Beyond black and white

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……

11 thoughts on “Beyond black and white

  1. Pingback: Beyond black and white – Br Andrew's Muses

  2. My dad had gall stone surgery years and years ago, and following his botched surgery in late 2001/early 2002 his intestines suffered much the same condition yours have. Si I can empathize with what you’re going through. *HUGS*

    Liked by 1 person

      • He passed away in November 2014 at the age of 76, but basically he was bed-ridden and had to wear adult diapers the rest of his life, relying on someone to change him since he couldn’t get out of bed. It didn’t help the “mother” was his caregiver and wouldn’t let anyone else do it. She and my younger “brother” pushed me out of the house and between her neglect and abuse and his refusal to have her prosecuted, my father ended up declining in health far sooner than he should have.

        Like

  3. Well once again this just sucks !! I have a hard time believing there is nothing but pain meds for your tummy. They make constipation so much worse. I know, I have delt with those problems since birth,,well mom did of course when I was young. Have you tried Miralax? Probably. Have you taken Dicyclomine ? Do you have horrible gas? Simethacon. These are a few of the things I deal wifh daily and have tried so many things, but the ones I have listed have helped the most and eliminated much of the pain. Nearly all, except the occasional nervous stomach, as they call it, when I am overly worried or even happily excited.!!! I think if I was a doctor I would not give up on people and I would only see the amounti of patients that I could comfortably take care of !!
    Have you ever read any of the articles and blogs on “Mutiple Sclerosis.net “? Some very informative reading from real patients and care givers. Just a suggestion since you are on line a lot. The people with the different forms of M.S. also talk a lot about different meds. I have learned a lot. I am always looking for articles about MS so I can understand your problems and life better.
    Also I had my gallbladder removed by laser. Only problem was the
    pain from”trapped gas” 4 days after. My GOD, so much pain and all because of gas.!!
    I hope you find relief soon. This has to be hell. Rest peaceful my friend…😌

    Like

    • Over the last 4 years we have gone through many drugs to see if they would help me at all, but when nerves are dead, they are dead. I am intending in my next post to give a clearer picture of what the issues are, but I already knew before we went there, there was nothing left.

      The best substance I use for my stomach is Psyllium, you will see me refer to it in my posts, either by it’s name, or I call what I make them into Pancakes. Mind you, they may resemble them slightly, but there is where the similarity ends. Both the Consultant I saw 18 months ago and the one this week, both swear by it and I fully understand why.

      The truth is, my PRMS is killing nerves everywhere. The lung specialist gave me 10 years to live, that was over 3 years ago now. My lungs don’t actually sound that bad, but they are shutting down, because of the mechanism, not any other disease. Yes, I have emphysema, but it is my PRMS, that is the bigger problem. Now it is clearly slowly closing down my intestine, there is nothing they can do to stop it. This is why, no anaesthetist would want to put me under. My lungs are unpredictable enough without an anaesthetic. If my chest and lungs went into spasm, well it’s not worth thinking of.

      The trapped Gas that you refer to, is caused by the operation. They pump your abdomen full of air, so they can see what they are doing. It slowly works it way though our internal skin and gets rid, the only way it knows how to.

      I have been to the site you named and yes there are a lot of blogs there. Nearly all the sites do the same thing and I have my blog listed on a few as well. I’m too tired to bother with them much these days, and they didn’t exist when I was first diagnosed.

      Take care 🙂

      Liked by 1 person

      • I thought you had probably seen the other info, but I had to make sure. You have been delt a full hand of problems that as you said can’t be fixed? I really hate that. MS is truley a most hateful disease. I cant believe there hasnt been more done to cure or
        prevent MS., and some other diseases, like lupus. I know so many people with lupus. 4 are relatives. 2 sister in laws passed before their 30th bday.Too tragic. Too cruel. Thinking of you always….🌻

        Liked by 2 people

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