A life changing possibility

Sunday turned into a trip into the past, not the distant and mainly forgotten, but the recent and as it turned out, equally forgotten. I mentioned in my last post that I was once more in pain from my guts. Having had two failed enema’s the week before, my body had done what it finds so easy, it had me once more reaching for the morphine tablets. I hadn’t realised until the evening that I hadn’t once reached for a booster tablet because of my stomach for over week, then it all began again. Just as the improvement in my appetite had taken until that afternoon to actual occur to me, I had somehow failed to be even aware of not once feeling sick or having the thought of taking an anti-nausea pill either. I have noticed this oddity before, somehow I don’t notice the improvements, but I certainly notice when they disappear. I have to admit that I find that really peculiar. Surely when you have been longing for four years to be rid of the pain, when it did actually go, I surely should have been overjoyed. In fact, I didn’t even notice it happening, I just settled into my new normal and got on with life.

By the time I went to bed on Sunday, I was once more in pain over my left kidney and I hadn’t been able to empty my bladder since 5pm that evening, not even a dribble. My bowels were so overfull, that they were causing me every symptom I have ever had from them, all in just a few hours. I was up twice during the night, desperate to have a pee but I failed miserably until my fourth awakening just after 4 am when the first trickles managed to escape, followed by an intermittent flow that lasted just minutes. I may not have felt relieved in the way that I wished, but my mind at least found a little rest and going back to sleep was the easiest of my attempts that night.

I quite honestly don’t remember been so eager to welcome the nurses into my home as I was today, and when I told them what the previous 24 hours had been like, they told me that I should have phoned them and they would have come straight out to see me. There is little relief in finding out you didn’t need to wait for something when it was there waiting for you. At least I know for the future, as I doubt that this isn’t going to be the only time that this will happen. Despite having what felt like ridding myself of a huge quantity just after she left, I am already once again in pain. I now know where all the food I ate has been going, nowhere, just backing itself up and waiting to move forwards, once there was space and my muscles could be bothered to work. The nurses are due back here on Thursday, so right now I am going to wait and see what happens.

The rest of Monday passed with nothing of note other than another telephone engineer telling me the fault in our broadband is outside the house and once more was unable to fix it. They haven’t given up, and are still working on it, just not that evening. Throughout the evening I blamed my mood on that news, but when I woke again still tetchy and with a huge desire to snap someone’s head off, I started thinking about it in more depth. Without a doubt, I’m feeling this way because of once more being caught in this cycle of pain and internal pressure. It is like I have stepped back in time to four weeks ago. Finding my smile is actually work, rather than its spontaneity of recent days. It’s amazing just how badly one thing can affect everything about you. It’s not as though all the problems of the rest of me went away as well, that would have been hoping for too much, but it does show just how badly not being able to go to the loo, can affect our entire selves.

I know in reality we are just in the early days of getting this sorted out, and the answers are still sketchy, but finding myself back here, has opened my eyes to the choices that lie ahead of me. If the enema worked as we all expect them to, that would be wonderful, but that is only one of three outcomes I have had so far. The second is no real response that day, other than what I call the dried plug being removed, followed by a constant and steady slow loss of soft faeces and I do mean constant. It is unpleasant but does get rid of it, I could actually live with a balance between that and a proper response, but working out how to achieve either, is difficult. I know it’s about what I am comfortable with, but I have to say that a stoma, now doesn’t sound so terrible. It would mean no enemas and no more fails leading to pain. I’m not there yet, but it has moved up on the list of possibilities, from no way, not ever, to a real possibility. I do though need to give this a really good shot, but how long, is long enough to know for sure? It is a really big decision to make but until the last few weeks, I really hadn’t been aware of just how badly it is affecting me. I have for a long time been putting the blame on many of the side symptoms to completely different sources. Getting this one thing fixed, could really change my life and that’s not an exaggeration.

 

Please read my blog from 2 years ago today – 27/07/2014 – Back to front

Everything is wrong today, all the things that are normally wrong, some are amplified others normal, but on top, there seems to be a layer that is more wrong than I have felt it for a while. I noticed within minutes of getting up that my muscles are once again playing the exploding game, but it was once again my left side that screamed the loudest and had found a pain to travel down the…..

24 thoughts on “A life changing possibility

  1. Have you tried adding a little licorice to your diet? A small piece a day could keep the enema away? Also, opiates will do the opposite. Yeah, I know. I’ve been on them for a year awaiting back surgery. Wish I had eaten licorice back then.

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    • I’m not constipated in that way. My nerves are no longer sending the signals to much of my intestine to move the faeces through me. The fact that at times they simple slide right out, if in range, proves that the faeces themselves are perfectly soft. The psyllium that I eat daily ensures that. I have both enjoyed and eaten licorice in large quantities throughout my life, but never found that it had that reaction, but thank you for your suggestion. 🙂

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      • I just read about it, but no, this is again for traditional constipation. Mine is cause by the mechanics, not the contents. The muscles don’t push stools through me properly, some do nothing others do close to it, and just a few are left doing all the work. It’s caused by my PRMS, not normal issues that most people have with their bowels. But thank you, for taking the time to let me know about it 🙂

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  2. I want to tell you something encouraging and helpful, but all I can think of is that I wish I could hug you and say I’m sorry that things are so difficult for you right now. Thank you for sharing your story even though it is incredibly painful. You inspire me. ❤️

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    • This is the only way I can think of helping others. I faced my future without the slightest clue of what lied or lies ahead. I just hope that what I write, will help some who’s path is similar, and for others to simply have the strength to deal with theirs. (((Hugs)))

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  3. Speaking of licorice, have you tried licorice root tea? It has wonderful health benefits. I use it all the time but you must be careful to not drink too much of it. This is difficult as it is simply delicious! I seem to have the opposite problem that you do. When I am in remission, I am so grateful to feel well, I become so excited, forget I am sick and then over do it. I then end up right back where I started with my illness. I am trying to figure out how to break this cycle so I may enjoy longer remissions.

