- Joined
- Dec 1, 2012
- Messages
- 69
Hey people 
I'm gonna post my story, from beginning to the end. Honestly, I don't think I've ever done this before so it may be a bit tedious.
It started the summer of 1999, so that was like when I was 12-13. I remember some days getting really upset for one reason or another, and my stomach hurting really bad because of it. The more my stomach hurt, the more blood spilled. But even still, I got along in school okay, and played basketball. Like some others, I didn't say anything about it because it was a bit embarrassing and I really didn't think too much of it since it really wasn't something disabling. It wasn't until my teenaged angst years of when I was fourteen, in the summer of 2000, that my illness just blew up.
It began like a virus--throwing up, diarrhea, fever... everything. I couldn't eat anything. My weight went from 110lbs to 90. I hadn't eaten solid food in about a month. The Dr. finally asked, "do you see blood when you go to the bathroom"... and then that's when I had to go to the hospital and got a whole bunch of tests done. They thought food poisoning, but everything was ruled out. I was finally diagnosed with UC about 4 days into my hospital stay. While there, I had to get 2 blood transfusions. I was put on Prednisone first, then I had to take it with Budesonide and Imuran when I got home. Eventually, I weaned off the Prednisone, then Budesonide, then stayed on the 100mg of Imuran. I remained on the Imuran until my first flare 5 years later at age 19 (right on Thanksgiving day).
At the first signs of it, my GI put me on Colazal, which did nothing except make me throw up a whole lot. I was thrown into the Emergency room about 4 times (since yous know that UC plays tricks on you thinking that you're okay, when you're really not). I went from 125lbs to 95lbs. I was prescribed mesalamine enemas (which made things worse), and I was on high doses of prednisone for months, which sent my self-esteem down the toilet (unintentional pun). I stayed in the hospital from Nov. - December 27 2005. Remicade was the drug that ultimately put me in remission. around Feb of 2006, I switched hospitals to receive my Remicade infusions.
My new GI messed up and put me on a higher dose of 125mg of Imuran in the summer of 2006 which dropped my RBC's. I had to go in for iron infusions every week, but they were doing nothing. I had to stop my imuran completely, but remained on my Remicade. After the imuran was completely out of my system, I started getting allergic reactions to the infusions (not being able to breathe, lightheaded feeling, red in the face, etc.). Even with the Benedryl and anti-allergic preps, I still was receiving reactions. Eventually, I landed myself into a flare since my body was rejecting the Remicade. In Sept. of 2006, I was admitted for my second flare. I received a sigmoidoscopy the day I was admitted. I was only there for about a week or so, and the flare was over. I was then put on Asacol in addition to the normal 100mg of Imuran and 50mg of Prednisone. The last day of my hospital stay was the first time I ever heard the word "Crohn's," as opposed to my UC, as a result of the sigmoidoscopy findings.
After taking 12 Asacol a day (4 tabs 3x), I started getting this ringing in my ear (tinnitus). My GI and ENT didn't connect the Asacol to my hearing loss (derrrf). The more I took it, the louder the ringing got and the more I started to lose my hearing. I got down to moderate-severe hearing loss in my left ear, and hyper-acoustic in my right. I stopped taking the Asacol and the ringing stopped, but the loss remains permanent. After going off the Asacol, my flare started to occur once more. My GI put me on Prednisolone, and it worked for a while, but stopped. I was admitted July 28, 2007. This was the last time I saw that crack-pot GI.
I was being fed Predisone and Imuran, praying everything would go away. I was taken out after about 5 days and remained on Prednisone and Imuran. Nothing was happening, so I was put on Humira. I was given 2 injections, and things weren't getting any better. I was readmitted and had to get surgery. As a result from earlier colonoscopies, my rectum was the only part that seemed normal. So during my stay, they had to make sure this was the case--that when I had surgery, it wouldn't have to be a j-pouch, but rather a resectioning. So I went through hell... got a sigmoidoscopy while I was awake (my body was immune to the anesthetic since I was downing so many Percocets) and had to get a barium enema.
