- Joined
- Dec 23, 2010
- Messages
- 3
Hello! My name is Paula and I was diagnosed with Crohn's Disease in December of 1996.
I was a senior in high school at the time and had been going to various drs for months trying to find out what was wrong with me. I was losing weight, had bleeding and could not eat because I would get severe pains and have to go to the bathroom before I could even get half way thru a meal. The drs kept saying I had an ulcer or acid reflux but nothing they gave me was helping and finally they decided to do a biopsy on my intestines because they suspected I was bleeding internally or maybe had cancer.
I remember the day I was diagnosed very well. My parents were going thru a seperation and were not speaking but when I woke up they were both looking at me in the hospital bed and the dr came in and told us all that I had Crohn's Disease. I think I asked what is that because I had never heard of it. I went on prednise on whatever other drugs my dr recommended and started putting weight back on and feeling better soon. The side effects of the steroids were so bad it was changing my personality. I was so quick to get angry,had major mood swings, insomnia and moonface. I went for an appt and told my dr that I would rather die than feel so out of control emotionally and that I was quitting the prednisone. He advised me to taper down slowly and I think put me on cipro or asacol instead by the time I was ready to go to college.
I had been accepted at Arizona State and wanted to go to school there but after the whole Crohn's diagnosis my mom begged me to stay closer to home. I went to Iowa State and managed to graduate after 3 1/2 years despite frequent flare ups.
Shortly after college I moved to Denver with my bf of 4 years. It was stressful finding jobs and we were not getting along very well. We broke up and I got my own place and was working fulltime and bartending-trying to pay school loans and bills. I started getting intense stabbing pains in my right side and they got worse and more frequent. My new GI dr was amazing and I was on Entocort but it was not helping. One day at work my abdomen swelled up and I felt like I was ran over by a truck because I hurt all over. I went home and took my temp and it was 102! I called my GI and he said to meet him at the ER right away. They gave me dilauded for the pain and I spent the next few days in and out of consciousnes on morphine and methotrexate. My fever was up to 105 nite and my sister had called my ex to see me at the hospital because she was 13 hours away. I woke up to him crying at my bedside because he thought I was going to die. My GI had contacted my family to come to Denver because I was so out of it and they did not know what to do with me. I was having an allergic reaction to the MTX and finally after what seemed like endless questioning my various staff they figured it out and stopped the MTX.
My GI dr decided to try Remicade on me. It had just been approved for CD and I was his first patient to get a treatment. It was a miracle for me and after almost 2 weeks I was well enough to leave the hospital. I was still anorexic looking and had to recoup for a few weeks before I could go back to work but quit bartending at the advice of my GI. I stayed on Remicade for a couple years and was in remission. I felt great besides having no immune system and constantly getting colds etc. I changed jobs and insurance so I went off Remicade and soon after a flare started again.
Last winter I started Immuran after the results of a colonoscopy showed a lot of inflammation in the terminal illium (always my problem spot) My symptoms were different this time-muscle spasms in the guts often and always after food. Immuran did not agree with me, i lost more weight, had nausea and was so fatigued I could not even make it thru a whole day at work sometimes. After a few months I felt worse and quit Immuran. I am currently on dicyclomine for the spasms and just had the barium and xrays last week. The terminal illium is again very inflammed and narrowed but they cannot tell from the xrays if it is inflammation or scarring so I am getting a colonoscopy in 2 weeks. Hopefully it will be inflammation and I can go back on Remicade(if I have not developed immunity) or else it will be time for surgery. I have a feeling that the area is narrowed due to scarring because that is where I have always had problems and after 14 years of CD I I will have to have that part removed. I always knew that this was something that would eventually happen but I am having a very hard time dealing with it lately. I hardly ever cry or feel depressed but lately I have just felt veryoverwhelmed and sad because CD is something that will never go away and gets worse instead of better. I know a lot of my feeling sad lately probably has to do with lack of nutrition from poor absorption due to the diease but it is hard because nobody really understand what I am going thru. I
I found this site last nite and when I started reading the posts I felt like someone knew exactally how I was feeling and I just wanted to reach out and hug everyone on here and tell them that I understand and you are not alone.