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    • It’s not that I don’t appreciate it, I very much do, as I ear far too much and do too much as well. It’s just that I don’t see these things until I look back. I don’t really even notice that the pain is gone, I just stop taking the Morphine, until it returns. I hope that makes sense, as it is honestly rather odd. As I said, I just move into my new normal, and enjoy it. 🙂

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      • Yes, it makes perfect sense. I did not mean to imply that you do not appreciate. I think maybe I notice the difference too much and go full speed ahead when I should not. Sounds as if we became ill around the same time. I don’t know about you, but after four years, I am ready or a serious break from this!

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      • It’s just the problems with my guts that started 4 years ago. I’ve had PRMS for 30 years, it didn’t start to really debilitate me until 15 years ago. It’s been a long slow ride that left me housebound 9 years ago. I never get remission, at best it plateaus for a while, which it is just now. It just fingers crossed all the time. I suspect it’s very much the same for you. Don’t do too much to push you into a flare, but be sure to enjoy your life. None of us know what’s ahead. (((Hugs)))

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      • That is such a long time to be dealing with chronic illness! I am praying for you and sending healing energy!

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  4. All I can say is, I understand in my own way (I have Lupus)…the uncertainty of what lies ahead sucks, as do dealing with various flares. It sucks when things don’t work right. I hope you find a solution and start feeling better soon.

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  5. Please consider the stoma. My diabetic friend has finally gotten one, and now says that it was the mental adjustment that was the hardest. Once she accepted it as just another part of coping, she’s doing much better. She even went to the beach for the first time in 15 years, she felt so confident that things were under control.

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    • I am seriously thinking about it, but I do want to give the enema’s a good shot. As the nurses say, it is still early days as it will take time to reeducate my bowels, after all, it too many years for them to get into the mess they are in. But if it doesn’t work, the short spell of relief that I had the other week, has shown me that if there is no other possibility, it’s well worth doing. To be free of this pain, and to not have the added pressure on my lungs alone, is life changing. 🙂

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  6. I don’t think I told you, but my asth.a is really kicking my butt. And it makes the pain worse, of course. But the worst thing is my Blood pressure. I have to take it 2 times a day. Trying not to worry, but kind of hard not to. Just an update
    So glad you are getting some peace. Now if you could get your plumbing straightened out !!! Haha ,mine too.. Don’t forget to ask Dr. about Linzess .

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      • Boo I don’t ! And everyone says I need one. Wonder why the doc did t give me one. I coughed so much since thursday evening that I can hardly get 2 words out without sounding like a bull frog. Then the whol voice goes…..I have to call him tomorrow and report to him my Blood Pressure results since Thursday. They are not good.But they seem to be going down little by little. My GP said not to worry because it was probably because of the extra pain I’ve been having. That made me laugh,,then why the he’ll won’t be give me something for the extra pain. The asthma doc said it was a combo of asmatha and extra pain causing my b.p. to be so high. Well whatever it is I just want it to go down !! Have a good evening, nignt, morning , what ever it is there. !!! I am so happy you are getting the much needed help and actually enjoying having someone around for a little while. And most of all I am glad they are good to you !! If you get one who isn’t tell me, I WILL COME AND GIVE THEM A GOOD TALKING TO !!!
        See ya later, 🙋

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      • I hope you continue to see those blood pressure results going down. Doctors are never keen to prescribe drugs for short term pain. It took me years to get the fast acting Morphine to boost the background pain relief that I am on all the time. It takes persistence and a friendly consultant to agrees that you need it, at least here in the UK. Stay strong, you’ll get there (((Hugs)))

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  7. It is better today. Throat and chest not quiet as sore. And b.p. Is going down a little at a time.!!! So glad…..How are you doing ????my pain level has been way up since all this started. Is yours bearable???

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    • Not too bad really, things seem to have plateaued in the past week or so. Still in pain from my insides, I’m not really winning with that one, and a lot of spasms in my chest. I find that if I’m having asthma attacks that I too get raised pain everywhere else, it’s almost as though my body comes out in sympathy, so I do understand. I’m glad to hear that things are getting better for you. It’s really not nice not being able to breath. Take things slowly and rest as it sounds as though you are improving and I don’t want to hear your getting worse, so do as your told. Sorry for being bossy, but I find when I’m told straight, I normally do as I’m told.

      Take care (((Hugs)))

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  8. Haha, bossy is ok when it is given to show you care for others….We are having daily afternoon storms, so that sure doesn’t help things. I’m still working on the blood pressure. Of I could control my stress better I think I would be a lot better off. But then I’m sure we all would.Stress. Such a small word to cause such.huge problems…..how are you , any better on the enama??? I sure thought I had found you something that would help the constipation. But you really have a complicated problem.
    Or I guess I should say problems. M.S. in any form sounds complicated. And yours is the worst I have ever heard of.
    Thinking of you always friend, hope you are having a good day.

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