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Caregiver Perspective: What Goes In Must Come Out

One of the joys of having a progressive disease is that everything changes. Just as you adjust to one change, something happens and the “fix” you had in place is no longer working. As Lynn’s caregiver, I have not found his physician to be particularly helpful in warning me about things to come. If I ask about an issue, he will give me a prescription or a referral but he’s not much on home remedies or being proactive on warning on what I might encounter. Therefore, most solutions I come up with are things I stumble across and come up with myself and are not recommendations by doctors so you might want to talk to your doctor before you decide to do anything I mention here.

Now, my take on waste management…

Initially, the only issues Lynn had with waste management was constipation and that was managed with diet pretty effectively. Fiber supplements were added to smoothies resulting in regular bowel movements (and enough gas to fuel our four vehicles). However, over time his GI system adjusted to the added fiber, the gas decreased and all was well. During that time, he was still very mobile and physically active.

As his ability to move around became more and more difficult and his activity level became less and less, he also began to take in less food and less fluid and has had some issues with constipation. We tried diet changes again but that hasn’t had much effect. One day I saw pediatric glycerin suppositories in the pharmacy. I got the idea that maybe what he needed was just some lubrication to help move things along. We tried them and they worked. Being pediatric, they are very comfortable to use and only have a very small amount of glycerin so there is not an issue of needing to get rid of a lot of glycerin in the emptying process. The only drawback to using them that I have found so far is that if I want to hire a nursing assistant to care for Lynn if I’m not home, I can’t because they are considered a medicine. Only a nurse can give them. (It doesn’t matter that you can pick them up without a prescription in the drugstore and anyone can use them. A nursing assistant by law cannot give a suppository because it’s considered a medication even if it’s ordered as a method to help her patient go to the bathroom. Ridiculous, right?)

Over time, having bowel movements has become a greater challenge and now ranks right up there as our most dreaded event of the day. We have been known to pray for a successful trip to the bathroom; no joke. I’ve even done a happy dance on occasion. We make life decisions around the toilet now. Lynn has very little muscle power to push. Therefore, I have to help. I use suppositories and enemas to lubricate and expand the colon but I have to use my finger to stimulate an opening in the rectum to encourage evacuation. I also have to manually push on his abdomen to help force the movement of the fecal matter down the intestine to the colon so it can empty. All of this is very physical for me and I get into some very awkward positions to be able to do it since he’s sitting on the toilet at the time and I’m working around him, holding onto him at the same time. I have a belt around his waist for me to hold on to so that I can control his upper body and he sits between hand rails to keep him from falling to either side. He’s very secure. Plus we installed a taller toilet so his legs and feet sit comfortably on the floor for stability. I position his legs so that support him like a tripod as he leans forward. It works but it can be a little uncomfortable for both of us.

Every morning we have our regular routine all aimed toward the “bathroom event.” He gets up, has hot tea (heat and caffeine to stimulate the bowels), exercises (to get the blood flowing to the bowels), he takes his medication (just because he has to), I take off his shorts and get him into a lift to go to the toilet and off we go…. That time frame could last from 15-30 minutes or more and it really wears him (and me) out. We actually listen to the Bible while we are in there as a good distraction so it doesn’t feel like we are wasting time. Oh, and he takes Polyethylene Glycol (Miralax or something similar) ever night to keep his stool soft enough to easily move.

Here’s our toilet routine. This is gross so don’t read it if you have a weak stomach.

  • Step 1 – Priming – Glove up and insert 1 pediatric glycerin suppository and wait for sensation that it’s working.
  • Step 2 – Glove up, lubricate gloved finger or wipe with baby oil – stimulate opening and insert finger. Rotate finger till rectum opens and fecal material begins to evacuate.
  • Step 3 – Glove up, lubricate gloved finger or wipe with baby oil check to see if anything still remains in colon; if so, put on clean glove and insert anther suppository.
  • Step 4 – Allow second suppository to work; when ready, put on glove, lubricate gloved finger or wipe with baby oil, stimulate opening and insert finger. Rotate finger till rectum opens and fecal material begins to evacuate.
  • Step 5 – Glove up – lubricate gloved finger or wipe with baby oil, check to see if anything remains in colon, if so, try pediatric enema this time.
  • Step 6 – Glove up, insert pediatric enema.
  • Step 7 – Glove up, lubricate gloved finger or wipe with baby oil, stimulate opening and insert finger. Rotate finger till rectum opens and fecal material begins to evacuate. Usually by now it’s empty. If not, repeat finger after waiting a while. I don’t usually put anything else in after an enema; I just dress him and come back later in the day.
  • Step 8 – Clean him up.

I use flushable wipes to clean up and I also cover my gloved finger with a flushable wipe which I lubricate with baby oil a lot of the time. Only use flushable wipes; not diaper wipes or you will stop up your toilet and septic system.