On Aug. 31, 2007, I went into surgery and had a subtotal colectomy ileorectal anastamosis done laparoscopically. I was home by Sept. 5th. Everything went great, until I had to get readmitted into the ER 2 weeks later. I had a CT scan done and they found an abscess in my abdominal cavity as a result of the surgery. I had to get it drained out--which was hell. My stay lasted a week and a half, and I was sent home on antibiotics.
Sometime that winter my Crohn's started coming back around my anastamosis. I didn't feel any pain, but I wasn't hungry or anything. I started seeing other manifestations of IBD like erythema nodosum on my legs which eventually went away. But there was one that wouldn't go away. In fact... it hurt so bad that I had to limp. I woke up one morning to find it draining (or at least that's what I thought was going on).
Pyoderma Gangrenosum
You know... pain is pain. It's difficult to say which part of IBD was definitively the WORST part but my bout with PG comes close to mind. For those who don't know, PG happens to an extremely small population of individuals who have crohn's. It's a very aggressive form of gangrene usually on your leg that is absolutely excruciating. I have pictures of its progression, but I will spare the weak stomachs. I couldn't walk or do anything. I was admitted into the ER with a pretty deep ulcer in my leg and had 2 steroidal injections in an open wound that appeared similar to a gunshot. Yup... I had to deal with my skin melting and being pulled off with each cleaning. But within about 6 months, it was completely healed with continued injections and Protopic ointment.
Perianal Crohns
Well after 5 years of being okay, now I'm dealing with perianal crohn's. I got a 4cm ulcer in my anal canal and a couple other superficial ones surrounding it. I'm awaiting to go on Cimzia and hope for the best but preparing for the worst.
I have never gone to a support group tangible or intangible I think because I always thought it would be best dealt with alone (silly, I know now). I look fwd to participating and learning about other experiences here.
Thx.
I'm gonna post my story, from beginning to the end. Honestly, I don't think I've ever done this before so it may be a bit tedious.
It started the summer of 1999, so that was like when I was 12-13. I remember some days getting really upset for one reason or another, and my stomach hurting really bad because of it. The more my stomach hurt, the more blood spilled. But even still, I got along in school okay, and played basketball. Like some others, I didn't say anything about it because it was a bit embarrassing and I really didn't think too much of it since it really wasn't something disabling. It wasn't until my teenaged angst years of when I was fourteen, in the summer of 2000, that my illness just blew up.
It began like a virus--throwing up, diarrhea, fever... everything. I couldn't eat anything. My weight went from 110lbs to 90. I hadn't eaten solid food in about a month. The Dr. finally asked, "do you see blood when you go to the bathroom"... and then that's when I had to go to the hospital and got a whole bunch of tests done. They thought food poisoning, but everything was ruled out. I was finally diagnosed with UC about 4 days into my hospital stay. While there, I had to get 2 blood transfusions. I was put on Prednisone first, then I had to take it with Budesonide and Imuran when I got home. Eventually, I weaned off the Prednisone, then Budesonide, then stayed on the 100mg of Imuran. I remained on the Imuran until my first flare 5 years later at age 19 (right on Thanksgiving day).
At the first signs of it, my GI put me on Colazal, which did nothing except make me throw up a whole lot. I was thrown into the Emergency room about 4 times (since yous know that UC plays tricks on you thinking that you're okay, when you're really not). I went from 125lbs to 95lbs. I was prescribed mesalamine enemas (which made things worse), and I was on high doses of prednisone for months, which sent my self-esteem down the toilet (unintentional pun). I stayed in the hospital from Nov. - December 27 2005. Remicade was the drug that ultimately put me in remission. around Feb of 2006, I switched hospitals to receive my Remicade infusions.
