I found myself sitting here falling into floods of tears, for what feels like no reason. I was fine until the district nurse called, it was the one that I really like, although I can’t tell you her name, so nothing new there then. She was the one who came to see me first, to talk through the whole process of them coming here to give me eneama’s and to help me with the problems I had then recently started to have with my bladder. I have seen her a couple of time since then, but following that gap and after the news I had from the continence nurse the other day, I decided to update her. When I started to tell her about the possibility of having a permanent catheter, the tears suddenly started to flow. I didn’t expect them, as there hasn’t been a single one until then, but with the door opened, they have just kept reappearing without permission.
All of this intervention and changes that are underway with my carers, plus the feeling that I am losing more and more of my abilities to live normally, just suddenly became too much. I know that right now, nothing is definite and in many ways that in itself, is making it all the harder. Right now, I would love someone to just say this, this and this are happening and it will all be done by such and such a date. As I said to the nurse, I hate the fact that it is up to me, to make the decision as to if or if not I have a stoma. All this fiddling around with eneama’s which work sometimes and not others is starting to get to me. If it were as simple as them pushing the liquid in and I sat on the loo and everything just left my body, then great, but it’s not. Again today it failed, nothing other than a couple of tiny blobs that must have been sitting low in my guts. The bulk, the bit that has been sat there for two days, causing me discomfort and even pain, didn’t shift at all. Of course, we didn’t know that was what was going to happen when we were talking. She had asked me if I had an appointment to return to the hospital, which I don’t, I told her that as far as I knew, it was now up to me. If we didn’t get a result with the eneama, good enough to leave me comfortable, and if I decide that I can’t handle things any longer, then I will request a return appointment, to give the go ahead with the stoma. She said that she was going to check the letter from the doctor, as she said that she felt that there should be some kind of follow-up.
Having gone through all the disasters of the eneama’s failing, and the fact that I am still finding myself no further forward in getting rid of the pressure and the pain, I agreed that it was time to try a change. Although it was something I don’t really want, from the point of view of having space in my life for other things, like being me, we’re stepping it up to three times a week. Monday, Wednesday and Friday, if that fails, we’ll go for every second day, which is what the consultant wanted, but not my GP, the district nurses, of myself, who all felt that was just too much. We have to try everything as a stoma, is the final step, one that I don’t want to take, if, something else could mean I could avoid it. As I said the other day, I believe that my bowels are behind my bladder not wanting to empty, so it could be a fix for both. No, I don’t want a permanent catheter either, if it can be avoided.
When she left, I was still lying in my bed, with tears rolling down my face. It was me who told her to go, I felt able to get off the bed and to go by myself to the loo. Keeping her there, felt like another pressure that I didn’t need, as I knew she had many other people to see. She double and triple checked and assured me that if I needed her to stay, she would, but with her gone, the tears then flowed freely, without the restriction that I was putting onto myself, of not wanting to cry in front of her, for what felt like no reason. I lay there for about another ten minutes before heading to the loo. I already knew that nothing was going to happen, I had had the eneama inside me for twenty minutes and I felt nothing. I pulled myself together while I sat there on the loo and told myself to stop being so stupid. It kind of worked, if two or three times an hour escaping liquid running down my face, could be called working.
I don’t know why I suddenly feel as though I am under pressure by all of this. It’s not like anything has really changed. Maybe, it is a psychological change that is needed. Maybe, I need to start seeing my eneamas as routine, not as something that is there as some sort of demand to perform. I’m not stupid, I do realise that it is the fact that I have the final say when it comes down to the stoma, that is getting to me. I so wish someone else would stand up and tell me what to do. I just don’t feel that my mind is in the condition to make such a huge decisions, as it feels like it should be a purely medical decision, but I also see that it can’t be. The continence nurse saying there wasn’t a safe amount of time to have a bladder that didn’t want to empty, hasn’t helped either. There must be a point when it changes from safe to dangerous. I don’t want to call for an ambulance for my bladder to suddenly empty by itself when I reach the hospital, just as it suddenly let go other night. I don’t want to even have to go to the hospital at all.
The district nurse phoned me in the afternoon, as she said she would. What I had said was totally correct, the decision about the stoma is all up to me. I admitted to her that I am at this second in pain from my guts, she rightly said to me that it’s a long time to Monday, so one of them is going to be here tomorrow, to try again. Maybe tomorrow, it will be totally different. Maybe tomorrow it will work, and maybe tomorrow I won’t have to worry about all of this ever again, which tomorrow that is, I don’t have a clue.
