Hi everyone, this is my first time ever posting anything on a crohn's site forum. This is my story. I am a 35 year old female, I started having problems with my stomach in 1994, I ended up in the hospital, having an emergency appendectomy. I saw a bunch of doctors who had no idea what was wrong, they kept saying it was gastritis. Well, the non-stop vomiting and excruciating pain continued. I must of spent 6 years in and out of the hospital for the diarrhea and weight loss. I had one blood transfusion. Then I saw a doctor who was recommended by the Crohn's & Colitis Foundation of America, he performed a colonoscopy and he said it was crohn's. He then ordered somekind of ultrasound in 2000, apparently what showed was somekind of abnormality in my large intestine which was extended like a balloon, i needed surgery asap.
I had the surgery in December 2000, a hemi-colectomy was performed. They took a biopsy and the results came out negative for crohns. They took the biopsy to the Cleveland Institute and they till this day have no idea what it is so their diagnosis was "clearly a phenomena in this patient". I was like really? So after the surgery I was fine for a year. After a year, the diarrhea came back. My gastro indicated that the crohn's must of jumped to a healthy portion of intestine. Joy! Ive done the remicade and I stopped it because I was scared of all the side effects. So my doctor didn't know what else to do and he recommended that I see a doctor in NYC, which I did. $750 an hour later (she didn't take health insurance), she recommended Humira (which caused me neurological problems), so they discontinued it. Ive been on every medication you can imagine. You name it, Ive been on it. The prednisone that I was on for so many years caused osteopenia. Now i have excruciating pains in my back and bones. I haven't been on methotraxate because my doctor asked me if I wanted children in the future and I said yes. So that wasnt an option.
In 2004, my gall bladder had to get removed. In 2009, my symptoms subsided. I actually felt normal for once in my life. Here I am in 2011 and Im worse than ever. I went from 145 pounds to 115 pounds since June 2011. My previous doctor doesn't participate with my insurance anymore so I had to find another one, well this new guy said my case is so difficult because none of the medications worked for me, again he recommended that I see a doctor in NYC. I live in NJ and NYC is like 15 minutes away so that's not a problem. The only problem is that most doctors in NYC do not take health insurance and Im not rich to be forking over $350 to $750 for a 15 min visit. In the meantime, he has me on Asacol HD, Entocort and tramadol for the pain (which doesn't do anything) and Xanax. I had my colonoscopy last thursday, he said my colon is covered with ulcers and he couldn't put the scope all the way up the intestines due to the possibility of perforating the intestine. He said my crohns is so severe. I lost it. He is recommending that I try the Remicade again. Im gonna do it. I have no other choice. Im so depressed right now, all I want is to be normal. I want to be able to take my 15 year old daughter places, go on vacations with my husband and enjoy my time with my family without having to worry about where the bathrooms are at all times.
Im a legal assistant and Im in the bathroom most of the day. Ive been working with the same attorney for 10 years. So today I called a doctor in NYC who specializes in crohns and ulcerative colitis, thank God, she takes my insurance and my appointment is scheduled for October 19. Im actually glad that I found this forum, because till today, I felt alone. Now I know that there are people who know what Im going through. Thanks for hearing out. I had to vent.
I had the surgery in December 2000, a hemi-colectomy was performed. They took a biopsy and the results came out negative for crohns. They took the biopsy to the Cleveland Institute and they till this day have no idea what it is so their diagnosis was "clearly a phenomena in this patient". I was like really? So after the surgery I was fine for a year. After a year, the diarrhea came back. My gastro indicated that the crohn's must of jumped to a healthy portion of intestine. Joy! Ive done the remicade and I stopped it because I was scared of all the side effects. So my doctor didn't know what else to do and he recommended that I see a doctor in NYC, which I did. $750 an hour later (she didn't take health insurance), she recommended Humira (which caused me neurological problems), so they discontinued it. Ive been on every medication you can imagine. You name it, Ive been on it. The prednisone that I was on for so many years caused osteopenia. Now i have excruciating pains in my back and bones. I haven't been on methotraxate because my doctor asked me if I wanted children in the future and I said yes. So that wasnt an option.
In 2004, my gall bladder had to get removed. In 2009, my symptoms subsided. I actually felt normal for once in my life. Here I am in 2011 and Im worse than ever. I went from 145 pounds to 115 pounds since June 2011. My previous doctor doesn't participate with my insurance anymore so I had to find another one, well this new guy said my case is so difficult because none of the medications worked for me, again he recommended that I see a doctor in NYC. I live in NJ and NYC is like 15 minutes away so that's not a problem. The only problem is that most doctors in NYC do not take health insurance and Im not rich to be forking over $350 to $750 for a 15 min visit. In the meantime, he has me on Asacol HD, Entocort and tramadol for the pain (which doesn't do anything) and Xanax. I had my colonoscopy last thursday, he said my colon is covered with ulcers and he couldn't put the scope all the way up the intestines due to the possibility of perforating the intestine. He said my crohns is so severe. I lost it. He is recommending that I try the Remicade again. Im gonna do it. I have no other choice. Im so depressed right now, all I want is to be normal. I want to be able to take my 15 year old daughter places, go on vacations with my husband and enjoy my time with my family without having to worry about where the bathrooms are at all times.
Im a legal assistant and Im in the bathroom most of the day. Ive been working with the same attorney for 10 years. So today I called a doctor in NYC who specializes in crohns and ulcerative colitis, thank God, she takes my insurance and my appointment is scheduled for October 19. Im actually glad that I found this forum, because till today, I felt alone. Now I know that there are people who know what Im going through. Thanks for hearing out. I had to vent.
I'm so sorry you're going through so much, it's certainly understandable that you feel depressed.