Hi all,
My Crohn's story is that of a never ending roller coaster ride. I'm sure most of you can relate. I was first diagnosed with borderline Crohn's about 7 years ago. At the time, my symptoms were mild...weight loss of about 10 lbs, stomach cramps, fatigue, anemia and malabsorption. My flare -ups would last about 2-3 days. When first diagnosed, I was taking Pentasa and prednisone. Over time, despite carefully monitoring my diet, stress levels (stress is a huge trigger for me) and changing my lifestyle (was a type A personality, perfectionist and workaholic), my condition worsened. However, my treatment remained the same and I continued to work in a highly stressful corporate environment (my Dr. had not suggested that I stop working). By 2009, my weight had plummeted to 72lbs (I was 40 and 5 ft. Tall), I struggled to make it through each day, had a bowel movement at least every hour on the hour and was afraid to eat anything for fear of getting a flare up. Once carefree, outgoing and independent, I had deteriorated rapidly. I was in constant pain,always cold, extremely weak and malnourished. As can be expected, all my friends and family were extremely worried. My only saving grace at this time was that my husband had a relocation opportunity with his employer. We ended up moving from Toronto to Texas. I welcomed the change because I thought the warmer weather and slower paced lifestyle would be positive factors in improving my overall health. My new gastroenterologist in Texas was a god send. In reviewing my medical records and present state, he concluded that I had the worst case of Crohn's he had ever seen. He put me on a rather aggressive treatment regimen - 40 mg Predisone, Remicade infusions every 5-7 weeks, B12 , Lialda and he also told me I had to stop working. His approach worked....I gained about 15 lbs, my energy levels increased and my pain was reduced. I was in remission for about 7 months before I had a flare up. The worst part of a flare up is that I would relapse and all the improvements I had made would reverse themselves. My weight tended to drop by about 15 lbs in less than 2 weeks. This trend continued until last August when I had my worst flare up . My weight dropped to 72 lbs and my overall blood health was seriously out of whack and my HB was critical(level 7) To make matters worse, I had an anaphalactic reaction to the Remicade. For the first time since being diagnosed, I was scared that I no longer had the ability to fight this disease, however, i tried to maintain a positive outlook. My Dr.wanted to remove a part of my colon as he thought this would minimize the intensity and frequency of my flare ups. However, I was too weak to withstand surgery. In an effort to build up my strength I have been having 3 iron infusions a week since Sept.2011. I am also on Predisone , humaira and Pentasa. The new treatment regimen seems to be working and I have been in remission for almost 3 months. I am hoping this new phase will last. It has been a constant physical and mental struggle for me. For me, the worst part has been that so many people were worried about me. I am thankful for all their prayers and support ....I wouldn't have made it through my worst days without them. They have taught me that it is ok to ask for help. I am also grateful to my Gastroenteroligost. Although I have had many setbacks,I know he is doing everything possible to help me fight. Crohn's can be difficult to treat because it is highly unpredictable (a whole host of factors can trigger a flare-up) and it is rare that 2 people will have the same symptoms,food aversions etc. I hope my story gives everyone hope that with the right treatment,support system and positive frame of mind, this disease can be fought.
My Crohn's story is that of a never ending roller coaster ride. I'm sure most of you can relate. I was first diagnosed with borderline Crohn's about 7 years ago. At the time, my symptoms were mild...weight loss of about 10 lbs, stomach cramps, fatigue, anemia and malabsorption. My flare -ups would last about 2-3 days. When first diagnosed, I was taking Pentasa and prednisone. Over time, despite carefully monitoring my diet, stress levels (stress is a huge trigger for me) and changing my lifestyle (was a type A personality, perfectionist and workaholic), my condition worsened. However, my treatment remained the same and I continued to work in a highly stressful corporate environment (my Dr. had not suggested that I stop working). By 2009, my weight had plummeted to 72lbs (I was 40 and 5 ft. Tall), I struggled to make it through each day, had a bowel movement at least every hour on the hour and was afraid to eat anything for fear of getting a flare up. Once carefree, outgoing and independent, I had deteriorated rapidly. I was in constant pain,always cold, extremely weak and malnourished. As can be expected, all my friends and family were extremely worried. My only saving grace at this time was that my husband had a relocation opportunity with his employer. We ended up moving from Toronto to Texas. I welcomed the change because I thought the warmer weather and slower paced lifestyle would be positive factors in improving my overall health. My new gastroenterologist in Texas was a god send. In reviewing my medical records and present state, he concluded that I had the worst case of Crohn's he had ever seen. He put me on a rather aggressive treatment regimen - 40 mg Predisone, Remicade infusions every 5-7 weeks, B12 , Lialda and he also told me I had to stop working. His approach worked....I gained about 15 lbs, my energy levels increased and my pain was reduced. I was in remission for about 7 months before I had a flare up. The worst part of a flare up is that I would relapse and all the improvements I had made would reverse themselves. My weight tended to drop by about 15 lbs in less than 2 weeks. This trend continued until last August when I had my worst flare up . My weight dropped to 72 lbs and my overall blood health was seriously out of whack and my HB was critical(level 7) To make matters worse, I had an anaphalactic reaction to the Remicade. For the first time since being diagnosed, I was scared that I no longer had the ability to fight this disease, however, i tried to maintain a positive outlook. My Dr.wanted to remove a part of my colon as he thought this would minimize the intensity and frequency of my flare ups. However, I was too weak to withstand surgery. In an effort to build up my strength I have been having 3 iron infusions a week since Sept.2011. I am also on Predisone , humaira and Pentasa. The new treatment regimen seems to be working and I have been in remission for almost 3 months. I am hoping this new phase will last. It has been a constant physical and mental struggle for me. For me, the worst part has been that so many people were worried about me. I am thankful for all their prayers and support ....I wouldn't have made it through my worst days without them. They have taught me that it is ok to ask for help. I am also grateful to my Gastroenteroligost. Although I have had many setbacks,I know he is doing everything possible to help me fight. Crohn's can be difficult to treat because it is highly unpredictable (a whole host of factors can trigger a flare-up) and it is rare that 2 people will have the same symptoms,food aversions etc. I hope my story gives everyone hope that with the right treatment,support system and positive frame of mind, this disease can be fought.
I hope you find the forum and helpful and supportive as I have, it will be good to see you around.
