I have been reading so many of the stories on this forum and am thankful to those of you who have shared. I apologize for the long post, but I feel very alone and I’m hoping that sharing my story will be cathartic in some way or be helpful in some way to someone else who is dealing with Crohn’s.
I am in my early 30’s and have been considerably overweight most of my life, but otherwise I’ve always been generally healthy. My Crohn’s journey started about 18 months ago and it feels like it’s been a quite rapid downhill journey that has impacted every aspect of my life.
My diagnosis process was frustrating. Being relatively young, I sometimes feel like it is difficult to get “real” attention from a doctor. In mid-2010 I started having pretty strong stomach pains. I spent the fall of 2010 going to my family doctor where I learned that I was anemic a somewhat malnourished despite being ‘well-fed’, but was told that the stomach pain was probably just a case of irritable bowel and that there was really nothing I could do about it. As the months went by, the pain got worse and by the beginning of 2011 I was unable to keep down anything I ate aside from some crackers and chicken broth. Convinced that something bigger might be going on, I finally made an appointment with a gastroenterologist – a friend of the family who I was very grateful was willing to see me on short notice. On a personal level, by this time I had become a complete drag from a social perspective. I found it very difficult to motivate myself to go out and have fun and this was taking a toll on my relationship with my partner of 14 years.
Within a few weeks of going to the GI I was having all sorts of tests and was given the news – a classic case of Crohn’s with an area of stricture affecting the terminal ileum. While I was happy to have a diagnosis, the more I learned about Crohn’s, the more I longed for the mysterious yet innocuous irritable bowel diagnosis! Over the next several months, I was put on prednisone and flagyl. I tried Imuran and had horribly high fevers as a side effect. It’s probably worth mentioning that during this time I was in my first six months at a new, higher stress job.
After the failure with Imuran, we tried Humira. I was concerned about the drug’s side effects, but willing to try anything to avoid the possibility of surgery. By this point I was tired all the time. The pain in my stomach had become so bad that I sometimes couldn’t walk or speak. I traveled frequently for my work and often worried that I would find myself in an emergency room hundreds of miles from home. I did my best to hide the pain as I tried to be successful in my new professional role – sometimes taking heavy pain killers just to get through the day.
I only lasted about 8 weeks on the Humira. I felt like it was helping somewhat; however, I had a consistent low-grade fever and horrible night sweats. Around this time, my partner of 14 years left me unexpectedly. I was sick and heartbroken and this seemed to be the straw that broke the camel’s back. My pain kept getting worse until finally my GI strongly recommended that I proceed with resection surgery to remove the diseased portion of my small intestine.
In October of 2011 I had nearly 30cm (~12 inches) of small intestine and a portion of my right colon removed via a laparoscopic procedure. My surgeon, who specializes in Crohn’s procedures, said it was by far the worst inflammation he had ever seen. Because I had been on prednisone for nearly nine months, I was given a temporary ileostomy to allow the intestinal tissue to strengthen before completing the resection. My experience with the stoma has been difficult, emotionally and practically. I have been unable to travel or even do much physical activity at all. Between this limitation and my depression in dealing with the disintegration of my long term relationship, I have consistently gained weight since my surgery (against my surgeon’s recommendation that I lose ~80 lbs before undergoing another surgery to complete the resection – instead I’ve probably gained about 25 lbs). Given this difficulty, my surgeon decided that it would be better for my quality of life to complete the resection as soon as possible and I will be having my second surgery next week. While I am excited to move forward with the reversal, I am concerned that my weight will put me at greater risk during the procedure.
I feel like this disease has cost me so much in the past year. I have no family, nor a close support system and I find it very difficult to ask others for help or be a burden to those in my life. I always thought my partner would be there to support me in a situation like this, but now I find myself completely on my own for the first time in my life. While I try to remain hopeful, I am afraid that my life will never be ‘normal’ again. My understanding is that now that I’ve had the resection, I am much more likely to need this surgery again (if not several times) throughout my life. I worry that I will not be able to have the career that I want, that I will struggle to support myself and that I will be alone forever. I know that stress is bad for Crohn’s, but my life is nothing but stress right now.
I feel like this all has happened so fast. It has been overwhelming. I can’t predict the future, but for the first time in my life it is something that is scary instead of exciting. The fact that there is no “cure” for this disease makes me feel helpless and facing it alone is my greatest fear :yfrown:
Like I said, I am here tonight to share my experience and hope that I can connect with others who understand the impact this disease has on "normal" life.
