Hi,
I new to the forum and just wanted to share my short Crohn's experience and get some feedback as I'm feeling pretty confused.
Short history, I'm 31 years old with two kids. I've been pretty healthy my whole life, save a few strange things. I was diagnosed with skin cancer at 21 and have had 8 BCC skin cancers removed since. My dermatologist has always told me she thinks there is something strange going on and has never heard of a 21 year old with non melanoma skin cancer. I also have had joint pain in my hands and feet since 25 but chalked it up to being a life-long runner and college soccer player. I've had 4 or 5 episodes of episcleritis and my opthamologist always suspected that I had an AI disease of some sort.
With both children I went into the hospital with cramping abdominal pain that was unrelated to my pregnancies and were not labor pains. Both lasted about 24 hours and put me into preterm labor, the contractions were thankfully stopped with medicine and I delivered both kids full term, but the underlying pain was never understood. I had one experience between my two pregnancies of abdominal pain, suspected maybe a bladder infection or ectopic pregnancy, saw my OB-GYN who said everything looked fine and the pain resolved again.
In February of this year I again got the cramping, abdominal pain, dizziness and actually called my husband to come home from work as I thought something was really wrong. By the time he came home an hour or so later, I felt almost completely better, just really tired.
In March, the nausea and cramping abdominal pain came back horrifically and I went to the ER. The ER did a CT scan which revealed ileitis and colitis and sent me home with antibiotics and orders to see a GI. I saw the GI a few days later who accompanied me right back to the ER for another CT scan as he thought my appendix might be problematic due to the level of pain on palpation and he found that it was not visualized properly on the first scan. The second scan again revealed ileitis, but the colitis was resolved. The GI diagnosed me with Crohn's at that point, prescribed Pentasa and asked me to see him in the office a few days later. I was shocked as I rarely have diarrhea, maybe once a month, and thought CD was almost always accompanied by diarrhea. At the appointment he told me he was 99% sure I had CD but said he wanted to see the ileum on colonoscopy.
The colonoscopy was 3 weeks later and was completely normal. The GI said he couldn't believe that the CD could resolve that quickly. Since I was feeling much better than 3 weeks prior, he said there was no need to go further with testing at the time, and to return if I started feeling sick again.
Since all that, I went off the pentasa, and I've had a few hours of cramping pains here and there but nothing like I had in February and mostly March. I have had bouts of nausea on and off but nothing severe enough for me to return to the GI. I also have a real lack of appetite despite chasing two crazy toddlers all day.
I'm obviously really happy to be feeling better lately, and to have been told that I might not have CD, but I feel a bit like a ticking time bomb waiting for "something" to come back. It was nearly impossible to take care of my two kids when I felt so sick and am worried whatever is wrong with me is going to rear its ugly head again!
Thanks for any input!
I new to the forum and just wanted to share my short Crohn's experience and get some feedback as I'm feeling pretty confused.
Short history, I'm 31 years old with two kids. I've been pretty healthy my whole life, save a few strange things. I was diagnosed with skin cancer at 21 and have had 8 BCC skin cancers removed since. My dermatologist has always told me she thinks there is something strange going on and has never heard of a 21 year old with non melanoma skin cancer. I also have had joint pain in my hands and feet since 25 but chalked it up to being a life-long runner and college soccer player. I've had 4 or 5 episodes of episcleritis and my opthamologist always suspected that I had an AI disease of some sort.
With both children I went into the hospital with cramping abdominal pain that was unrelated to my pregnancies and were not labor pains. Both lasted about 24 hours and put me into preterm labor, the contractions were thankfully stopped with medicine and I delivered both kids full term, but the underlying pain was never understood. I had one experience between my two pregnancies of abdominal pain, suspected maybe a bladder infection or ectopic pregnancy, saw my OB-GYN who said everything looked fine and the pain resolved again.
In February of this year I again got the cramping, abdominal pain, dizziness and actually called my husband to come home from work as I thought something was really wrong. By the time he came home an hour or so later, I felt almost completely better, just really tired.
In March, the nausea and cramping abdominal pain came back horrifically and I went to the ER. The ER did a CT scan which revealed ileitis and colitis and sent me home with antibiotics and orders to see a GI. I saw the GI a few days later who accompanied me right back to the ER for another CT scan as he thought my appendix might be problematic due to the level of pain on palpation and he found that it was not visualized properly on the first scan. The second scan again revealed ileitis, but the colitis was resolved. The GI diagnosed me with Crohn's at that point, prescribed Pentasa and asked me to see him in the office a few days later. I was shocked as I rarely have diarrhea, maybe once a month, and thought CD was almost always accompanied by diarrhea. At the appointment he told me he was 99% sure I had CD but said he wanted to see the ileum on colonoscopy.
The colonoscopy was 3 weeks later and was completely normal. The GI said he couldn't believe that the CD could resolve that quickly. Since I was feeling much better than 3 weeks prior, he said there was no need to go further with testing at the time, and to return if I started feeling sick again.
Since all that, I went off the pentasa, and I've had a few hours of cramping pains here and there but nothing like I had in February and mostly March. I have had bouts of nausea on and off but nothing severe enough for me to return to the GI. I also have a real lack of appetite despite chasing two crazy toddlers all day.
I'm obviously really happy to be feeling better lately, and to have been told that I might not have CD, but I feel a bit like a ticking time bomb waiting for "something" to come back. It was nearly impossible to take care of my two kids when I felt so sick and am worried whatever is wrong with me is going to rear its ugly head again!
Thanks for any input!
It might not even be a bad idea to stay on Pentasa as a maintenance until you experience any worse symptoms. It's one of the mildest drugs to treat CD. If it seems to be working for you, then I'd definitely try to stay on it. It's basically an anti-inflammatory. 
