Month: February 2015

My Urethra moment!

/ RachelMorrisMcGeethemyastheniakid / 5 Comments

**** Graphic Content Warning****



No I didn’t spell eureka wrong, you read the title right. It is a deliberate play on words. I want to talk about self catheterising in this post, so if you are of a delicate constitution or think this couldn’t happen to you please stop reading now. I will be approaching this subject in my usual no holds barred type of way because I believe in honesty and not sugar-coating things.

My appointment with the continence nurse came around all too quickly. Nervous didn’t quite cover it. From June last year various health professionals had decided that I needed to be taught how to self catheterise  due to a bout of acute urinary retention. This is where for some reason, usually neurological, the valve at the neck of your bladder refuses to relax so that you can produce urine. When it happens the pain is immense. You have the feeling that you urgently want to go for a wee but you either can’t go at all or you just have a drip, drip, drip of urine. Which doesn’t empty your bladder and you have the sensation your abdomen contains a balloon that could burst at any moment.

 The home visit from the nurse had been set up to teach me how to insert a catheter myself, preventing acute urinary retention from happening and thus negating the need for me to have to wait to see the district nurse, who would fit an indwelling catheter which would be left in situ for a few days increasing the risk of infection. Plus last time I had an indwelling catheter (this just means I have a catheter that is connected to a bag in which the urine is drained. It stays in place by means of a small saline filled balloon that sits on the bladder neck. It is uncomfortable, embarrassing and difficult to dress around. The urine collection bag is strapped to your thigh so you can not wear close-fitting trousers. You also have the constant fear that the bag will burst!) it blocked the next day leaving me in agony as my bladder went into spasm.

A few weeks before the nurse came to my home, I was sent a booklet explaining how to self catheterise and also a DVD – which I will get to in a moment. The booklet contained illustrations which featured a woman self catheterising, it was done in a tasteful way which didn’t really address the situation head on. To self catheterise you are going to have to get really familiar with the geography of your nether regions. I mean let’s be honest how many of us could look in a mirror and identify where the entrance of our urethra is? You know (if you are female) you posses a clitoris (yes I said the C word!) a vaginal canal but where do we pee out of? Have you ever looked or felt? I mean why would you? I know I hadn’t until last week.

It’s not a subject we females feel  comfortable discussing, it has only become an acceptable concept of late that the female of the species do masturbate and enjoy it. However it is rare to find a woman who will openly admit that she does. The female genitalia still seems to be shrouded in mystery and to openly admit you’ve touched yourself in that area is still met with wide-eyed horror. It is accepted that men do it so why all the fuss about the other 50% of the population? 

I knew the rough geographical location of my urethra but only after watching the DVD from which I am still baring the mental scars. I don’t know what I was expecting when I watched the DVD the day before the nurses visit. I knew it wasn’t going to have much of a storyline and had prepared myself for the possibility that there would be an animation demonstrating the catheters insertion. Oh how wrong I was! Out of no where it cut from a scene of an anonymous woman washing her hands to me being confronted with a woman’s nether regions, accompanied by music and a voice over of how to place a catheter. I am not a prude in any way, shape or form but I was taken by surprise at the graphic nature of the content. As a woman (if you are heterosexual), unless you are a Doctor, Nurse or Midwife, we don’t get up close and personal with another females genitalia. So viewing one on a 40 inch HD TV did come as a bit of a shock. Especially when there was no warning on the DVD cover that this would be the case.

Once I had got over my initial shock, some of which was based on my fear of the procedure, I had to agree it had been quite helpful. I now knew where my urethra was to be located. As a help for those of you who don’t know below is a really crap drawing of which I am the artist. My husband said it looks at worst like a road map containing several roundabouts or a piece of abstract art at best!

