Illiostomy anyone? : Hi all, I saw a surgeon today and... - NRAS

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Illiostomy anyone?


Hi all,

I saw a surgeon today and it looks like I'll be having an Illiostomy sometime in 2018. Has anyone any experience of this? I'd be really interested to hear.

To keep this news in it's rightful place, I've signed up for a 2 mile outdoor swim in Windermere. I might not walk well, but I can swim! After a fashion. I can float anyway!

I've also just started Humira so maybe I'll be walking better soon... it isn't as painful as Benepali at least!

Love to all. May the New Year bring much joy xx

16 Replies


I haven’t had experience of an illosstomy but am interested in your experience of Benepali. I am about to Star so would rather be prepared 😁.


in reply to HevJ


Benepali is great for some people. I didn't get side effects- well, none that I could distinguish from the ones I got from mtx. The pain I mentioned isn't really pain- I was exaggerating. Sorry- stupid of me! It just stings/ burns a bit going in. Nothing like the pain from bad joints and over in seconds! I had to come off it because my white blood cells dropped, but apparently this is v unusual with Benepali. Lots of people call it a 'miracle' drug. I hope it is for you x

in reply to LizzieR

Ah gotcha 😁

So sorrry you had to come off it... this RA medication is a nightmare to get right!! X

I haven't any knowledge on this subject,but good luck with your

I've had ileostomy 41 years and wouldn't be here without it. There are products, stoma nurses, social media groups etc to make life with a stoma so much easier these days. None if which existed 41 years ago. But still have travelled the world and held down work all the time. Attitude of mind is important. If you need any advice please ask. There's a brilli ant group called Making Ostomies Cool on FB.

Thank you! It's good to hear a positive story. On the plus side I'm looking forward to more time not in the bathroom; eating what I want and of course no pain. On the other hand I hear horror stories about leaking, infection... Smell! Can I ask if you've had trouble with any of these? I will look at the help group. Thank you! X

Leakage...yes...but so much advice especially for new ostomates from others and s to.a nurses these days.

Infection....yes after Barbie Bum op as it took ages for anal wound to heal. Are you having the whole colon removed?

Smell..yes and no. Only after emptying bag. Lighting a match after emptying helps and there are some brilliant drops by Ostomist you put in bag. The tangy tangerines are my favourite. All available on prescription

Stoma nurses first paragraph lol

So does the leakage stop once you get used to doing it? I'm not sure to be honest. None of my bowel works but I don't think they are going to take it out- just tie it off? I can't have a colostomy because too much of my bowel doesn't work and I'd still get impactions. Don't think I'm having anus closed....

I don't mind the smell when emptying it ( I don't think yet!!) But would be embarrassing when out or with others?!

The smell is very different to normal poo. The large bowel has enzymes in which takes some of the smell away. Ileostomy output smells hortible. Leakage depends on skin and sometimes what you eat or wear or how you move. Sounds complicated but most people find products straight away that are suitable

Ah OK. That explains it. Thank you for taking the time to answer my questions. I'm getting used to the idea x

PS I'd better learn to spell it if I'm going to have one lol ;-) x

Hi Lizzie. With any luck an ileostomy could help solve quite a few problems for you. A friend is quite involved in the Ileostomy and Internal Pouch Association and she said that they had kind people who already live with a stoma prepared and happy to visit the newly diagnosed or newbies coping with a stoma. Might be worth investigating?

Blimey but you're a brave soul. I enjoy swimming too but, being a total wuss, prefer a nice, warm, clean swimming pool in a hot place. I wish you joy too. Hugs


in reply to Gnarli

I hope so! That sounds really good - I'll look into it. Thank you x

Brave or stupid... It's a fine line! X


☺️ ileostomy fun (for "💩s & giggles", LizzieR):

📸 practical pics: from 🕸 website:


🎄 🔖 🎁 🎅 ❄️ ☃️ 🌨 2️⃣0️⃣1️⃣8️⃣ 🎉 🥂 🍾 😘 💋


in reply to Kai--

Thank you x

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