What’s to Come
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 no longer works. As Lynn’s caregiver, I have not found his physician particularly helpful in warning me about future things. If I ask about an issue, he hands me a prescription or makes a referral; however, he rarely provides practical advice. It would be nice if he told me what to expect when a change occurs. Maybe giving home remedies is not a practical expectation for a doctor, but couldn’t he proactively warn me about what to expect as challenges? He does not. An example of his failing to prepare us in advance is when Lynn developed a neurogenic bowel. We were unprepared and had no idea what to do. Therefore, we had to find our own solutions. That being the case, if you use my solutions, consult your doctor first because it is not doctor-prescribed but Steigleder-developed.
Now, my waste management problem resolution…
Initially, Lynn’s only issue with waste management was constipation. Diet managed those issues effectively. He added fiber supplements to smoothies, resulting in regular bowel movements (and enough gas to fuel our four vehicles). Over time, his GI system adjusted to the added fiber, the gas decreased, and all was well. During the constipation period of his GI story, Lynn worked out regularly and continued to move around independently with the assistance of a cane or walker as needed.
As his ability to walk became more difficult, his activity level dropped. He also began to take in less food and fluid, thus increasing issues with constipation. We tried diet changes again, but with minimal relief.
Glycerin Suppositories
One day, as I walked through the pharmacy, I noticed pediatric glycerin suppositories. I thought lubrication might help move “things” along. We tried them, and they worked. Since pediatric suppositories are small, they are comfortable to use. Only a small amount of glycerin enters the colon, resulting in the need to eliminate a small amount in return.
The greatest drawback to using them is the fact that the Board of Nursing considers the suppositories to be medication. I primarily hire nursing assistants to care for Lynn if I am not home. Nursing assistants cannot give medications. Therefore, some nursing assistants do not want to work for me since I need them to give suppositories to help start a bowel movement. Anybody, including a nursing assistant, can pick up a suppository without a prescription in the drugstore and can use it. A nursing assistant, by law, cannot give a suppository because it is classified as a medication. Ridiculous, right?
Over time, our greatest challenge on any day is helping Lynn have a bowel movement. We often pray for a successful trip to the bathroom—no joke. When the event goes smoothly, I have been known to do a happy dance in celebration.
Weak Abdominal Muscles
We make life decisions around the toilet now. Lynn has limited abdominal muscle power to push. Therefore, I must help. Though I use suppositories and enemas to lubricate and expand the colon, I must use my finger to stimulate the opening in the rectum for stool evacuation. Then, I must manually push on his abdomen to help move the fecal matter down the intestine to the colon to empty it. This entire process is very physical and awkward. I have a gait belt around his waist to help me hold on to it so that I can control his upper body as I lean him forward to insert the suppository or enema. We also installed side rails beside the toilet seat without rails could not keep him from falling over, so, he sits between handrails to keep him from falling to either side. He is very secure. Plus, we installed it. taller toilet so his legs and feet sit comfortably on the floor for stability. As he leans forward, I position his legs to support him like a tripod. It works, but it can be a little uncomfortable for both of us.
Every morning, our regular routine is 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), takes his medication (just because he must), gets undressed, and rolls onto the lift to go to the toilet and off we go…. That time could last 15-30 minutes or more, and it wears him (and me) out. We usually listen to the Bible while performing the bowel preparation, a good distraction, so it does not feel like we are wasting time. He takes Polyethylene Glycol (Miralax or something similar) every night to keep his stool soft enough to move easily.
Here is our toilet routine.
This is gross, so do not read it if you have a weak stomach.
Step 1—Priming: Glove up, insert one pediatric glycerin suppository, and wait for the sensation that it is working.
Step 2 –Glove up, lubricate the gloved finger, or wipe with baby oil. Stimulate the opening and insert the finger. Rotate the finger until the rectum opens and fecal material begins to evacuate.
Step 3 –Glove up, lubricate the gloved finger, or wipe with baby oil. Check to see if anything remains in the colon; if so, put on a clean glove and insert another suppository
Step 4—Allow the second suppository to work; when ready, put on a glove, lubricate the gloved finger or wipe it with baby oil, stimulate the opening, and insert the finger. Rotate the finger until the rectum opens and fecal material begins to evacuate.
Step 5 – Glove up – lubricate the gloved finger or wipe with baby oil to see if anything remains in the colon. If so, try a pediatric enema this time
Step 6: Glove up and insert a pediatric enema.
Step 7: Glove up, lubricate the gloved finger or wipe with baby oil, stimulate the opening, and insert the finger. Rotate the finger until the rectum opens and fecal material begins to evacuate. Usually, by now, it is empty. If not, repeat your finger after waiting a while. I do not usually put anything else in after an enema; I dress him and return later to repeat the process.
Step 8 Clean him up.
I use flushable wipes to clean up and cover my gloved finger with a flushable wipe, which I lubricate with baby oil often. Only use flushable wipes, not diaper wipes, or you will stop up your toilet and septic system.
Bowel Issues are a Problem
Bowel issues are a real problem. We cannot go out in public if there is a question of diarrhea or the need to go to the toilet; those baby-changing tables do not hold adults very well, and picking them up off the floor after changing them 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 hesitated to discuss, but one of my followers asked me to share what we did, so here it is. I hope it has been helpful to those of you who are in the same situation, and for the rest, I hope you never have to “go” here.
This article originally appeared on Multiplesclerosis.Net by Health-Union, LLC, and has been reposted with permission.