I decided that I would learn how to self catheterise by touch alone, this was after much consultation with my sister who before having a sacral nerve stimulator placed was in the same boat as me and had needed to do this also. She told me that you needed three hands to be able to insert the catheter. One to hold the mirror (if you are doing this by sight), one to hold the labia open (so that you can see your urethra) and one to insert the catheter. The catheters that are provided for you to use do not tend to come with bags like the indwelling ones do, so you have to catheterise over a toilet. My sister informed me that the bags that can be provided are not very reliable and can leak. My sister was taught in a hospital setting, lying on a bed which doesn’t transfer well when you are at home trying to do it on the toilet. 

Doing this procedure by touch alone meant I needed to know what my urethra felt like, so I had to have a rummage. I found it easy to identify as the opening although small does have a different feeling to than the skin around it. Under the tip of my finger it felt like it had a slight wavy edge  and it dips in, so it is not flush (sorry couldn’t think of a better word) to the rest of the area around it. It took a little time to suss out but I wanted to be confident that before the appointment, I could at least identify the area of my anatomy that would be coming under close scrutiny!  If you are going to play hunt the urethra yourself just because you are now curious, go ahead however make sure you do so with clean hands. Self catheterising is taught with a clean hands approach to avoid infections, so even just trying to find it should be done in the same way. Infections are easily transferred into the urethra – even wiping the wrong way can do it so please ensure your hands are very clean before having a rummage.

The morning of the nurses visit I was absolutely terrified, my heart was racing (nothing new there) and I felt sick. I was convinced that I wouldn’t be able to do it and the nurse would have to come and help me. I am intensely private about my body. You may now be falling off your chair laughing right now. What I mean is I find this stuff easy to write / talk about but to show you any part of my body that would normally be hidden under clothes just isn’t happening! 

The nurse was really lovely and incredibly funny. She put me at ease immediately which helped me relax (a tiny bit). I couldn’t relax fully as I knew at some point I would have to try to insert a catheter myself. She was very pleased that I had watched the DVD, read the booklet and had located my urethra. She told me it wasn’t uncommon to speak to women (of all ages) that had no idea that they didn’t urinate out of their vaginal canal. Also due to the taboos surrounding vagina’s, many of  the women she see’s hadn’t examined themselves to locate their urethra. I know psychologically it is a hard thing to admit that you need help to urinate, maybe the women’s refusal to examine themselves is also part of that mental block? My thinking was if I found it myself I wouldn’t have the nurse showing me, maintaining my privacy. 

The nurse was a bit like a travelling sales women, with her large black bag which contained  a vast array of catheters. Who knew there were so many different types and so many different sizes? The two I decided to have a try with are pictured below. The green one is  a Coloplast, which has a more rigid tube and the Hydrosil Rose which is made from silicone and is more flexible. Both are self lubricating. The Hydrosil Rose as you can see has a silver packet in it which contains sterile water. Before opening the packet you pop the bag by folding it over and then the water activates the lubricant on the tube. The Coloplast also is lubricated and that is released when you twist the tube open. Both packets have to be agitated ( a bit like a bottle of nail varnish before painting your nails) to ensure the lubricant is activated. It sounds complicated but it really isn’t. I chose the smallest size available as anything larger just made my eyes water. 

Please be aware that the whole of the tube is not inserted! The pink section on the Hydrosil and the green section on the Coloplast are the handles. Just the small tube is inserted and only to the point of when urine starts to flow through the end of the handle.

I just want to state for the record I am not being paid to mention or endorse either brand of catheter and I am not receiving payment of any kind. They just happen to be the catheters that my local health authority offers.

Once the nurse had run through the basics of catheter insertion it was my chance to have a go. I trundled off to the bathroom alone and full of dread. I really wanted to get this first time. A friend had been through the same thing recently and had cracked it in 10 minutes. I thought to myself “how hard can this be?” and then spent the next 5 minutes swearing and failing miserably. No matter how hard I tried I couldn’t get the bloody thing to go in. I was in the right place, I just couldn’t insert it. I had chosen the Hydrosil  to try first and I realise now that this was probably a mistake (for me others maybe more successful with it using it for a first attempt). With the tube being silicone when it came up against any resistance it simply buckled under any pressure. Had I chosen the Coloplast with the more rigid tube I may have had more luck.

