Hi all,
I've been a lurker here for about a year and thought it was time to introduce myself. Your stories have been so helpful to me that it is only fair for me to share too!
I was accidentally diagnosed with Crohn's in 2006. It was truly a random diagnosis. I was living in Phoenix at the time and had been out hiking. During my hike, I fell 9 feet off the side of a butte and landed on my side on a nice jagged rock. I went to my doctor, who sent me for an mri to ensure there was no internal bleeding. They happened to notice some indicators on my mri and sent me to a GI doc. One colonoscopy later, I was DXed with Crohns. I really couldn't believe it, as I had no external symptoms, other than a perianal fistula which I developed in 2003. (I developed that lovely fistula while in basic training for the Army. The Army docs told me it was an infected hair. They lanced it and packed it for about a week and that was there treatment for it.)
I went for a second opinion, who confirmed it. My GI doc started talking about biologics for treatment. Being a relatively healthy 20-something, I opted not to take any meds and actually moved abroad for a year. No one else in my family had the disease, and I still couldn't believe that I did either.
I was fine until June of 2012. I started to get pains on my lower right side just about the same time as my cycle started. The first month or two, I chalked it up to cramps. In August '12 I knew it had to be more. The pain was debilitating. Waves of pain would come and go and all I wanted to do was lay in bed. I put myself on a clear liquid diet, and it would help. I finally made an appointment with a GI. (I had moved back to PA at this time and this GI was completely new to me.) He ordered a colonoscopy which I finally got scheduled for mid October. I couldn't wait that long; I was in so much pain at the end of September that I made them reschedule me ASAP. In my colonoscopy, they found that I had a partial blockage due to stricturing/scar tissue. He sent me home with Pentasa and I started drugs. I adamantly refused Prednisone. About a week later, he added Purinethol to my regimen.
I seemed to be doing better, but again, it only seemed to strike once a month, right around my cycle. In December, I felt it come on again. It was Christmas Eve and I was having dinner with my family. I could feel as I took my first bite of dinner that I wasn't going to be eating much. Over the next few days, I ate very little and dealt with the pain. I had pizza rolls on Dec. 30th; it was the last food I had for over 6 weeks.
Jan 2 2013, I called my doc and told me he needed to see me or I was going to the ER. He got me in for an emergency MRI. I was admitted via the emergency room due to the results. I had massive inflammation and scar tissue, and what appeared to be an abscess in my gut. They gave me pain meds in the ER; they didn't even touch my pain. It was to the point where I couldn't even sit up without crying. The pain in my abdomen was like a 100. They started IV antibiotics to help the inflammation. My GI then had me transferred to Penn Presbyterian in Philly the next day as he was concerned I was going to need to have emergency surgery.
Luckily, I responded to the antibiotics. They also put in a PICC line due to my severe malnourishment. I was in the hospital for 6 days but kept the PICC line for another 8 weeks. I went back to work the next day and started the TPN for 12 hours each day after I got home from work. I also started on Entocort and Folic Acid. After having the PICC line removed, my surgeon and I agreed to try to wait until the school year ended to have surgery. (I am a teacher, so the summer was the best time for surgery for me.)
I ended up switching GI docs, to someone that specialized in Crohn's. We looked at all of the options and I ended up having surgery this past June. The surgeon removed about a foot of colon and intestine. Luckily, he did it laproscopically and I had a really easy recovery. Within 3 weeks, I was back to playing tennis and am mostly recovered.
I am now at the next crossroad, trying to decide on my treatment. When I had my surgery, the doc did see signs of inflammation. My GI has basically laid out three options for me:
1 - biologics (Cimzia/Remicade/Humira)
2 - Purinethol
3 - biologic/purinethol combo
I'm not sure which I am going with yet, but have to make a decision soon.
Anyhow, that's my story and I hope it helps others. Thanks for letting me share!
I've been a lurker here for about a year and thought it was time to introduce myself. Your stories have been so helpful to me that it is only fair for me to share too!
I was accidentally diagnosed with Crohn's in 2006. It was truly a random diagnosis. I was living in Phoenix at the time and had been out hiking. During my hike, I fell 9 feet off the side of a butte and landed on my side on a nice jagged rock. I went to my doctor, who sent me for an mri to ensure there was no internal bleeding. They happened to notice some indicators on my mri and sent me to a GI doc. One colonoscopy later, I was DXed with Crohns. I really couldn't believe it, as I had no external symptoms, other than a perianal fistula which I developed in 2003. (I developed that lovely fistula while in basic training for the Army. The Army docs told me it was an infected hair. They lanced it and packed it for about a week and that was there treatment for it.)
I went for a second opinion, who confirmed it. My GI doc started talking about biologics for treatment. Being a relatively healthy 20-something, I opted not to take any meds and actually moved abroad for a year. No one else in my family had the disease, and I still couldn't believe that I did either.
I was fine until June of 2012. I started to get pains on my lower right side just about the same time as my cycle started. The first month or two, I chalked it up to cramps. In August '12 I knew it had to be more. The pain was debilitating. Waves of pain would come and go and all I wanted to do was lay in bed. I put myself on a clear liquid diet, and it would help. I finally made an appointment with a GI. (I had moved back to PA at this time and this GI was completely new to me.) He ordered a colonoscopy which I finally got scheduled for mid October. I couldn't wait that long; I was in so much pain at the end of September that I made them reschedule me ASAP. In my colonoscopy, they found that I had a partial blockage due to stricturing/scar tissue. He sent me home with Pentasa and I started drugs. I adamantly refused Prednisone. About a week later, he added Purinethol to my regimen.
I seemed to be doing better, but again, it only seemed to strike once a month, right around my cycle. In December, I felt it come on again. It was Christmas Eve and I was having dinner with my family. I could feel as I took my first bite of dinner that I wasn't going to be eating much. Over the next few days, I ate very little and dealt with the pain. I had pizza rolls on Dec. 30th; it was the last food I had for over 6 weeks.
Jan 2 2013, I called my doc and told me he needed to see me or I was going to the ER. He got me in for an emergency MRI. I was admitted via the emergency room due to the results. I had massive inflammation and scar tissue, and what appeared to be an abscess in my gut. They gave me pain meds in the ER; they didn't even touch my pain. It was to the point where I couldn't even sit up without crying. The pain in my abdomen was like a 100. They started IV antibiotics to help the inflammation. My GI then had me transferred to Penn Presbyterian in Philly the next day as he was concerned I was going to need to have emergency surgery.
Luckily, I responded to the antibiotics. They also put in a PICC line due to my severe malnourishment. I was in the hospital for 6 days but kept the PICC line for another 8 weeks. I went back to work the next day and started the TPN for 12 hours each day after I got home from work. I also started on Entocort and Folic Acid. After having the PICC line removed, my surgeon and I agreed to try to wait until the school year ended to have surgery. (I am a teacher, so the summer was the best time for surgery for me.)
I ended up switching GI docs, to someone that specialized in Crohn's. We looked at all of the options and I ended up having surgery this past June. The surgeon removed about a foot of colon and intestine. Luckily, he did it laproscopically and I had a really easy recovery. Within 3 weeks, I was back to playing tennis and am mostly recovered.
I am now at the next crossroad, trying to decide on my treatment. When I had my surgery, the doc did see signs of inflammation. My GI has basically laid out three options for me:
1 - biologics (Cimzia/Remicade/Humira)
2 - Purinethol
3 - biologic/purinethol combo
I'm not sure which I am going with yet, but have to make a decision soon.
Anyhow, that's my story and I hope it helps others. Thanks for letting me share!
