Hi All,
I wrote in to the forum for the first time several weeks ago when I was looking into LDN as a treatment option; I thought I'd write again now to fill you in on the intense whirlwind journey that has happened since then.
My most recent flare began around Thanksgiving, which is when I started making plans to seek out a doc to prescribe me LDN. Well... I have never had a flare progress so quickly before. By the second week of December we knew I had to be hospitalized--I was running constant fevers and couldn't keep any food down. I was in the hospital for 6 days, and the docs decided that I seemed to be responding to the IV steroids and bowel rest (they didn't give me TPN (IV nutrition), so I was basically starving for these days) and then sent me home.
I was suspicious of this, as I have NEVER responded fully to a simple treatment like IV steroids and bowel rest, but I went home anyway, and then proceeded to get much worse. When I spoke to my doctor a few days later (who had not actually been able to see me in the hospital), he was irate that I had been discharged and had me return immediately. My first day there I was given a catheter for TPN, and by the second day I was sick enough that my colon had to come out completely. Somehow I knew when I returned to the hospital that something drastic would happen, so I was mentally prepared for the colon to go. But still, it is certainly a sudden life change!
I had a fantastic surgeon, and the surgery went extremely well, and I have been healing right on track. It was a big incision, though, and pain control has been difficult. Overall, though, I'm very happy to have hope of health in the near future, and I think I can live with the ileostomy bag pretty happily. My rectum was preserved, so there is a good chance that I can be reconnected in the future. Right now I'm two weeks out of surgery and starting to feel a little bit better every day (though still very, very weak--and at a very low weight).
So that's my story--it's crazy how things turn out. I'd love to hear any advice from other people with ostomies, in case there are things you think I should know.
all best,
Emily
I wrote in to the forum for the first time several weeks ago when I was looking into LDN as a treatment option; I thought I'd write again now to fill you in on the intense whirlwind journey that has happened since then.
My most recent flare began around Thanksgiving, which is when I started making plans to seek out a doc to prescribe me LDN. Well... I have never had a flare progress so quickly before. By the second week of December we knew I had to be hospitalized--I was running constant fevers and couldn't keep any food down. I was in the hospital for 6 days, and the docs decided that I seemed to be responding to the IV steroids and bowel rest (they didn't give me TPN (IV nutrition), so I was basically starving for these days) and then sent me home.
I was suspicious of this, as I have NEVER responded fully to a simple treatment like IV steroids and bowel rest, but I went home anyway, and then proceeded to get much worse. When I spoke to my doctor a few days later (who had not actually been able to see me in the hospital), he was irate that I had been discharged and had me return immediately. My first day there I was given a catheter for TPN, and by the second day I was sick enough that my colon had to come out completely. Somehow I knew when I returned to the hospital that something drastic would happen, so I was mentally prepared for the colon to go. But still, it is certainly a sudden life change!
I had a fantastic surgeon, and the surgery went extremely well, and I have been healing right on track. It was a big incision, though, and pain control has been difficult. Overall, though, I'm very happy to have hope of health in the near future, and I think I can live with the ileostomy bag pretty happily. My rectum was preserved, so there is a good chance that I can be reconnected in the future. Right now I'm two weeks out of surgery and starting to feel a little bit better every day (though still very, very weak--and at a very low weight).
So that's my story--it's crazy how things turn out. I'd love to hear any advice from other people with ostomies, in case there are things you think I should know.
all best,
Emily