Hello everyone! I am new to the forum and glad I have been able to find a place that I can talk with others who are going through the same thing I have been going through. This will be kinda long, but it is in hopes that I give another person the hope that they too, can find out what is wrong with them finally after so many years of "dealing" with all the pain and suffering.
My name is Dana and I am a 37 year old mother of 2 beautiful girls, 17 year old and a 13 year old. I was recently (finally) diagnosed last week with Eosinophilic (Allergic Colitis) Crohn's Disease :eek2: by a colonoscopy and the pathology report. I have suffered with symptoms for the last 17 years but can remember having "stomach" issues as a child.
As a child, I could always remember having what I called a "nervous stomach". If I got slightly upset, or ate something that did not agree with me, I would have stomach pains and diarrhea for a couple of days and then go back to normal. This went on as far back as I could remember until the day I became pregnant at 19 with my oldest child. By the 3rd month of pregnancy, I started having diarrhea and it lasted the entire time I was pregnant. My Dr's were baffled and had no idea why I had it and gave me medication to control the diarrhea.
By the time my daughter was born, the diarrhea stopped but the stomach pain began again. This was also the time I learned my 30 year old brother was diagnosed with colon cancer. Scared out of my mind, I immediately went to my Dr and told her what I have been experiencing. She sent me to have a Upper GI scan done and a barium enema scan done. The findings were that I had Colitis and Ileitis. And that was about the extent of the treatment. She never gave me meds, never sent me for anymore testing, never referred me to a specialist, and basically just kinda shrugged me off.
Over the years, I moved on to different Dr's explaining my situation, and again was always shrugged off and told that I probably have IBS.:confused2: I ended up just learning to live with my symptoms and would just eat a bland diet when I would have a flare up and honestly, didn't really understand what was going on with me or what if anything was really wrong with me. No Dr ever gave me any kind of medication to help me or send me for any testing. Although, when I became pregnant again with my second child at the age of 23, I again almost immediately of finding out I was pregnant, started the diarrhea again for the entire 9 months and was put on medication for the diarrhea. It just always baffled me why my OB/Gyn never thought it was crazy or weird for me to have diarrhea the entire 9 months of pregnancy and never do anything more than just give me meds to control it.
About 5 years ago, I woke up one morning in sever pain of all my joints and could not walk. All my joints and my feet swelled to terrible size, I had a high fever and cried uncontrollably from the pain. I thought that I had a terrible virus or flu and "lived" with it for a week. I ended up in the emergency room and they also could not figure out what was wrong with me. I went to my now Dr ( who by the way has been the best Dr ever and has helped me more in the last 5 years than any Dr I have ever seen in my 37 years of being on this earth) and he was extremely concerned with what he saw. He thought at that time, I had either Lupus or Rheumatoid Arthritis and sent me to a Endo specialist. He could not find what was wrong with me either and basically I was told that I had a virus and it would have to "run its course". :ybatty: This episode lasted 4 months and I was on 20mg Prednisone to be able to function. It didn't take all the pain away but it made it so I could actually get up and move around. Once the flare up was over and I could ween myself off the predisone, I gained 65 pounds from the whole ordeal :ymad:
Still at this time, no one, including me, was putting 2 and 2 together. I had become good at dealing with my bouts of stomach pain and diarrhea good and just really never though more about it or brought it up to my Dr because I also had come to the conclusion the previous Dr's were right, it was just IBS and I know I can't eat certain things. About a year and half ago, I started having muscle aches, waking up with head aches and over all feeling like I was either going to come down with the flu or was just not feeling good like I was about to be sick with a cold or something. At first I thought it might be something to do with my enlarge thyroid that I was also diagnosed with 3 years before, but all my thyroid levels and my thyroid were fine. About 5 months ago, I told my husband that I might need to go to the Dr and have him look into my body aches but again, just shrugged it off to stress, not sleeping well and my job. Then the day happened, 2 and half months ago, that changed it all.
