- Joined
- Feb 5, 2010
- Messages
- 2,429
Hi. My name is Marisa. I am 25 years old and am new to the board.
I haven't yet received a 100% diagnosis, first of all. But the doctors say they are 90% sure it's Crohn's. I think I'm still hoping there's a small chance it's not because I didn't experience many of the "typical" symptoms of people who suffer from Crohn's.
Anyway, here's my story...
It started July 2009 with stomach pains. I thought they were associated with the end of my monthly cycle and birth control. I was taking Seasonique at the time and was a month away from the end of my pill pack when the abdominal pains started. they lasted the rest of the month on and off until I started my new pack. I ignored it for the time being thinking it was just the BCP.
About a month and a half went by before I experienced the pains again. This time it was about a month and a half before the end of my pill pack. I mentioned to my gynecologist that I had been having pains and that I was worried that I was taking Midol for such a long period of time (when the bottle says to consult your dotor if pain persists longer than 7 days). She said it was fine and gave me a new Rx for Seasonique.
December came and the pains were back. They were either getting worse or I was just sick of being in pain all the time. Maybe it was both, but I finally decided I was going to ask to be switched to another type of pill. I called a few days before I flew to Florida with my husband to spend Christmas with my family. I spoke to a nurse who said she would speak with my doctor and call me the following week.
The Tuesday before Christmas the nurse finally called. She said based on my symptoms my doctor thought it would be best to get an ultrasound when I got back into town to rule out ovarian cysts. I scheduled the appointment and tried ti put it out of my mind until we got back. In the meantime, I started having feverish chills at night, waking up drenched in sweat. Every day I was in pain and the smallest amounts of food seemed to make it feel worse. By the time we flew back home I was having a hard to walking and standing up straight from the pain.
The Tuesday after Christmas I had the ultrasound. Everything turned up normal except for an unexplainable amount of "free floating fluid" in my abdomen. I was told to schedule a CT scan at the hospital. Two days later I had the scan and within the hour was told to head to the ER because there was a baseball-sized abscess in my abdomen and I should expect to go to the operating room.
Terrified, my husband and I waited in the ER for 2 hours before being seen. Up to this point in my life I had never had any major surgeries, sicknesses, or broken bones. This was the first time I'd ever sought serious medical treatment for anything. It was New Year's Eve when I was admitted and we had no idea I would be there for the next 12 days.
I had basically every test that could have been done: 4 CT scans, lower GI exam (that was awful), abscess drainage w/ JP drain, and a sinogram. I found out I had iron deficient anemia as well. I had a surgeon, infectious disease doctors, a team of GI specialists, and hospitalists all on my case. I was discharged January 12th still with no 100% diagnosis, but all the doctors thought it was most likely Crohn's. The x-rays showed fistulas and narrowing of the bowel in the ileum where the small and large bowel connect. The only test left to get done was a colonoscopy with biopsy, but the surgeon wanted to give my body time to heal from the abscess with antibiotics. So, they sent me home.
After switching insurance plans and enduring HMO confusion and referrals, I finally saw a GI doctor Feb. 4th. He put me on 9mg Entocort to decrease extra inflammation he said he still felt in my lower right abdomen and would consult with the surgeon about when I should get a colonoscopy. That's basically where I stand as of now. I've yet to hear back from my GI doctor. He said I would only be on the steroid until the colonoscopy was done and then would hopefully never have to take them again.
OF course no treatment has been set in stone since it's all based on the results of the colonoscopy, but he mentioned a biologic treatment (Humira is the only one our insurance covers apparently) and azathioprine. Not sure if those are taken in conjunction with each other or what.
Anyway...that's my story. I am looking forward to learning more and getting to know more people on here. It's been really hard waiting on everything when all i want to do is feel "normal" again.
I haven't yet received a 100% diagnosis, first of all. But the doctors say they are 90% sure it's Crohn's. I think I'm still hoping there's a small chance it's not because I didn't experience many of the "typical" symptoms of people who suffer from Crohn's.
Anyway, here's my story...
It started July 2009 with stomach pains. I thought they were associated with the end of my monthly cycle and birth control. I was taking Seasonique at the time and was a month away from the end of my pill pack when the abdominal pains started. they lasted the rest of the month on and off until I started my new pack. I ignored it for the time being thinking it was just the BCP.
About a month and a half went by before I experienced the pains again. This time it was about a month and a half before the end of my pill pack. I mentioned to my gynecologist that I had been having pains and that I was worried that I was taking Midol for such a long period of time (when the bottle says to consult your dotor if pain persists longer than 7 days). She said it was fine and gave me a new Rx for Seasonique.
December came and the pains were back. They were either getting worse or I was just sick of being in pain all the time. Maybe it was both, but I finally decided I was going to ask to be switched to another type of pill. I called a few days before I flew to Florida with my husband to spend Christmas with my family. I spoke to a nurse who said she would speak with my doctor and call me the following week.
The Tuesday before Christmas the nurse finally called. She said based on my symptoms my doctor thought it would be best to get an ultrasound when I got back into town to rule out ovarian cysts. I scheduled the appointment and tried ti put it out of my mind until we got back. In the meantime, I started having feverish chills at night, waking up drenched in sweat. Every day I was in pain and the smallest amounts of food seemed to make it feel worse. By the time we flew back home I was having a hard to walking and standing up straight from the pain.
The Tuesday after Christmas I had the ultrasound. Everything turned up normal except for an unexplainable amount of "free floating fluid" in my abdomen. I was told to schedule a CT scan at the hospital. Two days later I had the scan and within the hour was told to head to the ER because there was a baseball-sized abscess in my abdomen and I should expect to go to the operating room.
Terrified, my husband and I waited in the ER for 2 hours before being seen. Up to this point in my life I had never had any major surgeries, sicknesses, or broken bones. This was the first time I'd ever sought serious medical treatment for anything. It was New Year's Eve when I was admitted and we had no idea I would be there for the next 12 days.
I had basically every test that could have been done: 4 CT scans, lower GI exam (that was awful), abscess drainage w/ JP drain, and a sinogram. I found out I had iron deficient anemia as well. I had a surgeon, infectious disease doctors, a team of GI specialists, and hospitalists all on my case. I was discharged January 12th still with no 100% diagnosis, but all the doctors thought it was most likely Crohn's. The x-rays showed fistulas and narrowing of the bowel in the ileum where the small and large bowel connect. The only test left to get done was a colonoscopy with biopsy, but the surgeon wanted to give my body time to heal from the abscess with antibiotics. So, they sent me home.
After switching insurance plans and enduring HMO confusion and referrals, I finally saw a GI doctor Feb. 4th. He put me on 9mg Entocort to decrease extra inflammation he said he still felt in my lower right abdomen and would consult with the surgeon about when I should get a colonoscopy. That's basically where I stand as of now. I've yet to hear back from my GI doctor. He said I would only be on the steroid until the colonoscopy was done and then would hopefully never have to take them again.
OF course no treatment has been set in stone since it's all based on the results of the colonoscopy, but he mentioned a biologic treatment (Humira is the only one our insurance covers apparently) and azathioprine. Not sure if those are taken in conjunction with each other or what.
Anyway...that's my story. I am looking forward to learning more and getting to know more people on here. It's been really hard waiting on everything when all i want to do is feel "normal" again.
I didn't have your syptoms beyond the night sweats, but everyone seems to have different symptoms and respond differently to meds. Hopefully you'll get a difinitive answer soon and start feeling 'normal' again (normal? what the heck is normal?? lol)
