Apprehensive +++: I am 73 and I live in... - Living with a Stoma

Living with a Stoma

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Apprehensive +++

skylark15 profile image
6 Replies

I am 73 and I live in England. Amongst several other conditions, I have a very slow transit bowel and SIBO. These, combined with a contribution from my late-diagnosis of Muscular Dystrophy, lead to chronic constipation and I've been told that an elective ileostomy may be the only permanent solution to the painful bloating and excrutiating pain of defecation, when it does happen.

I've read the leaflets that I was given by the stoma nurse and they paint a very rosy picture of living with a stoma (of course). However, I have also been reading all the posts on here and on other HU communitities, written by people who have stomas (admittedly written very early after that surgery) and they paint a very different picture...

The Facebook communities are just as scary. Does anyone have an entirely happy life with their ileostomy? I'd be very grateful to hear from such people. Thank you.

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skylark15
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6 Replies
mhoam profile image
mhoam

Hi skylark15,

I had my ileostomy in 2018 when my Ulcerative Colitis was actually killing me. There are, of course, some practical issues to get used to and I found the stoma nurses at my local hospital very good at helping with those.

My stoma has given me back control and allowed me to lead a realtively normal life.

I'm glad I did it!

Good Luck

mhoam

skylark15 profile image
skylark15 in reply tomhoam

Thanks so much, mhoam! My bowel condition/s aren't killing me, just proving a real nuisance and a social life spoiler.

Tess xx

kimmo profile image
kimmo

Hi Skylark,

I suffer from an autoimmune condition called systemic sclerosis. In 2010 I collapsed without warning and woke up several days later in ICU with an ileostomy bag, having lost my colon and large intestine to this awful disease. To say my life changed overnight is an understatement!

It took me several weeks to come to terms with my stoma, then it was as if I’d had an epiphany as without it I would have been dead. I appreciate your situation is different, but I think as long as you’re aware that it won’t all be plain sailing for a little while, the bigger picture far outweighs this. There will be some pain and uncomfortability, you have to re-educate yourself re food and what you can/ can’t eat and how your bag behaves! It’s daunting at the beginning but the one thing I found helped me the most was a positive mind set.

I’m 14 years on with ‘Elvis’ now and still have the odd bad day, but these are very few and far between. My stoma from the outset has never stopped me from doing anything I wanted to do from sport to beach holidays!

Online communities and resources can paint scary pictures but think positively and that your pain issues will be resolved and your life will be better for it 🥰xx

skylark15 profile image
skylark15 in reply tokimmo

Dear Kimmo,

Thank you so much for your encouraging response 🤗🤗. I'm sorry you had to go through such a bad experience S/S is a dreadful condition, from what I've read on here and elsewhere. However, the epiphany, and your positive approach sound wonderful. It's great that you still participate in sports and feel comfortable on the beach. Why Elvis?

I will try and think more positively about the possibility of ending up with an ileostomy, and I will keep this message to give me heart if/when that happens. Thank you again.

🤗😘

kimmo profile image
kimmo

I have always had an eclectic taste in music! I listened to lots after my op and long stay in hospital and my young granddaughter was actually the one who wanted me to give my bag a name at the time it happened. In her way I think it gave her a much clearer understanding of why I had something attached to me that I hadn’t had before as my daughter had told her it had saved my life. Whatever her reasoning we came up with Elvis as she said I loved his music and she loved my bag for saving me. The truthfulness of children is wonderful. It’s been Elvis since that day and lots of people I know who have a stoma name them. Perhaps you may understand our way if it does happen to you! All best wishes for what lies ahead and if you need to chat I’m always available 🥰

skylark15 profile image
skylark15 in reply tokimmo

That's so lovely, Kimmo!

Because I haven't yet reached the stage of really needing an ileostomy, I haven't shared anything about my problems with any of our (very many and mostly male) grandchildren. My two daughters know that it might be necessary and they are supportive of me.

Thank you for your kindness.

Tess 😘😘

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