- Joined
- Mar 20, 2013
- Messages
- 1
Hello everyone. I am in need of some advice!! I guess I'll start with my background story.
I struggled undiagnosed for two years while doctors ran tests and tried to discect my symptoms. Following an episode of severe stomach pain and vomiting I became so dehydrated that I nearly blacked out. My parents rushed me to the hospital as I lay in the back seat scrunched over in the fetal position from all the pain. I was given an NG tube and solu-medrol. I was diagnosed with Crohns in 2006 and given pentasa, and prednisone. I struggled with severe pain, diarrhea, and vomiting for several more years and missed most of my school days. Over the summer of my junior year of high school in 2009 I had a small bowl resection surgery. Before the surgery I had five hospitalizations from 2006-2008. After the surgery I was able to enjoy my senior year of high school symptom free and without the bloated cheeks associated with prednisone. I remained on pentasa only as a maintenance treatment.
During my sophomore year of college my symptoms returned. I hagan having stomach pain, rectal bleeding, vomiting, fistulas, and about ten bowl movements a day. I was hospitalized again and had to drop out of my classes and quit my job. I was put on Humira and an increased dose of pentasa. Since being on the Humira I became increasingly tired and found myself getting sick more often. I had a cold about once every month and each time it took two doses of antibiotics minimum to clear the symptoms.
I pushed through the fatigue and symptoms determined to get back to normal life and began working again and taking classes online. After a year of this my symptoms became so severe I was rushed to the hospital again with a mouth covered in over 20 mouth ulcers. I was dehydrated and my stomach pain was once again excruciating . I was given flagyl, prednisone, and valcyclovier for the mouth sores. This time my dose of prednisone was more than previous times which was understandable since I was now twenty and the last time I was on it was during highschool. The side effects of the prednisone were familiar at first - increased appetite, weight gain, mood swings, and trouble sleeping. After about four weeks of the steroid treatment I began to experience alarming side effects such as hallucinations, perrinoia, mania, and anxiety. During the fifth week I was so delusional that my parents had to call an ambulance to take me into the ER. My heart rate was through the roof and I had lost touch with reality. I spent four weeks in the hospital psych ward being detoxed from the steroids. I was diagnosed with rare steroid induced psychosis. They were afraid to take me completely off of them and risk my Crohns symptoms throwing themselves into the mix. During the third week of my stay I became completely catatonic and the doctors told my parents that "she may not come out of this" and urged them to prepare themselves for the worst. After a week in the catatonic state I began to respond and came back. It is a miracle that I came out of it as quickly as I did. A week later I was released and told to only continue the Humira and pentasa.
Following this event I was so traumatized and suffered from post traumatic stress and anxiety. I spent four months seeing a psychologist and psychiatrist and was treated with seroquel for my flashbacks and night terrors. Finally after several months I released the anxiety and have had no further therapy or struggles with it.
I began working again and held down a job for almost a year which is a HUGE deal for my health. I was sick numerous times due to my weakened immune system. Towards the end I began to feel increased stomach pain, fatigue, fistulas and anal cuts, and my newest symptom - severe joint pain. I quit my job last October knowing I was on the verge of another hospitalization. After consulting with my doctor he advised me to stop pursuing college or a career as the physical and mental stresses are too much for my body to handle. I began staying home and focusing on my health. Things began to get better for awhile.
Now, I am on a juicing diet and allowing my body plenty of rest. I was able to participate in church and volunteer activities in moderation. The beginning of this month my symptoms have increased. My joint and bone pain is now so intense that I have made an appointment with a pain management doctor who I will see on Monday. My stomach pain has increased and bowl movements are more frequent. My mouth ulcers came back and I am back on medication for those. I almost went into the hospital last week as the stomach pain was unbearable. My doctor told me to do a two week bowl rest clear liquid diet and stay on bed rest to allow my body to strengthen itself. He is trying to prolong a hospitalization because if I do have to go in the treatment would be steroids. After my last reaction to the steroids everyone, including my doctor, is fearful to pursue a steroid treatment.
All of that to say this - I am only 22 years old and have been told the following :
1. College is not beneficial for you
2. You cannot work
3. You cannot be treated with steroids which is our option for treatment in the event of another hospitalization
4. You are developing serious arthritis due to Crohns
If this two week bowel rest does not work and I am hospitalized what will they do !!?? Does anyone know of any other treatment options other than steroids ?! Is severe arthritis and joint pain common with Crohns ?! How can I get healthy and pursue my career goals so I can work !!?
