Potty Problems

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Distinguished member
Mar 17, 2005
So, I am about to get a little personal here, but I have to ask because dad has been having some problems. Does anyone have problems controlling when they go to the bathroom (both with poop and pee)? This seems to be a problem for dad lately. Mom has been having to clean up some messes and I am wondering if this is normal. I know this is something most people would not feel comfortable talking about, but it's been a tough week and I have to ask.
Hi Dana-- This started with Dad many months back. After balking at the idea of wearing adult diapers, like Depends, he now wears them. He had been asking the aides to get him on and off the commode seemingly all day long, and it was wearing everyone out. I guess the sphincter muscles and again, the diaphragm muscles deteriorate and you lose the ability to hold it all in. Likewise, constipation is a problem for the same reason--no muscle control. On another board, someone was discussing condom catheters which drain easily into a collection bottle, but it sounds like your Dad doesn't need that quite yet. Glad you are not shy about asking! This isn't a time to be shy, unfortunately....

Hi Dana,

I don't know what goes on inside their bodies. LB went through a tough couple of months with this. Not all the time, just now and then. He was also having lots of problems with spasms or cramps inside his gut at the same time. Finally, we got the spasms/cramps under control with Librax and Bentyl and all the accidents went away. Constipation is more of a problem now. He still has to pee a lot but he has complete control as long as there is a urinal within reach.

Good luck.

TO everyone, No prolems myself in that area [bowel or bladder control].Did have terrible problems with constipation in the fall 2005. believe it or not stewed prunes did the trick, never have a problem anymore.Also in Jan. 2006 I changed my diet a lot to oranic foods and steamed veggies that might have also been a factor in improvement in this area for me anyway.BWK
Potty Probiems

I had problems in 2004 with loose stool. I started on probiotic and after about 2 weeks , I got over my problem. Probiotic puts the friendly bacteria in your colon, which promote a healthy balance of flora in your gastrointestinal tract. they can be found in most health food stores or on the internet.
Al, If a person misspells words in a thread can it be corrected after it's sent or does it have to stay the way it is.The above post I proofread twice!How does one send a face icon?BWK
Hi BWK. Sure you can edit spelling or whatever in your post. Click on the edit button and then click in the window and edit away. We do have spell check now. The little grey window with ABC is the spell check. Click on it and it hi lites what it thinks are the errors. You click change or ignore and it goes to the next word and click ok when it's done then post message. To get smiley faces you have to use the Post Reply at left and not the Quick Reply which is on the right side of page.
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Well Dana seeing as you asked. I haven't had that problem but as luck would have it I was on here the other night and had to pass a bit of wind. Unfortunately the wind was wet. Had to change pyjama pants. Only problem I've had. No one around and you think you can lift a cheek and sneak one out and crap happens. Darn.
Don't feel bad Al...I think we have all done that before! In fact, I am trying to potty train my son right now, and he seems to have the same problem you had the other night. You don't even want to know how many pairs of underwear we have gone through just in the past couple of hours. How do parents do it? =)
My mum has started wearing incontinence aids too. While the fact books state people with ALS/MND don't lose control of those functions, when it is such a big effort to get up and down all of the time to go to the toilet, albeit frequently, I think it is a relief for them to have something to rely on that isn't another human, when they can't get around as fast as they would like to.
An external condom catheter provides an excellent solution for urination problems. I’ve used one 24/7 for quite a while now with great success. From my own personal experience, nothing breaks a man’s spirit more than putting a diaper on him. It’s understandable if a PALS is bed-bound or has diarrhea, but it is possible to schedule bowel movements to a certain degree. Constipation and spending countless hours on the throne is another issue.

Constipation was a topic that I always use to take lightly, until I had severe problems with it. I reached a point after my peg tube operation where constipation had caused me extreme pain. I was so inflamed and impacted that a manual “ROTOR ROOTER” job was required to resolve the problem. Talk about pain. I screamed more than my wife did when she was in labor – only I didn’t have the option for an epidural. I now take constipation very seriously and I’ve learned several things about it that I would like to share with you, so that perhaps you may avoid going through what I did.

Resolving constipation would be so simple if only we could watch our diets, drink enough fluids, go to the bathroom when needed and be more active. Life with ALS just isn’t that simple though. As the muscles involved in chewing, moving food toward the back of the mouth, and swallowing weakens in ALS, eating and drinking become less pleasurable and more time-consuming. Difficulties with chewing or swallowing may cause PALS to eat soft foods that are processed and low in fiber. Foods that are high in fat and sugar and those that tend to be low in fiber content, such as eggs and dairy foods, may cause or aggravate constipation.

