Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Incontinence Issue

BamBam
 Share

Recommended Posts

BamBam Community Regular
BamBam
Posted

Some of my family members, I have just found out, have some bowel incontinence issues. Is there anybody out there that has some accidents, and if so, what products do you use?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
Some of my family members, I have just found out, have some bowel incontinence issues. Is there anybody out there that has some accidents, and if so, what products do you use?

I am going to suggest that they talk to their doctor about a referral to a Physical Therapist that specializes in this problem. I had to deal with this issue and was surprised at how successful the therapy was. Between that and being gluten-free I have been able to regain control for the most part.

Felidae Enthusiast
Felidae
Posted

On another forum many people have discussed their bowel incontinence. They use adult diapers and a medication called "nullo" which removes the smell of feces. Depending on the severity, maybe Immodium.

tiredofdoctors Enthusiast
tiredofdoctors
Posted

ravenwoodglass: It is so nice to hear someone talk nicely about physical therapy treatment! I'm a physical therapist -- I had my own clinic, but because this stupid disease affects my brain et. al, I had to close it. I specialized in Women's health -- urinary and fecal incontinence, pregnancy, post-partum. The treatment really is fairly effective, isn't it? I have a cousin whose doctor, during the delivery of her first child, made a mistake (not admittedly) during the episiotomy and cut her completely through her rectum. He then realized what he had done, and scrunched the entire area together as best he could. She ended up having to have surgery -- they took a long strip of muscle from her leg, and fashioned a new muscle -- a rectum, I guess, really. She wouldn't go for the physical therapy because she was too embarrassed, so the muscle never really learned what it was supposed to do -- she still has trouble.

It was really nice to see someone promote physical therapy for fecal incontinence. Thanks -- We need all the promotion we can get!!!! :P Lynne

ravenwoodglass Mentor
ravenwoodglass
Posted
ravenwoodglass: It is so nice to hear someone talk nicely about physical therapy treatment! I'm a physical therapist -- I had my own clinic, but because this stupid disease affects my brain et. al, I had to close it. I specialized in Women's health -- urinary and fecal incontinence, pregnancy, post-partum. The treatment really is fairly effective, isn't it? I have a cousin whose doctor, during the delivery of her first child, made a mistake (not admittedly) during the episiotomy and cut her completely through her rectum. He then realized what he had done, and scrunched the entire area together as best he could. She ended up having to have surgery -- they took a long strip of muscle from her leg, and fashioned a new muscle -- a rectum, I guess, really. She wouldn't go for the physical therapy because she was too embarrassed, so the muscle never really learned what it was supposed to do -- she still has trouble.

It was really nice to see someone promote physical therapy for fecal incontinence. Thanks -- We need all the promotion we can get!!!! :P Lynne

I wish also more people could get past the embarrassment, my PT was very professional and did her best to make me comfortable. It wasn't as bad as I feared it would be. It's kind of like the gluten-free diet, intimidating at first but not so bad once you really experience it. She was the one who really pushed me not to give up and got me finally diagnosed too, she gets at least one card a year from me in thanks.

tiredofdoctors Enthusiast
tiredofdoctors
Posted

You are a physical therapist's dream patient! . . . Lynne

  • 12 years later...
kate101 Newbie
kate101
Posted
(edited)

im 27, ever since I could remember I've had "accidents".  both bowl and urine,  still do. its HIGHLY embarrassing and has kept me from doing alot. even moving in with my son's father.  I went to my family dr a few weeks ago and she mentioned my blood work came back that I might have a gluten intolerance and that I need to see a gi.... Idk though to me it doesn't make sense... is she right or do I have some other medical problem.  

Edited by kate101
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
25 minutes ago, kate101 said:

im 27, ever since I could remember I've had "accidents".  both bowl and urine,  still do. its HIGHLY embarrassing and has kept me from doing alot. even moving in with my son's father.  I went to my family dr a few weeks ago and she mentioned my blood work came back that I might have a gluten intolerance and that I need to see a gi.... Idk though to me it doesn't make sense... is she right or do I have some other medical problem.  

 

25 minutes ago, kate101 said:

im 27, ever since I could remember I've had "accidents".  both bowl and urine,  still do. its HIGHLY embarrassing and has kept me from doing alot. even moving in with my son's father.  I went to my family dr a few weeks ago and she mentioned my blood work came back that I might have a gluten intolerance and that I need to see a gi.... Idk though to me it doesn't make sense... is she right or do I have some other medical problem.  

