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EVERYBODY POOPS

8/25/2016

23 Comments

 
Picture
It's a well-known fact that everybody poops. You poop. I poop. The POTUS poops. The Pope poops. Queen Elizabeth II poops. Hillary and Donald poop. In fact, all celebrities, athletes, police officers, teachers…you name them…they all poop. However, it's a lesser-known, and little-shared, fact those with Duchenne Muscular Dystrophy poop. Look it up, or ask someone who's been there. Pooping and Duchenne is an adventure to say the least.
 
I am not trying to gross you out, or write about something that makes you uncomfortable. If this subject does, or causes you to shake your head in disapproval, then please stop reading. I am simply trying to share a little light on something those living with the monster understand all too well, and secretly wish others knew about their daily struggle. So, if you are open to reading about a natural, though challenging, part of life with Duchenne, please continue reading with an open mind and a sense of maturity.
 
When your son says “I gotta go number two,” or something similar, that is when Duchenne parents release a deep sigh, roll up their sleeves, and respond…
 
“Okay, let’s do this.”
 
We reply this way because, in reality, we have no choice, nor do our sons. We also say it because there’s no better way to address this subject than tackle it head on. We can’t wish it away. We can’t ignore it. We can’t help our son with half an effort. When he needs cleaned, he needs cleaned. There are no shortcuts involved. He needs our full attention, because when he has to go, he has to go, and he cannot do it without our help. Start to finish, it takes a while (sometimes up to an hour)…but, that’s just life with Duchenne.
 
Calls from nature involve teamwork, cooperation, and a lot of trust. We must work with our sons for success, mostly during the day though sometimes in the middle of the night. Our sons expect us to treat them with respect, dignity, and maturity. They don’t want us to make a big deal about it, as well we shouldn’t. Equally, we trust our sons to let us help them with a very private aspect of their life.
 
For us, it was a learning process that evolved consistent with Alex’s age. During the early years of our Duchenne journey, he used a toilet like anyone else. His weight was manageable and he climbed onto the toilet unassisted or with minimal help. Later, when he struggled to climb up or could not clean himself effectively because of weakening muscles and imbalance, we helped and life was good.
 
Things became interesting, however, when Alex starting using a wheelchair in the Third Grade. Because he could no longer walk, he could not exit his wheelchair and move to the throne. To help, we developed a piggyback transfer method, where I squatted in front of his chair, secured his arms over my shoulders, and then stood. After carrying him to the toilet, I turned around and carefully lowered him down. We used this transfer method everywhere…at home, friends’ homes, restaurants, hotels, and even school.
 
Although his school offered use of a smooth, wooden, transfer board to slide him from his chair to the toilet, Alex preferred the piggyback method. We were fortunate his elementary and middle schools allowed us to use spacious bathrooms in the teacher’s lounge or special needs classroom. Once parked in privacy, I would piggyback him from his wheelchair to a nearby bench or table, undress him, and then piggyback him from the table to the toilet. When he finished, we reversed the process. We had this method down to a science.
 
I helped Alex go to the bathroom nearly every lunchtime. While he did his business, we would chat about his school day, his friends, girls, or even do some last minute studying for an afternoon test. Looking back, we had some wonderful, father-son bonding conversations in the school bathroom just sitting, laughing, and talking. Fond memories, indeed.
 
As Alex grew older and his weight increased from immobility and steroid use, I could no longer safely transfer him by piggyback. For example, we laugh (thankfully) about a time at Pierce Point Cinemas, when Alex had to go number two during a movie. After my incredulous reaction of you’ve GOT to be kidding me…NOW?, we made our way into an accessible stall in the public restroom. Without a transfer table, we decided to piggyback and then remove his pants on the toilet (i.e., shift them back and forth until they come off). It was not ideal, as it led to slumping and uncomfortable repositioning. It was also not ideal that I piggyback a growing boy who, at the time, approached my body weight in size.
 
Not surprisingly, things did not go as planned.
 
After Alex backed his chair into the stall, I squatted to pull him onto my back. With his arms over my shoulders and his hands securely clasped in mine, I stood or at least tried to stand. Because of my failing ability, his increased weight, and gravity, I lost balance and we fell to the floor. With Alex's full weight on my back and my face on the clean checkered tile, we could clearly see beneath the stall door that nobody was around to help. We were alone, stuck, and unable to move. We laughed in hysterics.
 
I remember lying there thinking…Okay, it's up to us to figure this out (which, by the way, is a common theme with Duchenne).
 
