I'm a middle aged woman who was in pretty good shape until two years ago. I almost died of massive pulmonary embolisms, spent 5 days in ICU and had a blood transfusion a day. After three weeks of tests in hospital, I was told I have Crohn's. I didn't even know what that was. I was sent home with a long list of prescriptions. Three weeks later I was back in the hospital. I was in a full flare. I had all kinds of tests. They said the insides of my intestines were covered in abscesses, so I was not getting much nutrition. I had a horseshoe abscess around my rectum, that got so painful that I could not sit. I had fistulas that they said looked like a bowl of spaghetti, and that they could not operate on those. I was on warfarin, so they did not want to do surgery on the abscess. I was on iv antibiotics four times a day, prednisone, Flagyl, aminosalicylate, azathioprine, calcium, iron, vitamins C B12, D and zinc, codeine and morphine for the pain. After a month, the abscess burst and I had two holes the size of a quarter and two holes the size of the end of a pen around my rectum. All the while having diarrhea about a dozen times a day, vomiting, pain. They took me off warfarin long enough to have surgery to clean the abscess. I was told I could die of a blood clot, but that it needed to be done. After that, I could sit again.
I was sent to a long term care hospital, they would not let me go home until those holes healed up. Altogether I was in the hospital for five months, and then at home for four months, before I was well enough to go back to work. I was so thin by then that my ribs were showing. I got peripheral neuropathy from the Flagyl, so I was switched to Ciproflox. My gastroenterologist wants to put me on infliximab, but I'm too afraid to. Most of my fistulas are healed up now, but I now think I have a rectovaginal fistula. I'm trying not to panic about that yet. I have an MRI booked in April. I've stopped telling people what I have, because nobody seems to understand how horrible this disease can be. I've been told to just go to work in diapers, as if that would solve my problems. I have no stamina, and suffer from fatigue. It's so frustrating, because I've had to give up many of the things I used to do. I'm on a low fiber low fat diet. Is there anything I can do for this fatigue? Sorry this is so long.
I was sent to a long term care hospital, they would not let me go home until those holes healed up. Altogether I was in the hospital for five months, and then at home for four months, before I was well enough to go back to work. I was so thin by then that my ribs were showing. I got peripheral neuropathy from the Flagyl, so I was switched to Ciproflox. My gastroenterologist wants to put me on infliximab, but I'm too afraid to. Most of my fistulas are healed up now, but I now think I have a rectovaginal fistula. I'm trying not to panic about that yet. I have an MRI booked in April. I've stopped telling people what I have, because nobody seems to understand how horrible this disease can be. I've been told to just go to work in diapers, as if that would solve my problems. I have no stamina, and suffer from fatigue. It's so frustrating, because I've had to give up many of the things I used to do. I'm on a low fiber low fat diet. Is there anything I can do for this fatigue? Sorry this is so long.