For a few minutes I sat on the toilet, trousers around my ankles summoning up the courage to call the nurse for assistance. I plucked up the courage and she came to my aid. This was where the hilarity really began. My bathroom is uber small and has no natural light. We had to engage in a session of hunt the urethra with the nurse on her knees in front of me using a mirror to get more light on the area. At this point giggling my head off I offered her the head torch we keep in the car for emergencies. We had to stop for a moment to compose ourselves. She confirmed that I was in the correct location, so at least I had got that right. However she was going to have a go inserting it….oh joy!

It really bloody hurt, she also struggled to get the catheter past the opening of my urethra. I was desperately trying not to climb on top of the toilet cistern, with the normal human reaction of getting away from the thing causing pain. Eventually it was placed but it caught the nurse out, my urine drained all over my knickers, jeans and bath mat. Again I couldn’t stop laughing, which I think was to the relief of the nurse who had just covered me in my own urine. I informed her that I had debated wearing socks that day just in case this very thing happened. With no bag on the end of the catheter urine runs freely through the tube. If you don’t have the end placed over the toilet bowl accidents will happen, even to consummate professionals.

If I thought it was painful on the way in, nothing could prepare me for the agony of its removal. I kept begging her to stop as it felt like my insides were being torn out with it. My sister had warned me that catheters could feel like you were shoving a cheese grater up your urethra. I had laughed at the time, I wasn’t laughing now. I had tears in my eyes as it was eventually removed. I thought to myself if it is going to feel like this every time I use one I don’t think I can do this. I know I can be a drama queen but when it comes to pain I am pretty hardcore. This was extremely uncomfortable.

The nurse left me with 36 catheters to practice with, in a few days she would ring me to see how I had got on. She wanted me to get used to doing the procedure alone and to find out which type of catheter I preferred. Ordering the products is simple, the nurse sets up your account, then every month the company rings you to see what you need. They then contact your GP’s surgery who write the prescription, fax it back to the company who then send out your supply via a courier. I did have the option that the prescription could be sent to my local pharmacy but I like to save my husband from the embarrassment of picking up catheters. I opted for both the Hydrosil and the Coloplast. I found the Hydrosil more comfortable to use but some days I really struggle to insert them and that is when the rigid tube of the Coloplast comes in handy.

 I tried to self catheterise later on in the day of the nurses visit, four attempts were unsuccessful, I was at the point where I believed I was never going to get this right. The fifth and final attempt of the day (I had decided as it was getting frustrating, with my confidence at an all time low) I did it. I was so proud of myself that I had done this that I wanted to shout it from the roof tops. It was much less painful doing it under my own steam. I think when the nurse did it I was just so stressed and tense that this had caused some of the pain. I had a new-found confidence that I could indeed do this. It was going to take me some time to master it and I was under no illusion that I would get it right every time but I now knew it was not  mission impossible.

I tried again on Sunday managing to do it twice and on both occasions it went in first time. I was on a roll however the pain was back and there was blood on the tip of the catheter. This was nothing to be alarmed about all the literature and the nurse had warned me there maybe some bleeding when first doing this. The tissue in this area is very delicate. The urethra would eventually toughen up and the bleeding would stop. It’s still hard not to react to the sight of blood no matter how minute the amount. It was just a smear of blood on the tip of the catheter.

Monday I managed to do it again and when the nurse rang she was pleased that I was progressing well. She reminded me that there would be times that I would find it difficult. When I was struggling she told me to step away from the situation, go and have a cup of tea and try again later. She was so right that there would be times that I would struggle. After several successful attempts Tuesday was full of disasters. I went through six catheters attempting to practice my new skill. Again I got to the point where I thought I would never get it right again. With perseverance I was successful later on in the day. It is easy to see how you could become disheartened by the whole process.

I am lucky in the fact I don’t have to do this every time I need to urinate. I will only need to do this a couple of times a week. It is still sore, but bearable and more than one attempt a day leaves me with bladder spasms, which are easily controlled with muscle relaxants. I still find it quite daunting every time I attempt to self catheterise. I have found the best approach is to be as relaxed as possible. If I am tense at all I can’t do it. I am worried that I will have a bout of acute urinary retention before I have mastered this completely and under pressure I will not be able to do it. So I must practice, practice, practice so that if I do need to do it for that reason I can. 

