Well hello there everyone,
So here is my story.
I grew up in a small town in western New York. I had never heard of IBD or Crohn's until I was diagnosed in 2005. I was stationed in South Korea serving in the Air Force at the time. I started showing systems about a year before I was diagnosed, weight loss stomach cramps, fequent trips to the bathroom and just an overall feeking of being sick. Because of being in Korea where there were limited resources for the doctors to use I was sent back to the states for more tests. Let me just say Hawaii is not a bad place to be sent to! It was there that Doctors finaly were able to figure out that I had Crohn's Disease. I was actually told on my birthday. Now theres a good present for you. My first feeling was relief because after a year of not knowing they had finally figured out the problem. I really didn't have time to think about how this would effect the rest of my life. Right after I was diagnosed the Air Force decided to medical seperate me.
After Leaving the Air Force I returned home and started to plan my new life. I went to college for Drafting. During this time I had my first surgery. At the time I was using prednizone and 6MP to control the disease. I was still having the cramps and trips to the bathroom but I was to involed with my life to really pay attention. Well one day I had a masive pain in my gut. I thought it was my appendex. I had a cousin who had had the same pain and that was the problem. So I went to the Hospital. Long story short my bowel was perferated and they had to perform emergancy surgery. they had to remove 6 inches of small bowel and give me an illeostomy bag. I only had it for three months when they reversed the procees and hooked me back up (my second surgery).
After I graduated I moved back and got a job. During all of this I never really got the crohn's under control. The truth of the matter was I didn't really want to admit that I had crohn's and in turn ignored it. I was young and invicable. I didn't know how bad it could get. My life went on and the disease got worse.
It started getting harder and harder to ignore. I was hospitalized a few time for malnutrition and stomiach pain. Then came the fistulas. They positioned themself in a rather uncomfertable place and proceed to become quite a pain in the rear litieraly. After meeting with both a surgeon and my GI doc we decided on a course of treatment. I was to begin Humara for the crohn's and a supository for the fistulas. This however didn't work.
My Crohn's had gone to far and couldn't be reversed with the new meds. they would have to take out my colon. This would be my third surgery. I was also informed that I would have an ostomy bag not to temperary like before but for the rest of my life. This was quite a blow to me. I was 29 at the time and felt I was to young to have to go through all of this. Well I had the surgery and went on with life
My life was good for about two years. I was taken off al medication and seemed to be doing well. There was no sign of the disease in my body and I was starting to feel a lot better. Then the fistulas returned. This time they presented themselves next to my stoma. Again we decided that we would treat it with medication. Humara again and again it didn't work. I should say it worked for a few months but then not so much. the fistulas came back along with the stomach cramps and weight loss. Surgery was again the only option left. So three days before Thanksgiving I went in for my forth surgery.
That was this past Thanksgiving. I wish I could say I am now doing better but that would not be the truth. Yes my crohn's now seems to be undercontrol. I have started Remicade for it and hope it will continue to work. The problem now is what my Doctors have said is "Short Gut Syndrome." You see to date I have lost my colon and 1/3 of my small bowel. because if this everything I eat and drink flies through me. I fight dehydration and malnutrition every day. They are doing their best to slow down my gut but it is proving difficult. I have been on lumotal, imodiem, paragoric and octrietide since the surgery with little effect. I have also add fiber in to my diet. We continue to fight but it is getting rather exhausting.
Well thats my story. It's been a long hard road and its not over. I am however confident that some day I will get back to normal and be able to continue on with life. Thats the thought that keeps me going.
So here is my story.
I grew up in a small town in western New York. I had never heard of IBD or Crohn's until I was diagnosed in 2005. I was stationed in South Korea serving in the Air Force at the time. I started showing systems about a year before I was diagnosed, weight loss stomach cramps, fequent trips to the bathroom and just an overall feeking of being sick. Because of being in Korea where there were limited resources for the doctors to use I was sent back to the states for more tests. Let me just say Hawaii is not a bad place to be sent to! It was there that Doctors finaly were able to figure out that I had Crohn's Disease. I was actually told on my birthday. Now theres a good present for you. My first feeling was relief because after a year of not knowing they had finally figured out the problem. I really didn't have time to think about how this would effect the rest of my life. Right after I was diagnosed the Air Force decided to medical seperate me.
After Leaving the Air Force I returned home and started to plan my new life. I went to college for Drafting. During this time I had my first surgery. At the time I was using prednizone and 6MP to control the disease. I was still having the cramps and trips to the bathroom but I was to involed with my life to really pay attention. Well one day I had a masive pain in my gut. I thought it was my appendex. I had a cousin who had had the same pain and that was the problem. So I went to the Hospital. Long story short my bowel was perferated and they had to perform emergancy surgery. they had to remove 6 inches of small bowel and give me an illeostomy bag. I only had it for three months when they reversed the procees and hooked me back up (my second surgery).
After I graduated I moved back and got a job. During all of this I never really got the crohn's under control. The truth of the matter was I didn't really want to admit that I had crohn's and in turn ignored it. I was young and invicable. I didn't know how bad it could get. My life went on and the disease got worse.
It started getting harder and harder to ignore. I was hospitalized a few time for malnutrition and stomiach pain. Then came the fistulas. They positioned themself in a rather uncomfertable place and proceed to become quite a pain in the rear litieraly. After meeting with both a surgeon and my GI doc we decided on a course of treatment. I was to begin Humara for the crohn's and a supository for the fistulas. This however didn't work.
My Crohn's had gone to far and couldn't be reversed with the new meds. they would have to take out my colon. This would be my third surgery. I was also informed that I would have an ostomy bag not to temperary like before but for the rest of my life. This was quite a blow to me. I was 29 at the time and felt I was to young to have to go through all of this. Well I had the surgery and went on with life
My life was good for about two years. I was taken off al medication and seemed to be doing well. There was no sign of the disease in my body and I was starting to feel a lot better. Then the fistulas returned. This time they presented themselves next to my stoma. Again we decided that we would treat it with medication. Humara again and again it didn't work. I should say it worked for a few months but then not so much. the fistulas came back along with the stomach cramps and weight loss. Surgery was again the only option left. So three days before Thanksgiving I went in for my forth surgery.
That was this past Thanksgiving. I wish I could say I am now doing better but that would not be the truth. Yes my crohn's now seems to be undercontrol. I have started Remicade for it and hope it will continue to work. The problem now is what my Doctors have said is "Short Gut Syndrome." You see to date I have lost my colon and 1/3 of my small bowel. because if this everything I eat and drink flies through me. I fight dehydration and malnutrition every day. They are doing their best to slow down my gut but it is proving difficult. I have been on lumotal, imodiem, paragoric and octrietide since the surgery with little effect. I have also add fiber in to my diet. We continue to fight but it is getting rather exhausting.
Well thats my story. It's been a long hard road and its not over. I am however confident that some day I will get back to normal and be able to continue on with life. Thats the thought that keeps me going.
