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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.


  • This topic has 22 replies, 8 voices, and was last updated 1 month ago by Dick.

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      • #11940
        Kevin Schaefer
        Keymaster

        In my column this week I write about some of the nuisances that we as SMA individuals have to deal with on a regular basis. Getting comfortable in our wheelchairs is one of the things I brought up, but another issue has to do with going to the bathroom.

        There are different “strategies” for this. Some SMA folks prefer to have a caregiver transfer them out of their chairs to use the restroom, while others use a urinal or catheter. I wear an external catheter so that I can remain in my chair throughout the day. However, there are complications that can stem from this method. If my catheter gets loose or isn’t put on correctly, I have to transfer out of my chair and repeat the entire process of getting dressed, which can be very time-consuming. Overall it works, but as you’ll see in my column there are obstacles I have to work through.

        What about you all? How do you go about taking care of your bathroom needs?

      • #11941
        DeAnn R
        Keymaster

        Definitely a pain to deal with.  I don’t have a catheter or anything like that.  Once a day I have my PCA transfer me with the hoyer to use the commode.  Certainly is a process.  Luckily I’m a routine person, so only have to beckon someone on the rare occasion for an extra bathroom break.  Otherwise I just make it part of my morning, midday and bedtime routine.  I’ve been intrigued by the SPC or Mitrofanoff as alternatives, but what I’m doing works for now.

        • #11946
          Kevin Schaefer
          Keymaster

          I hear ya. Yeah with the catheter it’s just a matter of training the caregiver to put it on correctly. It can be tricky, but usually my caregivers get the hang of it pretty quickly.

          And yeah I either use the commode in the morning or at night when my caregiver is with me. I agree that having a routine helps reduce the likelihood of getting up in the middle of the night to go.

      • #11949
        Adnan Hafizovic
        Participant

        Like both of you Im a routine person.I don t use catheter ,I have luck that I can urinate in how to say in medical bottle.But of course I need privace when I do that.And that privacy is hard to find when I go somewhere.

        • #11950
          Kevin Schaefer
          Keymaster

          I can imagine. During the summertime I use a urinal or bottle when I’m wearing shorts, but yeah it’s hard to find the privacy and the space to do that. And for me it’s just more uncomfortable and awkward. With the catheter, the big advantage is that I can go anytime without assistance. If either of you have any questions about it let me know.

      • #12110
        Michael Morale
        Keymaster

        When I was a kid going through school, I had to train my bladder so that I could make it through the entire school day without having to go to the bathroom. This was a pretty simple task because I would just limit the amount of liquid I would drink during the day. If I had to have a bowel movement while I was in school, my mother would have to come up and get me and take me home. Once I was finished, she would then take me back to school for the remainder of the day.

        This routine that I followed in grade school was also the routine that I had for high school and college. As I got older, and my father became increasingly weak due to Parkinson’s disease, I decided to have a colostomy. I found a fantastic colon rectal surgeon who agreed that a colostomy would definitely help me live a more comfortable and functional life. I have full control over my bladder, and my colostomy allows me to go about my day without worrying about having to go home. This also allows me the freedom to go out to eat and to socialize with my friends, and it’s one less concerned that I have to deal with as I get older.

        While a colostomy was a major procedure, it is definitely a procedure that I would recommend to anyone if the circumstances were the same as mine. Everybody is different and while some people may have someone there that can help them, my colostomy gives me peace of mind that has forever changed my life.

        • #12114
          Kevin Schaefer
          Keymaster

          That’s great Michael. It’s interesting seeing the different responses to this question. I don’t think most people realize that people in wheelchairs have to develop creative solutions in order to pee!

      • #13093
        Krista Brodeur
        Participant

        Hello! I’m new here but going through an interesting issue. Ahhh finally people that understand!!

        Anyway, I was always able to transfer on my own to the toilet, so it was never an issue. However about 2 years ago I fell in the bathroom at work and I couldn’t do it anymore. Went and got super pubic catheter, best choice ever! Now I drink whatever I want and whenever I want!

        Now my issue is using the bathroom for a bowel movement! I have lost a lot of the muscle and this has lead to a long annoying road of needing help with transferring more than before.

        i can’t eat anything throughout the day! I can’t have a sandwich and sometimes I can’t even have a tic tac! It’s so unpredictable. As soon as I eat, or sometimes even if I don’t eat, I need to call someone to help me use the bathroom. It’s fristrating and there isn’t always someone around. Then I run the risk of going in my pants at work, I can’t have that happen. I just can’t!

        so I went and spoke with my family doctor about a year ago and asked for a referal for a cecostomy. That was terrible, the one doctor refused to do it because he didn’t think I needed it. Then I found another doctor fairly far away from me but I was willing because he was! He sent me for tons of tests and finally the time came to set up a meeting. I called and he said he doesn’t know who I am and never sent me for tests! I was so upset!

        anyway, fast forward a couple months and my family doctor found a surgeon that was willing to discuss colostomy with me. Perfect! This would give my mom her life back and would give me my life back too! So I went and saw him May 7th and he said he was willing to do it but wanted a colonoscopy, ok no problem! Earliest apt was July 6th, fine. I went and did the colonoscopy and the surgeon said it was fantastic! Great. So I make an apt for yesterday as he asked, he said to me that he wanted a second opinion from another surgeon he works with. Because he wants to see if there’s any other options for me first. This is so frustrating! I have to live with this daily, it’s affecting my life and my work and it’s draining me! I did some research and I guess another option could be the K Pouch, but that to me seems way more invasive than the colostomy since I can still feel everything and I am continent.

