Abdominal fistula

Groundhog

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.

Santosha12

@Groundhog Hi, I'm sorry for the fears you have, and what you've gone through, I have similar fears and worries at losing what independence I have currently (mostly housebound/no family etc and completely on my own, I'm 61).

So yes, I think like this most days at some level or other.

I am/was a nurse until I lost my job 18 mths ago because of health and I understand your fears because of 2 stoma bags and the complexity of your situation. I had a lot of experience looking after patients in nursing homes over 8 years and that included colostomies, ileiostomies and urostostomy. Most of my patients were independent in their care of them but not all.

I arranged for the specialist stoma care nurse to come in to provide training for staff who were then supervised until competent in providing the safe care. The ordering of supplies I made mostly my responsibility, I was very pedantic and felt the responsibility to make sure nothing ever ran out as I had seen that at a couple of homes and is completely avoidable.

I hope you don't mind me suggesting something that might help you to worry less.

I personally would write a 'crib sheet' almost a 'Dummy version' of what is needed, for you. I'd include some detail of what you have, exact products needed and quantities at each order, how often they're changed, step by step guide on how to do it and then some sections on other important considerations (medications you might be on, dietary considerations - your choices and wishes).

You may never need this and will, I pray, remain independent, but you have it ready in the event that it is needed.

Have you heard of Colostomy UK, they're a very good source of support and have a helpline.

There's also Voiceability who provide an Advocacy service and The Advocacy People (think the latter are only in the South West). Also Social Services for Advocacy. Not needing any of their help now is possibly still good for you to know who can help if the need ever arrives and to have that information readily available for you, or your husband. This might help give you a sense of control now with regard to your future, and then less worry. I've done a Living Will/Advanced Directive for instance (I know its not though set in stone and can be overridden by a doctor).

I hope I've not stepped over a line with suggestions. I worried often for 16 yrs about how on earth I was going to pay off my interest only mortgage: I was rehomed in a HA bungalow 2 yrs ago because of health so needlessly worried for sooooh long as it just got sold in the end.

I do wish you more better days and a way to work out the answers that work best for you. Take good care and best wishes x

Groundhog

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