Not for the newly diagnosed .When Quafora /peristeen gets too much and life too hard to bear.
I want you to read with care. I lost the original post and maybe just as well. The sadness and humiliation was more than I could bear and I was sobbing thinking about the unfairness. Sorry this is very long’
I was diagnosed 38 years ago with a 6 week baby and a 2 year old. I had very aggressive MS and in spite of throwing all they could at me. I had intravenous steroids by injection into a vein, it was a new treatment from the USA then. Later you had it diluted in bags. They tried immunosuppressants but I went down fast and within 2 years I was in a wheelchair.
I am giving a background, so you understand.
We got on with our life, and after 10 years I stabilised but with not much left. I could transfer, do self-catheterisation, but the rest was muscle wise very weak and no feeling in my legs at all. My nursing career long over, I went back to university and did social work – I should have been prepared. I managed 13 years, but hereditary deafness struck and communication was too hard. Things went along ok at the same level, my life was happy, and our retirement cottage prepared in France for retirement next year.
3 years ago disaster struck a sudden flare up and transfers were history. My bowel that had always been very slow in transit – 15 days when I was given tiny rings to swallow and track back 15 years ago just packed up. I didn’t want my large bowel removed then. so preserved with laxatives. In a short time of just months, I had a urinary catheter then a suprapubic. A hospital bed and a hoist , and my weak trunk meant a slump to the left I had my wheelchair adapted. My whole life suddenly came to a halt. We changed the car x2 as the adaptions were not right. The wheelchair adaption … It hasn’t worked and I get pressure sores on my let side. There is no more to do.
Laxatives were causing gastritis and I was loosing blood from my stomach and so the Qufora system of anal irrigation was the last chance. Its an updated Peristeen. Horrified I was told nobody would do it, not nurses or carers , it had to be my husband. I cried buckets, and all the time he was saying Its ok it doesn’t matter. I love you and will do anything for you. I love him but was I strong enough to allow him to do this? He didn’t mind he said – but I do. This is my husband I snuggled up to bed with, had my 2 children and a normal a married life as we could. On arthritic knees awaiting a prostate op 2 kidney and a bladder stone I was asking more?
So with trepidation we went ahead. A few disasters when some piles got burst and I bled a lot and we just can’t get it right. My bowel won’t cooperate. We can’t get the right texture of faeces for it to work. All I have done is cry and I mean cry buckets. At night alone its unbearable. The humiliation I feel and all I get is its doesn’t matter I love you.
Last week I was just devastated and decided a colostomy was the way forward. It will take time as I need to go to see the gastro people. Have lots of investigations before referral to the surgeons. Things going downhill every day my breathing worsening it may not happen.
I am so upset and my humiliation at home, doing this just won’t go away. Things take so long now with the NHS it may be 2 years before a colostomy decision.
What do I want. I don’t know? nobody can help me with the humiliation. Our retirement cottage and future life is gone. I have lived and fought so hard to ensure MS wont take my life but this is the last bit of me and I don’t want to feel like this. I cant do anything about France. Brexit has wrecked it anyway, I guess. I am in a mess and antidepressents wont work or can be given as I am on a goodly dose of oxycodin as my spine is in a bad state with slipped and slipping thoracic discs. I have never asked ‘why me’ but as I watch retirement couples enjoying life I ask ‘why us’ I hung on so long and it all fell apart. My husband truly loves me. and me him. It hurts to see him tied to me on his retirement when we should be happy. My friends and life is in France. He has to be upset but never shows it, just holds my hand as I cry myself to sleep. I knew MS was hard. But this hard no.