I am in my early 30’s and have been considerably overweight most of my life, but otherwise I’ve always been generally healthy. My Crohn’s journey started about 18 months ago and it feels like it’s been a quite rapid downhill journey that has impacted every aspect of my life.
My diagnosis process was frustrating. Being relatively young, I sometimes feel like it is difficult to get “real” attention from a doctor. In mid-2010 I started having pretty strong stomach pains. I spent the fall of 2010 going to my family doctor where I learned that I was anemic a somewhat malnourished despite being ‘well-fed’, but was told that the stomach pain was probably just a case of irritable bowel and that there was really nothing I could do about it. As the months went by, the pain got worse and by the beginning of 2011 I was unable to keep down anything I ate aside from some crackers and chicken broth. Convinced that something bigger might be going on, I finally made an appointment with a gastroenterologist – a friend of the family who I was very grateful was willing to see me on short notice. On a personal level, by this time I had become a complete drag from a social perspective. I found it very difficult to motivate myself to go out and have fun and this was taking a toll on my relationship with my partner of 14 years.
Within a few weeks of going to the GI I was having all sorts of tests and was given the news – a classic case of Crohn’s with an area of stricture affecting the terminal ileum. While I was happy to have a diagnosis, the more I learned about Crohn’s, the more I longed for the mysterious yet innocuous irritable bowel diagnosis! Over the next several months, I was put on prednisone and flagyl. I tried Imuran and had horribly high fevers as a side effect. It’s probably worth mentioning that during this time I was in my first six months at a new, higher stress job.
After the failure with Imuran, we tried Humira. I was concerned about the drug’s side effects, but willing to try anything to avoid the possibility of surgery. By this point I was tired all the time. The pain in my stomach had become so bad that I sometimes couldn’t walk or speak. I traveled frequently for my work and often worried that I would find myself in an emergency room hundreds of miles from home. I did my best to hide the pain as I tried to be successful in my new professional role – sometimes taking heavy pain killers just to get through the day.
I only lasted about 8 weeks on the Humira. I felt like it was helping somewhat; however, I had a consistent low-grade fever and horrible night sweats. Around this time, my partner of 14 years left me unexpectedly. I was sick and heartbroken and this seemed to be the straw that broke the camel’s back. My pain kept getting worse until finally my GI strongly recommended that I proceed with resection surgery to remove the diseased portion of my small intestine.
In October of 2011 I had nearly 30cm (~12 inches) of small intestine and a portion of my right colon removed via a laparoscopic procedure. My surgeon, who specializes in Crohn’s procedures, said it was by far the worst inflammation he had ever seen. Because I had been on prednisone for nearly nine months, I was given a temporary ileostomy to allow the intestinal tissue to strengthen before completing the resection. My experience with the stoma has been difficult, emotionally and practically. I have been unable to travel or even do much physical activity at all. Between this limitation and my depression in dealing with the disintegration of my long term relationship, I have consistently gained weight since my surgery (against my surgeon’s recommendation that I lose ~80 lbs before undergoing another surgery to complete the resection – instead I’ve probably gained about 25 lbs). Given this difficulty, my surgeon decided that it would be better for my quality of life to complete the resection as soon as possible and I will be having my second surgery next week. While I am excited to move forward with the reversal, I am concerned that my weight will put me at greater risk during the procedure.
I feel like this disease has cost me so much in the past year. I have no family, nor a close support system and I find it very difficult to ask others for help or be a burden to those in my life. I always thought my partner would be there to support me in a situation like this, but now I find myself completely on my own for the first time in my life. While I try to remain hopeful, I am afraid that my life will never be ‘normal’ again. My understanding is that now that I’ve had the resection, I am much more likely to need this surgery again (if not several times) throughout my life. I worry that I will not be able to have the career that I want, that I will struggle to support myself and that I will be alone forever. I know that stress is bad for Crohn’s, but my life is nothing but stress right now.
I feel like this all has happened so fast. It has been overwhelming. I can’t predict the future, but for the first time in my life it is something that is scary instead of exciting. The fact that there is no “cure” for this disease makes me feel helpless and facing it alone is my greatest fear :yfrown:
Like I said, I am here tonight to share my experience and hope that I can connect with others who understand the impact this disease has on "normal" life.