        Anyone know of any other options that maybe I’m not looking at?

        • #13094
          DeAnn R
          Keymaster

          Krista, sorry you’ve been having to deal with this issue, but rest assured you’re not alone!  That’s why I pointed you in this direction.  I know Michael Morale has had a colostomy, so hopefully he’ll chime in too.  As far as myself I’ve had to try (try being the key word) to be on a bowel routine so I go when a pca is here.  Have you tried probiotics?  They can help regulate your system.  It can be really frustrating not being able to eat what you want when you want.

          If you don’t mind my asking, are there any drawbacks to having an spc?  No one has ever brought it up to me, but I’ve heard such positive things.  Maybe I’m missing out!

      • #13105
        Krista Brodeur
        Participant

        Hi DeAnn

        thank you for bringing me here! Finally people that know what I’m going through. Although I’m sorry you guys are too, there’s some comfort knowing I’m not the only one!

        The SPC (Suprapubic Catheter) has been a total life changer! I love it! Her name is Penelope – get it Peenelope! Haha oh I crack me up! Anyway, surgery was about an hour and I was out having dinner with friends that night! Also, you don’t need to be attached to a bag! There’s such things as valves and that’s what I use. I open the valve over the toilet to go and then close it and put it back in my pants resting on my legs. It’s had its pains, bladder spasms suck but I’ll take them all day long instead of having to call someone to help me transfer! Also weight loss with it is great, since you can go whenever you want/need to! I’m happy to answer any questions, just let me know!

      • #13107
        Michael Morale
        Keymaster

        Krista,

        Your story is exactly like mine. My name is Michael Morale and I will soon be 53. About eight years ago, I too was facing the same challenges that you are. My father, who was my primary caregiver for many years, began suffering from Parkinson’s. It became quite a challenge for him to put me on and off the toilet, so I found a colorectal surgeon in my area who was willing to do the surgery. He knew that this would make my life easier and even though I didn’t necessarily need a colostomy for medical reasons, he made it sound like I needed this for my insurance so that I would qualify for the surgery. He knew that a colostomy would make my life easier.

        If I can make one suggestion, it would be to be honest with the doctors. Let them know that you do not always have a caregiver present when you have to go to the bathroom, and that by having a colostomy, you would be more independent in your daily living.

        If you would like to talk to me on the phone, let me know and I will send you my phone number. I know that this is an embarrassing topic to talk about, but that’s one thing I like about all of these forums with SMA News Today. It brings all of us together under one roof and we can speak openly about even the most embarrassing topics without feeling like we are being judged. Congratulations on joining our group, and I can probably speak for everyone by saying that we will be more than happy to help you in any way that we can.

      • #13110
        Michael Morale
        Keymaster

        Krista – you are absolutely right. The colostomy that my doctor did for me is totally 100% reversible. When they do the colostomy permanently, they actually close up your rectum. Since my colostomy is reversible, I can, at a later date, let them go back in and reconnect everything as if I never had the surgery. My doctor decided that this would be the best for me, given the fact that something could happen where I would regain strength and be able to transfer on and off of the toilet like I used to. The likelihood of this happening is not very great, but, I’ve never been one to put the chicken before the egg.

        I still sit on the toilet every night, but that’s just because part of the colon that is still connected to the rectum, produces a small amount of liquid. This is a clear liquid that builds up during the day and it is very easy to expel.

        I know this is a lot of information to try to absorb, but I’ll be more than happy to answer any questions that you have.

      • #13111
        Krista Brodeur
        Participant

        My doctor and I have voted for a permanent sigmoid end colostomy. I’m sure one day there will be a miracle and I’ll be able to walk again (another eye roll) BUT I will walk and have a bag. And I’m totally ok with that! I’m sure I won’t be the only person magically healed and have a poop bag! Lol

        i just don’t see the purpose of doing a much more permanent surgery and remove good self sufficient colon!

        I can’t wait to see what this other surgeon might say! I am interested to know if maybe just maybe they have a suggestion that I haven’t researched or thought of.

        I just hope this apt doesn’t put off my surgery date, I’ve been waiting a long time for this!

      • #13112
        Michael Morale
        Keymaster

        I understand your feelings. Trust me, you are the only one that knows what’s best for you. I’m glad that you joined our forums. It’s a great place loaded with a lot of great people.

      • #13113
        DeAnn R
        Keymaster

        I have always thought if I didn’t have to poop or pee life would be great. I’m just not willing to go through surgery to make it happen.  Keep us posted on what you decide Krista.  You have a whole community of support behind you!