I don’t want to put anybody off doing this, I am only reporting my own experience. If you need to learn how to do this there is nothing to be frightened of and the upside is it means no trips to the hospital when you can’t urinate.

This post is dedicated to my sister and to my friend KH. Thank you for sharing your experiences with me.

A general update

/ RachelMorrisMcGeethemyastheniakid / 3 Comments

I know I can be terribly annoying talking about the various new things happening medically but then never going back and updating you all. Unfortunately I have the memory of a goldfish, my husband will attest to that. I forget things, I continually ask the same questions  etc. It must drive him nuts some days but he patiently answers those repeated questions.

Octreotide:
In April 2014 I was admitted into hospital for a medication trial. Luckily I escaped on the second day, the hospital setting drove me to the brink of hysteria. This was triggered by awful experiences of hospitals in the past.
I was started on 0.25mls Octreotide three times a day before meals. Whilst in hospital I suffered no side effects but with in a few days I was suffering from diarrhoea (neon yellow in colour!) and stomach pain. On the advice of my consultant I stopped the injections for a few days and then restarted them but just once a day. All went really well – it stopped my postprandial episodes, until June which was when I started getting repeated bouts of cellulitis. I decided that I would stop the injections whilst I waited to get rid of the cellulitis. I had four bouts of it in total, by the end of July I had simply got out of the habit of injecting and it fell by the wayside. My postprandial episodes had lessened so I just didn’t use it.

Last week as the episodes had come back with a bang I decided to bite the bullet and start using the octreotide again. I started off on a 0.2ml dose and that has gone really well. As there were no side effects I have increased this week back to 0.25ml, I had got up to 0.3ml before stopping it so I hope to slowly increase it back to that amount. So far so good, the weird thing is I can really feel it wear off with tachycardia coming out of nowhere once I get to the 90 minute mark after the injection. I see my consultant at the hospital in the next few weeks so I will update him them.

Fludrocortisone / Florinef:

I started taking fludrocortisone again back in February 2014 after the tilt table test sent my autonomic nervous system into free fall. Since then its been on and off until January this year when again I have taken another downturn health wise. I am currently taking two tablets a day which I find helps with the tachycardia and palpitations. It does zero for my blood pressure but if it stops the banging heart every time I move I am happy to take it. If I am having a very rough day I will increase to three or even four tablets.

Home Oxygen:

I still have my oxygen concentrator which is an enormous help to me….when I remember to use it. It is very reassuring to have the oxygen concentrator at home so that I don’t have to take a trip to hospital. There are several reasons why I use it, the first one is quite obvious I use it when I feel like I can’t breathe. This tends to happen if I am having tachycardia that wont settle even when resting. It is exhausting when your heart decides to run at a million miles an hour when you aren’t. It feels like you can’t catch your breath, so the oxygen just makes it a lot easier. On occasion it will slow my heart down as well so a double bonus. I also use it when I have a bad migraine, the oxygen seems to reduce the length of the attack and ease the severity of the pain. Since being on the fludrocortisone again I have had a lot more headaches an unfortunate side effect so I find I am using the oxygen more and more.

Back Pain:

Overall my back pain is 100 times better than it was back in August when I could barely get out of bed. I still have bad days and semi bad days usually when I overdo things however some days I can just wake up in agony. I am not brilliant at doing the Pilate’s I seem to have fallen out of the habit. I really need to get back on the case.

My back pain has also moved from being predominantly my lower back and now can be anywhere from the base of my skull down to my tail bone. For the moment I have stopped going to physio therapy as I really don’t believe that my back will get much better than it is now. I completed Pilate’s from the September to the December at a cost of £70 a month. We don’t really have the £70 a month to spend. If I can’t keep my back pain at the level it is now I will go back.

