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    #16
    Did they not recommend a glycerin suppository for the other end too? Might help. You can get them over the counter in a chemist.

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      #17
      fjay - no they didn't. But I have so many allergies (including potentially to suppositories) that I think they are wary to try too many new things at once...
      Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

      Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

      Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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        #18
        The issue with suppositories is whilst they'll clear the rectum and encourage some movement, unfortunately they don't have much of an effect on impacted faeces lying higher up, which is best treated top down but yes, every little helps 👍👍
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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          #19
          Thank you so much TinyLady for sharing your experience. It must be horrible for you and I really hope you get some relief soon.

          Thank you to everyone for advice. It seems to be an ongoing problem for all of us and I too have ignored symptoms because I hope they'll go away.

          It's good to be in a group pf people that can be so honest and open about things xx

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            #20
            Welcome to my world with Crohn's Disease...
            I almost look forward to the routine colonoscopy every few years just for the clear out with industrial grade prescription laxatives like Picolax and MovePrep...
            (last one was 3 weeks ago with 24 biopsy harvests).

            What surprised me was previously being sent to my local A&E 4 times in 6 years with an internal bloating, temperature and 'unusual exit attempts' from everywhere except my ears, being poked and prodded externally a few times - "Hmm, it's not your appendix, maybe mention it to your gastro consultant when you next see him..."
            Only when I collapsed in a different city, into their A&E for an X-Ray that identified compaction / Crohn's related problem area, a couple of tests and a shoe-box size consignment of Laxido, did I get a simple and effective means of self administered future management...

            I'm dreading the risk of a potential future of restricted posture (particularly sitting, if present mild leg symptoms progress) - I left my main work of 29 years, a few years ago after just a temporary year in an office, compared to a very active and mainly upright career. The increased sitting posture massively compromised large intestine function with impingement where I have a region of bowel wall problems.

            As my activities levels declined over the last 18 months, I started reasonably regular physiotherapy massage that included the abdominal area at a level that a lot of folk may be uncomfortable with, combined with ensuring adequate hydration.

            Totally empathise with anyone having intestinal problems where additional people and assistance becomes necessary...
            Last edited by Arcadian; 31 May 2022, 21:30.

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              #21
              My husband had similar soon after diagnosis and still mobile at that time. He tried suppositories and over the counter remedies to no avail.

              He went for colonic irrigation eventually, and they gave him some prescription laxative to clear the remainder as there was too much to clear in one session.

              The GP then prescribed laxido with some back up lactulose. He manages with 1/2 sachet of Laxido now, with more as required on occasion.
              Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

              Respiratory and blood gases still within normal range.

              No speech but sense of humour still fully intact.

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                #22
                TinyLady Was so hoping to have heard good news by now Tiny 😥😥😥

                Thinking of you 🤗🤗😘
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                  #23
                  Ellie - no one was hoping more than me😆

                  I'm trying not to cry/ panic. Two days of max doses of laxido and nothing but waterfalls.... I think I might have to go to A and E but I dread trying to sit in that waiting room for hours.

                  I'm also worried that I've not eaten since Monday morning which won't be helping me maintain my weight/ appetite.

                  I also feel pretty rubbish. But as usual, hoping tonight a miracle occurs and I'm sorted 🤞🤞🤞
                  Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                  Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                  Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                    #24
                    TinyLady so sorry you’re still struggling. I thought I was told 10 sachets a day was okay if really struggling. 🤞🤞for you tonight xx
                    Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                      #25
                      TL, go to A&E, you can't wait any longer! I know when we were in a similar situation there was something the Dr could prescribe that the district nurses could administer.
                      Hope all goes well xxxx

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                        #26
                        Thank you, I'm going to go in the morning if nothing happens tonight. I think the problem is quite high up. It's not like I am wanting to go. There is just nothing going on at all.

                        My hubby took the week off work so we could do something with the children... not sure this was what we had planned 😆
                        Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                        Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                        Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                          #27
                          TinyLady They'll probably do an enema - if they do, just shut your eyes, lie back and think of England (and of the relief to come...) xx
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                            #28
                            TinyLady I feel so much for you. The discomfort you are going through. Fingers crossed tonight will be your night. All the best.

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                              #29
                              TinyLady sending you a big hug, I was on laxido but recently I have been changed to Movocol which seems to help me more ( I have previously had issues with impacted bowel) and know how painful it is. Take care and I hope you get some relief soon 😘

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                                #30
                                TinyLady just a thought would reflexology be worth trying?

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