      • #13117
        Ryan Berhar
        Keymaster

        Fortunately, I have always had someone who can transfer me to a bed or table, so taking a leak has never been much of an issue. Bowell movements are more complicated. Only a couple people can help me with that. Sometimes I just have to be in discomfort for a little while. There just isn’t a great solution. Not the end of the world though.

      • #13120
        Krista Brodeur
        Participant

        Michael, I do have a question actually! How long were you in hospital and how long until you could go back to normal life?

        i work, but I sit at a desk all day and I work from home. Also because I don’t walk, I imagine recovery would be a bit different than your average person since we can still heal while sitting and not making it worse.

         

        Thanks!

      • #13123
        Michael Morale
        Keymaster

        Krista,

        I was in the hospital for a total of five days after my surgery, but I think the doctor I had kept me in the hospital a little longer than most of his other colostomy patients just to make sure that everything was working the way it should. The surgeon that performed my surgery was probably one of the best surgeons that I’ve ever had. He wanted to make sure that I had everything under control before releasing me from a hospital. I would imagine that, after your surgery, you will probably be in hospital for a few days so that doctors can make sure that the bleeding is under control and that you are ready to go home.

        About a year before my colostomy surgery, I had to have my gallbladder removed. This made my recovery a little bit different, but with regards to returning to normal life, everything was pretty much normal after I got home from the hospital.

        I hope the information that I gave you helps. Let me know if you have any further questions.

      • #21654
        Mike
        Participant

        Hi everyone. I’d like to up the topic once again and hear your opinion regarding the external catheters.
        Like a lot of people in this thread, all my life I was transferred by someone else (mostly my family members) if I had to go the toilet. It was always annoying and awkward that somebody has to stay with me, but as Ryan wrote above – it wasn’t the end of the world.
        However, now I’m trying to get rid of this situation, bring more independency into my life as well as simplify the life of family members.

        I believe the most suitable way to achieve that would be an external catheter. But I wonder if somebody here has tried to use it with a valve instead of a leg bag? If so, what kind of valve have you used? Have you experienced any problem with that? I hope it doesn’t require a huge arm strength in order to open the valve.

        I see a lot of advantages in a valve. E.g. bladder is kept in shape, the risk of infection and leaks is less with a valve than with a leg bag, more confidence, etc. But there’s also a chance that I just overthink about all that advantages.

        Thanks for your answers in advance.

        • This reply was modified 1 month, 1 week ago by Mike.
      • #21656
        Mike
        Participant

        Hi everyone. I’d like to up the topic once again and hear your opinion regarding the external catheters.
        Like a lot of people in this thread, all my life I was transferred by someone else (mostly my family members) if I had to go the toilet. It was always annoying and awkward that somebody has to stay with me, but as Ryan wrote above – it wasn’t the end of the world.
        However, now I’m trying to get rid of this situation, bring more independency into my life as well as simplify the life of family members.

        I believe the most suitable way to achieve that would be an external catheter. But I wonder if somebody here has tried to use it with a valve instead of a leg bag? If so, what kind of valve have you used? Have you experienced any problem with that? I hope it doesn’t require a huge arm strength in order to open the valve.

        I see a lot of advantages in a valve. E.g. bladder is kept in shape, the risk of infection and leaks is less with a valve than with a leg bag, more confidence, etc. But there’s also a chance that I just overthink about all that advantages.

        Thanks for your answers in advance.

      • #21664
        Kevin Schaefer
        Keymaster

        Hey Mike. Yeah the catheter I use has the standard leg bag, and I’ve never used one with a valve. Though it is an option. If you have any other questions about the external catheter, let me know. It is a great option, and I love not having to transfer every time I have to go.

      • #21706
        Dick
        Participant

        While my colostomy was not voluntary – – I had a diverticuli rupture, went into septic shock and did not have to wait for surgery to be scheduled or engage in debates with docs who take the injunction of “First do no harm” so seriously that they are too conservative in discussing any elective major medical procedures that entail any risk– – the operation by the ER surgeon on duty when the ambulance personnel wheeled me into the hospital (fortunately, an oncological surgeon who specialized in cancer of the stomach, colon and other organs in the general area) was performed immediately and saved my life. What I did not know is that it would simplify my life considerably. Prior to the operation, the process of bowel movement involved my aide transferring me from my wheelchair to my bed using my Hoyer type lift, removing my pants and underwear, getting me back in the lift, wheeling me to the toilet, transferring to the toilet and then the entire process in reverse from toilet to lift, from lift to bed, redressing, back in the lift and back to my wheelchair. Not counting time on the toilet, the process involved a minimum of 20 minutes and usually closer to 1/2 an hour. After the operation, the non-– actual toileting time is zero. And I never wondered what will be the situation getting to a public toilet when I am outside of my house. Indeed, I have been known to smile very contentedly while walking in the aisles of Whole Foods, and the other shoppers have never figured out why! Yes, there is time involved in dealing with the ostomy pouch, but it is almost always at a time of my choosing, and has become as regular a part of my routine as brushing my teeth. The septic shock kept me in the ICU for 3 days while it was touch and go whether I would survive, but I really do look back on it as causing one of the best improvements in my daily quality-of-life.

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