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Recent content by Tubes

  1. Tubes

    Post colectomy questions

    I don’t believe we have a C&C Society but we have something similar about 90 minutes from me they helped my with getting insurance,finding specialists and dealing with disability stuff.Its been a couple years since I’ve been there as they have tired to start support groups but turnout was poor...
  2. Tubes

    Post colectomy questions

    I wish the both of you well and that this nightmare ends as soon as possible. The waiting is awful as you just want answers and the pain to end so when you get to the point where there seems to be a light even if its only flickering at the end of the tunnel and you get an appointment where you...
  3. Tubes

    Post colectomy questions

    Thanks. How’s your son doing?
  4. Tubes

    Post colectomy questions

    Life’s weird I think one of the blessings in disguise of my illness was it helped me see the true colors of alot of people in my life and it distracted me when crappy things happened with those people that i normally would have stressed out about when I didn’t because I had to focus on getting...
  5. Tubes

    Post colectomy questions

    I don’t have a partner currently as I’ve had issues finding the right person that’s alot to take on for someone.Before I had my colectomy I was sick for 2 straight years really bad and I was dating a girl who wanted to party instead of hanging out in hospitals so we ended it.After my colectomy I...
  6. Tubes

    Post colectomy questions

    No problem with everything I’ve been through I got over stuff being embarrassing along time ago and if the info helps somebody that’s awesome that something good came from it. When I first got sick and for the better part of the 1st decade of my illness I was kinda kept in the dark because I...
  7. Tubes

    Post colectomy questions

    I’m sorry to hear that I didn’t realize it was so difficult finding quality health care in New Zealand. In all my year’s dealing with crohn’s my rectum was never a problem until about 2 years ago.Since I had my total colectomy I have gotten 2 to 3 scopes a year(they’d scope the stoma and the...
  8. Tubes

    Post colectomy questions

    Thank You very much for the kind words. I think a huge benefit for you and your son is how much stuff has advanced over the years when I originally got sick in the early to mid 90’s what they knew and could do in this area was so limited so much so for the 1st couple years they thought I just...
  9. Tubes

    Post colectomy questions

    First off best wishes to you and your son.I was 10 when I started having issues with crohns and I was 22 when I had a total colectomy due to toxic mega colon.I had 3 surgeries in 7 months,ended up with a stoma for 7 months and then they went with a J-Pouch.I had the J-Pouch for about a year and...
  10. Tubes

    misdiagnosis

    Hey Andrew, I dealt with being misdiagnosed for almost a decade my original Doctor diagnosed me as having a mild form of ulcerative colitis and all my future doctors went with that blindly even when my symptoms were ridiculously severe and it wasn’t until I had emergency surgery to have my...
  11. Tubes

    Disability/Unemployment/Financial Difficulties Support Group

    I’m glad your getting your money.About 5 months ago after getting nowhere by phone I went to my local office after being told by someone on the 1800 number I waited 5 hours to see someone and then they told me they had no power to help me and couldn’t tell me who could it was infuriating. On...
  12. Tubes

    Question for the rectum-less

    I’m about 5 weeks Post rectum removal after rectal stump blowout and I’m wondering from those that have had their rectum’s removed how long did the spasms lasts and how long till you could sit normally? Thanks and I’ll take my answer off the air.
  13. Tubes

    What are current GI appointments like?

    I was recently wondering because my nephew who's in his early teens has been having some stomach problems and is going to his 1st GI appointment in a few weeks what's it like for Kids today when they go to their GI appointments like just compared to when I was a kid from 1994/95 to 2000 I had to...
  14. Tubes

    Hey People

    Hi everybody I'm kinda new here but I've been dealing with crohn's since 1994 I spent almost a year undiagnosed and when they did it was misdiagnosed as UC in 95 from that point I was on heavy doses of prednisone and asacol aswell as many other drugs(too many to remember) until my senior year in...
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