My new GI messed up and put me on a higher dose of 125mg of Imuran in the summer of 2006 which dropped my RBC's. I had to go in for iron infusions every week, but they were doing nothing. I had to stop my imuran completely, but remained on my Remicade. After the imuran was completely out of my system, I started getting allergic reactions to the infusions (not being able to breathe, lightheaded feeling, red in the face, etc.). Even with the Benedryl and anti-allergic preps, I still was receiving reactions. Eventually, I landed myself into a flare since my body was rejecting the Remicade. In Sept. of 2006, I was admitted for my second flare. I received a sigmoidoscopy the day I was admitted. I was only there for about a week or so, and the flare was over. I was then put on Asacol in addition to the normal 100mg of Imuran and 50mg of Prednisone. The last day of my hospital stay was the first time I ever heard the word "Crohn's," as opposed to my UC, as a result of the sigmoidoscopy findings.
After taking 12 Asacol a day (4 tabs 3x), I started getting this ringing in my ear (tinnitus). My GI and ENT didn't connect the Asacol to my hearing loss (derrrf). The more I took it, the louder the ringing got and the more I started to lose my hearing. I got down to moderate-severe hearing loss in my left ear, and hyper-acoustic in my right. I stopped taking the Asacol and the ringing stopped, but the loss remains permanent. After going off the Asacol, my flare started to occur once more. My GI put me on Prednisolone, and it worked for a while, but stopped. I was admitted July 28, 2007. This was the last time I saw that crack-pot GI.
I was being fed Predisone and Imuran, praying everything would go away. I was taken out after about 5 days and remained on Prednisone and Imuran. Nothing was happening, so I was put on Humira. I was given 2 injections, and things weren't getting any better. I was readmitted and had to get surgery. As a result from earlier colonoscopies, my rectum was the only part that seemed normal. So during my stay, they had to make sure this was the case--that when I had surgery, it wouldn't have to be a j-pouch, but rather a resectioning. So I went through hell... got a sigmoidoscopy while I was awake (my body was immune to the anesthetic since I was downing so many Percocets) and had to get a barium enema.
On Aug. 31, 2007, I went into surgery and had a subtotal colectomy ileorectal anastamosis done laparoscopically. I was home by Sept. 5th. Everything went great, until I had to get readmitted into the ER 2 weeks later. I had a CT scan done and they found an abscess in my abdominal cavity as a result of the surgery. I had to get it drained out--which was hell. My stay lasted a week and a half, and I was sent home on antibiotics.
Sometime that winter my Crohn's started coming back around my anastamosis. I didn't feel any pain, but I wasn't hungry or anything. I started seeing other manifestations of IBD like erythema nodosum on my legs which eventually went away. But there was one that wouldn't go away. In fact... it hurt so bad that I had to limp. I woke up one morning to find it draining (or at least that's what I thought was going on).
Pyoderma Gangrenosum
You know... pain is pain. It's difficult to say which part of IBD was definitively the WORST part but my bout with PG comes close to mind. For those who don't know, PG happens to an extremely small population of individuals who have crohn's. It's a very aggressive form of gangrene usually on your leg that is absolutely excruciating. I have pictures of its progression, but I will spare the weak stomachs. I couldn't walk or do anything. I was admitted into the ER with a pretty deep ulcer in my leg and had 2 steroidal injections in an open wound that appeared similar to a gunshot. Yup... I had to deal with my skin melting and being pulled off with each cleaning. But within about 6 months, it was completely healed with continued injections and Protopic ointment.
Perianal Crohns
Well after 5 years of being okay, now I'm dealing with perianal crohn's. I got a 4cm ulcer in my anal canal and a couple other superficial ones surrounding it. I'm awaiting to go on Cimzia and hope for the best but preparing for the worst.
I have never gone to a support group tangible or intangible I think because I always thought it would be best dealt with alone (silly, I know now). I look fwd to participating and learning about other experiences here.
Thx.
