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Incontinence… ain’t nobody got time for that!

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Have you heard about the adult diaper spas that have opened in the UK and the USA. Yes, you read that right. It’s a place to nurture and pamper diaper lovers and enthusiasts. It actually caters to people with a psycological disorder that’s been growing among adults over 21.

Sorry, but I don’t see the fun or joy in having to wear a diaper because my bladder or bowels aren’t working correctly. Yes, I have had problems with bedwetting before… but the previous time was when I was five years old!

When I was in the hospital last year I wasn’t able to make it to the bathroom on my own and my bowels were like clockwork. I had to go every morning by 6 am but since I couldn’t get out of bed on my own I wore an adult diaper and the nurse had to clean me up because I made a mess. Two weeks of diaper changing was enough for me.

I was in the hospital to have my bladder removed. For about 7 years I had used a suprapubic catheter (SPC) for bladder incontinence. The catheter was placed in my bladder to help empty my urine but the SPC wasn’t working well for me and of all things it was painful. I had bladder stones that were causing me problems and blocking the flow. When the urologist had recommended removing my bladder entirely I was a bit nervous, but excited as well about the concept. I thought, this will make my life a bit easier to manage than it has been. I’m ready for anything that will help me out.

When I finally got home from the hospital after my bladder was removed, I was able to manage things on my own and so happy. It’s been a year and I believe it was one of the best changes for me since my MS diagnosis over 10 years ago dealing with continued incontinence troubles. I now have a pouch I wear on a stoma the doctor created for my bladder. The pouch is my makeshift bladder and sits outside of my belly area near my belly button. I replace the pouch about every 3 to 5 days but empty it as often as needed like you would a normal bladder. No more issues with trying to hold my bladder and making a beeline to the toilet.

I have to say laughter is the best medicine unless you are dealing with incontinence. I had a feeling of relief knowing that I wasn’t the only one who leaked a little when I sneezed, moved around, or coughed. I wasn’t the only one that had to change their clothes after misjudging their bladder timing.

There’s nothing wrong with finding humor in the uncomfortable aspects of life. Certainly leaking pee is something that happens to many people with multiple sclerosis and although there are certainly degrees of it where some find it obviously debilitating, others just find it annoying. There’s nothing to be ashamed of when it comes to having a badder that rebels. Humor really does help. I talk with people a lot about incontinency. I just can’t hold it in. (grin)

Even if your experience isn’t that bad like it only happens once in a while or it doesn’t disrupt your life very much, there are still reasons to address it. The good news is that it’s never too late to strengthen your pelvic floor. Ask your doctor about it or even your physical therapist about which exercises help. I wasn’t able to use those muscle but for many people doing pelvic exercises helps restore controlled use of the bladder.

Either way, just keep in mind that although there is nothing to be ashamed of when you leak pee, you are certainly far from alone. Will you make it to the bathroom in time? Depends! – they really do help. (Grin)

My muscles are freezing up with the weather

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When I woke up this morning and I truly felt awful. The worst I have felt in a long time. I sat on the side of the bed for about 15 minutes trying to determine if I could even make it to my powerchair. I finally transferred but then had difficulties in the bathroom just trying to brush my teeth. I was struggling to put toothpaste on my toothbrush. I didn’t have enough strength to squeeze a tube of toothpaste with my right hand while holing my bush in the left. I decided to sit in the shower on the shower chair and brush my teeth in there because I have a toothpaste dispenser that can do all the work for me. No shower… just a good tooth brushing.

Just that little bit of work was exhausting to me. And besides it has been below freezing here lately so I can’t move to do anything in the cold. My muscles are all stiff and not helping me out. With me trying to conserve money I don’t run the heat as often as I normal would run it to keep me warm. I’m actually sitting in my lift recliner right now under a heated blanket just to stay warmed up. Electric blankets are amazing.

My hands have been giving me a lot of trouble lately. The stiffness in them just makes everything a quadrillion times harder. I’ve been having a difficult time holding onto anything. My utensils, my coffee cup and even a sandwich. I was able to put together a PB&J but with difficulty. I spilled a jar of jam in the process. As soon as I was able to get some jam on a spoon it would fall off. When I tilted the jar I couldn’t keep the jar steady and it came off the counter crashing the floor. It made a mess that I didn’t want to clean up but knew it would become a sticky mess if I didn’t. By time it was cleaned up I was too tired to eat it. Ugh, such is my life with multiple sclerosis.

Even though my muscles are giving me troubles, my bowels are too. I normally try to use a product like miralax daily to help me out but haven’t had any around so I’m actually going to try a tablespoon of caster oil to help me out since I have some in the cabinet. I have been told that it will loosen things up quick… and by the way my belly feels right now, I know it will make everything better once things come out.

Those are the things people don’t like talking about, but they are real and affect more people then you realize. Oh, and my mom came by the other day and brought me a couple of jars of daily vitamins… the gummy kind. I wasn’t expecting it but it made my day so much brighter. She said she just saw them in Aldi and thought, “Hey I need some of these. Let me buy some for Penelope too.” She’s so great like that. What a blessing. I don’t know if people understand that something so small as a bottle of vitamins can really make a big difference. Anything people can do for others to put a smile on others faces matters.

What if we let people know that they are loved. Not by spending lots of money but by sending a card, writing a poem, sharing a meaningful song, or doing something unexpected. There’s so much we can do even with MS causing us trouble.

I’m sending you my own encouraging note this morning. Take this crazy MS life a day at a time. More than anything, I want you to know that you are always loved. It’s the only thing that really matters. There is so much ahead for you. I know life can be hard, but you are going to make it. Keep hoping for a better tomorrow because tomorrow things could be better. Never stop hoping, never stop trying, never stop believing, and never EVER give up.

