:ybatty: I first started to have bowel symptoms as a child (what I remember) I would have nausea, diarrhea,belly pain. Which was always put off on what I ate or some bug. I continued with this all of my life. My weight would flucuate between being skinny and sometimes being fat. I just always remember having stomach problems. Mom was a firm believer in enemas if you complained too much so I soon learned to shut up. But I always remember my belly hurting, had diarrhea
she also used paragoric quite a bit. As I grew older it just continued. I had a car accident in approx. 1986 started using a lot of different anti-inlammatories for back and neck pain. About 2 years later I got extremely sick became jaundiced my liver studies were all elevated I crawled to the bathroom noticed my pee had turned black. I had fevers of 102 to 105 had severe diarrhea. We went to the ER they sent me home they did tests for Hep but they all were negative. They didn't know what to think. I saw my first GI doc around the age of 35. They hospitalized me I lost like 50+ pounds with diarrhea still jaundiced I was so sick and weak they put me on Prednisone and I responded favorably health wise but mentally
I became manic. They weaned me off of pred and I just got sick all over again. So the cycle continued I would stay up all night became very nervous and still somewhat manic . They scoped me and scoped me sometimes I would have inflammed bowel sometimes not. I just remember being told things like there is nothing wrong with you and there is no reasons for this pain. I became worn down thought I was crazy. But the pred always made me manic and they would have to wean me off. I moved to a new town b/c my husband was transferred I
always continued to work as a nurse in some capacity. Saw new GI docs brought all my medical records was scoped and scoped still having diarrhea and lots of belly pain. One of my scopes showed Ulcerative colitis so I was put back on pred and became manic but was still told I had no reason to be in pain all of the time I used some pain meds from time to time. Was hospitalized told there was no reason for all of my complaints of pain although there was always bad diarrhea
and weight loss followed by weight gain with pred. I had anal fissures weird rashes on my arms and legs sometimes ulcers on my legs weird swelling and markings on my legs. In the mean time my back pain became so severe I needed to have back surgery so I had an anterior posterior fusion.The recuperation for this was months and months I still continued with pain in my belly diarrhea etc. I couldn't take anti-inflammatories so I took pain meds. I continued to have these symptoms of diarrhea and pain in my belly and would have mania which at this point everybody just thought I was attention seeking addicted to pain meds.
I was brought into surgery where they found ropes and ropes of scar tissue that
was attatched to my colon and abdominal wall so when the bowel would become inflammed it would drive me crazy. So they relieved the scar tissue put me back on pred and I would go manic each time getting worse. I would go off on people
I was horrid to my family, I would stay up all night cleaning cooking my husband
would wake up to four meals every morning they would wean me off my symptoms would return always they would tell me there was no reason to have such pain. I tried to continue with my life the best I could. I took anti-depressants
med for anxiety saw psychiatrist because everyone thought I was plumb nuts
I lost friends,etc. I could maybe go 2 years and the pain became so severe I would go back to surgery 1 time my colon was all twisted around my ovary and tube with scar tissue, but each time I complained they found something. But not before having several bouts of ER visits being told it was all in my head and that
I was drug seeking severely screwed up,etc. Colon inflammed back on pred round and round. At this point I became disabled went through therapy. Again approx.
2 yrs would go by and I would be back in the same place miserable with the belly pain diarrhea ER visits pred each time I was on pred it made me more manic anxiety etc. Then around the time of Katrina I became so sick I lost much weight
got so sick back in the hospital this time they thought it was appendicitis.Went back into my belly it was more scar tissue it would look like ropes on the pictures
where it connected to my colon this time they put me on Entocort b/c I really had a bad time of it @ this time my terminal ileum was all ulcerated.I went manic and was flying like a kite I wanted to cut down a tree with a chain saw and I wasn't kidding my husband was beside himself. I was put on some anti depressant called Trazadone. It would just put my lites out and drug me so bad. My family was so concerned they did an intervention on me and had me committed for 14 days. This was by far the worst experience of my life they thought they were helping me it was right after Katrina( i live in Mandeville La which is 24 miles from New Orleans) but it was horrid. I was in there with Drug addicts heroin, methadone, cocaine they acted out so bad. But I was just out of the hospital
with another operation and a flare of uc or so they thought they didn't give me my meds right and I was so sick mad and confused and manic. Well I was finally diagnosed with steroid psychosis after many evaluations told I could never take any kind of steroids again. After much therapy I realized my family was just trying
to help me but I was still very hurt I was so sick in that place and I sometimes
go back and forth with remembering and still have flashes of never being able to forgive my family. But the saga continued now on Pentasa. But it didn't stop my flares. Last real big one was in January I was in the hospital with severe pain in my right side lower and upper. They went in again even though they had scanned my abdomen and ultrasounded my gallbladder a thousand times since the start of this my gallbladder had been in a constant state of contraction the surgeon said the pain I was having there for years was constant and it was so
scarred it must have been like that for 15-20 years. But after the GB surgery
I was still having pain in my Right lower belly the GI doc ran a test on me and found out that I have Crohns. I am on Pentasa 1000mg 4 times a day and he wants to start me on Remicade. But I am so scared of that stuff. My husband lost his job recently we will have to apply for Cobra. But you know he lost his job 2 months after I was diagnosed with Crohns my dr had told me that if you are branded with the Crohns disease they often do that. Well I'm still here flaring some. Have nausea diarrhea about 6-7 times a day. He has given me lomotil pain meds and Xanax he says I'm a wreck. But right now I am just trying to make it one day at a time. I took a nursing travel job up in Maine at a girls camp, my husband has also taken a job there too for the summer. Maybe just getting away
and being able to have fresh air, a place to swim, Beautiful scenery will bring me back to normal. Sorry this is so long but I wanted to tell my whole story. I think I feel a little better now.