Bladder Problems:

My bladder has been doing much better since I have retrained it to wait for longer until I empty it. So far no infections which was my main concern as my going frequently was a habit I had got into due to recurrent infections. 

I have not cut out caffeine, fizzy drink, artificial sweeteners or the devils juice. This was my decision and just because I have done it does not mean that this decision would be right for you should a medical professional advise you to do the same. I knew that my problems were not related to my consumption of these items but down to a neurological problem. The bladder nurse was trying to treat me for an over active bladder due to me urinating over 26 times in a day. What she couldn’t quite get her head around was that if you drink between 6-7 litres a day you are going to pee more than the national average.

I am being taught how to self catheterise at the end of this week…..I am so looking forward to it. At least this is happening in my home and not in a hospital ward. Knowing how to do this will be an enormous help as my bladder is still refusing to empty properly or completely stop working. I am hoping that by being able to empty my bladder in this way will mean I will not need the district nurses coming around and fitting a catheter with a bag in future. Time will tell. I am sure there will be a blog post following this hilarious fun-filled episode.

B12:

I was diagnosed with a vitamin B12 deficiency at the end of the summer. I had the standard 6 injections and then was supposed to be given the injections every 8-12 weeks. After 6 injections it was clear that I needed far more B12 than was being offered on the NHS (despite the NICE guidelines informing doctors of the correct practice). As soon as the B12 injections wore off my neurological symptoms came back. So since then I have been initially injecting every other day. I then spaced that out until every 3 days then every 4 days and now I am down to once a week. Any longer than that and the burning sensation in my left leg and foot comes back. I was obviously a lot more deficient than my B12 test accounted for.

Overall Health:

As I have a hospital appointment coming up in the next few weeks to see the consultant who looks after me for PoTs I have been thinking long and hard about how I am doing. I haven’t seen my Dr since April due to a massive balls up within the hospitals admin department. Hand on heart I can honestly say my health is slowly getting worse each year, which is upsetting and a little depressing. I don’t know where this decline will end and that is scary. No one seems to know or discuss it. 

I am now starting to suffer from random drops in blood pressure when sitting. I am used to my blood pressure dropping like a stone on standing and have coping mechanisms in place for this. What alarms me about this new symptom is it is happening when I sitting with my legs raised. I will be reading or using my Chromebook and all of a sudden the screen will seem to scroll up or down. This is actually my eyes rolling in my head, within a few seconds my heart will feel funny. The only way I can describe it is that I get the sensation you have when you are falling in a dream, only I am awake. The attacks can last for just a few seconds or several minutes. I may get one in isolation or repeated attacks throughout the day. I know that whatever it is that is happening is causing my blood pressure to drop as I have been lucky enough to capture an episode on my BP monitor. This is just crazy and when I put some feelers out within the PoTs community only one person replied and said their son suffers from them.

I worry about these attacks as I have no warning that they will happen. For the moment I have placed myself on a driving ban until they have stopped for a few weeks. I feel like I am hanging onto my independence by a thread. Losing my driving licence – even though I only drive a few times a year would devastate me. Obviously having an accident and hurting other people would devastate me more. It is just that I feel that this illness has taken so much away from me I would hate to lose yet another thing.

Weight loss:

I am still sticking to my diet and I will admit it has been very hard at times. I have lost 21lbs since starting and I am just 3lbs away from what I weighed on my birthday in November which is what my first target was. I still have a long way to go, I am not even half way yet. I have found that reading my cards that I have made up with positive affirmations on them reminding me of the reasons why I want to lose weight etc have been really helpful especially on the days when I am finding it a hard slog.

One last quick update:

 This one is regarding my mum. Those of you who are regular readers may remember I wrote about the length of the waiting list for my mums spinal surgery. She still hasn’t had the operation and has deteriorated further. She saw her surgeon last week after her gp wrote to the surgeon explaining how badly my mum was now doing. Her case has now been marked as urgent and she has completed all her pre-operative tests. She is now just waiting to hear when the operation will take place. Fingers crossed it takes place soon as she really needs it.