Ileostomy advice please

[WelshMoth]

DM, after years of pain, had an ileostomy 15 years ago. About 3 times a year in the last 5 years, she's started getting blockages in her bowel (because it's so short) which results in terrible pain.

She always dials 999 which results in her being taken to A&E, admitted, hours of taking obs, blood tests, getting put on a drip, and eventually getting an enema inserted into the stoma to clear the blockage.

How do other ileostomy patients manage this? Surely they don't go into hospital each time/dial 999? Googling tells me that patients need to try and flush it out by drinking loads of water, massaging etc, but she always dials 999 immediately and I get the feeling that paramedics are getting impatient.

Would this be a procedure that she could do at home? It would save all the hassle of going to hospital and once the enema is administered, she'd much rather be at home in her shower room (it's a mucky business and she's embarrassed when the blockage is shifted and she's lying in a hospital bed).

I would have thought a bowel blockage was a medical emergency tbh.

Three times in five years is hardly excessive either, I think you're being a little unfair.

Thanks all.
Yes, she has a stoma nurse but their relationship isn't great. My DM isn't very tolerant nor sociable at the best of times. I've considered contacting her but don't want to undermine her.

She's had about 3 attacks for the last 5 years or so, so approximately 14-15 stints. I don't know whether it's considered life-threatening to be honest - last time I called NHS DIRECT for advice and they said it wasn't.

I don't mean to come across as heartless - our relationship is fractious and my suggestions to avoid certain foods hasn't gone down well at all. She isn't looking after herself at all (doesn't drink water, drinks pure oral energy juice or coke by the gallon), is a compulsive shopper (tv shopping) and her home is rammed with items she'll never need, and is undoubtedly dependant in strong pain control. Her pain has been investigated and no apparent cause can be found.

She has lots of problems. I'm trying to sensibly chip away at them one at a time.

I'm grateful to discuss it with you tbh. An older sibling is blissfully ignoring the whole situation.

*pure orange juice

What is causing the blockages? Food wise high fibre, leafy veg and popcorn can cause blockages. Rice can be an issue too I'm told.
And why does she have a stoma? If its Crohns or Colitis it could mean inflammation elsewhere which needs investigating.

I had an ileostomy. It has been reversed now. I had to be very careful about what I ate. Very low fibre diet, avoid food that cannot be digested easily such as sweetcorn and drink plenty of water. Too much caffeine can show down the bowel and add it is a diuretic it means that water is lost from the body.

Unfortunately, your mum needs to take responsibility for her own health and take more care with her diet. I don't think that there is much you can do to be honest it's she is unwilling to do this.

I don't know of any other way or a home method to clear the blockage btw.

Is she is dependant on codeine based pain relief then that could be causing constipation too. She really isn't helping herself at all.

She's been investigated a lot for this pain she's constantly in. Nothing can be found. She's been scanned, examined, MRI, ultra sounds etc and nothing.

She is on mega doses of step 3 opioids - at the moment it's buprenorphine patches and oxycodone for quick release.

When she takes her cocktail of drugs, she's unable to function properly - sleeps a lot, has a poor quality of life. I've tried to intervene and ask her to address her pain control (there seems to be piles of the stuff in her home) but she keeps me at arms length at the best of times.

It's pretty hopeless really. She complains of a terrible quality of life but is unwilling to do anything about it.

She also never gives me a straight answer about anything. It was either Crohns or Colitis that caused her to have the stoma - or, as she tells me, both.

Oh dear, sounds like there isn't much you can realistically do, apart from protecting yourself from the frustration of it all. My DS has a stoma at the moment, so I know the challenge of trying to manage it as a third party, but he's 10 so I have way more control than in your situation.
Is there any counselling you could be referred to, so you have somewhere to vent and build your support system?

I hadn't considered counselling tbh (well, not for me anyway).

She's incredibly unhappy and has always been dissatisfied with life despite being fortunate in many ways. I know she's on antidepressants and I've encouraged her in the past to seek counselling (if only to address the terrible way she feels about her body after having the irreversible ileostomy) but she attends maybe 2-3 times and then she stops attending because she's heard something she doesn't agree with or perhaps the counsellor has suggested she do something and she cannot be bothered. She isn't able to stick to anything, has no routine, sleeps most of her day etc.

I'm concerned about her drug use (the combinations she's on is certainly enough for her to be classed as dependant) - think morphine equivalents - but her GP doesn't seem able to do anything. I've asked him whether it's worth investigating whether she suffers from chronic pain syndrome but nothing g ever comes of it.

I'm also concerned that she's had long term cognitive damage because of all her self medicating.

Sorry - it's clear that the ileostomy issue is only part of the problem. She's 79 years of age and has a terrible quality of life. We hardly see her. It's been like this for 20 years.

Whenever I try and help, it means me 'seeing' her life the way it is - an unhealthy, cluttered, money-wasting, hoarding mess - and then she resents me for seeing it and trying to help so she keeps me at arms length again, until the cycle begins all over again.

thats so hard

Hi, I've had an ileostomy for 19 years and I've had 2 blockages, and if your mum as a blockage she most certainly does need to go to a&e because if the blockage isn't cleared it can cause her bowel to perforate

Certain foods and drinks are more prone to causing blockages (you can find lists of them online) she may want to avoid these, or just have them in small amounts occasionally..

Also if she's having blockages she should be seen by the surgeon who did her surgery (he can investigate why it's happening) and also by her stoma nurse (who can offer her practical advise for what foods and drinks may cause and prevent it happening)

But it's not really something your mum can manage at home , when I had blockages by the time I made it to a&e they were excruciating and I couldn't barely straighten up from the waves of pain it caused