Hello fellow IBDers.
I will start with I'm a 32 year old male from Maryland who was diagnosed with Crohns at 15. At first I would have problems with bad constipation and I would get anal fissures that made it excruciating to go to the bathroom so I would hold it in for a week at a time. There were times when I had to sit in a warm tub of water and poo in there. It was gross and painful but at first the doctors couldn't find the reasons for my problems. I had been told I just had hemroids to one doctor suggesting to my father that I may have been anally raped (which of course didn't happen). Finally I made it to Johns Hopkins hospitals team of pediatric GI docs. They did a colonoscopy and endoscopy and came back threatening to call CPS on my mother. They said it was the most blatant case of Crohns they had ever seen and couldn't believe that my parents let my condition get so bad. The relief in the situation was finally finding out what was wrong with me. They tried using medications at first, 6mp, imuran, pentasa, and so much prednisone I ballooned up and got stretch marks from my hips to my ankles that I still have to this day.
Shortly after that we realized I needed surgery. Had my first resection at 16. While I was in the hospital the wound got infected and I got sent home with a open wound I had to pack with gauze everyday until it healed from the inside out. I was ok for a little while after that.
So anyways after high school I started working in the good service industry. I didn't have health insurance and was working at a restaurant that didn't offer affordable insurance at that time. I was about 22 and went through a horrible flare. I got another job at the restaurant across the street because I knew after 90 days I would be eligible for insurance. I made it exactly 87 days before I went to the hospital one night and next thing I knew they were wheeling me off to emergency surgery due to a blockage of inflammation and scar tissue. That was very hard on me because for one I was uninsured and two the surgery was so sudden that the recovery was hard as crap.
Surgery number three was the worst because I was taking humira and Pred and pentasa and was still having a bunch of issues. I was about 26 or 27 at this point and I had to spend a week in the hospital with drains in me to drain abscess and them had my surgery. I cried going in because I knew I was dangerously close to waking up with an ostomy and never ever wanted one. Luckily I woke up with just more drains and a railroad track if staples up my belly.
I was never the same after that surgery. I used the bathroom much more urgently and frequently than I had prior to that surgery. Had more bad days than good.
I'm now 32 and last year I started having another flare up. I remember taking my girlfriend and her daughter to an O's game. That night I ended up with a full blockage that hospitalized me for a week. After that they tried humira again to no avail. Then we switched to remecaid but that wasn't working in the meantime I'm taking 60 mg of Pred everyday. I started seeing a GI doc out of the University of Maryland in the city and after talking to the doctors I finally caved and decided to go the ostomy path. After 4 resections and spending a majority of my days in pain on the toilet or in bed tired all day I decided I needed to take drastic measures to take my life back.
I had the surgery on June 17th and so far have developed a love/hate relationship with my bag. I hate the sounds it makes, I hate the ballooning it does at night ( last night I woke up in pain as it ballooned so much it started popping my wafer off and leaking poo out of the side). Nothing like a 2am surprise bag change. I hate the way it looks and smells. My doctors put me on 50mg Zoloft to help me out there a little. I do however love eating and not having that crampy pain I got so used to having for over 15 years. I can eat fruit and veggies again. Still don't digest them well but im not in terrible pain after.
Guess I will wrap this up for now. If you read my story then thank you. I hope I will be able to deal with this better at some point. P.S. To those ostomates with a significant other, how did you're other/spouse cope with your symptoms and such? Sometimes I feel like my girlfriend doesn't understand how difficult this adjustment is. We havnt done anything fun this summer due to all this and she will say things sometimes about the waste ofbthe summer. Kinda makes me feel like crap because I know it's my fault.
I will start with I'm a 32 year old male from Maryland who was diagnosed with Crohns at 15. At first I would have problems with bad constipation and I would get anal fissures that made it excruciating to go to the bathroom so I would hold it in for a week at a time. There were times when I had to sit in a warm tub of water and poo in there. It was gross and painful but at first the doctors couldn't find the reasons for my problems. I had been told I just had hemroids to one doctor suggesting to my father that I may have been anally raped (which of course didn't happen). Finally I made it to Johns Hopkins hospitals team of pediatric GI docs. They did a colonoscopy and endoscopy and came back threatening to call CPS on my mother. They said it was the most blatant case of Crohns they had ever seen and couldn't believe that my parents let my condition get so bad. The relief in the situation was finally finding out what was wrong with me. They tried using medications at first, 6mp, imuran, pentasa, and so much prednisone I ballooned up and got stretch marks from my hips to my ankles that I still have to this day.
Shortly after that we realized I needed surgery. Had my first resection at 16. While I was in the hospital the wound got infected and I got sent home with a open wound I had to pack with gauze everyday until it healed from the inside out. I was ok for a little while after that.
So anyways after high school I started working in the good service industry. I didn't have health insurance and was working at a restaurant that didn't offer affordable insurance at that time. I was about 22 and went through a horrible flare. I got another job at the restaurant across the street because I knew after 90 days I would be eligible for insurance. I made it exactly 87 days before I went to the hospital one night and next thing I knew they were wheeling me off to emergency surgery due to a blockage of inflammation and scar tissue. That was very hard on me because for one I was uninsured and two the surgery was so sudden that the recovery was hard as crap.
Surgery number three was the worst because I was taking humira and Pred and pentasa and was still having a bunch of issues. I was about 26 or 27 at this point and I had to spend a week in the hospital with drains in me to drain abscess and them had my surgery. I cried going in because I knew I was dangerously close to waking up with an ostomy and never ever wanted one. Luckily I woke up with just more drains and a railroad track if staples up my belly.
I was never the same after that surgery. I used the bathroom much more urgently and frequently than I had prior to that surgery. Had more bad days than good.
I'm now 32 and last year I started having another flare up. I remember taking my girlfriend and her daughter to an O's game. That night I ended up with a full blockage that hospitalized me for a week. After that they tried humira again to no avail. Then we switched to remecaid but that wasn't working in the meantime I'm taking 60 mg of Pred everyday. I started seeing a GI doc out of the University of Maryland in the city and after talking to the doctors I finally caved and decided to go the ostomy path. After 4 resections and spending a majority of my days in pain on the toilet or in bed tired all day I decided I needed to take drastic measures to take my life back.
I had the surgery on June 17th and so far have developed a love/hate relationship with my bag. I hate the sounds it makes, I hate the ballooning it does at night ( last night I woke up in pain as it ballooned so much it started popping my wafer off and leaking poo out of the side). Nothing like a 2am surprise bag change. I hate the way it looks and smells. My doctors put me on 50mg Zoloft to help me out there a little. I do however love eating and not having that crampy pain I got so used to having for over 15 years. I can eat fruit and veggies again. Still don't digest them well but im not in terrible pain after.
Guess I will wrap this up for now. If you read my story then thank you. I hope I will be able to deal with this better at some point. P.S. To those ostomates with a significant other, how did you're other/spouse cope with your symptoms and such? Sometimes I feel like my girlfriend doesn't understand how difficult this adjustment is. We havnt done anything fun this summer due to all this and she will say things sometimes about the waste ofbthe summer. Kinda makes me feel like crap because I know it's my fault.