- Joined
- May 21, 2015
- Messages
- 184
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 high school,everytime they would try to taper me off I'd get a severe flare and get hospitalized.When they took me off everything after a few decent colonoscopy's I started getting a ton a massive migraines (at least 5 a week) for a couple years after seeing many doctors and many different meds they found something that worked.Since being off prednisone the weight I gained didn't come off I was up to 235lbs And very active.In 2002 I got the flu and couldn't shake it and the stomach pain and diarrhea was back I missed a ton of work and spent atleast 90% of the next to years in the hospital.in 2004 I had the worse pain I ever had it felt like someone was squeezing my insides as hard as possible and stabbing them a million time and some tests revealed I had toxic megacolon and I need 3 surgeries to Finnally get a J-pouch.
After I got a J-pouch I was always sick with pouchitis atleast every month I'd been hospitalized and soon started having a stabbing pain in the pit of my stomach,my GI,my surgeon and ER doctors told me I was fine and the pain kept getting worse about 4 or 5 months later still being told I'm fine the pain was unbearable and one night I woke up leaking I went to the ER and they told me my J-Pouch burst and actually blew a hole in me.They did emergency surgery and afterward I was in tons of pain and they had to do another surgery due to infection.After the surgeries I felt trouble for about 3 months and again was told I was fine,but one night I woke up in tremendous pain and bleeding from my new hole,it seemed the J-pouch that burst was left in me in hopes of reconnecting it in the future had become severely infected and needed another surgery and I started having real bad joint pain and pyoderma gangrenosum.Over the next few years I dealt with blockages and multiple bouts of inflamed pancreas,fistula's and abscesses.
In 2010 I started feeling better and was gaining weight I got up to 136lbs. The most I'd been since my colon removal but 2 weeks later I got a severe blockage that my surgeon didn't want to do surgery due to my stomach damage and the blockage didn't pass for 5 and a half weeks and a got pneumonia and I got down to 98lbs since then it been tough gaining weight and my joint pain has gotten worse.About a year and a half ago I got a bad case of PG again and I'm still dealing with that but it's getting better and now that it's somewhat under control I'm Finnally gaining weight I went to my GI less than a month ago and I'm 143lbs. The most I've been since my colon being removed in 2004.
If anybody here is going through anything similar and needs to talk I'm here.
After I got a J-pouch I was always sick with pouchitis atleast every month I'd been hospitalized and soon started having a stabbing pain in the pit of my stomach,my GI,my surgeon and ER doctors told me I was fine and the pain kept getting worse about 4 or 5 months later still being told I'm fine the pain was unbearable and one night I woke up leaking I went to the ER and they told me my J-Pouch burst and actually blew a hole in me.They did emergency surgery and afterward I was in tons of pain and they had to do another surgery due to infection.After the surgeries I felt trouble for about 3 months and again was told I was fine,but one night I woke up in tremendous pain and bleeding from my new hole,it seemed the J-pouch that burst was left in me in hopes of reconnecting it in the future had become severely infected and needed another surgery and I started having real bad joint pain and pyoderma gangrenosum.Over the next few years I dealt with blockages and multiple bouts of inflamed pancreas,fistula's and abscesses.
In 2010 I started feeling better and was gaining weight I got up to 136lbs. The most I'd been since my colon removal but 2 weeks later I got a severe blockage that my surgeon didn't want to do surgery due to my stomach damage and the blockage didn't pass for 5 and a half weeks and a got pneumonia and I got down to 98lbs since then it been tough gaining weight and my joint pain has gotten worse.About a year and a half ago I got a bad case of PG again and I'm still dealing with that but it's getting better and now that it's somewhat under control I'm Finnally gaining weight I went to my GI less than a month ago and I'm 143lbs. The most I've been since my colon being removed in 2004.
If anybody here is going through anything similar and needs to talk I'm here.
