Iliostomy advice confused and very sca... - Living with a Stoma

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Iliostomy advice confused and very scared

Tired45 profile image

Hi I am a long sufferer of slow transit constipation marred with pelvic adhesions. I am having a iliostomy next week and am confused and petrified. Would welcome any advice or comments 

11 Replies

Hi my name is Lex I'm 55 married and I also got an ilyostomy I got mines 27th October last year I'm coping well with it in fact I didn't think I would I draw on my bag every night I do cartoons  Hope it helps x

It will be the best thing you've ever done. I'm 6 months down the line. Never felt better. I suffered for years with slow transit. 

Tired45 profile image
Tired45 in reply to 4939

The surgeon is saying leave rectum and large bowel in and removing later ? Do more surgery!!  I have read the mucus from doing this causes its own problems. I don't want to go through this then still not be right. 

Really confused

in reply to Tired45

How did that work out ? 

Tired45 profile image
Tired45 in reply to

I had loop iliostomy and it all working ok. I am having probs with mucus. Having to go to loo about three times a day and have diareah from bottom end. Surgeon says normal in early days as as my bowel wasn't working before it prob clearing out and will settle. If not he will review in 6 months and maybe take out rectum and Colon and redundant bowel bag is a lot better than I thought no rolling around in pain so much improved.although massive adjustment  mentally.   We will see how we get onxx

I had my done September 2013 and it was one of my better judgements and never looked back. I was 63 when mine was done.  I had everything removed  and my anal entrance has been fused together.  Go away knowing i wouldn't be looking for toilets and im also bladder incontinence therefore the mucus went everywhere.

I would advise have the whole lot removed to stop other problems which may arise.

Hello lovely, don't be scared. I know how enormous it seems, I've had my ileostomy since I was 23, I'm 40 now. I had a loop ileostomy to start with because I'd originally planned a j pouch but my crohns colitis left my rectal stump full of pre cancerous cells so I had that removed and my stoma made permanent two years after the first op. I had all these horrific mental images of my bag being something huge and obvious. I couldn't believe how little it changed my ability to do sports (triathlons and ultra marathons) wear whatever I want (high waisted bikinis and jeans ftw, more flattering as well as bag hiding!) The first time I saw my stoma with my stoma nurse as she taught me to change my bag, I cried. It looked like an alien raspberry and I was utterly freaked out. That changed so quickly that it now feels funny that I ever felt that upset by it. I promise you will manage it so much better than you can picture now. It's hard to imagine until it's there, but I don't know anyone who hasn't felt the same. I'm very lucky in that my husband and I were already married and my family and friends were incredibly supportive. I don't know much personally about your condition but from what I've read this will make your life more comfortable and straightforward. I wish you all the very best luck. My top tips for hospital stays are earplugs, eye mask, squash (hospital water is beyond disgusting and you must drink plenty), magazines, audiobooks, lavender oil because it helps you sleep and keeps you calmer, and don't forget to speak up if you are in pain, speak to doctors because nurses can only give you what  docs have prescribed. In this day and age you should never be more than sore after surgery. Don't be afraid to speak up, and take all the pain relief offered, if you don't take it regularly you may end up losing your block and then it's hard to get back on top of the pain. Do check back in and tell us how you are, and if you have any questions don't be afraid to ask. Best wishes xxx

Tired45 profile image
Tired45 in reply to Nimmo

Thanks so much I had op 8pm last night and bag just made me jump awake gurgling  away. I am dreading stoma nurse coming and making me look at it. Know I'm going to freak out. I will let you know how I get in I had loop iliostomy too. But if I get on with it will be made permanate. I'm married with teenage children. They are very supportive. But we had terrible experience with my father in law. He had op go wrong and ended up with two stomas and fichela in the middle to flush them out. He suffered with bags not sticking and pain but it gave us 3 more years with him. But that was a factor in the way we dealt with me having a bag. My daughter who is 14 is really struggling with me being in hospital.  But I don't feel too bad this morning very tired but had ketamine. 

Thanks for replying I will keep you updated xxxxxxx

If you're coming from where you are , you'll be fine . You're having all the nasty effects and the ileostomy will sort that out . So not leave hospital without being totally ok with the stoma stuff . Speak to your stoma nurse , make sure you're ok before you leave . I didn't and I ended up back in the local hospital . The stoma nurses are amazing but they're busy so do make sure you're ok with them . 

Hi home now everything you said about stoma true. I cried three days after seeing it. Even now three weeks later it freaks me out but getting used to it.  Much better than constant bloating and rolling around on floor in agony and passing out trying to poo. 

We will see how it goes then have rest removed xxxx

For me it was difficult at first but now I just get on with it.

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