As Alex hung on for dear life, we slowly inched our way back up and then eventually onto the toilet. Once in place, everything else went smoothly, normally, and naturally just as we planned. Although we missed most of the movie, THAT father-son moment will never be forgotten...by either of us.
 
When Alex developed back issues beginning in the Seventh Grade¸ we abandoned use of a toilet. His spinal compression fractures were painful and debilitating and he was bedridden for nearly five months.
 
When that first call from nature sounded, we didn’t know what to do. I couldn’t piggyback him to the toilet because of his pain or transport him via a Hoyer lift for the same reason. We had heard of fracture pans, but did not have one. I remember trying a baking pan instead, but that caused him severe discomfort. We considered towels, but were not sure of their capacity to contain everything. We settled on adult diapers and a quick run to the store while he patiently waited. Once secured, we then gently turned him on his side. With the help of some strategically placed pillows and towels, we were ready. The method worked wonders then, and still does today, five years later…and even the other night at 3AM.
 
Today, as a 17-year old high school Junior, if Alex has to go, I pick him up and take him home to conduct his business. I’ll then take him back to school if he is not too exhausted from sitting in his wheelchair or if it’s not too close to the end of the school day.
 
Though unpleasant, perhaps the biggest worry about number two and Duchenne is the dreaded indigestion. Nobody likes this. If our sons are sick or have an upset stomach, things get real interesting, real fast. In fact, our proficiency is tested and performed in fast-forward to make things work cleanly and efficiently. We just roll with the punches and work to keep things contained. It isn’t pretty. But, often life with Duchenne isn’t pretty.
 
I share all this because we have found that acceptance and creativity are essential with Duchenne, especially when our sons are older, heavier, and unable to move. Our sons learn to accept full exposure and we learn to treat it like it's no big deal. Because, it isn’t. It's life, and sometimes life with Duchenne needs a little exposure so others can understand the challenges involved.
 
The bottom line is that you may surprise yourself on how you address this natural act. Many use a hoist and transfer to the toilet. Some use a hoist and bucket, if the urge cannot wait. Any method takes time to undress your son, transfer and position him, and then let him do his business. It then takes more time to clean him, transfer him back to his bed, dress him, and then set him back up to whatever he was doing before he had to go. Like anything else, practice becomes routine with time, and soon you won’t even think twice about it. We have found that patience, maturity, and improvisation are the keys to a successful experience. A good supply of vinyl gloves and sturdy wet-wipes work wonders, too.
 
Whatever your method, just know that if it works…it works…and that’s all that matters. It doesn’t matter how you do it, just that you do it because it must be done. You may also discover, as we have, that it’s a trusting and bonding time with your son.
 
So, if you’re still reading this blog post, thank you. I sincerely didn’t intend to make you uncomfortable. Although some may consider the subject unpleasant or crossing the line of appropriateness, what can you do…
 
This IS life with Duchenne…
 
…and just one part of the daily grind.
 
Besides, everybody poops…remember?



23 Comments
Jan Fels
8/25/2016 05:51:47 pm

Alex is very lucky that he can still do bowel motions on his own. Our 22 year old son Mitchell has lost the muscle power to do this and has to be medicated to be made to go. He can go up to 6 weeks without a bowel motion but we have got that down to a reasonable time frame now with more medication. He has since been diagnosed with irritable bowel syndrome as well, but again medication seems to be helping with this. I think the bowels are the main problem with Duchenne boys because they seem to cope so well with everything else but not this. I would be interested to see how many other DMD boys/young men have this problem too!

Reply
David Click
8/25/2016 06:06:33 pm

Thanks for commenting, Jan. I worry about this as sometimes Alex will go days between movements, and when he does go sometimes it's very difficult. We use Miralax as needed. When did Mitchell begin to lose the muscle power?

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Wendy
8/25/2016 06:17:35 pm

David, your everybody poops blog had me teared up both from the pure relating to the obstacles we Duchenne families face, and the happiness through the love we share between son and parent(s) Your article was well written and much appreciated by me! Thanks fr taking the time to share ;-)

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David Click
8/26/2016 10:33:09 am

Thank you, Wendy! This is such a significant part of living with Duchenne I just had to write about and share. Personal, I know, but so real. Nice to know others understand!

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Kathy Nickel
8/25/2016 06:30:46 pm

Hi Dave,

No one should ignore this post. Many of us will be in a situation similar to Alex's situation at the end of our lives. Sadly, most will not be cared for one on one, or with such love and compassion.