I woke up that morning 2 and half months ago, to the worst stomach pain and diarrhea I have ever had. Thought to myself, "ugh, here we go again", but something this time nagged at me that this one was different. A month went by of having to stay in the bathroom 10 to 20 times a day, and the stomach pain was so bad sometimes, I just wanted to die. I had never experienced this before now and was getting very scared. But still, and I don't know why, I didn't go to the Dr. Never had the bloody diarrhea but this continued for another 3 weeks and I finally gave in and went to see my Dr. They drew blood and I got a call back in 2 days later for a "talk". Yeah, I was super scared at this point. When I got there, this is when my life seemed to feel like it stopped. Fast forward to today and to my diagnosis.
Now, I am scared, torn inside, confused, angry, etc. You name it, I am feeling it. And the scariest part is both my daughts complain on a daily basis that their stomach hurts and there Dr's also cannot figure out what is wrong with them. Now that I have a name to what is wrong with me, I am so scared to take them back to their Dr and tell her what is wrong with me cause I don't want my girls to have this. I am so depressed right now, that I sometimes can't seem to get off the couch to be a mom or even just be me anymore. I am soooo very glad now to know what is wrong with me but I feel like I have lost myself in all this and I am very very sad. :frown:
I have been on Asacol HD 800mg 2 pills twice daily for a week now with no change. If anything, I feel like I have gotten somewhat worse. So my GI Dr, yesterday, put me on Prednisone 10mg 2 pills twice daily (40mg daily) for 2 weeks to see if I improve and then he will ween me off of it to see if I stay in remission with the Asacol at that time. I cried when he put me on the predisone because I did NOT want to go back on that devil medicine. Right before I had this flare up, I had been dieting and exercising and had lost 31 pounds. Then I became sick and lost another 17 pounds(not that I wanted to loose it this way). I do not want to put on weight again because I need to loose weight and get healthy. And the side effects when I was on prednisone were awful. I am already feeling them today and have cried quite a bit. I just pray that 2 weeks is all I need of this horrible medicine for it to get me to remission and then the Asacol can keep me there. I am so confused right now and don't know where my life is taking me. And I am trying to stay positive but it is so hard!
My name is Dana and I am a 37 year old mother of 2 beautiful girls, 17 year old and a 13 year old. I was recently (finally) diagnosed last week with Eosinophilic (Allergic Colitis) Crohn's Disease :eek2: by a colonoscopy and the pathology report. I have suffered with symptoms for the last 17 years but can remember having "stomach" issues as a child.
As a child, I could always remember having what I called a "nervous stomach". If I got slightly upset, or ate something that did not agree with me, I would have stomach pains and diarrhea for a couple of days and then go back to normal. This went on as far back as I could remember until the day I became pregnant at 19 with my oldest child. By the 3rd month of pregnancy, I started having diarrhea and it lasted the entire time I was pregnant. My Dr's were baffled and had no idea why I had it and gave me medication to control the diarrhea.
By the time my daughter was born, the diarrhea stopped but the stomach pain began again. This was also the time I learned my 30 year old brother was diagnosed with colon cancer. Scared out of my mind, I immediately went to my Dr and told her what I have been experiencing. She sent me to have a Upper GI scan done and a barium enema scan done. The findings were that I had Colitis and Ileitis. And that was about the extent of the treatment. She never gave me meds, never sent me for anymore testing, never referred me to a specialist, and basically just kinda shrugged me off.
Over the years, I moved on to different Dr's explaining my situation, and again was always shrugged off and told that I probably have IBS.:confused2: I ended up just learning to live with my symptoms and would just eat a bland diet when I would have a flare up and honestly, didn't really understand what was going on with me or what if anything was really wrong with me. No Dr ever gave me any kind of medication to help me or send me for any testing. Although, when I became pregnant again with my second child at the age of 23, I again almost immediately of finding out I was pregnant, started the diarrhea again for the entire 9 months and was put on medication for the diarrhea. It just always baffled me why my OB/Gyn never thought it was crazy or weird for me to have diarrhea the entire 9 months of pregnancy and never do anything more than just give me meds to control it.