Constipation is a symptom that has different meanings to different individuals. Most commonly, it refers to infrequent bowel movements, but it may also refer to a decrease in the volume or weight of stool, the need to strain to have a movement, a sense of incomplete evacuation, or the need for enemas, suppositories or laxatives in order to maintain regularity. Constipation occurs when the colon absorbs too much water or if the colon's muscle contractions are slow or sluggish, causing the stool to move through the colon too slowly. As a result, stools can become hard and dry. Constipation may cause the stool to pack the intestine and rectum so tightly that the normal pushing action of the colon is not enough to expel the stool. Neurological disorders can slow the movement of stool through the colon and rectum.

It seems like there is no one best bowel program that can be applied to everyone. What works for one, may not work for another. Each one of us has unique life styles and other variables that come into play with constipation. A number of factors can disrupt normal bowel function, including inadequate fluid intake, a low-fiber diet, inattention to bowel habits, age, the combination of reduced activity and progressive motor neuron dropout, depression, and even stress. Many medications, including painkillers, antidepressants, tranquilizers, blood pressure medication, diuretics, iron supplements, and calcium supplements can cause or worsen constipation.

There is a general concept that low intake of fiber or fluids may commonly cause constipation. Western diets often provide only about 1/3 of the daily levels of fiber intake recommended by nutritionists. Hence, fiber, often provided as supplements or over the counter drugs, is widely used to treat constipation. Fiber clearly increases stool bulk and frequency, and decreases transit time in healthy people, and may benefit individuals with relatively minor or occasional constipation. However, the few studies in which dietary fiber has been used to treat chronic constipation have not demonstrated significant benefit. Thus, many conclude that low fiber intake cannot be a cause of chronic constipation, and that increasing fiber intake is unlikely to offer significant benefit for patients with more severe constipation. Nevertheless, a high fiber diet should be tried before embarking on long-term drug treatments or special testing.

There is also a belief that constipation can occur from drinking insufficient liquid. Even small changes in stool water content can considerably alter stool consistency. Osmotic laxatives work by this rationale. These agents (e.g. milk of magnesia or lactulose) help retain water in the stool. Normally, the colon absorbs very large amounts of water -- almost 90-95% of the water that enters it daily. Therefore, simply adding a small amount of fluid to one's diet, say 1 or 2 additional glasses of liquid, will not have an effect on constipation. So far, research does not support increasing fluid intake to relieve constipation, but dehydration should be avoided.

If you use laxatives frequently, you may develop lazy bowel syndrome, a condition in which your bowels become dependent on laxatives to function properly. In fact, laxative use can cause a number of problems, including poor absorption of vitamins and other nutrients, damage to your intestinal tract and worsening constipation. A doctor should determine when a patient needs a laxative and which form is best.

My doctor prescribed a combination of liquid Enulose (lactulose) and liquid Senna in my peg to regain some regularity; it usually does the trick. If that doesn’t work or if I want to plan an outing and have a bowel movement before I go out, I break out the big guns – liquid glycerin suppositories by Fleet. They can be administered while sitting on the throne and work in minutes. Bombs away!

Hope this helps

Pat McClellan
Limb onset 5/02, Dx 2/03, W/C 4/04, Bipap 11/04, Peg 10/05, Hospice 1/06
Thanks for sharing your extensive knowledge of constipation issues! A couple specifc questions if you dont mind....
do you take the lactulose and senna every day, if so, in AM or PM? Do you get any gas/cramping form the lactulose?
My hubby has started on the lactulose but is uncomfortable from cramping...wondering if it will go away as he adjusts. He has become dependent on laxatives and uses Milk of Magnesia every 3 days now, but our nurses wish he would try something else so we have added the lactulose--he doesnt like it, but we just started.
Cheers, Beth
Hello Beth
I take the Senna daily at bed time. If I don't get a bowel movement after the third day, I'll take the Enulose after dinner and within a hour, I usually feel the urge to go. If I can't go by bed time, we use the liquid glycerin suppositories by Fleet. Within 5 minutes, I'll be singing "Plop Plop, Fizz Fizz, oh what a relief it is".

I use to get a little cramping, but it went away after my body got adjusted to the meds. My gas isn't as bad as my wife's gas. She has so much gas that an Arab is following her around.

Take care

Pat McClellan
Limb onset 5/02, Dx 2/03, W/C 4/04, Bipap 11/04, Peg 10/05, Hospice 1/06
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