Hi All I have Crohns — Scope | Disability forum
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Hi All I have Crohns

Shastus
Shastus Member Posts: 52 Connected
I have Crohns since 1977 I now have short bowel and an Ileostomy. I’m happy to try and help any other Crohnies 

Comments

  • janer1967
    janer1967 Member Posts: 16,311 Disability Gamechanger
    Hi and welcome to the community Feel free to join in or ask any questions 

    Thanks for sharing with us about yourself there are other members who have the same condition 
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,477 Disability Gamechanger
    Hi @Shastus - & adding my welcome to this friendly community. Thank you for joining with your mention of helping others with Crohn's disease. As Jane mentions we have other members that suffer from this, so your input will be much appreciated, thank you. :)
  • rubin16
    rubin16 Member Posts: 238 Pioneering
    Hi welcome to the community,

    I have crohn's disease too being diagnosed when I was 18 back in 2009, I've had several operations and now have my second but perminent ileostomy as I have had most of my bowel removed.
  • Shastus
    Shastus Member Posts: 52 Connected
    Thank You for lovely welcome. Rubin I too have had most of my bowel removed after 6 resections first diagnosed 1977 I really don’t want to lose any more bowel. I’m happy to help if I can 
  • Tori_Scope
    Tori_Scope Posts: 9,505 Scope online community team
    Welcome to the community @Shastus :) It's great to have you with us! 

    Thank you for your kind offer, I'm sure there'll be plenty of members who could benefit from your knowledge and experience. How do you find living with Crohn's and an ileostomy? 
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  • Shastus
    Shastus Member Posts: 52 Connected
    At the beginning 1977 after my first resection and colostomy formed I wouldn’t accept colostomy couldn’t bring myself to touch it then 2 weeks on whilst still in hospital I thought this is going to be my life from now I’ll have to get on with it. It was difficult and had nobody to talk to about it back then no internet or social media didn’t have stoma nurses back then so just got on with it. The bags back then had korya seal was like a brown goo which just fell off when got warm and sweated things have come a long way since then. Since my last resection had Ileostomy formed and only 4 ft of small bowel left no colon it’s dehydration that’s my problem now. I’ve started getting pain again and had scopes last week and Contrast MRI today so waiting for results of that to see whether I double up Humira or switch to something else. Fingers crossed it’s not Crohns flare again I don’t want to lose more bowel.
  • rubin16
    rubin16 Member Posts: 238 Pioneering
    Hi again,

    I struggle with being thirsty all the time and always need alot to drink, I also crave alot of salt and salty foods and always put lots of salt on my food. I also seem to get alot of cramps all over my body now and then too from lacking nutrients. I'm also on Adalimumab (humira) and have to inject it every 2 weeks. I've recently just had a mini flare up so i'm on special steroids at the moment to help which seem to be working. One thing I find annoying and embrassing is my ileostomy is overactive alot and so I tend to leak alot which distrubs my sleep.

    I'm sorry you think you might be having a flare, I hope its good news and fingers crossed your crohn's isn't flaring. Crohn's is a nightmare of a condition I just wish there is a cure found in the future, but your not alone.
  • Shastus
    Shastus Member Posts: 52 Connected
    Same here Rubin put lots of salt on anything I make love Mac n cheese at the minute but could be I hate it next week appetite is terrible. Yes I remember about 8 years ago being put on budesonide along with Adalimumab seemed to work short term but ended up having last op 6 years ago. Yes a cure would be great to stop this horrible illness. I had a dietitian for a while who told me to add as much salt as I like as it goes right through me anyway. I’m also on 12 loperamide 4 codeine and 4 omeprazole daily to try to slow down output. I empty beg upto 20 times a day and 3-4 times during night I find I’m nodding off few times during day. I know what you mean re leaks I think I now have a inner alarm which tends to wake me up when bag needs emptying but sometimes if I’m very tired accidents will happen. How’s the sling around your stoma? Hope it’s not sore.
  • Cress
    Cress Member Posts: 1,012 Pioneering
    Sorry I'm completely ignorent of this condition...
    But having to empty bags so many times a day and having leaks seems horrendous...
    They don't sound like they're fit for purpose.

  • Shastus
    Shastus Member Posts: 52 Connected
    I find that most leak times for me are during the night while asleep when bag fills to much and forces away from skin. If the skin around stoma gets sore it’s even harder to get bag to stay on and causes more leaks.
  • rubin16
    rubin16 Member Posts: 238 Pioneering
    Yeah I find I leak mostly at night, I also have an internal alarm that I subcousiously check my bag every few hours when I'm asleep and also I have to go toilet 2-3 times at night. I can't remember the last time I had a good full nights sleep. The skin around my stoma gets sore alot and bleeds I have special powder (Orahesive powder) that is like a miracle powder that heals the area. Sometimes my stoma is that active that I struggle to change it after a leak and will be in the bathroom for like an hour trying to change my bag, I've broken down in tears alot of time because of this.

    Its a nightmare to live with, and really affects my already non existant confidence (as I have Autism and schizophrenia too). So life with this ontop of it really is a battle. I also find that if I get stressed I have a flare, so its mainly why my crohn's is so bad becuse of my other illnesses causing stress.

    I wish you all the best though and its nice to find someone having similar problems.
  • Shastus
    Shastus Member Posts: 52 Connected
    edited August 2021
    I know what you mean re changing bag whilst stoma is active I’ve pebbledashed bathroom wall a few times ?. Glad to help when I can and if you need just to get anything off your chest I’ll be here to listen. I know how you feel it’s all a vicious circle. If nothing else this illness will make us stronger it’s not easy but try and keep your chin up.

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