B
Bethany
Guest
Hi everybody,
I'm feeling pretty alone right now and I'm looking to find out if ANYBODY else has the same diagnosis as I do...my doctor says that I have Chron's disease located in my stomach, and possibly spreading to my esophagus. I was actually diagnosed about 4 years ago, but I've been suffering from variable symptoms since I was a teenager (at least 14 years ago now...maybe even longer). 4 years ago when the symptoms (heartburn/reflux, frequent vomiting (2-3 times per week), horrifying belching, diarrhea, and stomach pain) got so bad, I finally went to a gastroenterologist and had the full work up with a diagnosis. The intestines were completely clear, as was my esophagus, at the time. I was told that Chron's mostly affecting the stomach was rare (<5% of Chron's patients), but it was less severe, if managed well, than colon related Chrons. He gave me some meds (Entacort) and I immediately was kicked into remission. Then...I didn't follow up with my doctor because I moved and was symptom free for 3 years (I ignored it basically and pretended that it didn't exist). I got pregnant and felt better than ever...no morning sickness, heartburn or anything. After my baby was born, I continued to feel great up until he was about 15 months old (a year ago now). Once again, I entered into a flare-up, worse than ever. I was put on prednisone, it helped. I stopped, it flared, I took it again, stopped, flared again, and then took yet another course. I went through another gastroscopy to find that I now have ulcers in my esophagus, as well as tons of ulceration in my stomach, but still nothing intestine related. My doctor is strongly suggesting that I try some heavy duty immunosuppressants (humira or methotrexate), although he says he's not so sure how this will work with my type of Chron's, since he's never tried it before...I've been avoiding this though, because I am desperate to have another baby and I know I can't take these while pregnant. I figured, I'd just go ahead, get pregnant, have the baby and in 9 months be able to start the meds...afterall, with baby #1, I got pregnant on the first shot, and the same with a pregnancy that I lost prior to having my son. So, I just found out today that once again...9 months later of timing my cycle, ovulation tests, vitamin supplementation...and continuing Chron's flare up...I'm not pregnant. I have no doubt that this is due to my Chron's, but I don't know what to do now. I just set up an appointment with a naturopath, which I am hoping will be my solution, at least for the short term. I'm feeling very down tonight, I think for the first time since my diagnosis (4 years ago). I can't stand trying and failing to feel better and then compounded with trying and failing to get pregnant. I work in healthcare and I am very into researching everything on the internet, but I'm very frustrated because I can find NOTHING on the internet about gastro-esophageal chron's. Nor have I ever met or talked to anybody who has it...is there anybody out there?
I'm feeling pretty alone right now and I'm looking to find out if ANYBODY else has the same diagnosis as I do...my doctor says that I have Chron's disease located in my stomach, and possibly spreading to my esophagus. I was actually diagnosed about 4 years ago, but I've been suffering from variable symptoms since I was a teenager (at least 14 years ago now...maybe even longer). 4 years ago when the symptoms (heartburn/reflux, frequent vomiting (2-3 times per week), horrifying belching, diarrhea, and stomach pain) got so bad, I finally went to a gastroenterologist and had the full work up with a diagnosis. The intestines were completely clear, as was my esophagus, at the time. I was told that Chron's mostly affecting the stomach was rare (<5% of Chron's patients), but it was less severe, if managed well, than colon related Chrons. He gave me some meds (Entacort) and I immediately was kicked into remission. Then...I didn't follow up with my doctor because I moved and was symptom free for 3 years (I ignored it basically and pretended that it didn't exist). I got pregnant and felt better than ever...no morning sickness, heartburn or anything. After my baby was born, I continued to feel great up until he was about 15 months old (a year ago now). Once again, I entered into a flare-up, worse than ever. I was put on prednisone, it helped. I stopped, it flared, I took it again, stopped, flared again, and then took yet another course. I went through another gastroscopy to find that I now have ulcers in my esophagus, as well as tons of ulceration in my stomach, but still nothing intestine related. My doctor is strongly suggesting that I try some heavy duty immunosuppressants (humira or methotrexate), although he says he's not so sure how this will work with my type of Chron's, since he's never tried it before...I've been avoiding this though, because I am desperate to have another baby and I know I can't take these while pregnant. I figured, I'd just go ahead, get pregnant, have the baby and in 9 months be able to start the meds...afterall, with baby #1, I got pregnant on the first shot, and the same with a pregnancy that I lost prior to having my son. So, I just found out today that once again...9 months later of timing my cycle, ovulation tests, vitamin supplementation...and continuing Chron's flare up...I'm not pregnant. I have no doubt that this is due to my Chron's, but I don't know what to do now. I just set up an appointment with a naturopath, which I am hoping will be my solution, at least for the short term. I'm feeling very down tonight, I think for the first time since my diagnosis (4 years ago). I can't stand trying and failing to feel better and then compounded with trying and failing to get pregnant. I work in healthcare and I am very into researching everything on the internet, but I'm very frustrated because I can find NOTHING on the internet about gastro-esophageal chron's. Nor have I ever met or talked to anybody who has it...is there anybody out there?
