I was at the hospital yesterday, the last of a list of appointments that I knew were ahead of me, back in January. Yes, it has taken that long to get an appointment, and it was the longest appointment I have ever had. Nothing to do with getting there or back, it honestly was the appointment. Both Adam and I were so sure that it was going to be the perfect trip. The appointment was nice and early, and that usually meant we were seen and home within a couple of hours, so we left here light-hearted, even though we were without a doubt late for the allocated slot.
We arrived in the waiting room at 9:40, twenty minutes late, but we were whisked straight into a consultant room. The door shut and we expected it to be opened in minutes by Dr. Hair. It was, but just long enough for him to put his head around it and tell us that he wanted one of his colleges to see us, to see if he might be able to come up with something he hadn’t thought of when he saw us 18 months ago. It was Dr, Hair, who put me on to psyllium, and a range of other things that we tried without much luck, and told me to throw away all the different laxatives, that my GP had me on. Since we saw him, I have had psyllium in my daily diet and he was totally right, it does help. The actual production and getting rid of stools is much smoother, but it hasn’t fixed the problem that I have with pain throughout my intestine. Since that visit, my gallstones have also flared up many times, and the combination of pains has made me far more than just miserable at times. Not even taking my booster dose of 10mg of Morphine always deals with the pain, it just keeps coming.
We sat there waiting, with the odd head appearing every now and then, but none of them coming into the room. One of them, eventually told us, that the doctor we were waiting for, was coming across from the Sothern General, to the Victoria, to see us. It is a good half hour drive between the two, so we eventually understood why we were waiting. It was in fact, a full hour and fifteen minutes we were sat there before he arrived. I’m sorry, but his name escapes me now. He for once, though, had read my notes and had a good idea what he was faced with. I filled in what had been happening since and why I was once more sat there. For once, my intestine hadn’t done what it often does, emptied just prior the appointment, I had a full gut and the perfect condition for him to palpitate and examine. Then it was down to what he had to say. He totally agreed with what I believed, that the nerves to my guts are dead or dying. They can not and will not supply the messages to push things through me and it’s a case of it all packing in tightly until it lets go of a length from inside me, then slowly packing in again. The pain is from my intestine being overstretched. The occasions when I throw up is because they are quite simply, unable to move things in any other direction. So what to do about it.
We firstly discussed the option that I dread, a stoma. Both of us are in agreement, that as long as we can make them move at all, it is an option that I don’t really want. For me, it’s the physiologic issues of having a bag of poo, stuck to my side forever. For him, it is the medical complications that go along with such an operation, complications that he thinks for me would be vast. What I really want, is to get rid of some of the pain that I am plagued with, after all, that is why I was there. He explained that even if they did do that operation, it didn’t mean the pain would end, with there being so much damage done to my nerves, it might continue, gut’s or not. Then we went to my gallstones. I thought, one quick operation and it would be done, surely they could do that for me. He told us all the horrors that such an operation could bring with it. According to him, it isn’t the quick operation that I had in mind. Once he went through all the nightmares he could think of, he added in, “and then, it is if the anesthetist is willing to put me under an anesthetic, something I’m not sure they would, with your current medical state.” I was sat there feeling totally deflated and feeling as though I was as always, stuck alone dealing with it all.
There was only one question I had to all he was telling me, “Is there nothing you can do without surgery?” It was then that he told me that there is a drug they sometimes use to dissolve gallstones, it’s not always wildly successful, and they have to be sure that the stones aren’t calcified, but yes, we could try that. As for my bowels, well the only thing he came up with, is trying to stimulate my bowels to let go without storing as they do. To do that, I will require the district Nurse to visit every couple of days and give me an enema. Yes, that was tried four years ago, but only for a couple of weeks, not long enough to see if it will actually work. One x-ray of my gallstones later, and a couple of cigarettes and to our total shock, we were on our way home again.
So here I am, with the facts all in my head and the final confirmation from a doctor that my body is failing step by step. There isn’t a single part of me that this damn illness hasn’t worked on destroying. Follow that Vagal nerve and it’s branching and you have the full picture of what it’s playing with, and what it’s destroying. People see MS as a condition that affects limbs and minds, no one really talks about how it also destroys everything inside you as well. I believe, that all I have left that it hasn’t had a go at yet, is my liver and kidneys, but it might have, I just don’t know. There is nothing they are willing to do for me right now, which actually means, there is nothing they are willing to do, full stop. As my health is only ever going to get worse, well this is it. They will tinker at the edges, play about with those odd possibilities, but as for the major stuff goes, forget it. The biggest answer that I had from them, was to take more Morphine to deal with the pain. I guess that is the story of my future, just take more Morphine until something fails totally and it’s over. I guess that I sort of knew that before I went there, but having it said to you so clearly, well, it puts a new edge on it. I still have much to think about, not least that I will have to have someone else coming into my home, to “care”for me, because I can’t. I knew a few months ago that life was changing, I just didn’t realise by how much.
Please read my blog from 2 years ago today – 16/06/2014 – Setting Summer out
Summer is beginning to appear, yesterday for the first time I was aware of a true change in the temperature. Clearly it has been rising for a while, otherwise, I would still have the central heating on, but yesterday the house felt just that bit too warm and I actually put my embarrassment to one side and ditched my dressing gown, I haven’t even bothered to put it on today. Now I know most people……