I was diagnosed with MS in 2010, after a Stroke. All was fine until two years ago when my Wee machine stopped working. So they fitted a Catheter and where it’s been removed and refitted four times after suffering relapses within Twelve Hours.
Then the Poo side stopped without strong Laxatives. My walking is only very short distances or my right leg goes like jelly and then I fall over.
I have a sick Wife to care for too and without any help from the State. I paid my taxes and stamp all my life, so why now should I have to display all to qualify.
Now the Hospital want to do an internal examination of my Bladder and which now makes me feel so old.
Does anyone else have these symptoms ?
Hi TR, my symptoms are all the above [except the wife who’s got arthritis but is doing well at the moment]. I got diagnosed 34yrs ago and was working on building sites until 8yrs ago. My bowels started doing what they wanted 20yrs ago so I was carrying a bin bag and loo roll in my pocket for emergencies [sometimes didn’t find somewhere to hide quick enough so it was back to the van and spare clothes] now I use Qufore irrigation which is basically a jet wash for your bowel which gets rid of content and gives you a few hours to get to appointment without worrying about toilets. Bladder has been hassle for about 10yrs, not a problem for a man if you can find the back of a tree or something. I was using self catheterisation for the last 6/7 yrs to try and stop me getting up in the night for the loo but that stopped helping about 2yrs ago when the ‘riverdance’ thing with my legs got bad and I would wake up and head straight for the loo about 4/5 times a night. For the last 3 months I’ve had a superpubic catheter fitted which is a tube hanging out below your belly button and at first I had a bag plugged in during the day and changed it at for one with a longer tube for night use. For the last month I’ve had a Flip/flo valve which means you can empty your bladder when you want and still put a bag on at night and a day bag on if you are going to be away from a loo for a long time and don’t want too risk any accidents [or you’re not going to be near trees]. For years now I have felt ready for the scrap heap and tell the wife to take me to the vets because its cheaper than Switzerland but it’s something I have to learn to live with, it is hard but can be done. The camera bladder thing is pretty easy and you get to see the inside that looks like an A to Z map book page.
Your not on your own! It is horrible and insulting you (may)have to prove disability. I’ve had a Catheter for x3yrs and find the benefits are far outweigh everything else despite being 58 (tried everything, (have the good/bad memories) - dignity, dry, sleep.
Yes one’s dignity has long gone, apart from the obvious urges. I’m 73, married four times and have 7 to 8 children. Rallied and raced cars. Flown Gliders and a couple of short runs in a Cesner prop aircraft.
First Wife produced four, then got bored because I wanted to build our empire. She had an affair and went off. The second had acute Post Natal Depression after having our two children, but then went totally off the rails and which ended our marriage. The third was my Children’s Nanny, some 16 yrs my junior and was the love of my life.
Sadly misdiagnosed during the final stages of her pregnancy and died aged just 29. My final marriage was great until she suffered a Stroke, leaving her with Acute Anxiety Disorder. Then my MS hit and it was game over.
I’ve owned and run TV and Building Company’s Businesses. However now confined to my home, except for light shopping.
I just wish the Doctors would talk to me with some constructive dialogue. However I think they’ve used Covid19 to run for cover.
What do you think ?
Thanks for your ongoing issues and sorry they’ve plagued you so much.
I was a Businessman up to a few years ago and still run my late Wife’s Charity, a Not for Profit Company and working ,by email, with a London Studio who are preparing to make a Movie from her Autobiography “ Shattered Dreams “. It’s all about a happy go lucky very young Nanny, who falls in love with her Boss, being me.
We marry and a year later she’s due to give birth, only The Consultant miss diagnosed her Preclampsia and as a result she eventually dies, aged just 29.
So although I remarried 26 yrs ago, pledged to continue her Charity and assist The Film Company in making her Movie.
To be honest one of the worst parts is our sex life stopped over a year ago, with the Catheter fitted.
Have you any ideas on that ?
Still concerned about the Camera thing into my Bladder as they say there’s a dark patch in my bladder. Obviously don’t want them tampering with it because of you know what. Any ideas on that too ?
Hi TR. I truly sympathise. I was diagnosed with RRMS in 2014 (had a stroke in 2002). I have recently had a faecal accident whilst walking back from the doctors. A seven minute walk! I was caught between the two places. My bowel is generally constipated, but this time it had the devil about it. I am off sick at the moment, with no hope of even speaking to GP. Luckily, I have a bi-annual telephone appt with my MS consultant next Tuesday. All I can say, is be more assertive with your Doctor, and insist you need help. Take care. Alison
Hi again, with the Superpubic catheter and a Flip/Flo valve all the extra bits can be taped/strapped out of the way so shouldn’t interfere your sex life and I don’t think the camera would cause any trouble or they wouldn’t consider doing it, but pick their brain again just to put your own mind ar ease. Good luck with the film hope it all works out.
Have you contacted Age UK? They offer a Counselling facility that might be of use to you and, I think, an Advocacy service which might help with the GP side of things. Being able to shout out on this site will get you a lot of ears to listen and no judgement.
mine is constipation, i use a glycerine suppository its bliss. its natural too so the doctor said i can use them when i need too. I would be bunged up otherwise lol. xx