Bowel issues are a real problem. Can’t really go out in public if there’s a question of possible diarrhea or the need to go to the toilet in public; those baby changing tables just don’t hold adults very well and picking them up off the floor after changing them just isn’t a good option. Also, have you noticed that doctor’s offices avoid checking their bottoms or doing any procedures where they might have to put them on the table to check them out? That annoys me. I understand the difficulty but think of what they might miss. Buttock wounds are so common for people who have limited mobility or incontinence issues that checking “down there” should be a priority; not something they avoid.

Anyway, this is a delicate subject that I have been hesitate to write about but one of my followers asked me to share what we did so here it is. I hope it’s been helpful to those of you who are in the same situation and for the rest, hope you never have to “go” here.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • rolly
    1 year ago

    Thank you so much, Donna, for sharing this story with us!

    I know that many don’t want to talk about ‘waste management’ (nice way to describe it, lol), even though it’s just part of life. As you so adequately put it in the title: What goes in must come out. Yet, it’s considered a delicate subject (I guess because it’s just so gross) and a taboo for many. It’s therefore all the more appreciated that you chose to write about it in such detail. It’s also interesting for me, because in our marriage I’m the one with MS, while my wife is my caregiver, and it’s not always easy for me to figure out what’s going on in her head, or how she feels about all the tasks she has to perform. She just gets on with it, end of. So, in a sense, through your stories I can get a glimpse of what life must feel like for my wife, as your husband and I seem to be at a similar stage in our MS, and with similar limitations.

    The whole toilet routine you described sounded oh so familiar to me! I also started out with simple constipation, which we tried to control with diet. And when I was forced into a wheelchair permanently 6 years ago, it all became much, much harder very quickly. Lengthy preparation, suppositories and digital evacuation became the order of the day, and it soon became a dreaded part of the day, which not only took forever and exhausted both of us, but it came with immense discomfort. According to the doctors, my bowel had essentially become paralysed.

    I felt that the quality of life had become very low as a result of this, and I ended up with severe depression.

    My doctor suggested that an ileostomy may improve the quality of life for me, although like with every surgical procedure, it comes with certain risks, especially for someone with a chronic illness and in my condition. We spent over a year debating whether we should go down that path and eventually decided to go for it last year.

    So I had my large intestine removed and my small one connected to a stoma in my belly. The healing process was quite long, but the improvements it has brought me are immense.

    Gone are the days when we had to schedule our morning around the toilet event, my wife had to reach into my rectum and I was in great distress during the whole procedure.

    Admittedly, the thought of pooping through a hole in my belly did feel rather weird at first. But it’s just a matter of getting used to it. And of course, it requires regular maintenance. In my case the ostomy bag needs to be emptied 7-8 times a day. That may sound a lot, but it’s quite quick really, and a lot less stressful than the digital evacuation before. And the upside is that the output is in fact quite liquid and mostly odourless.

    So I have my wife change my bag early in the morning and then again, before she leaves for work. During the day, the carer who comes in will change it twice. Then my wife does it again upon coming home and before going to bed. And during the night it needs changing only once (when I’m lucky), and sometimes twice.

    It has definitely changed my life for the better. Just thought I’d share.

  • saddison
    3 years ago

    Thank you for discussing what no one wants to discuss. I experience the same issues (neurogenic bowel and bladder due to MS) with one significant exception. I am able to complete the steps you describe by myself. My husband has had to do most everything else that caregivers do, with this exception. Like you, I have to schedule activities outside the home around the status of my bowel regimen. Heaven forbid I have to leave my home several days in a row, meaning that I have to stop the meds to make me go, worsening the inevitable. I also have to go without food and water in order to leave the house which sets one up for UTI’s and increased constipation. The silver lining for me, and I imagine for your husband, is having a loving caregiver who helps you make the most of a distressing situation. People have no idea when they say, “But you look so good.”

  • DonnaFA moderator
    3 years ago

    Hi saddison, we’re glad that you enjoyed the article. Thanks for sharing your experiences, and your lovely words for your husband.

    Please know that we’re here to share support, anytime you need us. I also wanted to mention, in case your husband may be interested, that we have a caregivers forum. Thanks for being here! -All Best, Donna (MultipleSclerosis.net team)

  • caregiverX1
    3 years ago

    Donna, Thank you so much for responding and providing this helpful info! It has also helped me to see that i am not alone with this issue. My husband and I said we were not going to allow the bowel issues to control our lives, but unfortunately they have become a large (and unpredictable) part of it. It is very real to many of those that have progressive MS. My friends would never be able to get their head around what you and I (and many others) face when our loved ones cannot push because muscles have been affected by neurodegeneration and the “assistive measures” we must resort to as caregivers to make it happen. And when it does happen, as scheduled, it is time to rejoice. I appreciate you going into detail the regimen you follow that has worked for you. And of course, i will check with his doctor to discuss, but this info and the feelings you have about it haven definitely empowered me. Yes, there are many out there reading your blog that might be thinking that this is a TMI subject. And i am so happy for them because it’s a good indicator that they may not be where you and I are. And i hope it truly stays that way for them! I hope they never have to go where we have been and where we are. But for those of us that are where you are — Thank you for sharing and thank your husband for allowing you to share!

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