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This page will no longer making any active posts so follow @RaremarkHealth for continued rare disease news, updates and more - including posts on #pouchitis!
Embarrassing noises can impact my daily habits. It's embarrassing to eat and drink around other people.
💜Anyone else?
https://t.co/GXJbvHwsqY
#IBD#crohns#ulcerativecolitis#ostomy#Jpouch
In this #podcast, Dr Barnes (@EdBarnesMD from @UNCGastro) discusses his recent #research into the prevalence of #pouchitis among patients who have undergone ileal pouch-anal anastamosis surgery.
>> https://t.co/Yv7alpg5eg <<
#gastrotwitter
How can I communicate better with my healthcare providers?
* Be descriptive
* Be straightforward and honest
* Don’t go alone
* Write it down
* Make use of digital
Read more in our article.
#pouchitis#jpouch#IBD#colitis#crohns https://t.co/LQNfJFr4x8
Which pouchitis symptoms need medical help right away? We look at some warning signs to watch for, based on the most common reasons for hospitalization among people with pouchitis.
#pouchitis#jpouch#IBD#colitis#crohns https://t.co/WLGT9WTMRr
“Set realistic expectations. Know that the first year is the biggest period of adjustment. Connect with other patients for support. Remember not everything you read online is accurate. Know that most of us are happy to have had the surgery and life improved.”
#pouchitis#jpouch
We’re Raremark, and we’re building an online platform for rare disease patients and caregivers. To make sure it’s useful, we’re running a survey to find out what content patients and caregivers would like to see on our site. Let us know! #pouchitis#jpouch https://t.co/pdDmw4tI97
What is gene therapy?
Around 80% of rare diseases have a genetic link. Many of these diseases don’t have any good treatment options, but gene therapy might help. So what is gene therapy, and how does it work? https://t.co/NExaz2Zkna
Talking to co-workers about your condition. It’s your choice what to say about your illness and how much to share. But if you have an emergency at work and your co-workers already know about your condition, they may be able to help you get through it. https://t.co/MvCDmeS6xa
Asking for emotional support when things get tough. If you’re not asking your friends and family for help, you’re missing out on important sources of support.
#pouchitis#jpouch#IBD#colitis#crohns https://t.co/H8jrKFKa8e
“Set realistic expectations. Know that the first year is the biggest period of adjustment. Connect with other patients for support. Remember not everything you read online is accurate. Know that most of us are happy to have had the surgery and life improved.”
#pouchitis#jpouch
We’re running a survey to find out what patients and caregivers would like to see on Raremark. Let us know what’s important to you, including any topics you haven’t had the courage to ask about yet.
Take our survey today!
#pouchitis#jpouch https://t.co/pdDmw4tI97
Communicating with doctors and other health professionals isn’t always easy. We look at a few things you can do on your end that can help improve communication.
#pouchitis#jpouch#IBD#colitis#crohns
What causes a J-pouch to flare up with pouchitis?
Have you had a sudden flare-up of your J-pouch for no obvious reason? Learn some reasons why you might have pouchitis.
#pouchitis#jpouch#IBD#colitis#crohns https://t.co/dRUZnUKVGN
Asking for emotional support when things get tough. If you’re not asking your friends and family for help, you’re missing out on important sources of support.
#pouchitis#jpouch#IBD#colitis#crohns https://t.co/RTCLf5FmFT
Ben’s story: Staying positive with pouchitis
Ben, a father and rugby coach, underwent surgery for ulcerative colitis when he was 19 years old.
#pouchitis#jpouch#IBD#colitis https://t.co/m7Z6hmLocz