18, 2019, 12:43:14 PM
I'm right there with you, but haven't had the courage to bring it up to anyone including my dr.  I do take nuerontin for neuropathy, so maybe it is related. Thanks for the post and giving me the guts to admit the problem. I don't feel so embarrassed and alone now.
Title: Re: Bowel incontinence - warning TMI
Post by: irish on November 18, 2019, 05:03:02 PM
bloodless, I am an old RN as most of you know and I have told my docs my problem. I want you to know that doctors and nurses have seen and heard it all and are prepared to talk about whatever problem we have. We humans look so fixed up and all together most of the time but every one of our bodily functions can go awry and many times there is a serious reason. Letting our doctor know is important cause they can help us sort it out. It also gives us someone to talk to about it. Some spouses can talk about these problems but not all so a doctor who will listen is very necessary.

Also, there are other specialists who deal with the problems of the colon who can do testing and figure out in pretty good detail what is going on and what to do about it.

My issue was pretty darn bad at times and it was a long winter and spring this year. Things are better now and my medication is the thing that really helped plus the diet is very important. I eat what is bad for me and I do pay for it!!!! Be patient and brave and life will get better.  The other thing to remember when we suffer with this is it isn't the end of the world and not get too serious about it. .Good luck. Irish
Title: Re: Bowel incontinence - warning TMI
Post by: Carebear on November 18, 2019, 06:49:59 PM
It is embarrassing to talk about incontinence, even with our doctors.  But they were all concerned when I brought it up and took this seriously. It made me regretful that I hadn't mentioned it months sooner.

I finally had my colonoscopy a couple of weeks ago.  Soon I will know the results of the biopsies taken. The specialist found nothing serious. Only an internal hemorrhoid and diverticula were observed. And that didn't cause my issues.  Irish told me the colonoscopy would not find anything. You were right  Irish.

One thing he suggested was that I increase my fibre, which I knew would cause me problems.  I did it anyway because I thought it was worth another try. WRONG!  I was careful to drink plenty of fluids and just increased the fiber by 2 grams, but it caused constipation.  I don't have to tell anyone here what that's like. And my hemorrhoid was not happy with me either!

My follow up appointment will probably result in nothing much. But I will talk about my suspicion of nerve damage.  Something I have also noticed is that my bladder doesn't empty like it used to. So we will see.
Title: Re: Bowel incontinence - warning TMI
Post by: irish on November 18, 2019, 07:33:52 PM
Dont want people to think I have divine ability to predict colonoscopy outcomes!!! Chances are I said "chances are everything will be ok". I do have a good chance of predicting the positive outcome because as many of you nave noticed, we all worry endlessly about out ailments and it is seldom that many of us have a negative outcome. Or at least a life changing outcome.

It is always better to get something checked out. The hard thing is trying to figure out when to seek attention. If we go too soon we worry they will think we are a hypochondriac and if we wait longer than we should we are afraid doc will think we are either afraid or not very smart. Can't win sometimes. Irish
Title: Re: Bowel incontinence - warning TMI
Post by: bloodless on December 13, 2019, 09:54:19 AM
I discussed with my dr and he said the evoxac may be causing it since it adds moisture everywhere. I'll have to pay attention, but theses symptoms come and go.
Title: Re: Bowel incontinence - warning TMI
Post by: irish on December 15, 2019, 12:54:07 AM
Cant remember if you are diabetic but diabetes impacts the colon more than people realize. Also, Sjogrens causes neurological damage that affects the colon at times. We are all different. If I get a new problem that my doctors and I can't find a reason for I eventually find that a lot of the issues are neuropathy or tendon issues from Sjogrens.

Remember how so many docs thought and still think that Sjogrens is just dry eyes, dry mouth!! Irish
Title: Re: Bowel incontinence - warning TMI
Post by: korbesen on January 16, 2020, 05:31:42 AM
I had this problem where I would pass some poop without knowing it.  Very embarrassing!  My gastrolologist checked my stool and I had low pancreatic enzymes.  I take Creon for the problem and much improved.  Don't give up!