Hi everyone! I just recently discovered this forum, and it's pretty awesome 
Can't believe it's taken me this long to find it. Now that I have found it, I'll share my story.
I was diagnosed in 2004, and it definitely took me by surprise. I had been having horrible hemorrhoids for awhile(completely not fun for a 20 year old to deal with, not that they are fun at any age). My regular doctor gave me the usual kind of stuff, PrepH and the like. None of it worked, and eventually things got so bad I couldn't walk, I was bleeding like crazy all the time, and in general VERY uncomfortable. Ended up going in for surgery to have them removed. They said my recovery would be a few days, then back to normal. Two weeks later I was in terrible shape, I could hardly stand up straight, going to the bathroom was a nightmare. (Now that I know it's Crohn's I can see how that went so badly) They took me back in for a follow up surgery and some cortisone shots into the area. That helped a little, but I still wasn't doing well. Luckily the surgeon was very experienced and must have recognized it as Crohn's just from all of that, because he referred me to a GI with a note that said he suspected Crohn's. Of course I looked it up and thought he must be wrong. I didn't have any diarrhea or severe pain, the main symptoms of Crohn's. But after a few blood tests, a colonoscopy, a UGI, and a second opinion, it was a official, no denying it, I had Crohn's.
I started out with Pentasa and Entocort. Then as my symptoms changed somewhat (fatigue, heartburn, stomach pain, and the inflamation everywhere) I was put on other meds. I was on Remicade, which didn't seem to do much for me except suck my wallet dry. Then I was on 6MP, which nearly killed me. Then I was put on Humira in 2007. That seemed to do the trick. Started to feel a bit better. Then I got pregnant later that year. All went well, baby daughter born April of 2008. After that it seemed like everything was great, had my first mostly normal colonoscopy ever, and the doc decided to take me off Humira to see how I'd do. I thought that was a great idea, cause I hate shotting up every two weeks, but it turned out to be a horrible decision....
October 2009 I found myself in the hospital. I had been complaining to my GI about an infection/cyst/absess for months, but he just kept giving me flagyl and saying it would go away. I lost about 15 pounds and then had really bad back problems. It all got too much, hence the hospital. They did an MRI, and were about to do a CAT scan when they asked if I could be pregnant, I said I didn't think so, but I guess it was possible. Turned out I was pregnant and also sporting a fistula...fun. So they did an epidural style anesthesia, and did the surgery for the fistula. The rest of the pregnancy went well, and my second girl was born in june 2010.
So now I'm on Pentasa and Humira 'forever'. And we are trying Cellcept now too, since things still aren't under control.
In addition to my own health issues, my older daughter was diagnosed with SMA (spinal muscular atrophy) which is a genetic neuromuscular disease that causes her muscles to shrink over time. We are so lucky that she has one of the less severe forms of the disease, she has type 3. Which means that she can walk, but she can't run, she can't do stairs, she has trouble standing up from the floor. Just last December she got her first power wheelchair. It's heartbreaking.
I know it sounds kind of like a pity party when it's all laid out there like that. But we're all pretty happy. And I just try to remember all that time that even though my family drew the medical short straw, at least it's not the shortest straw we could have pulled.
(sorry that was so long, thanks for reading to the end
Can't believe it's taken me this long to find it. Now that I have found it, I'll share my story.I was diagnosed in 2004, and it definitely took me by surprise. I had been having horrible hemorrhoids for awhile(completely not fun for a 20 year old to deal with, not that they are fun at any age). My regular doctor gave me the usual kind of stuff, PrepH and the like. None of it worked, and eventually things got so bad I couldn't walk, I was bleeding like crazy all the time, and in general VERY uncomfortable. Ended up going in for surgery to have them removed. They said my recovery would be a few days, then back to normal. Two weeks later I was in terrible shape, I could hardly stand up straight, going to the bathroom was a nightmare. (Now that I know it's Crohn's I can see how that went so badly) They took me back in for a follow up surgery and some cortisone shots into the area. That helped a little, but I still wasn't doing well. Luckily the surgeon was very experienced and must have recognized it as Crohn's just from all of that, because he referred me to a GI with a note that said he suspected Crohn's. Of course I looked it up and thought he must be wrong. I didn't have any diarrhea or severe pain, the main symptoms of Crohn's. But after a few blood tests, a colonoscopy, a UGI, and a second opinion, it was a official, no denying it, I had Crohn's.
I started out with Pentasa and Entocort. Then as my symptoms changed somewhat (fatigue, heartburn, stomach pain, and the inflamation everywhere) I was put on other meds. I was on Remicade, which didn't seem to do much for me except suck my wallet dry. Then I was on 6MP, which nearly killed me. Then I was put on Humira in 2007. That seemed to do the trick. Started to feel a bit better. Then I got pregnant later that year. All went well, baby daughter born April of 2008. After that it seemed like everything was great, had my first mostly normal colonoscopy ever, and the doc decided to take me off Humira to see how I'd do. I thought that was a great idea, cause I hate shotting up every two weeks, but it turned out to be a horrible decision....
October 2009 I found myself in the hospital. I had been complaining to my GI about an infection/cyst/absess for months, but he just kept giving me flagyl and saying it would go away. I lost about 15 pounds and then had really bad back problems. It all got too much, hence the hospital. They did an MRI, and were about to do a CAT scan when they asked if I could be pregnant, I said I didn't think so, but I guess it was possible. Turned out I was pregnant and also sporting a fistula...fun. So they did an epidural style anesthesia, and did the surgery for the fistula. The rest of the pregnancy went well, and my second girl was born in june 2010.
So now I'm on Pentasa and Humira 'forever'. And we are trying Cellcept now too, since things still aren't under control.
In addition to my own health issues, my older daughter was diagnosed with SMA (spinal muscular atrophy) which is a genetic neuromuscular disease that causes her muscles to shrink over time. We are so lucky that she has one of the less severe forms of the disease, she has type 3. Which means that she can walk, but she can't run, she can't do stairs, she has trouble standing up from the floor. Just last December she got her first power wheelchair. It's heartbreaking.
I know it sounds kind of like a pity party when it's all laid out there like that. But we're all pretty happy. And I just try to remember all that time that even though my family drew the medical short straw, at least it's not the shortest straw we could have pulled.
(sorry that was so long, thanks for reading to the end