Take your doctors advice. If she did blood work that suggested you have a gluten issue you likely had positive celiac blood tests. Celiac can effect the nervous system, as well as many others, not just the GI tract. Your issues may resolve on a strictly followed gluten-free diet but you need to keep eating gluten until after you have seen the GI doctor and been tested. Welcome to the board and do read the Newbie 101 thread at the top of the Coping section. With positive blood work you will need the diet no matter what the results of the endoscopy.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,534
    • Most Online (within 30 mins)
      7,748
    Barbx4
    Newest Member
    Barbx4
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • NCalvo822
      Newly Diagnosed

      By NCalvo822 · Posted

      Thank you.  Very helpful.
    • knitty kitty
      Newly Diagnosed

      By knitty kitty · Posted

      Migraines can be caused by Thiamine deficiency.  Thiamine is a B vitamin that becomes depleted quickly because it can't be stored long.  All the  B vitamins work together to make energy, ATP, which is used to fuel all the cell activity.  Without Thiamine, the energy production cycle doesn't even get started.   There's studies done on mice showing thiamine deficiency affects the offspring of thiamine deficient mothers and fathers.  The offspring have fewer thiamine receptors and are prone to becoming thiamine insufficient quickly.  They have a higher metabolic need for thiamine.  Supplementing with extra thiamine helped them  tremendously. Migraines have run in my family for several generations, too.  Once I started taking TTFD, a form of thiamine that can enter cells without using thiamine transporters, my migraines have vanished.  TTFD is tetrahydrofurfuryl disulfide. Benfotiamine is another form that can improve migraine frequency, too. Thiamine is safe and nontoxic even in high doses.  There is no upper limit because thiamine has never caused a death even in high doses.  It is excreted via kidneys if not needed or not absorbed.
    • knitty kitty
      Lymphocytic Colitis with Celiac

      By knitty kitty · Posted

      Thank you, @Oldturdle, I greatly appreciate that.  I've always been a curious kitty.  I wanted to figure out why I didn't feel well because I knew it wasn't all in my head like they told me.  It pleases me to be able to help others in the same boat. Yes, alcohol prevents the absorption of thiamine and stops thiamine from working properly.  This can lead to Wernicke's Encephalopathy and Korsakoff syndrome, where thiamine deficiency severely affects brain function.  Doctors are trained to look for the triad of symptoms: opthalmoplegia (nystagmus), ataxia, and altered mental state.  However, not all people present with all three symptoms.  Many (80%) don't get diagnosed until their autopsy.   Alcohol has to be processed through the liver.  If there's insufficient thiamine, Alcoholic Fatty Liver develops.  In thiamine insufficiency, calories are turned into fat and stored in the liver instead of being turned into fuel ATP for the body.  Alcohol also prevents absorption of calories from food and other nutrients.   Non-alcoholic Fatty Liver can develop in nonalcoholics, storing excess calories as fat in the liver.  However, excess calories can also be turned into fat and stored in the abdomen, hence the increase in obesity.   In Celiac disease, we don't absorb sufficient nutrients like thiamine from our food.  If we eat a diet high in carbohydrates, we can run out of vitamins like thiamine and the other Bs needed to turn those calories into fuel ATP.  For every extra thousand calories of carbohydrates consumed, our bodies require 500 to 1000 mg of additional thiamine to process them into fuel, ATP,  the "bitcoin" of energy in our bodies.   Wernicke's encephalopathy can occur in non-alcoholic people, but doctors can miss the symptoms because the patient doesn't drink, and doesn't have all three symptoms of the classic Triad of symptoms seen in Wernicke-Korsakoff syndrome.  My doctors failed to diagnose me with thiamine deficiency, Wernicke's Encephalopathy,  because I didn't drink alcohol, although I had ataxia and an altered mental state.   Doctors don't think outside the box!   I went home and took thiamine.  I had improvement in my symptoms within an hour.  High doses of thiamine are required to correct Thiamine deficiency.  Thank God I had studied nutrition, microbiology, and the research of Dr. Derrick Lonsdale and Dr. Chandler Marrs.  ("Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition" is Drs. Lonsdale and Marrs' book.).  And I've kept learning and sharing that knowledge to help others.   It's wonderful you've been supplementing with vitamins so long!  Don't worry about the bright yellow urine.  That's excess Riboflavin B 2.  Interesting note, Riboflavin glows under black light!  Those lights used to detect where pets have soiled outside of the box, that's the Riboflavin in urine glowing.  Riboflavin can be put in sugar syrup when making rock candy and it will glow under black light.  Fun for Halloween. I hope you feel better, @Oldturdle.  If I can be of further help anytime, you can send a personal message here.  Thanks for reading my posts.  P.S. Thiamine deficiency and Wernicke's Encephalopathy are completely reversible if treated promptly with high dose Thiamine.
    • DebJ14
      Newly Diagnosed

      By DebJ14 · Posted

      Migraines ran in my family, on my father's side.  All of my female first cousins on that side, and our grandmother suffered from Migraines.  Grandmother died in 1984 so we do not know if she ever would have been diagnosed with celiac disease. However, all 4 of us cousins were diagnosed with celiac disease between 2003 and 2007.  The dermatitis herpetiformis rash is a blistery, super itchy rash.  When they do the biopsy they take it from non-involved skin that is next to the rash.  If done wrong, the results may not be accurate.  Have you ever had one done? In that case, I agree that maybe she has you still on gluten for a biopsy.  But, if she has not ordered it nor referred you to a gastroenterologist, then I would question her advice.  
    • trents
      Newly Diagnosed

      By trents · Posted

      Scott Adams makes an excellent point about the possible pending scope with biopsy being the reason you were advised to keep eating gluten, @NCalvo822! You might want to get some clarification about that. What you don't want to happen is to go gluten free and then have to go back on gluten at some point in order to produce valid scoping/biopsy results.
×
×
  • Create New...