Please read my blog from 2 years ago today – 06/08/2014 – I’m still here
Two Rooms Plus Utilities 
While my problems are not as severe as yours, I totally understand. I was feeling waves of depression over the last while and had no idea why. Then all of a sudden I started feeling pain in my kidney again… another stone I am sure. There is no point in going to the hospital unless I believe it is lodged. All they will do is give me some pain medication and tell me to go home and wait until it passes. I don’t want their pain medicine. I can cope with the pain, I just want the stone gone so I can get on with my life. Sending you big hugs and prayers. I hope everything works its way out very soon. Lydia!
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Thank you (((Hugs)))
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*HUGS*
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Reblogged this on Musings On My Life.
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Thank you again (((Hugs)))
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Hello,Im sorry about yr situation.I take the same med as U and it causes chronic constipation.Itried lactelose which is gentle can’t do savage these days. The”joy”of it is that U can increase it to twice a day if it doesn’t work and usually is ok.I know that you may already have tried it but didn’t want to let it pass in case you hadn’t.Life is a sod.I wish I could remember what I did to make so much payback.!!I get a lot of pleasure from my garden birds and today I find I have a hse martins nest with chicks in.Ive tried for yrs to entice them in to my artificial nest and suddenly here they are.I am thrilled to bits.What was that about small minds?They didn’t build in the artificial one but on the side of it.I hope that things sort themselves soon for you.Holding you in my thoughts and sending love and hugs.Nancy.x
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There isn’t a drug I haven’t tried, but the problem now is that the nerves are dying and many of the muscles that are supposed to push everything through me, no longer work. It is a mechanical problem, not what I eat, or my drugs. Just as my problems with breathing is also mechanical. My body is slowly closing down and has been working on it for years.
I don’t think either of us have done anything to deserve this, life isn’t really like that. We are just the unlucky ones, but we are proving that life is still good. Look at you today, over joyed by the simple things, the things that matter, the beauty of our world and all that is in it. I hope now that they have found you this year, they will continue to come and bring their friends and family as well.
Take care of yourself (((Hugs)))
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Really words fail. But I can only send prayers of strength and calm. As for the tears, they are good. We all have to say good-bye to somethings and maybe you can look back and laugh at the fact you really will miss peeing.
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You’ll know when to say, “Enough”. I hate to see you struggling so hard. What ever your decision… The goal is to be as comfortable and as pain free as possible. Remember….. Every step brings you to a “New Normal”. Grieving the old normal is important too. Sending you so many, (((((hugs)))))
🌼💐🌸🌻🌺🌷
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It’s making the decision that is getting to me. I’m not a medic, so how do I know if I am right or wrong?
I have no idea why it all just came to the surface, but I guess none of us can hold all these things in when they decide to out us. I probably needed to let it all out as I do feel much better now that I have. Once I hear back from the Nurse, one way or another I know I will feel better, as not knowing is far worse than even hearing the answer you don’t want to hear. Hopefully, she will call on Monday 🙂
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You have a dedicated support team. The state our brains are in, making such a big decision is overwhelming. I’m glad you feel better emotionally. Crying is the steam emitted from our internal pressure cooker. I hate it but a person can only take so much and being in pain on top of it sets us up for a major melt down. Take care of you. Don’t give up. Sending love and hugs to you both.
🌻
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I wonder if my sister may be able to offervideas. My niece has no bowel control, no muscle that works and she does a particular procedure nightly that has been working. If you like, I can perhaps get an email address fir her to send you more information. Meanwhile, I hope you allowing tears has brought you some peace.
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They did, one day of tears and I feel brighter about the whole thing, but I can’t wait for that phone call, to know what the plans are one way or another with my bladder. As for my bowels, I would be very interested if your sister knows something that might help.
Thank you 🙂
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Can you give me an email address? I hope what she does can help.
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Are you on twitter, if so I can DM it to you, that way it’s not open to all. If not, I’ll make a new account 🙂
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I have just opened an account to use **************** It makes it easier without changing platforms
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I will send info to Lisa.
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Thank you 😀
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I’m sorry. It doesn’t help, but I just had to say I’m sorry you’re going through all of this.
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I know just how you feel about so many things being up in the air and the whole uncertainty of everything. I’m going through the same thing (with the bathroom stuff as well). To those who are well these may seem like small things but they’re not. There’s a real reason to cry.