I am sorry for the long post. I'm just at the end of my rope here......
Thank You & God Bless
I struggled undiagnosed for two years while doctors ran tests and tried to discect my symptoms. Following an episode of severe stomach pain and vomiting I became so dehydrated that I nearly blacked out. My parents rushed me to the hospital as I lay in the back seat scrunched over in the fetal position from all the pain. I was given an NG tube and solu-medrol. I was diagnosed with Crohns in 2006 and given pentasa, and prednisone. I struggled with severe pain, diarrhea, and vomiting for several more years and missed most of my school days. Over the summer of my junior year of high school in 2009 I had a small bowl resection surgery. Before the surgery I had five hospitalizations from 2006-2008. After the surgery I was able to enjoy my senior year of high school symptom free and without the bloated cheeks associated with prednisone. I remained on pentasa only as a maintenance treatment.
During my sophomore year of college my symptoms returned. I hagan having stomach pain, rectal bleeding, vomiting, fistulas, and about ten bowl movements a day. I was hospitalized again and had to drop out of my classes and quit my job. I was put on Humira and an increased dose of pentasa. Since being on the Humira I became increasingly tired and found myself getting sick more often. I had a cold about once every month and each time it took two doses of antibiotics minimum to clear the symptoms.
I pushed through the fatigue and symptoms determined to get back to normal life and began working again and taking classes online. After a year of this my symptoms became so severe I was rushed to the hospital again with a mouth covered in over 20 mouth ulcers. I was dehydrated and my stomach pain was once again excruciating . I was given flagyl, prednisone, and valcyclovier for the mouth sores. This time my dose of prednisone was more than previous times which was understandable since I was now twenty and the last time I was on it was during highschool. The side effects of the prednisone were familiar at first - increased appetite, weight gain, mood swings, and trouble sleeping. After about four weeks of the steroid treatment I began to experience alarming side effects such as hallucinations, perrinoia, mania, and anxiety. During the fifth week I was so delusional that my parents had to call an ambulance to take me into the ER. My heart rate was through the roof and I had lost touch with reality. I spent four weeks in the hospital psych ward being detoxed from the steroids. I was diagnosed with rare steroid induced psychosis. They were afraid to take me completely off of them and risk my Crohns symptoms throwing themselves into the mix. During the third week of my stay I became completely catatonic and the doctors told my parents that "she may not come out of this" and urged them to prepare themselves for the worst. After a week in the catatonic state I began to respond and came back. It is a miracle that I came out of it as quickly as I did. A week later I was released and told to only continue the Humira and pentasa.
Following this event I was so traumatized and suffered from post traumatic stress and anxiety. I spent four months seeing a psychologist and psychiatrist and was treated with seroquel for my flashbacks and night terrors. Finally after several months I released the anxiety and have had no further therapy or struggles with it.
I began working again and held down a job for almost a year which is a HUGE deal for my health. I was sick numerous times due to my weakened immune system. Towards the end I began to feel increased stomach pain, fatigue, fistulas and anal cuts, and my newest symptom - severe joint pain. I quit my job last October knowing I was on the verge of another hospitalization. After consulting with my doctor he advised me to stop pursuing college or a career as the physical and mental stresses are too much for my body to handle. I began staying home and focusing on my health. Things began to get better for awhile.
Now, I am on a juicing diet and allowing my body plenty of rest. I was able to participate in church and volunteer activities in moderation. The beginning of this month my symptoms have increased. My joint and bone pain is now so intense that I have made an appointment with a pain management doctor who I will see on Monday. My stomach pain has increased and bowl movements are more frequent. My mouth ulcers came back and I am back on medication for those. I almost went into the hospital last week as the stomach pain was unbearable. My doctor told me to do a two week bowl rest clear liquid diet and stay on bed rest to allow my body to strengthen itself. He is trying to prolong a hospitalization because if I do have to go in the treatment would be steroids. After my last reaction to the steroids everyone, including my doctor, is fearful to pursue a steroid treatment.
All of that to say this - I am only 22 years old and have been told the following :
1. College is not beneficial for you
2. You cannot work
3. You cannot be treated with steroids which is our option for treatment in the event of another hospitalization
4. You are developing serious arthritis due to Crohns
If this two week bowel rest does not work and I am hospitalized what will they do !!?? Does anyone know of any other treatment options other than steroids ?! Is severe arthritis and joint pain common with Crohns ?! How can I get healthy and pursue my career goals so I can work !!?
I am sorry for the long post. I'm just at the end of my rope here......
Thank You & God Bless
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