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  • Do you have a bowel routine?

    Posted by deann-r on December 15, 2023 at 7:42 pm

    If there was a “Hold-It” champion, I would be among the top contenders for the title. Both for #1 and #2 (if you know what I mean.) I must admit though, Evrysdi has put the crown for #2 Hold-It Champion in jeopardy. Although I take Imodium daily to ward off the gotta-go moments, it still happens more frequently than I’d like.

    To regain my title, I’m looking for solutions. Do you have a bowel routine?

    I’ve always been the type of person who waits till I have to go, then holds it until I get the opportunity. It crossed my mind that maybe a schedule would make it more predictable.

    For those who do have a routine, how does it work? I’m open to other suggestions as well from my fellow Hold-It Champs!

    alyssa-silva replied 2 months, 1 week ago 4 Members · 9 Replies
  • 9 Replies
  • steff

    December 19, 2023 at 2:27 pm

    i’m curious about the same thing I often find I’m on one end of the spectrum or the other with regards to number two and would love to have consistency in my routine. I have no idea where to start though looking forward to replies to this question.!

    • deann-r

      December 21, 2023 at 11:58 am

      Glad, but not happy, to know I’m not alone.

  • tracy-odell

    December 20, 2023 at 2:30 pm

    I gradually lost control of my bowels and then my bladder. I figure it is because my back is curving above and below the Harrington Rod used 50 years ago to fuse my back. I chose to have an indwelling catheter, so it only needs to be changed once a month. It has been so liberating to be able to “pee like a man!” Throughout my teen and adult years, I drank very little water because getting help to go to the bathroom was labour-intensive for both me and my attendant. I can now drink as much as I like.

    Managing the bowel issue has been more difficult. But since these difficulties were connected with my spine collapsing, I asked to be referred to someone at our local rehab facility for people with spinal cord injuries. After all, I know many people who are quad- or paraplegic, and they seem to develop a very reliable routine.

    Here’s a summary of the advice I received from the nurse. I have made modifications as necessary. For instance, I used to “go” every other day, but now I tend to go every day. I follow my body’s language in this regard, and 95% of the time things work out as planned.

    Experimentation is needed to figure out what will work best for you. I found that it was necessary to try something for at least a week or 10 days to establish whether that variable/combination would work, so I was neither be constipated no have diarrhea.

    Basically, decide on your preferred routine – early in the day, bedtime or some other time. The night before I plan to “go”, I take two Dulcolax pills. One pill is enough for most people, but I need two for it to work. Then, in the morning, I will need to “go” shortly after getting my wheelchair, but I will need a suppository to get things started. It took a few months, but I can reliably count on being able to go to the bathroom every morning after I get up. I can make sure my appointments are scheduled no earlier than I can manage to complete my “go” routine.

    I wear a thin+absorbent pad in the case of accidents. This handles almost anything that starts to happen before or as I am getting on the bedpan. It is also protection if anything happens on the way into bed. Most times, all is well, but if not I am “covered.”

    The nurse gave me all kinds of graphic information about how to insert a suppository, and what you should strive for the poo to look like. Just email me if you want them, and I will send them to you. I’m at [email protected].

    • deann-r

      December 21, 2023 at 12:31 pm

      Thank you so much for sharing such a wealth of information. Genius to seek out info from someone familiar with the sci community. I always think we can learn so much from each other. I agree it takes time to adjust and see what works for you. How long did it end up taking you to get your routine figured out?

      I’ve seriously considered getting an spc but can’t get myself to look into it further. Honestly I don’t know the difference between an indwelling and spc. Do you have to go to the clinic to get yours changed or can you change it from home? Do you have to worry about infections?

  • alyssa-silva

    December 20, 2023 at 8:47 pm

    I used to have the opposite problem DeAnn. I’d go ten or more days without a bowel movement and always ran into issues as a result. It was awful. I’d get so sick.

    But after becoming tube-fed and on a schedule with my feeds, I’ve been taking Miralax at the same time almost every day. (Some days I’m not home.) It has been life-changing as far as going to the bathroom goes. I usually take Miralax around 1pm and typically go to the bathroom at night. I randomly go in the morning sometimes, though, so it’s not as routine as I’d hoped. But I haven’t dealt with constipation in two years, so I’ll consider it a win.

    As far as peeing goes, I’ve just gotta be the “hold-it” champ with that one.

    Do you take Imodium at the same time every day?

    • deann-r

      December 21, 2023 at 12:43 pm

      As far as the Imodium, I do the liquid version so I can take it through my feeding tube. I was only doing half a dose once a day but my stomach would start to feel icky before it was time to take it so I now do half a dose twice a day. In the morning and afternoon. Helps for the most part.

      It seems like constipation is more of a prevalent issue with SMA. I remember by brother struggled with it from the get go. Glad the feeding tube seems to have helped. What formula do you use again?

      • alyssa-silva

        December 22, 2023 at 6:17 pm

        I use Neocate Splash. It’s an amino acid based formula.

  • tracy-odell

    December 21, 2023 at 3:06 pm

    Hi again,

    An in-dwelling catheter is a 15″ – 20″ silicon catheter that is placed into the urethra (the pee hole). It stays there all the time and your pee gradually runs into a urine collection bag. There are small bags for use in the daytime that fits under slacks/pants (typically called leg bags in our neck of the woods.) There are larger bags for use at night, which are place on a hanger between the mattresses on my bed. The bags are changed and attached to the catheter that is in place. The catheter is changed once a month. Bladder infections will occur. I’ve had about 3 infections in the past 2 1/2 years. Sometimes there are problems if the catheter gets disconnected from the external tubing. These accidents require changing of my clothes. and happens once with each new attendant. The resulting work it creates to get me back into bed and get me changed is powerful incentive for them to make sure they do the connection right the next time 🙂 A nurse comes and changes the catheter for me once every 4 weeks. An attendant can be trained to do this. I would say if they could do a tampon they could learn to do this. But because I can get the nurse to come, and it is covered under OHIP, I’m not planning to train my attendant. Besides, when the community nurse comes, they pay for my urinary supplies, so I don’t have to buy the bags, catheters, sterile water etc. needed. The nurse is at my home for only 15 to 20 minutes, and she calls ahead to confirm the time.

    After a year of in-home service, I was asked if I could go to a clinic to get it changed. I explained that it would be impossible since they didn’t have a ceiling left, someone qualified to use it, and an attendant to help me get addressed and dressed again. They agreed. So I continue to have the changing catheter service at home. If I had a significant problem with the catheter being blocked, I can call the nurse on the cell phone and make arrangements for her to come the same day to change it. Fortunately, I have very flexible nurse assigned. On the 2 occasions they sent someone else, things did not go quite so smoothly. Overall, I’m glad that I did it.

    The Super Pubic Catheter (SPC) is minor day-surgery which can be done while awake. It requires the insertion of a short catheter directly into the bladder through the abdomen, below the belly button. I think a short catheter is inserted each time a person needs to go pee, but not sure. I decided against this option because I thought I would have trouble with it. My back is quite arched so my belly would probably be a problem. There is info on the Internet.

    Then, there’s the “Mitrofanoff Procedure” which is major surgery to create a stoma (a raised cherry size bump) that is visible outside the abdomen. It provides a direct connection from the bladder. I think the bag is directly attached around the stoma by being glued on. I’m not sure how often it has to be changed, but probably when the glue starts to loosen up and leaks start to happen. I don’t know much about this because I dismissed it as an option due to the time the surgery would require.

    • deann-r

      December 22, 2023 at 8:58 am

      Thanks for the great information!

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