Hello, my name is Lee and I am 26 years old and I have Crohn's Colitis.
My life prior to crohn's was good. I have a great job, a wonderful wife, and my dog Jake. I never thought about hospitals or being sick, I just thought about what fun thing we were going to do when the weekend came. I had occational diarrhea maybe about 3 times a month for most of my life but I thought this was normal and never thought much of it. But in March of 2008 my life came to a hault.
I would wake up every morning with slight little pains in my stomach that went away after I ate breakfast. After a couple of weeks I started to notice a little blood on the toilet paper. So I made an appointment with my GP and after she examined me and stuck her finger up my butt to check for blood, which she found, she wanted to refer me to a GI to get scoped. Being the stuborn guy I am I said cant we just wait a week I am sure this will go away? She said it was my decision but urged me to go, I didn't. But in the first week in April the pain and blood and diarrhea was unbearable, I was in the bathroom 15-20 times a day. My wife finally foreced me to the ER (which Im glad she did).
Hospital stay #1 April 2008
I get to the ER and the triage nurse examines me and asked me what my pain was at on a scale from 1-10. Having never been in an ER before I said it was a 4, big mistake. Three hours later I finally get called back and by this time the pain had really escallated. They hooked me up to an IV for fluid and made me drink the stuff before the CT scan. After the CT scan I was in severe pain and the ER doc said I could possibly have colitis. My wife asked if there was anything they could do about the pain. The doc wrote for dilaudid and the nurse put it in my IV. WOW, the pain was gone and I melted into the bed! They admited me for 6 days and while there I got a colonoscopy and was diagnosed with Crohn's. They kept me on a liquid diet and constant pain meds and antibiotics and prednisone. The GI doc that did the colonoscopy sent be home on 40mg of pred and some vicodin.
Hoping that I would just get better if I kept taking this prednisone and life would return to normal (I wish). I continued to go down hill. My weight went from a healthy 185 to 155. I was in constant pain, so in the first week of May I went back to the hospital with the same problems.
Hospital stay #2 May 2008
In the ER it was the same routine CT scan, Dilaudid, Melt into bed, admit to hospital this time for seven days. While there they did an MRI, X-rays, people from the lab came to draw blood which seemed like every 5 minutes. They also started me on Remicade. So now I am on Remicade and pred. After they finally let me go home I was weak and tired but continued to take my pred and get the Remicade infusions. I went right back to work (big mistake).
Over the next couple of months I continued to have problems diarrhea, blood, weight loss. I went for blood tests constantly. I was sick every day. I called my GI every other day but he seemed to not care or he was tired of me. Finally after I complaned enough they made an apointment for an outpatient colonocopy to see what was going on down there. At the hospital I waited with my wife for the doc to come and get me for the scope. After the scope I was still going in and out from the drugs but he said that remicade is failing and I need to be admited to the hospital so he could keep an eye on me.
Hospital stay #3 July 2008
This time for 11 days. Same routine pred, flagyl, cipro... but this time they put a Picc line in my right arm and gave me TPN because I was down to 124 pounds. I was hooked up to TPN for 12 hours every day I was there and I could feel that I had a little energy even though I could barly walk ten feet to the bathroom. WHen they let me go home I was so weak, I could do nothing but lay on the couch. They sent me home on 100mg of pred a day!! and would taper 10mg per week. This wasn't pred in pill form it was IV pred which I injected twice a day through my picc line.
A TPN nurse came to my house to show me how to administer the TPN which I do every night for 12 hours. The nurse also comes to my house once a week to change the dressing over my picc and draw blood.
January 2009
I am currently at 155 pounds and feeling better.
I am still on TPN and I take Humira weekly. Down to 20mgs pred
The bad news is I have to get off pred quickly because I have osteopenia in my spine and other problems from being on pred at high doses for long term. So we will see if the Humira is actually doing anything for me. If I taper to zero pred and I flare I will be forced with a hard desicion.
Tysabri or Surgry???
Tysabri has very bad side effects like liver failure and PML(brain Infection) and sugury is not a cure and I would have a ileostomy for the rest of my life. My new GI who is great is tapering my pred 5mg per week so I will know if I can survive on humira and watching my diet soon.
Well I could go on and on but this is my story in a nut shell, let me know if ou have any questions and I look forward to being a part of this great forum.
