Hello-
I am new to this forum and I need to vent!!!
I was hospitalized again last week due to 20-30 bloody bowel movements a day and severe pain. (The last 3 Humira injections did nothing.) I had been flaring for over a month, trying to "ride it out".
The CT showed that I have thickening in all of large bowel and inflammation has spread throughout my abdominal cavity. Since insurance stopped me from seeing a Crohn's specialist, I waited in the ER for 5 hours for a GI doc to see me.
Enter a spunky, lively, young GI doc. She immediately took my hand and said, "We are going to get you out of pain." We will scope you tomorrow, start you on steriod and antibiotics and we will change you to Cimzia. I promise not to make you suffer so if in a week you do not fell better we will take out your colon. It will not cure you, but you will be out of pain." She proceeded to tell me that she had UC and had her colon out and she is soooo happy. I had found my guardian angel!!!!
The next day she scoped me and then didn't come to debrief with me. The nurse said I was bleeding from one end to the other. 2 days later she came into my hospital room and said I was worse than she thought but we would move forward and get the surgery consult and change meds. That day I went home still in pain and flaring.
Two days later I went for a follow up and she would not make eye contact. I thought that was strange. She proceeded to tell me that every portion of my GI tract was involved and severe. I told her that I was still in pain and having 20-30 movements a day. She said she hopes the Cimzia works I asked if she thought it would. She said hopefully it will until they invent another medication for Crohn's. You have broken through Remicade and Humira so there is nothing left to give you.
I went home thinking...another GI just gave up on me. I also remembered that I did not get the surgery consult. I called her office and the secretary would not allow me to talk to her. When I asked for the consult the secretary handed the phone to the doc. She said, "No, we are going to wait for awhile...I will see you in two weeks."
Now, I would not mind so much except for the fact that she led me to believe I was going to get relief. She gave me hope!!!!!!
Why did she give me hope and then take it away? I am so done with the pain. I can not bare to think of another 20 years with this disease. I just don't know if I can keep doing this.
Is anyone else going through this...has anyone been given hope and then had it taken away from you? How do you keep on going? How do you not want to just throw in the towel and say, "Let nature take it's course!"?
Still riding it out,
LT:depressed:.
I am new to this forum and I need to vent!!!
I was hospitalized again last week due to 20-30 bloody bowel movements a day and severe pain. (The last 3 Humira injections did nothing.) I had been flaring for over a month, trying to "ride it out".
The CT showed that I have thickening in all of large bowel and inflammation has spread throughout my abdominal cavity. Since insurance stopped me from seeing a Crohn's specialist, I waited in the ER for 5 hours for a GI doc to see me.
Enter a spunky, lively, young GI doc. She immediately took my hand and said, "We are going to get you out of pain." We will scope you tomorrow, start you on steriod and antibiotics and we will change you to Cimzia. I promise not to make you suffer so if in a week you do not fell better we will take out your colon. It will not cure you, but you will be out of pain." She proceeded to tell me that she had UC and had her colon out and she is soooo happy. I had found my guardian angel!!!!
The next day she scoped me and then didn't come to debrief with me. The nurse said I was bleeding from one end to the other. 2 days later she came into my hospital room and said I was worse than she thought but we would move forward and get the surgery consult and change meds. That day I went home still in pain and flaring.
Two days later I went for a follow up and she would not make eye contact. I thought that was strange. She proceeded to tell me that every portion of my GI tract was involved and severe. I told her that I was still in pain and having 20-30 movements a day. She said she hopes the Cimzia works I asked if she thought it would. She said hopefully it will until they invent another medication for Crohn's. You have broken through Remicade and Humira so there is nothing left to give you.
I went home thinking...another GI just gave up on me. I also remembered that I did not get the surgery consult. I called her office and the secretary would not allow me to talk to her. When I asked for the consult the secretary handed the phone to the doc. She said, "No, we are going to wait for awhile...I will see you in two weeks."
Now, I would not mind so much except for the fact that she led me to believe I was going to get relief. She gave me hope!!!!!!
Why did she give me hope and then take it away? I am so done with the pain. I can not bare to think of another 20 years with this disease. I just don't know if I can keep doing this.
Is anyone else going through this...has anyone been given hope and then had it taken away from you? How do you keep on going? How do you not want to just throw in the towel and say, "Let nature take it's course!"?
Still riding it out,
LT:depressed:.
