12. Orange jelly and a catheter change

It's been a whole week since I went into hospital to have my suprapubic catheter changed. 

Being the pessimist that I am, I was expecting the worst. When I say 'expecting' the worst, I mean preparing for the worst. 

I first had the operation in January and the first time they change it, you have to have it done in hospital. 

It should be changed every every three months, but because of an admin error and an infection or two, it didn't get its first change until a week ago. 

I have written since I had the procedure bitching and moaning about the problems I've had since it was done. I've said it before, but I can honestly say that the first three months post operation were the worst three months of my life. 

Anyway, I'll get to the 'silver lining' part of the story now and that is that despite my concerns, the catheter was easily removed, pain free and just with minor discomfort. "A good start, the job is half way done" I told myself. The nurse then proceeded to put the new one in. I had previously told myself, that if there were any problems inserting the new catheter, I would ask the nurse to not bother with the suprapubic entry and putting an Indwelling catheter in (one that enters your bladder via your urinary tract).

Before I had a chance to grit my teeth, the nurse informed me that it was in and started to blow up the balloon that holds it there. After the day bag had been attached, I had to hang around for a while, to see if the bag filled up. 

A blocked catheter was one of the many problems I had with the last one, but all my concerns were to no avail, as it started to fill straight away. All that was left was to eat my hospital lunch (cheese an ham sandwich and jelly) and go home and hope that the trouble free procedure continued to be trouble free. The aftermath was my biggest concern, so I was far from being 'out of the woods' just yet. 

It's been a whole seven days since I had my catheter changed and everything is tip top. I've not had any blockages, I haven't had any infections and my wound is pain free! Dan is indeed a happy man. 

Before I go, I'm sure there is still a question that you're dying to know the answer to. A question that is burning away at your insides. A question that will cause large amounts of insomnia. You must know what flavour jelly I had for afters at the hospital? Well, I'm not telling you. 

Regards,

Dan

11. Supra pubic catheter Part one million!!

I'd like to start by wishing you a happy March. Can you believe it's officially Spring already? It doesn't feel like we've had a Winter this year - we haven't had any snow anyway. It's been a mild one and before you know it, it will be Summer. Should the first letter of a season be a capital letter? I don't know. I'll be honest, I couldn't really give a shit.  Anyway, I've got air conditioning installed in my flat now, so bring it on, hot weather, I'm ready for you. 

So the catheter. It's still giving me aggravation! It'll be seven weeks since I've had the operation on Saturday and the problem I'm having isn't the actual catheter itself now, that seems to be settling down finally, but the actual site is infected AGAIN and it keeps happening. 

I've just started another course of antibiotics. That's the third lot I've been since the operation. And that doesn't include the one's they gave me when I went back into hospital with an infection and they didn't let me take the rest of the course home and finish it because they were concerned I was building up an immunity to - wait for it - antibiotics!

The doctor is obviously aware of this because I've been prescribed some different pills. I've never heard of these ones. They're called Ciprofloxacin and they're strong ones. I cannot have dairy products up to two hours prior to taking it, or two hours after. The same goes for any medicine for the digestive system. Not even Gaviscon or the probiotic milkshakes I have with my breakfast. 

I am hoping that once the infection has cleared up, there'll  be no looking back, but I'm not counting my chickens just yet...

Regards,

Dan

10. More catheter fun and games

It'll be five weeks since I had the supra pubic catheter fitted on Saturday. Has it all settled down after the initial issues, you ask? Not really, no. 

When I last wrote, I had been back into hospital, because my catheter wasn't working. They discovered that I had a urinary tract infection (UTI) and that the catheter was fine. They sent me home, but without any antibiotics telling me to drink lots of water. 

I did just that. I probably drink a few litres of water a day anyway, so within a couple of days, I felt comfortable that the UTI had been flushed out. 

There's been a couple of occasions where the catheter has got blocked and I've felt my bladder filling up. Without a UTI it isn't a problem, as I can hold onto my bladder as normal - especially as now I'm taking Oxybutynin three times a day. Oxybutynin relaxes the bladder muscle. Not to the point that I piss my pants, it just stops the muscle going into spasm, causing random squirts. 

Anyway, the district nurse comes round and gives the catheter a flush. That basically means they squirt some sterile water through the catheter into the bladder and it should clear the blockage and come straight back out.

I don't know why it kept blocking. Neither did the professionals, so they put it down to 'teething problems'. The only important thing is that it hasn't blocked for a couple of weeks now, so I'm happy with that. 

So, we're on the 'home straight' now and it's finally starting to settle down, right? No, not quite. I woke up one night with a bit of pain where the entry site of the catheter is. It was a burning pain, but it wasn't bad enough to stop me getting back off to sleep. 

Over the course of the next day the pain got considerably worse. The wound was weeping - it had been since the day after the operation, so I wasn't that concerned - and it smelled rotten. I called the doctor out and he took one look and told me exactly what I expected to hear: it was infected. 

Fantastic! Another week on antibiotics. Drinking plenty of water wasn't going to clear that up. 

The doctor told me that if I've been weeping since the operation, I probably come out of hospital with the infection and had it the whole time. 

The course of antibiotics has cleared the infection up nicely. The site has dried up and the rotting flesh smell has gone. 

For an entire seven days, I have free of issues and everything seems to have settled down, but I'm not counting my chickens just yet. 

Regards, 

Dan 

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