L
LostDreams
Guest
Hi all,
I just joined the CD forum today, and well, here's my CD story. I was first diagnosed in 1977 at age 23. Over the course of 2 years, I was medicated with azulfadine (sp?) and prednisone, and had a small bowel resection in 1979, 18 inches removed. Over the next 15 years, I had infrequent short-lived flairs and managed to live an enjoyable and productive life. However, in 1996, I had an accident at work. This combined with an extrememely rebellious teenage son seemed to cause a major CD flair. I've been in the hospital numerous times since then, on iv steroids and repeated dilation procedures to the area that continually becomes obstructed with scar tissue. And unlike most that I know with CD, I'm overweight. In January of 2005, I found a doctor that would do lap-band surgery on me...similar to gastric bypass surgery but reversible. I was doing great, losing weight and feeling much, much better. But that all ended early autumn of 2005. My lap-band had eroded, needed to come out, and could not be replaced. I went through a severe depression, found my way out of the black hole, and was again trying to make the best of life. By the way, I've been on mercaptopur 100mg for the past 10 years, with antibiotics like cipro and fladyl occassionally, as well as prednisone. I also had hip replacement surgery in 2002. Okay, anyway, I could feel that I was progressively becoming more and more obstructed, and early June 2006, my gastro doc dilated the obstructed area again. It gave me some relief, but within days of the procedure, I could feel that things were still not open as they should be. I went to the ER, on my doc's advice, in July of this year, and the ER doc did a cat scan. They found a new area of crohn's in the colon, and I was put on cipro and fladyl. This offered no relief, and my doc had another gastro doc attempt to once again dilate the obstructed area. He was successful at opening the area to 20mm and also put me on entocort. After about a week, I still wasn't feeling any relief, so my doc took me off the entocort, put me on 40mg of prednisone daily, and added more cipro and fladyl as well. After 4 days on the prednisone and progressively feeling worse, my doc put me on an additional 20mg of prednisone. I should also add that I've had all the typical, or typical as I know them, symptoms, like severe diarrhea and cramping, but my worst symptoms at this point are severe nausea, is either there when I awake or comes to visit the moment I step out of bed. The nausea usually starts to subside by late afternoon or early evening, but by then I'm so exhausted from fighting it all day, I have no energy to do anything. I also have chronic lower back pain, moreso on the left than on the right. And the bloating is extreme...extremely crazy! I've tried not eating, eating only soft foods like yogurt and tomato soup, not eating dairy...none of it seems to make a difference with my symptoms. I live alone, am on ss disability, and don't have much support with finances or things that seem simple to most people, like paying bills, cleaning the house, laundry, and shopping. My son owes me money, and I've asked for repayment, but it has been his choice to just ignore me, at least at this point. My mother is nearly 91 and very wealthy and has willed her money to myself and my siblings, but is unwilling to help me with the essentials now. I do have 2 grown daughters as well, but they both have children and responsibilities. I'm way too emotional and find myself crying everyday, and the prednisone certainly hasn't helped in that department. I've seen several counselors, but none seemed to understand, and the time and energy it took just to make it to the appointments was way more than any return I got from the effort. I have another doc appointment on Tuesday, and I'm pushing for surgery. I need to take care of myself, and right now, I can't do that. Any advice or input any of you may have would be very much appreciated.
I just joined the CD forum today, and well, here's my CD story. I was first diagnosed in 1977 at age 23. Over the course of 2 years, I was medicated with azulfadine (sp?) and prednisone, and had a small bowel resection in 1979, 18 inches removed. Over the next 15 years, I had infrequent short-lived flairs and managed to live an enjoyable and productive life. However, in 1996, I had an accident at work. This combined with an extrememely rebellious teenage son seemed to cause a major CD flair. I've been in the hospital numerous times since then, on iv steroids and repeated dilation procedures to the area that continually becomes obstructed with scar tissue. And unlike most that I know with CD, I'm overweight. In January of 2005, I found a doctor that would do lap-band surgery on me...similar to gastric bypass surgery but reversible. I was doing great, losing weight and feeling much, much better. But that all ended early autumn of 2005. My lap-band had eroded, needed to come out, and could not be replaced. I went through a severe depression, found my way out of the black hole, and was again trying to make the best of life. By the way, I've been on mercaptopur 100mg for the past 10 years, with antibiotics like cipro and fladyl occassionally, as well as prednisone. I also had hip replacement surgery in 2002. Okay, anyway, I could feel that I was progressively becoming more and more obstructed, and early June 2006, my gastro doc dilated the obstructed area again. It gave me some relief, but within days of the procedure, I could feel that things were still not open as they should be. I went to the ER, on my doc's advice, in July of this year, and the ER doc did a cat scan. They found a new area of crohn's in the colon, and I was put on cipro and fladyl. This offered no relief, and my doc had another gastro doc attempt to once again dilate the obstructed area. He was successful at opening the area to 20mm and also put me on entocort. After about a week, I still wasn't feeling any relief, so my doc took me off the entocort, put me on 40mg of prednisone daily, and added more cipro and fladyl as well. After 4 days on the prednisone and progressively feeling worse, my doc put me on an additional 20mg of prednisone. I should also add that I've had all the typical, or typical as I know them, symptoms, like severe diarrhea and cramping, but my worst symptoms at this point are severe nausea, is either there when I awake or comes to visit the moment I step out of bed. The nausea usually starts to subside by late afternoon or early evening, but by then I'm so exhausted from fighting it all day, I have no energy to do anything. I also have chronic lower back pain, moreso on the left than on the right. And the bloating is extreme...extremely crazy! I've tried not eating, eating only soft foods like yogurt and tomato soup, not eating dairy...none of it seems to make a difference with my symptoms. I live alone, am on ss disability, and don't have much support with finances or things that seem simple to most people, like paying bills, cleaning the house, laundry, and shopping. My son owes me money, and I've asked for repayment, but it has been his choice to just ignore me, at least at this point. My mother is nearly 91 and very wealthy and has willed her money to myself and my siblings, but is unwilling to help me with the essentials now. I do have 2 grown daughters as well, but they both have children and responsibilities. I'm way too emotional and find myself crying everyday, and the prednisone certainly hasn't helped in that department. I've seen several counselors, but none seemed to understand, and the time and energy it took just to make it to the appointments was way more than any return I got from the effort. I have another doc appointment on Tuesday, and I'm pushing for surgery. I need to take care of myself, and right now, I can't do that. Any advice or input any of you may have would be very much appreciated.
and were all here for a listen. before you know it the 2 weeks will be past, and you will be on the road to your new better self. in the mean time, take care, and let us know how its going.