Piggy in the middle

This week the country's junior doctors went on an all out strike for the first time ever in the history of the NHS. I for one fully support them because I honestly think that this is the thin end of the wedge and sadly I believe that by the time my kids are adults the NHS will have died a death and been broken down and sold off to the highest bidder. The problem lies not at the feet of over worked, under valued doctors and other NHS employees but with governments past and present for using it as a political football and with us the patients. Now that may seem controversial but I think that we now rely heavily on the NHS to provide care for our elderly when years ago they would have been cared for within the family, we expect to have instantaneous fixes for all of our health problems, many of which are as a result of our poor lifestyle choices- smoking, drinking, drugs, ready meals and takeaways etc and the increasingly sedentary life we all lead. Instead of being accountable for our own health we rock up at the GP (after moaning about the fact that we couldn't get an appointment of course) and expect them to work miracles by dishing our tablets or another quick fix. Millions of us are claim to be stressed when perhaps it's our bodies way of telling us that it cannot cope with the punishing pace at which we all try to live our lives now. We want to have it all and believe we have failed at life when we realise that we can't. People nowadays are not content with keeping up with the Jones', people are attempting to keep up with the Kardashians and other celebrities and want a champagne lifestyle on a Lambrusco budget. I don't know what the answer is, but I sure as hell know that Jeremy Hunt doesn't either. If we want an NHS to hand down to our children and grandchildren then we must start valuing our doctors and nurses, set up better incentives for young people to enter the medical profession at all levels so that we don't need to rely on nurses from the Philippines, Doctors from India and cleaners from Eastern Europe. And we need or start taking some accountability for the strain that we are all putting the NHS under and be willing to pay more tax to have a fully free at the point of access health service. 

But that's all by the by. I will get down off my soap box now. What I meant to write about was me and my bowel habits (surprise, surprise) but I got side tracked writing a party political broadcast from the More Than Just A Bag Lady campaign! This week the pouchitis has calmed down a little bit which has been a welcome relief. When I say it's calmed down I'm now going to the loo 3 times a night instead of 5 and 10 times a day instead of 15-20 which still is not ideal but more bearable. All this going to the loo has left my poor bottom red raw and I've been working my way through all the nappy rash creams in Tesco hoping to find some relief. I've been taking antibiotics to treat the pouchitis now for nearly 5 weeks and when I went to see my GP last week he wanted to start me on a course of steroids. We had discussed this the week previous and I really wasn't keen. I spent the best part of 2 years yo-yoing on and off steroids before I had my ops at St Marks and it's really not a nice drug to be on. The side effects are horrendous and you end up in a cycle of dependency where you get better while taking them but when you try to stop you end up ill so have to start them again. (Yes I know you don't just stop steroids, you have to gradually be weaned off them and it's during that process when I started taking the low doses that I start to feel shit again and ended up back on the huge whacking doses that would temporarily make everything better again). 

I decided that now would probably be a good time to get in touch with my team at St Marks so rang to speak to the specialist pouch nurses. They weren't available so I left a message but when I hadn't heard back after 2 days I rang again. Two days after that I got a phone call from one of the nurses who told me that there should be 4 pouch nurse specialists at St Marks but one was off sick long term and the other two had left so it was just her. She was trying to look after all the patients on the wards, run all the out patient clinics and liase with long distance patients like myself. A completely unsustainable work load but one that is sadly way too common. She told me under no circumstances to let the steroids pass my lips because that wasn't a good way to go and could end up in me being in the yo-yo situation that I was in a few years ago. But she didn't really have any other suggestions as I had already been taking the antibiotics recommended for treating pouchitis for weeks. She said that I really needed to be seen by my consultant and that she was going to get in touch with his secretary as my next appointment wasn't until August. I had been due to go to St Marks in January but I was too ill to manage the train journey so I had to cancel it and August was the next available appointment! So I'm waiting either for her to get back in touch or for an appointment letter to come though the post. 

I had a follow up appointment scheduled with my GP today and even though I said I'm feeling a bit better I'm still feeling pretty crappy, but not totally shit. You see it goes along the scale from not too good to really not great to pretty crappy to totally shit and finally to fucked. The weeks of feeling totally shit have left me wiped out though and the amount of time I'm on the loo in the night really disrupts my sleep so I end up exhausted. So exhausted that I fell asleep in the doctors waiting area. Apparently he came out, called my name and saw me asleep so left me and saw another couple of patients before calling my name again, loud enough this time to wake me up. I told him that I was feeling a bit better to which he laughed and said that I still looked like shit and that I couldn't be that good if I was falling asleep in the waiting room. I had actually put some make up on this morning and thought I looked quite well so if I looked shit with it on, God only knows how bad I look without it. He again started banging the drum about trying steroids and I relayed to him the conversation I had had with the pouch nurse. What really pisses me off, he told me, was that they were poo pooing his suggestion when he was the one seeing me struggle week in, week out and that they could obviously assess my needs over the telephone (this last comment was delivered with a huge heaping of sarcasm). And yes, my GP really does swear during the consultations. I have no problem with this- it shows he's human and relaxed with me enough to show his frustration of my illness and the system that we are both caught up in. I told him that I felt like piggy in the middle and we talked at great length about the use of steroids and he explained in more detail why he felt that they were worth trying. If I respond to them and start getting better it shows that there is definitely an inflammation in my bowel and if that's the case the steroids are a short term cure while they then work out what other medicines I need to be taking to deal with the inflammation. If I don't show any signs of improvement whilst on the steroids then we know it's not that and I get weaned off them. Either way, he told me, I would only be on them 6-8 weeks while we see how I respond. 

During this discussion he dropped a bombshell that I could still be suffering with colitis. Nope, not possible I told him. Colitis is only found in the large bowel and rectum and as I now have neither I couldn't possible have colitis. (Get me telling the GP now to suck eggs) But he told me that he had been looking into it and in a tiny percentage of cases people can have colitis in the small bowel, particularly in the bit that links up with the large bowel. Now we all know how I have fared with percentages in the past- if there is 1 patient in a 100 or even a 1000 that would have complications or side effects then it has always been me. One doctor told me once that I was the unluckiest patient he knew; which would also explain the reason why I've never won so much as a tenner on the lottery! To see if this is the case I will need to have another scope (or camera up the arse to put it bluntly) so that's something to look forward to. However it may not be colitis- it could just be that my pouch is being really, really naughty and is totally dysfunctional to the point that I might have to start seriously start considering whether I should go back to having a stoma. This would be a major decision for me and not one that I would undertake lightly so I need to know exactly what's what before I begin going down that road. I don't want to have to go back to a stoma, but I don't want to have had all this surgery to find out that I've still colitis either. To be honest I don't want any of this full stop. 

NB x