- Joined
- Oct 30, 2014
- Messages
- 16
Hi everyone,
My name is Al, I am 42 and I just found your forum. I am here because, like most of you, I have Crohn's and it's hell sometimes. Here's my story:
After two hospitalizations, I was diagnosed with Crohn's Disease when I was 37, five years ago. The hospitalizations, for Crohn's and subsequently C-Diff, were about eight. Every hospitalization took a week from work, most of my sick and vacation time, and my savings from out-of-pocket expenses which I have to pay alongside my insurance, plus my prescriptions. I work for the federal government and I have pretty good insurance I'm very grateful for that. I was Pentasa...eight pills a day...ugh.
I was getting used to annual rush to the hospital with a bucket between my legs vomiting all the way there.
I was even writing papers for grad school in the hospital.
Anyway, after my last flare-up I thought I was dong great and was in remission for a couple of years. I was only in the hospital once in 2013, and that was for C-Diff. Life was good. Then on this past Labor Day...BAM!
I was again driven back to the ER sick and in severe pain. The doctors did another CAT, and an MRI and know my ileum was inflammed again but they wanted to put me on steroids again and try to open it up. This time it wasnt budging. I had to go in for surgery.
The surgeon removed about 25 cm of my large and small intestine. I was in the hospital for about three weeks :yfrown:. During that time, I wasnt passing stool because of all the pain meds. They had to put a tube up my nose and pump my stomach to stop the vomiting and made me walk every day. I'm a pretty tough guy but all I did was cry from the pain, the fear, the unknown.
I lost 20 lbs in the hospital and a month off work.
When I came home I was on an injection for blood thinner and a probiotic for a month.
My mentality and emotions got better, and I went back to work and life has been good, but post-surgery I still have some pain but I think its the healing. It hurts as it passes through. Ill be meeting with my surgeon on Tuesday.
Today I had an appointment with my GI. He told me because of my many times in the hospital he wants a colonoscopy ASAP.
He said I run the risk of a relapse in spite of the surgery based on my history, and wants to see what's going on in my colon and see if there is any inflammation. If there is, I go on Humira. If not, Im not sure.
This is my biggest fear, guys: I am terrified that I will have more surgeries and lose all my digestive tract: the intestines, the colon, the rectum....and have a ileostomy bag connected to me for life. Am I jumping very far ahead here?
My surgeon is very confident, and said that most of his patients do really great after the surgery. Still, Im scared to eat salads, nuts, drink caffiene or alcohol...
Im athletic, and run, swim, and lift weights I generally avoid junk food. Im on light duty from the surgery. I used to think that a relapse would not happen to me because I tried to be so careful. yet here I am, with a portion of my intestines gone because of a stricture.
I think what I need most of all are some people just to talk to. People without this disease don't understand the embarrassment, or the desire to get a hotel room when visiting relatives when visiting family for a private bathroom, or having to avoid dinner at times. Also, the emotional toll that this disease takes.
Maybe Ill be ok for awhile since I had the surgery. I don't know at this point so I try to live a day at a time. The real comfort I have is that I am not alone.
I will be catching up on posts, and learning a lot while Im here, and asking a lot of questions. Thank you all for reading this. Together we all make it. :thumleft:
-Al
My name is Al, I am 42 and I just found your forum. I am here because, like most of you, I have Crohn's and it's hell sometimes. Here's my story:
After two hospitalizations, I was diagnosed with Crohn's Disease when I was 37, five years ago. The hospitalizations, for Crohn's and subsequently C-Diff, were about eight. Every hospitalization took a week from work, most of my sick and vacation time, and my savings from out-of-pocket expenses which I have to pay alongside my insurance, plus my prescriptions. I work for the federal government and I have pretty good insurance I'm very grateful for that. I was Pentasa...eight pills a day...ugh.
I was getting used to annual rush to the hospital with a bucket between my legs vomiting all the way there.
I was even writing papers for grad school in the hospital.
Anyway, after my last flare-up I thought I was dong great and was in remission for a couple of years. I was only in the hospital once in 2013, and that was for C-Diff. Life was good. Then on this past Labor Day...BAM!
I was again driven back to the ER sick and in severe pain. The doctors did another CAT, and an MRI and know my ileum was inflammed again but they wanted to put me on steroids again and try to open it up. This time it wasnt budging. I had to go in for surgery.
The surgeon removed about 25 cm of my large and small intestine. I was in the hospital for about three weeks :yfrown:. During that time, I wasnt passing stool because of all the pain meds. They had to put a tube up my nose and pump my stomach to stop the vomiting and made me walk every day. I'm a pretty tough guy but all I did was cry from the pain, the fear, the unknown.
I lost 20 lbs in the hospital and a month off work.
When I came home I was on an injection for blood thinner and a probiotic for a month.
My mentality and emotions got better, and I went back to work and life has been good, but post-surgery I still have some pain but I think its the healing. It hurts as it passes through. Ill be meeting with my surgeon on Tuesday.
Today I had an appointment with my GI. He told me because of my many times in the hospital he wants a colonoscopy ASAP.
He said I run the risk of a relapse in spite of the surgery based on my history, and wants to see what's going on in my colon and see if there is any inflammation. If there is, I go on Humira. If not, Im not sure.
This is my biggest fear, guys: I am terrified that I will have more surgeries and lose all my digestive tract: the intestines, the colon, the rectum....and have a ileostomy bag connected to me for life. Am I jumping very far ahead here?
My surgeon is very confident, and said that most of his patients do really great after the surgery. Still, Im scared to eat salads, nuts, drink caffiene or alcohol...
Im athletic, and run, swim, and lift weights I generally avoid junk food. Im on light duty from the surgery. I used to think that a relapse would not happen to me because I tried to be so careful. yet here I am, with a portion of my intestines gone because of a stricture.
I think what I need most of all are some people just to talk to. People without this disease don't understand the embarrassment, or the desire to get a hotel room when visiting relatives when visiting family for a private bathroom, or having to avoid dinner at times. Also, the emotional toll that this disease takes.
Maybe Ill be ok for awhile since I had the surgery. I don't know at this point so I try to live a day at a time. The real comfort I have is that I am not alone.
I will be catching up on posts, and learning a lot while Im here, and asking a lot of questions. Thank you all for reading this. Together we all make it. :thumleft:
-Al