You know at this point you find it hard to trust people. You just don't know.
Bethy
she also used paragoric quite a bit. As I grew older it just continued. I had a car accident in approx. 1986 started using a lot of different anti-inlammatories for back and neck pain. About 2 years later I got extremely sick became jaundiced my liver studies were all elevated I crawled to the bathroom noticed my pee had turned black. I had fevers of 102 to 105 had severe diarrhea. We went to the ER they sent me home they did tests for Hep but they all were negative. They didn't know what to think. I saw my first GI doc around the age of 35. They hospitalized me I lost like 50+ pounds with diarrhea still jaundiced I was so sick and weak they put me on Prednisone and I responded favorably health wise but mentally
I became manic. They weaned me off of pred and I just got sick all over again. So the cycle continued I would stay up all night became very nervous and still somewhat manic . They scoped me and scoped me sometimes I would have inflammed bowel sometimes not. I just remember being told things like there is nothing wrong with you and there is no reasons for this pain. I became worn down thought I was crazy. But the pred always made me manic and they would have to wean me off. I moved to a new town b/c my husband was transferred I
always continued to work as a nurse in some capacity. Saw new GI docs brought all my medical records was scoped and scoped still having diarrhea and lots of belly pain. One of my scopes showed Ulcerative colitis so I was put back on pred and became manic but was still told I had no reason to be in pain all of the time I used some pain meds from time to time. Was hospitalized told there was no reason for all of my complaints of pain although there was always bad diarrhea
and weight loss followed by weight gain with pred. I had anal fissures weird rashes on my arms and legs sometimes ulcers on my legs weird swelling and markings on my legs. In the mean time my back pain became so severe I needed to have back surgery so I had an anterior posterior fusion.The recuperation for this was months and months I still continued with pain in my belly diarrhea etc. I couldn't take anti-inflammatories so I took pain meds. I continued to have these symptoms of diarrhea and pain in my belly and would have mania which at this point everybody just thought I was attention seeking addicted to pain meds.
I was brought into surgery where they found ropes and ropes of scar tissue that
was attatched to my colon and abdominal wall so when the bowel would become inflammed it would drive me crazy. So they relieved the scar tissue put me back on pred and I would go manic each time getting worse. I would go off on people
I was horrid to my family, I would stay up all night cleaning cooking my husband
would wake up to four meals every morning they would wean me off my symptoms would return always they would tell me there was no reason to have such pain. I tried to continue with my life the best I could. I took anti-depressants
med for anxiety saw psychiatrist because everyone thought I was plumb nuts
I lost friends,etc. I could maybe go 2 years and the pain became so severe I would go back to surgery 1 time my colon was all twisted around my ovary and tube with scar tissue, but each time I complained they found something. But not before having several bouts of ER visits being told it was all in my head and that
I was drug seeking severely screwed up,etc. Colon inflammed back on pred round and round. At this point I became disabled went through therapy. Again approx.
2 yrs would go by and I would be back in the same place miserable with the belly pain diarrhea ER visits pred each time I was on pred it made me more manic anxiety etc. Then around the time of Katrina I became so sick I lost much weight
got so sick back in the hospital this time they thought it was appendicitis.Went back into my belly it was more scar tissue it would look like ropes on the pictures
where it connected to my colon this time they put me on Entocort b/c I really had a bad time of it @ this time my terminal ileum was all ulcerated.I went manic and was flying like a kite I wanted to cut down a tree with a chain saw and I wasn't kidding my husband was beside himself. I was put on some anti depressant called Trazadone. It would just put my lites out and drug me so bad. My family was so concerned they did an intervention on me and had me committed for 14 days. This was by far the worst experience of my life they thought they were helping me it was right after Katrina( i live in Mandeville La which is 24 miles from New Orleans) but it was horrid. I was in there with Drug addicts heroin, methadone, cocaine they acted out so bad. But I was just out of the hospital
with another operation and a flare of uc or so they thought they didn't give me my meds right and I was so sick mad and confused and manic. Well I was finally diagnosed with steroid psychosis after many evaluations told I could never take any kind of steroids again. After much therapy I realized my family was just trying
to help me but I was still very hurt I was so sick in that place and I sometimes
go back and forth with remembering and still have flashes of never being able to forgive my family. But the saga continued now on Pentasa. But it didn't stop my flares. Last real big one was in January I was in the hospital with severe pain in my right side lower and upper. They went in again even though they had scanned my abdomen and ultrasounded my gallbladder a thousand times since the start of this my gallbladder had been in a constant state of contraction the surgeon said the pain I was having there for years was constant and it was so
scarred it must have been like that for 15-20 years. But after the GB surgery
I was still having pain in my Right lower belly the GI doc ran a test on me and found out that I have Crohns. I am on Pentasa 1000mg 4 times a day and he wants to start me on Remicade. But I am so scared of that stuff. My husband lost his job recently we will have to apply for Cobra. But you know he lost his job 2 months after I was diagnosed with Crohns my dr had told me that if you are branded with the Crohns disease they often do that. Well I'm still here flaring some. Have nausea diarrhea about 6-7 times a day. He has given me lomotil pain meds and Xanax he says I'm a wreck. But right now I am just trying to make it one day at a time. I took a nursing travel job up in Maine at a girls camp, my husband has also taken a job there too for the summer. Maybe just getting away
and being able to have fresh air, a place to swim, Beautiful scenery will bring me back to normal. Sorry this is so long but I wanted to tell my whole story. I think I feel a little better now.
You know at this point you find it hard to trust people. You just don't know.
Bethy