MS bladder issues, when it rains it pours

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I don’t like days filled with constant surprises and uncertainties but living with multiple sclerosis is going to have its share of unpredictability. One day things could be going great, the next it could turn out to be an awful day. And sometimes it doesn’t even happen by days but by moments. Like Forrest Gump says, you never know what you are going to get… with a life of MS.

There are different things people can do for their bladder issues. It’s important to determine the type of urinary issue you have. Some deal with physical therapy learning ways to strengthen the muscles the bladder uses, there are medications to support incontinence, there are support devices that help train the bladder to properly function, but if those treatments aren’t working there are several surgical procedures that can treat the problem.

Ten years ago I had surgery to place a suprapubic catheter in my bladder to help aid in the emptying of my bladder. I no longer had muscle control of my bladder so I was unable to properly manage its usage. It took time to get used to but I was thankful for having it done. My bladder was finally able to be drained to an external bag rather than me peeing all over myself and life was great once again. It was a learning curve but it made life easier for me.

Over time my bladder had created stones causing drainage troubles. I had surgery to remove them but was still having bladder issues. The nurse was having difficulties each month removing the Foley catheter to replace with a new one. My body just seemed to think the catheter was a part of my bladder and would try to seal the opening making the removal each month painful due to it trying to attach itself to my body.

My urologist had suggested I have my bladder removed to alleviate the problems. After taking time to think about it and reading about having it done, I approved the surgery February of this year. It’s been 6 months and I’m so glad I had it done.

I had to learn how to attach my newly needed bladder pouching system which wasn’t too difficult to deal with. A stoma was created to properly drain the urine my body creates I just no longer have an internal bladder for it to empty into. My bladder is now an external pouch / bag. I just have to make sure I wait until early morning to change it out because that’s when I have better usage of my hands.

It can get comical when I try to change my pouching system after having a lot of liquids in my system. My stoma which controls my urine will shoot urine out in a quick stream and without the pouch in place it’s equivalent to me peeing on myself. I usual change it out in the shower so I can have a clean belly to work with. But like most people learn with their pouching system, it’s suggested to replace it while standing up so you can properly place it. But for me, that’s not possible.

My routine is to take a shower to clean myself up, dry myself off, place a dry washcloth over my stoma so if I pee out the cloth will catch it, put my robe on and transfer to my powerchair, make my way to the bed, get comfortable lying down on the bed, prepare my pouch to place on the stoma. Normally by that time I’m thankful I placed the washcloth over my stoma because I will have peed a little in the process of getting ready for the new pouch.

When I get the new pouch on, I’m ready for a nap but also thankful that I got it all done by myself… no nurse needed. Then I get dressed and normally make my way to the living room and rest on my new powerlift recliner. I normally have to change the pouch once every 4 days. Sometimes I can even go as long as 5 days before changing it out. But of course there are also time I have to change it much earlier due to not placing it properly and the pouch pulling loose from my belly much too early.

I know it sounds complicated, but what part of MS isn’t. I’m thankful I don’t have UTI’s anymore or pain like before with a Foley catheter so the pouch change is nothing compared to my issues before. I’m thankful for bladder surgery to remove my bladder. It’s not something for everyone, but it’s doable. As long as I can keep doing things one handed, I will be able manage it for a long time by myself. I’m too stubborn and independent to do it any other way.

Don’t give up hope on ways to manage your bladder issues. There’s always a solution. Maybe not the one you want, but one that will make life easier for your already complicated life. Bladder issues aren’t the end of your life and neither is MS. Talk with your urologist about things that may help you out. You got this.

Bladder issues with multiple sclerosis

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I have had an SPC (suprapubic catheter) for over 7 years now. It’s a device that is surgically inserted into the bladder to drain urine because I can’t properly urinate on my own. At the beginning of my multiple sclerosis journey I was having problems being able to void my bladder. I lost muscle control which caused me a lot of problems. My MRI showed lesions on my spine where the bladder is controlled. They cut off my ability to use my bladder muscles.

I used to say my bladder was conspiring against me because as soon as I would get home from work and opened the front door, my bladder would let loose and I would have a puddle in my entryway to clean up along with myself. When the urologist suggested an SPC I thought that was the answer to my problems. That is until I discovered some issues with living with an SPC. No one tells you about that.

What I discovered is that sometime the catheter doesn’t drain properly because of bladder stone, increased sediment in the bladder, unwelcome UTI’s and of all things, a faulty catheter. Yesterday I called home health because my catheter was clogged and wouldn’t drain. Every time I drank something, within 15 minutes I was uncontrollably peeing on myself meaning the catheter wasn’t draining as it should. I had a load of laundry after two days of fighting with the clog.

When the nurse came to change my catheter I was so glad because I needed my coffee. It’s crazy how that was my main thought. Not the problem with cleaning things up constantly or running out of clean clothes or even a clogged catheter, but coffee. As I’m writing this I’m enjoying a fresh cup of coffee. Ah, yum! I’m glad a catheter change worked.

If you would have told me MS had this kind of trouble I wouldn’t have believed you. I thought a catheter was a good thing, but I have noticed it can be a blessing and a curse. That’s true for a lot of MS symptoms. I always thought my tremors were a curse but I discovered that when I uncontrollably kick someone or slap someone that says something stupid, I can blame it on MS. Oops… sorry, that was a spastic moment.

Or when I forget an important event that I really wasn’t interested in. Oops… sorry, my brain doesn’t work right and I forgot. (grin)

Or when I can’t remember a show that I previously watched… that’s just my reason to watch it again and be surprised at the outcome.

There’s always a way to look at things differently. Don’t take a life with MS too seriously. Besides smiling is a lot better than a frown. It helps your immune system to function more effectively. It is thought that when you smile, your immune function improves because you are more relaxed. So smile! It does a body good.