Lee
My life prior to crohn's was good. I have a great job, a wonderful wife, and my dog Jake. I never thought about hospitals or being sick, I just thought about what fun thing we were going to do when the weekend came. I had occational diarrhea maybe about 3 times a month for most of my life but I thought this was normal and never thought much of it. But in March of 2008 my life came to a hault.
I would wake up every morning with slight little pains in my stomach that went away after I ate breakfast. After a couple of weeks I started to notice a little blood on the toilet paper. So I made an appointment with my GP and after she examined me and stuck her finger up my butt to check for blood, which she found, she wanted to refer me to a GI to get scoped. Being the stuborn guy I am I said cant we just wait a week I am sure this will go away? She said it was my decision but urged me to go, I didn't. But in the first week in April the pain and blood and diarrhea was unbearable, I was in the bathroom 15-20 times a day. My wife finally foreced me to the ER (which Im glad she did).
Hospital stay #1 April 2008
I get to the ER and the triage nurse examines me and asked me what my pain was at on a scale from 1-10. Having never been in an ER before I said it was a 4, big mistake. Three hours later I finally get called back and by this time the pain had really escallated. They hooked me up to an IV for fluid and made me drink the stuff before the CT scan. After the CT scan I was in severe pain and the ER doc said I could possibly have colitis. My wife asked if there was anything they could do about the pain. The doc wrote for dilaudid and the nurse put it in my IV. WOW, the pain was gone and I melted into the bed! They admited me for 6 days and while there I got a colonoscopy and was diagnosed with Crohn's. They kept me on a liquid diet and constant pain meds and antibiotics and prednisone. The GI doc that did the colonoscopy sent be home on 40mg of pred and some vicodin.
Hoping that I would just get better if I kept taking this prednisone and life would return to normal (I wish). I continued to go down hill. My weight went from a healthy 185 to 155. I was in constant pain, so in the first week of May I went back to the hospital with the same problems.
Hospital stay #2 May 2008
In the ER it was the same routine CT scan, Dilaudid, Melt into bed, admit to hospital this time for seven days. While there they did an MRI, X-rays, people from the lab came to draw blood which seemed like every 5 minutes. They also started me on Remicade. So now I am on Remicade and pred. After they finally let me go home I was weak and tired but continued to take my pred and get the Remicade infusions. I went right back to work (big mistake).
Over the next couple of months I continued to have problems diarrhea, blood, weight loss. I went for blood tests constantly. I was sick every day. I called my GI every other day but he seemed to not care or he was tired of me. Finally after I complaned enough they made an apointment for an outpatient colonocopy to see what was going on down there. At the hospital I waited with my wife for the doc to come and get me for the scope. After the scope I was still going in and out from the drugs but he said that remicade is failing and I need to be admited to the hospital so he could keep an eye on me.
Hospital stay #3 July 2008
This time for 11 days. Same routine pred, flagyl, cipro... but this time they put a Picc line in my right arm and gave me TPN because I was down to 124 pounds. I was hooked up to TPN for 12 hours every day I was there and I could feel that I had a little energy even though I could barly walk ten feet to the bathroom. WHen they let me go home I was so weak, I could do nothing but lay on the couch. They sent me home on 100mg of pred a day!! and would taper 10mg per week. This wasn't pred in pill form it was IV pred which I injected twice a day through my picc line.
A TPN nurse came to my house to show me how to administer the TPN which I do every night for 12 hours. The nurse also comes to my house once a week to change the dressing over my picc and draw blood.
January 2009
I am currently at 155 pounds and feeling better.
I am still on TPN and I take Humira weekly. Down to 20mgs pred
The bad news is I have to get off pred quickly because I have osteopenia in my spine and other problems from being on pred at high doses for long term. So we will see if the Humira is actually doing anything for me. If I taper to zero pred and I flare I will be forced with a hard desicion.
Tysabri or Surgry???
Tysabri has very bad side effects like liver failure and PML(brain Infection) and sugury is not a cure and I would have a ileostomy for the rest of my life. My new GI who is great is tapering my pred 5mg per week so I will know if I can survive on humira and watching my diet soon.
Well I could go on and on but this is my story in a nut shell, let me know if ou have any questions and I look forward to being a part of this great forum.
Lee
