Abdominal fistula

Groundhog
Groundhog Community Member Posts: 17 Contributor
edited March 2025 in Talk about your impairment

hi all,

Ten years ago I had serious complications during a hysterectomy resulting in a perforated bowel which developed into a fistula. It’s a rare condition and pretty awful, I have 2 stoma bags, it’s a very long story. I’m frequently unwell but have learnt to manage it as best I can. It cannot be fixed as it’s too dangerous. I nearly died when they tried to fix it as I had sepsis and respiratory failure.
im getting very fearful of growing older with this, losing my independence and ending up in a home where they’d have no experience of this as it’s rare. I’m 64, my husband is 70 but no carer, he can’t cope with it. Does anyone else think like this, I know I should enjoy todsy when I can but it’s really playing on my mind. Probably because the social care system is so bad and all I’m hearing are horror stories.

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  • Groundhog
    Groundhog Community Member Posts: 17 Contributor

    hi Santosha

    Thank you for your lovely reply. The trauma caused by the surgery going to horribly wrong has left me with PTSD and I tend to overthink everything. I’m almost too afraid of life to live if you know what I mean. I a,so had a bad experience when my mum went into care hime so sometimes it’s hard to be positive. Thank you for such a lovely reply though and it sounds like you were an asset to the carehome you worked at !

    A crib sheet is a great idea ! Presentky I’m home with no hint of me going into home. It’s just the last 19 years have dsmwmged me so much, I saw how selfish people can be, I saw a different side to my husband which worried me and I thought how will I ever survive if I lose independence. But I know we have to live for now and I will certainly look into the advocacy services you mentioned.

    You most certainly haven’t overstepped the mark and I am very grateful for such friendly and helpful response x

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