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One I have been coping with for ages, but two, that just broke me. Getting it out of my system has helped, I just hope the nurse calls on Monday. People don’t understand any of this until they are there themselves. It’s tough and it’s truly not easy 🙂
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I feel your words as you speak them and the tears roll
I deal with a lot of pain daily and many of the same issues I cannot control
I hate when I get feeling so down about my body’s rebellion against me and feel so overwhelmed by the loss of it once being healthy and able
I am sending prayers and hugs to you
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Thank you 🙂
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Not being able to empty your bladder is very scary. It is a hard situation to face when we get to the point of having enemas become routine. I never expierenced this except second hand when a loved one could no longer empty their bladder. It took a few surgeries to help them do so and was glad it worked. The last thing you need when your going through so much pain is the discomfort of not being able to relieve yourself. Stay strong and know that there is nothing wrong in crying to help deal with your emotions.
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Thank you, I know tears are the most wonderful release when life is pushing you in so many directions at once. For me, they are a rare occurrence, hence my post as I was so surprised to find me unable to totally stop them.
My body is an entire nightmare, but I know that at least both of these problems, will be sorted one way or another. I just have to let the medics work their way through the options, then decide what I want them to do. Easy to say, just much much harder to do, but I will get there. 🙂
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All of this is so dreadful and I wish so badly you didn’t go have to go through any of it. I can relate to many of the same feelings you have for different reasons. I really think that illness, even illness you have had to suffer through for a long time or even since the day you were born, takes ages to get used to because we are reminded over and over again that we’re sick and different. Every morning we have to wake up and decide if we are going to accept it and attempt to do what we can with it, or if we just don’t have the energy to do so. And honestly, sometimes being unable to handle it is totally alright. As I always say in my own posts, everyone is allowed to acknowledge their pain.
I can especially relate to how you feel about not thinking you can make the decisions on your own and wish you had someone to tell you what to do. I never really had decent parents and from a very young age I had to make big decisions with little help, regarding my health especially as my mother never had the best in mind for me. It’s scary.
Now that my mental health is suffering I feel less equipped than ever to make big important decisions about my health and what’s best. I’m ridiculously thankful that I just recently got a social worker, and while she can’t make decisions for me she really, really helps to guide me and to get me where I need to be. It doesn’t fix everything but it’s helpful. Is there some type of assistant or social worker that you may be able to get to help you along?
You have all my love, as always ❤
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I have my husband, but he a long with your social worker can only listen, while you sort it out in your own head. I only realised it later after publishing my post that part of it, was because I had high hopes for the enemas, they too are proving not to be the answer I was looking for. I know there are still possibilities and three a week may work better than two did, but it just feels like tinkering.
I’m glad that you have found someone who helps you when there are those tough decisions to make. I guess because you don’t see them every day, makes it more decisive than chatting continually.
The good news is that I feel more positive about it now and the news in my post that goes out today, helped a lot.
Take care of yourself (((Hugs)))
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Yes, your bowels are what is putting pressure on your bladder, making urination difficult. Enemas don’t always work on the first try, especially if there is intestinal gas. Twice the volume, or several tries are often needed. Difficult if you can’t self-administer. Best of luck with all this.. Your courage is an inspiration.
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I too suffer with this. The only thing that works for me is prune juice. I drink 2 cups and it works!! I tend to get bladder infections which seem to come around the time i have to start drinking prune juice again. I drink cranberry juice fir my bladder pain. These two juices make my life bearable. I know your pain and your life…and i am so sorry. Thank God people like us can communicate with one anothet. I went to emergency room for excruciating leg pain. I think it may be deep vein thrombosis. The treated me like a drug addict. They let me scream in pain for 5 hours. I fell on the floor when getting out if restroom and 2 employees walked by and ignored me. Their main objective was to not give me anything to relieve the pain. They finally gave me enough pain reliever to get the flareup undercontrol. We are on our own. They act like they hate us.why would you become a doctor if you don’t care and are so annoyed by the fact that people have pain.
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I’m afraid that juices don’t touch me, but my problem is mechanical, as the nerves that are supposed to pass on the messages to my intestine and bowels, aren’t working.
The treatment you had, if it can be called that, was atrocious. As you say, why be a doctor, if you don’t care. 😦
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Please do explore alternate healing methodologies. Acupuncture has restored my life to me and I am sure it will help you too..
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I’ve been there many years ago now. I tried several different things and the only thing that changed was my bank balance. I’m glad that it works for you 🙂
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