Hi everyone, I had ostomy surgery about 5 weeks ago and thought I would introduce myself and share my story. I was originally diagnosed with ulcerative colitis my senior year in college (1987) and we very sick for a few years before finally have my colon replaced in 1989 with a J-Pouch. At that time I had a temporary ileostomy for about 10 weeks and I remember very clearly thinking this would be perfectly fine to keep full time the J-Pouch surgery doesn't work -- my IBD was far worse. Unfortunately, I developed chronic pancreatitis and had to have another abdominal surgery for that several months later. The J-Pouch surgery was very successful and was a complete life-changer. I had been on heavy doses of steroids for 2 years prior (biologics didn't exist then) and was in a lot pain all the time. But 6 months after surgery, I quit my job and moved from New York to Steamboat Springs, Colorado for to become a ski instructor for a winter. I then moved to Los Angeles where I did lots of physical activity (beach volleyball, basketball, skiing), met my wife, and we have raised 4 kids (my youngest is now in high school). Fast forward to about 10 years ago and a) my diagnosis was changed to Crohn's Disease and b) I increasingly began not feeling so well. Then 5 years ago, I received my third gastro diagnosis (along with Crohn's and pancreatitis) -- I found out I had Celiac's Disease as well. I tried various diets (no dairy, SCD, Low FodMap) and 4 different biologics but continued to get worse. My GI said my J-pouch was really inflamed and suggested surgery since the biologics were not working. Due to the heavy scar tissue from the two previous surgeries, my surgeon warned me this would be risky both in possible complications as well as possibly not being able to actually remove the J-pouch. She was going to try to do it laparoscopically with robot but would switch to open surgery if not possible. The surgery was very successful, although she did need to do open surgery. I have been recovering slowly but steadily and looking forward to an improved life with an ostomy. (One thing I hadn't realized was how this should make hiking so much easier! I had been having 8-12 bowel movements a day pre-surgery so long likes -- which I love -- were very difficult or impossible. Now I realize I can just empty my bag into a container any time and go on multi-mile hikes without discomfort!) This site and these forums have already been very helpful. Looking forward to learning more and meeting everyone. Regards, Welcome Gary, Quiet a journey to get here and sounds like yer doin great. The very best going forward 👍 ileostomy 31st August 1994 for Crohns Hi Gary, you're very welcome. Yes, here is our big family. I joined half year ago during my dark time . With this family, I could walk out of my darkness and walk forward more bravely. Eric has put many valuable videos here. I got most of my ostomy knowledge from here. Gary, That's quite the journey you've made. My youngest brother had Crohn's disease, and at the time, steroids were the only answer. It does sound like you have things well in hand, though! BTW, you don't look old enough to have a teenager! (Must be my age showing!!!) :lol: Stella Hello Gary...Welcome!! Its always nice to meet a fellow ostimate! I found Eric's site by accident & understand well the benefit if his knowledge, experience & willing heart to share his grueling story with others & to also give so much of his valued time! Thanks Again Eric!! Knowing your not alone with the little Alien on your tummy sure helps a ton! Having a place to go & get answers & even a hey, glad you joined us can help a million times over no matter how you got here! Feel free to ask anything you need to ask or just to jaw about something in the Lounge area! I tend to agree with you, I would have skipped the J-pouch step if I'd been given a choice. I had a few tear filled sessions here after learning I was not as alone as I had been feeling with my ostomy. Its wonderful you have a great cheering squad at home! That certainly goes the mile doesn't it!? Glad you joined us! Linda Thank you everyone for the warm welcome. Happy to be here. BTW, you don't look old enough to have a teenager! (Must be my age showing!!!) Thank you. Actually the picture is 10 years old. But then again, my teenager is my youngest. My oldest is 23 so even then I had a teenager. Funny thing is that my hair is still dark but post-surgery I have not yet shaved. And the resulting beard has come in white, not brown. Making me look much older!. Planning on shaving tomorrow as I head back to work (from home though) on Monday. I'm sorry I'm late to the party @football99, but I did want to welcome you to the forum 😀👍 Just your friendly neighborhood ostomate. Hi Gary. You are so right about the ostomy making hiking easier. I just posted about doing a bag empty above 13,000 feet. I live in Montrose, Colorado. And, welcome! welcome! I love meeting new ostomates, as I am still new to this myself (year and a half post op). Best wishes on your new journey! Ulcerative Colitis (1995)
Gary
~ Crohn's Disease ¦ Ileostomy ~
Permanent Ileostomy (2019)
Doing what it takes to enjoy life to its fullest.
Community Forums
Notifications
Clear all
Introductions
11
Posts
9
Users
25
Reactions
579
Views
Topic starter
May 27, 2021 2:54 pm
May 27, 2021 5:43 pm
May 27, 2021 8:54 pm
May 28, 2021 8:37 am
June 3, 2021 10:25 am
garyh reacted
Topic starter
June 4, 2021 12:26 am
SqueakyandLiza reacted
Topic starter
June 4, 2021 12:31 am
June 4, 2021 2:34 pm
June 10, 2021 4:29 pm