Have you compared notes with rehabilitation facilities and nursing homes? They may be able to share techniques, and point you to products that can help you care for Alex.

Best to you all,

K

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David Click
8/26/2016 10:36:05 am

Thanks, Kathy! We have not compared notes with facilities, but I'm sure they can offer pointers. Duchenne is such a learn-as-you-go experience, that anything is welcomed. And, you are so correct that most of us will be there some day to some degree. It's natural.

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Sharron
8/25/2016 06:37:22 pm

Hi David, what a great blog. It is so true. My son is 12 and now unable to walk. I can so relate to the comment'really? You need to go now?' But we do it . And yes I too have great conversations with him while he is doing his business. Thank you 😄

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David Click
8/26/2016 11:12:02 am

Hi Sharon! Thanks for commenting. We share a similar path in Duchenne! I can't tell you how many times I have said the "seriously, now?" quote...especially during the summer months when Alex stays up all night and needs to poop at the odd hours. Yet, we grin and bear it and do our thing, right? It's parenting. All my best to you, your family, and son!

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Laura
8/25/2016 07:30:27 pm

Great article! My son, Matthew, is 16 and has never been able to tell when he has to go. Even though the doctors told us that boys with DMD do not have elimination issues, we have since found by talking to others that it is more common than first thought. He uses adult diapers all the time and it is very hard to find somewhere to change him when we are out. Restrooms are not set up for the changing of a full grown adult. He can only tell us after he's gone so we run around trying to find someplace to clean him up. No one ever said an outgoing with a DMD child is boring!

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David Click
8/26/2016 11:23:06 am

I hear you, Laura! One of my biggest worries is if Alex has to go when we are out and about. If we are close to home, we will leave wherever and come home to do his business (he does not wear a diaper; we put it on him when he needs it). But, if we are traveling, that worries me. Thus far, he has been able to hold it until we get to the hotel. Takes awhile to set up, but it works. I am sure we will need to stop somewhere someday, and I am prepared to "talk" with any hotel to allow use of a room for the event. So far, we have been lucky in that regard. Thanks for commenting. All my best to you, your family, and Matthew!

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Kathy
8/25/2016 09:22:39 pm

My son uses a fracture bed pan that we got when he was in the hospital with a fractured Femur. He likes it better that the toilet chair.

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David Click
8/26/2016 11:27:09 am

Thanks for commenting, Kathy! I always wondered how it worked, and it sounds like it works well for you and your son. We nearly went that route. How old is your son? All my best!

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Becky
8/26/2016 12:51:00 am

My son Ben is 25 and usd to hang in the hoyer over a badoan on the bed. Now he just uses a regular bedpan that we roll him onto. He hates the fracture pans.

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David Click
8/26/2016 11:29:18 am

Whatever works, right? Sounds like you've had experience with multiple methods. Thanks for commenting, and all my best to Ben, you, and your family!

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A
1/29/2017 11:59:30 pm

Im 23 and I have this condition, As of now i just use the hoyer lift and just position myself above the toilet.

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Christina
8/26/2016 02:11:06 am

Thanks for posting this! I can so relate to every aspect of this article. In our family, talking about all things poop related is very common. Its the first thing I ask when any of my kids dont feel well. Four years ago, we almost lost my (at the time) 16 year old son who has DMD because his bowels became blocked, causing malnutrition and keto acidosis. Thisbhappened over time, also causingnhim to lose a consideranle amount of weight. We didnt realize he was so constipated until he couldnt keep food down and had to be rushed to the hospital. It was a huge shock to us, as he was still having BM's, but over time the impaction grew. Since then, he has been on a daily regimen of Miralax and lots of water and it has proven to be the most effective method keeping him consistent most of the time. I say all this because GI issues have always been the biggest issues as a result of the DMD. I'm glad we know more now and are vigilant to work against it happening again (hopefully).

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Becky Steubing
8/26/2016 10:44:49 am

Christina, that is so scary! Ben is 25 and takes Miralax every day plus a stool softener. He also has a feeding tube. Even with extra water in the feeding tube and the meds, Ben has gotten impacted twice this year. One time was in the hospital for a different issue, and because he was still pooping, the doctor refused to do a ct scan! He had to have a second hospital stay when his digestion shut down. Grr!!

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David Click
8/26/2016 11:47:04 am

Thank you for commenting, Christina! Very helpful experience! Alex occasionally has constipation as well, and can go days without a BM. We have learned to use Miralax as needed, but make sure he consumes A LOT of water per doctors recommendations. The downside is that he fills a bottle quite often. A fair exchange, if you ask me. All the best to you and your family!