About 5 years ago, I woke up one morning in sever pain of all my joints and could not walk. All my joints and my feet swelled to terrible size, I had a high fever and cried uncontrollably from the pain. I thought that I had a terrible virus or flu and "lived" with it for a week. I ended up in the emergency room and they also could not figure out what was wrong with me. I went to my now Dr ( who by the way has been the best Dr ever and has helped me more in the last 5 years than any Dr I have ever seen in my 37 years of being on this earth) and he was extremely concerned with what he saw. He thought at that time, I had either Lupus or Rheumatoid Arthritis and sent me to a Endo specialist. He could not find what was wrong with me either and basically I was told that I had a virus and it would have to "run its course". :ybatty: This episode lasted 4 months and I was on 20mg Prednisone to be able to function. It didn't take all the pain away but it made it so I could actually get up and move around. Once the flare up was over and I could ween myself off the predisone, I gained 65 pounds from the whole ordeal :ymad:
Still at this time, no one, including me, was putting 2 and 2 together. I had become good at dealing with my bouts of stomach pain and diarrhea good and just really never though more about it or brought it up to my Dr because I also had come to the conclusion the previous Dr's were right, it was just IBS and I know I can't eat certain things. About a year and half ago, I started having muscle aches, waking up with head aches and over all feeling like I was either going to come down with the flu or was just not feeling good like I was about to be sick with a cold or something. At first I thought it might be something to do with my enlarge thyroid that I was also diagnosed with 3 years before, but all my thyroid levels and my thyroid were fine. About 5 months ago, I told my husband that I might need to go to the Dr and have him look into my body aches but again, just shrugged it off to stress, not sleeping well and my job. Then the day happened, 2 and half months ago, that changed it all.
I woke up that morning 2 and half months ago, to the worst stomach pain and diarrhea I have ever had. Thought to myself, "ugh, here we go again", but something this time nagged at me that this one was different. A month went by of having to stay in the bathroom 10 to 20 times a day, and the stomach pain was so bad sometimes, I just wanted to die. I had never experienced this before now and was getting very scared. But still, and I don't know why, I didn't go to the Dr. Never had the bloody diarrhea but this continued for another 3 weeks and I finally gave in and went to see my Dr. They drew blood and I got a call back in 2 days later for a "talk". Yeah, I was super scared at this point. When I got there, this is when my life seemed to feel like it stopped. Fast forward to today and to my diagnosis.
Now, I am scared, torn inside, confused, angry, etc. You name it, I am feeling it. And the scariest part is both my daughts complain on a daily basis that their stomach hurts and there Dr's also cannot figure out what is wrong with them. Now that I have a name to what is wrong with me, I am so scared to take them back to their Dr and tell her what is wrong with me cause I don't want my girls to have this. I am so depressed right now, that I sometimes can't seem to get off the couch to be a mom or even just be me anymore. I am soooo very glad now to know what is wrong with me but I feel like I have lost myself in all this and I am very very sad. :frown:
I have been on Asacol HD 800mg 2 pills twice daily for a week now with no change. If anything, I feel like I have gotten somewhat worse. So my GI Dr, yesterday, put me on Prednisone 10mg 2 pills twice daily (40mg daily) for 2 weeks to see if I improve and then he will ween me off of it to see if I stay in remission with the Asacol at that time. I cried when he put me on the predisone because I did NOT want to go back on that devil medicine. Right before I had this flare up, I had been dieting and exercising and had lost 31 pounds. Then I became sick and lost another 17 pounds(not that I wanted to loose it this way). I do not want to put on weight again because I need to loose weight and get healthy. And the side effects when I was on prednisone were awful. I am already feeling them today and have cried quite a bit. I just pray that 2 weeks is all I need of this horrible medicine for it to get me to remission and then the Asacol can keep me there. I am so confused right now and don't know where my life is taking me. And I am trying to stay positive but it is so hard!
