Living with Severe #Crohns, fundraising to improve treatment rooms at SickKids Hospital: #JacobsHealingRooms; proud science nerd, anti-bully advocate, blogger
@ColinDMello Why in the discussion about #SafeSeptember is no one talking about the lack of isolation plan for a class with a possible exposure? By the time a positive result comes back and public health intervenes, it's too late.
@manvscolitis My colectomy, I have never second-guessed, my colon was so diseased and damaged, it needed to go. I've never had any stoma issues, but have had to deal with skin allergy/irritations. Clothing has been the hardest thing for me I find. But I also have a feeding tube.
@SickKidsNews What about kids like me who are long-term immuno-suppressed? Is it safe for kids like me? What about me healthy half-sister who will be returning in the fall, can she be around me and still go to class? What would my risks be?
@gabirosu22@CrohnsColitisCA It sorta does mine. But the reality is that after missing the last 5 years of school, I have no one to celebrate it with other than my mom, grandparents and sister. So instead, I figured I would just try to do some fundraising for a worthwhile cause to mark my day.
So disappointed in my @LucidSoundAudio headphones. I love the sound, but can't believe that they broke after only like 3 months. Wish I had been gifted the receipt to go with them π’π No more gaming as a distraction from the pain π’
@Sara_Ringer Does your abscess have a fistula to it? Sorry you're riding this awful nauseating boat with me. This is my first pair of abcesses in my 7 years. The butt one is healed. The other is a 3x5x7cm superior-anterior to the rectal stump abscess extending to the spine
@Sara_Ringer So now I'm on to making Jacob's Healing Rooms Foundation to raise funds for patient care projects (like helping with supply costs, funding camp for a child with IBD or an ostomy, being able to support research we feel is worthwhile, etc.
@Sara_Ringer The good news is that I've finished my Jacob's Healing Rooms Project - 3 treatment rooms with bubble tubes, IPads and fresh artwork to make the infusion rooms friendly!
@Sara_Ringer I'm also having weird drainage from my missing rectum that shouldn't be there but hasn't been addressed. It's on my Tuesday list of things to call the doctor about, assuming I'm not in-patient by then.
@Sara_Ringer Weekends are rough at the hospital, with limited community play lounges available. Even though every room has a TV & DVD player, sometimes you just want to be around others. But with the weekdays being super long, sometimes the quiet is nice.
@Sara_Ringer Holidays often are celebrated a few days before with nothing really going on for the exact holiday itself. Halloween was the bomb though - local companies gave away toys instead of candy. Only downside was most of it was for little little kids.
@Sara_Ringer I'm most often in isolation, which means no community play lounges and if someone special is visiting, they often skip you. Isolation + holidays suck as all special activities are in common areas you can't go.