9. Supra pubic catheter

I had a supra pubic catheter put in recently. It's a minor operation that involves them drilling a hole into the base of  your bladder and inserting a tube for drainage. It sounds awful, but it's not an issue, because they do it under a general anaesthetic. 

It's just like having an in dwelling catheter, but it completely bypasses the urinary tract and more importantly it means I can get an erection and have sex again.

Well it's been ten days since I had the operation and in that amount of time, there have been some positives and some negatives. 

Let's get the negatives out of the way. What a fucking nightmare it's been! I had the operation in the first place, because I was getting so many infections in my urinary tract and guess what I come out of hospital with? Yep, a urinary tract infection. I had a few days after the op where I was constantly wetting myself. No urine was making its way into my newly acquired catheter, because the instant any fluid touched my bladder, it passed out the natural route. 

Something is wrong with the catheter, I told myself. Is it blocked, I wondered? This carried on for a few days and on one of the district nurses twice daily visits, I was strongly  advised to go back into hospital and have it looked at. 

So, back I go, onto the ward again for them to investigate as to why my catheter wasn't working and why I was constantly wetting myself. 

To cut a long story short, they discovered that I had a urinary tract infection, started me on a course of antibiotics, with the belief that that I would now start draining fluid through the catheter instead of my pants. 

They kept me in over night and in the morning, the fluid that had left my body had left my body, the way the surgeon had intended as opposed to how nature had intended. 

We're coming to the positives bit, right? Well, no, not quite. They told me I could go home that lunchtime. The good news is that I'd already had my chicken, sweet corn and mayo sandwich already - and very nice it was too - but the not so good news was that they told me that I couldn't take home and finish the course of antibiotics that they'd started me on because they were concerned that I was building up an immunity to them, because I'd had a few courses of them recently. 

Since I was discharged, I have drank gallons of water and I feel like the infection has flushed out. 

Now we're at the positives part. 

My catheter is now working perfectly and I'm no longer wearing nappies. The nurses call them 'inco pads', but they're basically nappies for adults. Three days clean. Hurrah to me and hopefully, it'll be plain sailing from now on. 

What a nightmare though. 

Regards 

Dan. 

8. Electric wheelchair

My Electric wheelchair turned up the other day. It was Thursday and the kids were coming over after school, like they usually do, so my Carers put me in it, meaning for the first time in months, I could take them to the chippy to get our dinner. That sentence was a mouthful!

Anyway, it is comfortable to sit in. I was hoisted into it at half seven in the morning on Friday and I stayed in it until my Carers put me to bed at nine o'clock that night. That's nearly 14 hours. I was uncomfortable in it for the last two or three hours, but that means I spent a good ten hours in it in comfort. 

As you know, I was having difficulty sitting upright in my scooter and in my wheelchair, the discomfort was affecting me within a couple of hours. 

There is one fall back though. It doesn't feel very stable when I'm out on the streets. The front wheels are tiny compared to my mobility scooter and every bump - drop kerbs even - I go over, throws me about the place. 

I can't drive it as fast as my scooter either. It does go as fast - a ground shaking four miles an hour - but it isn't possible to control the wheelchair at top speed as well as the scooter. I have tried and failed! I crashed into a wall at the weekend and broke one of the foot rests. I'll probably have to pay to have it repaired. 

Oh well, living life in the fast lane does have its disadvantages. 

Dan

7. Adapting to adaptions

It's been a few weeks since I last wrote to you, and a fair bit has happened in that time. 

Firstly, I've had a hoist delivered, which enables the carers to lift me up off the bed each morning, so I'm no longer bedridden. They take me from the bed to my riser/recliner chair, and once I'm in that, I can rise myself so that I'm standing, which enables me to get into my mobility scooter, thus enabling me to go around the town again and cause carnage!

I've also been given a hospital style bed. It means I had to get rid of the double, but that's a small price to pay when you bare in mind the bed is electric - it raises, it lowers, it sits me up. It even makes the tea and the toast!

Things are going well with the carers. They come in four times per day. I need them in the morning, and also the evening visit. I rarely need the the lunch or afternoon call, but I found out that if I cancel the call, the carers lose money, so they still come round, and we have a tea or coffee, or something. 

I'm booked in to have an MRI scan next Monday. That will tell me a few things. It will tell me whether I've had a relapse recently. If, as I expect, it shows no new disease activity, it will add weight to the argument that I've entered the secondary progressive phase of the illness when I see my Consultant a few weeks later. 

Whilst I'm at the hospital next Monday, I've got an appointment to have an ultrasound scan on my abdomen. They want to look at my liver. As already said, blood tests have shown my liver function levels are high, so it looks like one way, or the other they'll be stopping my disease modifying treatment quite soon.

Kind regards,

Dan

6. Liver

As you know, I've been bed bound since Friday. I feel a lot more positive about it today - so far - than I did at the weekend. 

Have I accepted my fate then? Dunno. Have I got used to my predicament then? Dunno. Do I think that I will get the physical levels that I have experienced of late back? Dunno. So it's a relapse then? Dunno.

There are more questions than answers. Only time will be able to tell me what I'm looking for, and I have plenty of that. 

I'm not so sure it's a relapse. I haven't had one for over two years - since before I started taking Gilenya. I've been labelled up as 'relapsing remitting MS' but I've been slowly progressing for about five years now. I think that's called 'Progressively relapsing'. There's my own diagnosis for you. 

I am also, in my wisdom considering knocking  the Gilenya on the head. Am I mad? No. I'm thinking along these lines for two reasons. The first is that age old conundrum that many of us have at some point or another, ' My disease modifying therapy isn't working anymore'. Nobody can tell you that with any certainty and the only way to find out is to stop taking it. Lots of risk with little to gain. 

