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Thread: Helping Mom Help Herself (Toileting)

  1. #51
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    My husband uses a bowel program and he has MS. He sometimes has sensation and sometimes doesn't. It helps him to make sure he moves regularly.
    My nephew has been on a bowel program since he was born, he is normal in every since of the word but just has major constipation without the medicine. He has been check inside and out and they can not find anything wrong. They have tried special diet to no avail. But take his meds away and you can literally watch him bloat. One dr. did say it may be because he has been on it for so long. He is 7 now. Not that I agree with this at all, I would have demanded something been done long before now but I guess this is 2 sides to consider.
    I guess i would think mom is how old, how much better are things going to get and what is the best option for mom and you now.

  2. #52
    I just wish I could find out the information. It's like no one around me knows what I am talking about, and if they do, they think I am crazy!

    Grrr...

  3. #53
    Moderator jody's Avatar
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    Quote Originally Posted by YBill View Post
    UPDATE: OK, I have been going through all the normal channels, and the feedback I am getting is that

    a) almost no one has even heard of a bowel program and
    b) the ones that have say it is only for SCI patients, and since mom still has sensation, it might do more harm than good

    Would love to hear any thoughts you guys have on this.
    there might be any number of reasons a person would need a bowel program. I don't know if it is common with als, probably, since it is progressive. I have regained sensation, but still need a bowl and bladder program. I do not have a fully functioning gut, and cannot fully empty my bladder. you can teach your body to be on a fairly reliable schedule. you can do this with diet, and by being on an every other day program, you should gain some freedom from the potty.
    I had to use the magic bullet, which pretty much tell your butt to poop, at first, but went to glycerin suppositories that are used on the day you schedual for your BBp(bowel and bladder program). I use half a one now if I need to, but usually dont need supositories now. I have a bran cereal that morning, a tall glass of water, the supository. wait for effects, to work, gloved finger, digital stimulation if needed, wait more digistim if needed. on poop day, the glass of water and cereal usually do the trick now. it can and often does take many months to perfect a bowel program. some never get a reliable schedual. It was over three years for me before I was confident with my bowels. Bladder is much less a problem since I dont leak unless very full, but kidney health is affected due to uti.
    I think many use a similar kind of routine for elimination. it can take a couple hours of bathroom time, though I am usually out and showered in a half hour or fourty minutes for the last few years, with 2-3 accidents a year.

  4. #54
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    If I understand right you are now looking into a bowel program so you can control when she goes so shes not dirty throughout the day? Or is she having trouble going? Our physical medicine doctor is the one who prescribed Davids.

  5. #55
    A bowel program is needed for many people with different disabilities, not just those with SCI. A physiatrist or rehabilitation nurse will be experienced in helping individualize a program to the person's disability and individual needs. A suppository can be helpful even for those who are continent, if the goal is to time bowel movements to a time and place where it is convenient to evacuate and during a time when needed assistance is available. Generally digital stimulation is not needed for those with any voluntary control of the anal sphincter or those with a flaccid sphincter.

    An appropriate high fiber, high fluid diet, and the use of softeners, etc. is a good idea for many who have issues in this area. Doing bowel care immediately after a meal, and using a commode or toilet rather than a bedpan or going in bed on chux (or worse, a diaper) is beneficial to anyone. I have used individualized bowel programs in my career for patients with ALS, SCI, MS, CVA, TBI, MD, etc. etc.

    (KLD)

  6. #56
    Quote Originally Posted by MSWIFE1 View Post
    If I understand right you are now looking into a bowel program so you can control when she goes so shes not dirty throughout the day? Or is she having trouble going? Our physical medicine doctor is the one who prescribed Davids.
    Correct.

    Basically we never know when it is going to happen. So if we have to go out (which happens a lot with young kids) someone has to be paid to come in and sit there in case she needs placed on the toilet.

    Most of the time she doesn't, so it is a waste of money (figure 4 hours average times $20+) and my mom has to entertain the person. She'd prefer just to be alone.

  7. #57
    Been a while since I posted here, and I have a little update.

    I was finally able to find a rehab place that didn't look at me like I had 3 heads when I asked about a bowel program.

    Just your basic ducolax (or senocot, I forget which) at night, and then a ducolax suppository in the AM.

    Unfortunately it has not been working well. She still goes randomly throughout the day as she always did. Sometimes she doesn't even go in the morning after the suppository.

    It has been 6 weeks, and they have been hesitant to adjust anything, saying your body has to get used to it.

    How long is it typical to wait to make adjustments?

  8. #58
    Ybill, have you downloaded and read this document with her?

    Neurogenic Bowel: What you should know

    Also, these from the NMSS:

    http://www.nationalmssociety.org/abo...ion/index.aspx

    http://www.nationalmssociety.org/liv...der/index.aspx

    http://publications.nationalmssociet...ing?pg=39#pg39

    Is she doing digital stimulation in addition to the suppository? I assume she has a spastic anal sphincter since she has MS.

    Is she doing bowel care immediately after a meal, and up on a toilet or commode?

    (KLD)

  9. #59
    Quote Originally Posted by SCI-Nurse View Post
    Is she doing digital stimulation in addition to the suppository? I assume she has a spastic anal sphincter since she has MS.

    Is she doing bowel care immediately after a meal, and up on a toilet or commode?

    (KLD)

    She has ALS and not MS. She has control, we're just trying to get her on a schedule for quality of life issues.

    She does the program after she eats breakfast,

    Would a stronger/better suppository be helpful?

  10. #60
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    My husband has MS and was resistent to a bowel program for a long time.
    When we were using the dulcolax pills at night and suppository in the am he would still have times of needing to have a BM during the day. Considering the HUGE amount of work involved in getting him onto and off of the commode, I kept pushing him.

    What is working for him is Miralax and a suppository. And it did take a few weeks to figure out what dosage of Miralax (for him twice a day) worked best. And I have to agree with everyone, same time of day, after a meal, are really key.
    Rebecca
    Wife and Caregiver, husband has Secondary Progressive MS, wheelchair bound, unable to work, MS still progressing.
    Mother of 2 active boys!

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