Wow I tried to make it a short story and I left a lot out but 14 years of CD is a lot of history for one page! I would like to talk to some people that have had a removal/resection. I have a lot of questions and am trying to prepare myself mentally for this procedure because I am pretty sure that is my next step. Thank you everyone for reading my story and sharing yours. Feel free to reply or message me
Hang in there and be strong and take it one day at a time. That is what I am doing right now
I was a senior in high school at the time and had been going to various drs for months trying to find out what was wrong with me. I was losing weight, had bleeding and could not eat because I would get severe pains and have to go to the bathroom before I could even get half way thru a meal. The drs kept saying I had an ulcer or acid reflux but nothing they gave me was helping and finally they decided to do a biopsy on my intestines because they suspected I was bleeding internally or maybe had cancer.
I remember the day I was diagnosed very well. My parents were going thru a seperation and were not speaking but when I woke up they were both looking at me in the hospital bed and the dr came in and told us all that I had Crohn's Disease. I think I asked what is that because I had never heard of it. I went on prednise on whatever other drugs my dr recommended and started putting weight back on and feeling better soon. The side effects of the steroids were so bad it was changing my personality. I was so quick to get angry,had major mood swings, insomnia and moonface. I went for an appt and told my dr that I would rather die than feel so out of control emotionally and that I was quitting the prednisone. He advised me to taper down slowly and I think put me on cipro or asacol instead by the time I was ready to go to college.
I had been accepted at Arizona State and wanted to go to school there but after the whole Crohn's diagnosis my mom begged me to stay closer to home. I went to Iowa State and managed to graduate after 3 1/2 years despite frequent flare ups.
Shortly after college I moved to Denver with my bf of 4 years. It was stressful finding jobs and we were not getting along very well. We broke up and I got my own place and was working fulltime and bartending-trying to pay school loans and bills. I started getting intense stabbing pains in my right side and they got worse and more frequent. My new GI dr was amazing and I was on Entocort but it was not helping. One day at work my abdomen swelled up and I felt like I was ran over by a truck because I hurt all over. I went home and took my temp and it was 102! I called my GI and he said to meet him at the ER right away. They gave me dilauded for the pain and I spent the next few days in and out of consciousnes on morphine and methotrexate. My fever was up to 105 nite and my sister had called my ex to see me at the hospital because she was 13 hours away. I woke up to him crying at my bedside because he thought I was going to die. My GI had contacted my family to come to Denver because I was so out of it and they did not know what to do with me. I was having an allergic reaction to the MTX and finally after what seemed like endless questioning my various staff they figured it out and stopped the MTX.
My GI dr decided to try Remicade on me. It had just been approved for CD and I was his first patient to get a treatment. It was a miracle for me and after almost 2 weeks I was well enough to leave the hospital. I was still anorexic looking and had to recoup for a few weeks before I could go back to work but quit bartending at the advice of my GI. I stayed on Remicade for a couple years and was in remission. I felt great besides having no immune system and constantly getting colds etc. I changed jobs and insurance so I went off Remicade and soon after a flare started again.
Last winter I started Immuran after the results of a colonoscopy showed a lot of inflammation in the terminal illium (always my problem spot) My symptoms were different this time-muscle spasms in the guts often and always after food. Immuran did not agree with me, i lost more weight, had nausea and was so fatigued I could not even make it thru a whole day at work sometimes. After a few months I felt worse and quit Immuran. I am currently on dicyclomine for the spasms and just had the barium and xrays last week. The terminal illium is again very inflammed and narrowed but they cannot tell from the xrays if it is inflammation or scarring so I am getting a colonoscopy in 2 weeks. Hopefully it will be inflammation and I can go back on Remicade(if I have not developed immunity) or else it will be time for surgery. I have a feeling that the area is narrowed due to scarring because that is where I have always had problems and after 14 years of CD I I will have to have that part removed. I always knew that this was something that would eventually happen but I am having a very hard time dealing with it lately. I hardly ever cry or feel depressed but lately I have just felt veryoverwhelmed and sad because CD is something that will never go away and gets worse instead of better. I know a lot of my feeling sad lately probably has to do with lack of nutrition from poor absorption due to the diease but it is hard because nobody really understand what I am going thru. I
I found this site last nite and when I started reading the posts I felt like someone knew exactally how I was feeling and I just wanted to reach out and hug everyone on here and tell them that I understand and you are not alone.
Wow I tried to make it a short story and I left a lot out but 14 years of CD is a lot of history for one page! I would like to talk to some people that have had a removal/resection. I have a lot of questions and am trying to prepare myself mentally for this procedure because I am pretty sure that is my next step. Thank you everyone for reading my story and sharing yours. Feel free to reply or message me
Hang in there and be strong and take it one day at a time. That is what I am doing right now