The second reason is a bit more serious. The results of my liver function tests have gone through the roof! I've been having regular blood tests since I started taking Gilenya, because it can affect the liver. I've given no less than six test tubes of blood last week. They looked for everything from drink/drug abuse to Hepatitis B and C. All have come back clear, so I can safely assume that my disease modifying therapy is the culprit. 

I will - hopefully - speak to my MS nurse today and get them to speak to my Consultant about my concerns. Unless they strongly advise against stopping Gilenya, or they tell me my liver function test results are not dangerous. I'll probably knock it on the head. 

Kind regards,

Dan

5. A Shitty Story

I haven't written recently for a number of reasons. The first is fatigue. Yeah it's back. Back with a bang. I'm lucky if I can get out of bed by 11. Quite often, I miss lunch, it can get so bad! 

For the first time in what feels like years (this year anyway) I have woken up on a Saturday morning at half eight, bright and energetic.  I'm normally up by now on a Saturday anyway, to get my son ready for football practice, but that involves an alarm and multiple snoozes. 

I won't lie, I have laid in bed doing nothing until my recent 'normal' waking time anyway. But I feel really good today considering...

Considering what? Considering I shit myself yesterday! It was awful I was at the MS therapy centre Charms, just like I usually attend on a Friday and I felt a familiar urge I can usually hold that urge until I am at a more suitable place to go. This time I remember thinking, "I'd better go now!" I made my way to the toilet and that was it, my bowels erupted! I unleashed a full bowel into my pants. "Fucking Hell". I cursed. That wasn't even a two minute warning.

Mum, as usual tried to justify it by asking if it could be the prawns I had for lunch? You're thinking , it could be a possibility. Just like it could be a possibility that when it happened last month it was because I might've had food poisoning. Eyes wide shut, Mum. 

Bowel incontinence is a symptom of MS. Terrific! Where to now? I did a bit of research into using a Peristeen. 

A Peristeen is a catheter that you stick up your bum. Then you pump a certain amount of water into said bum (no, I don't know how much yet) and as the water comes out, it flushes any faeces out with it. 

You do it at a certain time every day. Preferably after a meal. That way your bowels will be in motion anyway. 

Oh the joys of MS. As Richard Prior - comedian and fellow MSer once said, "MS stands for More Shit!"

Liking the irony, Richard. 

Regards,

Dan

4. Cannabis

This is a very contentious subject. Cannabis is a drug that is natural and is of a massive benefit to a lot of people with MS, but it is illegal. Doesn't make much sense when you bear in mind the 'Big Pharmas' are selling very expensive man made drugs that seem to have little, or no effect to some of the MS population. The cynic in me wonders how many shareholders in pharmaceutical companies are involved in various Governments and their decision making processes around the globe. Ignore me, it's late and I've been drinking Stella. 

There is a UK based company called GW Pharmaceuticals who have developed a medicine called nabiximols. It is better known by its trade name - Sativex. Sativex is a cannabis based throat spray, albeit with all the. 'good stuff' taken out and since its release a year or so ago, the only media attention it has had is the fact that you cannot get your hands on the stuff. Here in the UK, our primary care trusts won't touch it. So people in the UK have massive difficulties getting access to a drug that has been manufactured in the same country, despite it has had all the effects you get from the 'street' version already taken out of it

You go into hospital with a sore finger and they'll pump you full of opiates, to stop your pain, yet you cannot have cannabis in any shape or form, despite its proven benefits. This is not a case of some 'stoner' banging on about 'legalising the weed', it is just general bewilderment that Sativex is such a difficult drug to get your hands on.

To me, it's a no brainer. Let us have access to drugs that help us. 

Dan

3. Self Catheterisation

I have been performing intermittent self-catheterisation for about 5 or 6 years. I catheterise every time I go now. At first it was a few times a day as I didn't like the idea of carrying the cumbersome catheters and bags around with me everywhere I went. 

One day I did a trial for a new type of catheter. It is made by a company called Coloplast and is called the Compact Speedicath Catheter. Compact by name, compact by nature. 

It's great! It comes in a pocket-sized green tube, 7 or 8 inches long, extending to the necessary size when removed. No more need for a rucksack carrying standard catheters around, and no more need to still have a half full bladder AFTER I've been to the toilet!

I got asked in July if I wanted to try out Coloplast's new catheter. They told me there were only 3 people in the country that would be trying them. 2 women and me. "Hang on, that will make me the only man in the country to have used one?" I asked, full of my own self-importance.  "Yes" they replied, clearly telling me fibs, as other men would've tested them out in the design stage. 

The catheter is called the Speedicath Compact Set. It is identical to Coloplast's compact catheters that are being used all around globe, but it has a bag attached. 

It couldn't have come along at a better time, because as my MS progresses, I am spending more time in a wheelchair and transferring from chair to toilet seat can on a bad day be very troublesome and totally depleting. Therefore, when on said bad day, I can pass urine without leaving the 'comfort' of the wheelchair. 

Also, if I need a wee in the middle of the night, when my anti spasticity drugs have well and truly worn off, I can sit on the edge of the bed and go, rather than stagger to the toilet like a drunken idiot about to fall over. I find falling over easy, it's the getting up part that is difficult!

The bag folds nicely around the end of the catheter, is easy to unfold, courtesy of a neat Velcro strap and comes in an equally easy to open tube that is no longer than the current compact catheter that's on the market.  The tube is slightly wider than the current compact catheter, but when you realise it contains an attached bag, you can see just how compact it really is. 

Once you have emptied the bag, you can fold the bag back up and fit the catheter and the bag back in the tube, put the lid back on and carry on with your day. 

I've been itching to talk about it for 2 months now, but have been sworn to secrecy. Now that it has hit the market, I don't have to keep my trap shut any more. Hurrah!

Dan