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Steve link
8/26/2016 03:46:56 am

Hiya, although my Son is only four with DMD toilet changes are not too bad as he is still in nappies; he is due to move up to big school in September.

My concern is bullying; kids can be cruel and the other is who in the school will help him when he needs the toilet, or get cleaned up?

He uses movicol as he gets constipation and this does help albeit at times he does look like he is in pain from it all.

As a parent I believe I'm a good family provider; however the caring side I struggle with; I could never be a care assistant or nurse just isn't in my nature.

That said he is my Son and I will rise to the challenge, because he doesn't have a choice and he needs help in his life with DMD.

Steve (Owen's Dad).

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David Click
8/26/2016 12:09:39 pm

Hi Steve! Thanks for commenting. Your concerns are SO real! I know exactly how you feel. The best advice I can give regarding bullying is to pump your son with confidence that he is no different than anyone else. In our experience, I help Alex to understand that bullies are actually weak. I help him to be strong by considering their actions as childish and turn the other cheek. If they persist, I will step in and talk to the kid (kindly, of course) or teacher. In my view, your son's confidence will help control bullies. I recall one time when a kid stared at Alex's wheelchair and shook his head in disapproval before many others. Alex simply said "digging my wheels, huh?" Don't get me wrong, Alex is very sensitive and we have had many talks about bullies and exclusions...some even to tears. Our sons look to us for support and we must be strong so they can be, too.

As for school help, we are fortunate I am able to go to his school to take over his care. I have tried to train staff in the event unavailability, but that has been a challenge due to their time demands. Keep at it. Working with staff and administrators is key to addressing school needs.

I never envisioned myself as a caregiver, but we do what we need to do. All my best to you, your family, and your son! Keep pushing!

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Jeannine Pelletier link
8/26/2016 05:18:02 pm

Hi Steve, what a wonderful post. I certainly can relate to everything in your life. We did all those things with Nick, he started having problems with constipation when he was about 8 y/old. He was on Moralax & 1 or 2 stool softeners everyday. That kept him pretty regular. He had scoliosis surgery when he was 15, while in the hospital he contacted MRSA. He had diarrhea for over a week. We had to be there night & day to make sure he was clean after each BM. The hospital staff just couldn't keep up with it. After that everything seemed easy!! I also spent a lot of time talking, laughing & studying homework. I remember a time when he was about 13, I was still lifting him from his w/chair to the toilet but he was heavy. I lost my balance & we both went down. Thankfully, neither of us got hurt but we had to wait till we stopped laughing before we could get up!! We were very lucky with school. Nick had wonderful teachers & aides who went out of their way to help. In 7th grade, they were going on a trip to Wash., DC for a school trip. I wasn't able to go, so his teacher decided he would take him. They went & had a wonderful time. Came home with many funny stories about using a rr while traveling. At MD camp Nick had the most wonderful counselers, they taught how to use his urinal w/out taking off his pants. They took a mattress outside so he could camp out with the rest of the kids!!! One more thing, when Nick was about 10y/old, I talked him into sleeping in just a tee shirt, no pants!! Eliminating dressing & undressing once he was in bed for the night. He never did wear pants again in bed!! I tell you about all these memories of Nick bc we lost him last year. He was just 20 yrs old. I miss all this, the tears, the laughter, his courage that kept me strong. I would give anything to have him & all his problems back again. I miss him so much, I would give anything to hear him say "Gram, I've got to shit". He thought he was too old to say poop!!! Thank you for letting me share all this, it's not often I get to talk about that part of our life!!! Enjoy what you have, you just never know!!!!

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David Click
8/29/2016 12:12:33 pm

Jeannine, what a wonderful comment! Thank you for sharing life with Nick! He sounds like he was an awesome young man, and your love for him comes through loud and clear in your words. Please accept my condolences and sincere well wishes for continued loving memories. And you are SO right that we need to enjoy every minute that we have! All my best!

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Joyce
9/4/2016 02:25:57 pm

I too have been summoned to the school for toileting. Goob is 15 and completely dependent on his wheelchair. He went through a fusion from T2-S2 and said it felt better, it only has affected his ability to feed himself. We have an aid that is provided by the school for those hours and his family does the rest. He wears diapers on long trips and I take out the rear seam on his pants to allow easier toileting without need for a table. Yes, it is an adventure for sure. Keep on keeping on.

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