Incontinence - the bad one

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.

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My heart is so sad for you xara, I truly understand how you feel because your story is so like my own. PS, somehow you have tagged on to an old thread from 2012. Doesn’t matter really as others will still reply. If you would like to “chat” please feel free to contact me via Pm (private message) Hang in there Elljay

These stories from Xara are the real ugly side of MS - my heart goes out to her & her hubby - blasted condition

Hello Xara

Like the other respondents, my sympathies to you and your husband. You are fortunate in such a gem of a husband. I too have such a diamond.

I had a colostomy two years ago. I can’t say it’s the complete end to all worries regarding the bowels, but it does help. In order to change it yourself, you do need hands that just about work well enough. There have been times when I’ve had to have help - occasions when my dearest husband has had to help with explosive diarrhoea! But it’s better than having his help with Peristeen/Qufora. Indeed, if you end up having to have him change the stoma pouches every time, it would still probably feel that you are less of a burden than the irrigation method of bowel emptying.

I hope your hospital works quickly enough that you aren’t waiting forever for the colostomy. Once the decision is made you want it done and over with.

Rest assured that your husband would probably rather be shackled to you in his retirement, despite the problems that MS brings, rather than being able to live unfettered and free - but without you.


Thanks so much for the kind words. The thing is a pill cant fiix the way i feel. Its sadness and so far no happy pills. I asked him to bring down some photos just to prove to me i did have a life before MS . Its helped a bit. I feel bad complaining but so many unhappy times in my life . I am trying not to cry. It doesnt help him.i just want him to be happy. The nicest guy in the world and he chose me? I a m just very sad he hasn’t got what we expected. I cannot help that so need to get a grip. Hugs all xxx

I too thought that I should give my Other Half a chance - when I was first diagnosed I said to him that I didn’t know how things were going to go, and if he wanted to leave now, I wouldn’t hold it against him. And bless him, he told me not to be daft and he was sticking around… he’s still here. I feel quite guilty though… but it is his own choice to stay, despite not getting what he’d signed up for!

Yes its rare to get a husband so good and to stay. I told him to go and in the end stages things would be bad and hard ,but he didn’t. I mention nursing home he wont have it. Reluctantly he agrees while he has surgery. He thinks in a few days he will be fine and get on lifting and turning. I know he cant so 2 weeks booked in. I hate it but can guilt free be turned at night and all the other ghings he does. I will be more comfortable without guilt. A break for both of us. Thanks for sharing. I am not depressed just one of the many unhappy with their lot. I cant change it but acceptance is hard.