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  1. persephone300

    Clothing help needed for UK ileostomy

    To any ladies out there with an ileostomy, can you help me? I haven't been able to get any jeans to fit well since I had my op. They are way too tight over my bag, and it feels constricted, and I've been a "leaker" in the past - and the same goes now, I'd worry the whole time it couldnt...
  2. persephone300

    Discomfort and issues continue - advice needed

    Hi there I’m feeling a little down and would really like some advice... I had my subtotal colectomy in Oct 2012 due to severe crohns. I hadn’t had a history of crohns in my small intestine. My stoma was more like a opening indented in my skin (and I posted pics), and so I suffered for months...
  3. persephone300


    It's not the first time, and altho I never ate loads and loads Thurs night, I ate more than I have been eating. I woke up fri morning with an awful pressure feeling behind my stoma, which basically lasted all day. Absolutely horrid, so everytime I bent over, it hurt there, and it would output...
  4. persephone300

    Problems with coffee

    I never had any problems with coffee before, could drink it right up until bedtime and still sleep. Might just be a coincidence, but last week I had two cups of coffee, the latest at 8pm and despite being tired couldn't sleep til gone 3am. Today I had 2 cups, but the latest at 1pm and I can't...
  5. persephone300

    Uncomfortable tickle when "outputs"

    I get a vbery uncomfortable feeling when it "outputs". Like a vibration tickle, which I really don't like Is this because of what I've eaten do you think, or the fact that it is so close to my skin when it outputs, so it vibrates, or is already burnt? Does anyone know? It often makes me jump.
  6. persephone300

    Free samples?

    Is there one website which is best to go on to get some free samples of stoma supplies? Or do you have to just tart around?
  7. persephone300

    UK - medical exemption

    I ticked the box for medical exemption on the form for a permanent fissure i.e ileostomy needing an appliance, but I'm still not sure if it's permanent. It seems to be different depending on who you ask. Id hate to get all prescriptions free then get told I had to pay money back cos I was...
  8. persephone300

    Inverted stoma - problems with leakage onto surround skin

    My new stoma is very inverted - they said it was due to my weight, and that when I lost weight, it would stick out more, but it is causing problems. Plus the "hole" is right at the bottom, so when it leaks it basically has nowhere else to go but on skin. They're trying me on a concave bag to...
  9. persephone300

    Gas and stink - 1 week post op

    Any advice on the above? My stomach feels so bloated and gassy it's horrific - when does it settle? I'm told it will, but the wind pain is by far the worst at the minute. Any suggestions on how to get it to settle? I've read the posts about bag burping - but so far not really sure what that...
  10. persephone300

    Wind probs post surgery

    Had the surgery friday. Been up and down and get conflicting stories. Was done by lap. I've thrown up every night, last night all acid and bile because still not really eating, the stoma nurse says it's working but only in part which is why I keep being sick. The worse thing is the wind pains...
  11. persephone300

    Waiting for surgery Friday

    ...just waiting now, trying to be prepared as possible for my new stoma. Tried the practice one out they give you from the hospital and all goes well until I try to change the bag...and then I pull my "stoma" off with it. Sure that won't happen in real life though :P Hoping nothing will go...
  12. persephone300

    Preparing for stoma failures!

    I finally got to see the surgeon who has marked me as urgent for the removal of the large bowel and ileostomy - which apparently will still be October probably. I've had a practice with the "practice stoma" and seems simple with the gel. Now after reading all the epic fails etc, I'm wondering...
  13. persephone300

    Bovril on picolax?

    For any of you that have used the Picolax clean prep - do you know the answer? The diet sheets mentions about drinking meat extract stock cubes like oxo/bovril, does this include the jarred form of bovril does anyone know?
  14. persephone300

    Replacing anxieties?

    Does anyone ever think that the surgery may just be a way of replacing anxieties for - always being worried about needing the loo - to - always being worried about springing a leak? I keep thinking how wonderful it will be to do things and not worry about the loo after my surgery - but then I...
  15. persephone300

    Recovery time

    I met with the Gastro and have said yes to surgery for my crohns, so awaiting on a date now. I'm just wondering what your experiences are of recovery times - especially those in Uk - with the NHS system etc. I'll be having a full colectomy - it's planned - so there are no complications going...
  16. persephone300

    Claiming benefits in UK with a colostomy bag?

    I work full time - though every day is a struggle, and considering surgery coming up, and read somewhere that if one had a colostomy bag (for me it would be total removal of large intestine etc), that that would make me eligible for Disability living allowance (what level I'm unsure?), and...
  17. persephone300

    Silly stoma questions

    Sorry, I'm not sure what to call them - as everyone seems to call things differently on here, but... Do people find that "accidents" happen quite a lot with a new or otherwise stoma/hole/colostomy bag? Is it right that they come with some sort of cover - so you can't see in them, and then the...
  18. persephone300

    Wiltshire support

    Does anyone know whether there are any "meet" support groups near Wiltshire? I'd really like to meet fellow sufferers
  19. persephone300

    Entire large intestine removal - magic cure?

    The surgery they want to perform for my crohns would mean removing the entire large intestine and attaching the outside bag. Is it safe to say that it will be entirely in remission then? If it is only the large bowel completely buggered, and that is entirely removed, what do you find the...
  20. persephone300

    To surgery or not to surgery ...2

    I was diagnosed with "mild" crohns in 2006, although I've had it since about 1999. I've been on various things in the past including Humira, Adilumimab, pentasa etc and most have not worked and given me bad side effects including nausea, headaches and cellulitis on my bottom every couple of...