No, not of a lovely lady, but of a guy named Jesse!
So here is the story. I first started getting sick when I was 22. I started to lose weight and had abdominal pain. I thought it was ulcers. So I went to see my PCP, who sadly wasnt available and I saw the nurse practicioner. He agreed with me. Gave me some ulcer meds and said to come back in 2 weeks. After 2 weeks and 20 more pounds lost, the same NP said to keep taking the same med and try back again in 2 weeks.
I was a bit fed up and wanted MY doc. I insisted in seeing him, especially since I had lost over 50 pounds. (now I was a bit overweight, around 230 pounds before the weight loss, so I wasn't totally unhappy!)
My doc agreed something was wrong and scheduled a coloscopy. He went in and BAM there it was. Right at the juncture of the small and large intestine. Now 13 years ago, I had never heard of Crohn's disease at that time. There were no TV commercials for it and it wasnt something that was very widely talked about. Even today its still not as well known as some diseases but it was even worse back then. (Do I sound old yet? In my day....)
I saw my GI doc and a surgeon and they both agreed, they could maybe hold back the disease with drug therapies for a month or two, but surgery would be needed. (no Remicade, Humira, or Imuran back then). I opted to get the surgery and by the time I left the hospital I was 14 inches of bowel shorter and over 100 pounds lighter. I took Prednisone and Asacol for a month or so post surgery and then....
13 years of remission!!! No drugs, the occasional issue here and there that all Crohn's patients deal with. I had 2 bouts with Gout (I had no idea how painful that was, and I thought Gout was for old folks, think Ben Franklin old).
Suddenly about 3 months ago I started feeling off. Went to my PCP, who said to go see my GI, who scheduled a colonoscopy. Didn't make it to that appointment. ER here I come! I had a blockage, and spent 5 days getting pumped full of steroids and morphine. After a lovely colonoscopy and a small bowel series (anyone else love the vanilla flavored barium?), they agreed, it was back and decided to go the drug route. Prednisone, prednisone, and more prednisone. Then Entocort with a side of Prednisone. Pain meds (Oxycodone) and nausea meds (cant remember the name) as needed. I had a short revisit to the ER due to blood in places that blood shouldnt be (if you get my drift). The GI doc decided it was time to get agressive. My Crohn's was combined with something called C-Diff (a really nasty stomach bacteria that shouldnt be there). More drugs (anitbiotics). I just had tons of tests to check to see what levels I will be placed on for the next new and exciting set of drugs, Humira and 6MP.
Now I will admit, and its evident from most of the posts in this forum, Humira and 6MP both scare the bejesus out of me. My feeling, the side effects of those cant be as bad as the long term side effects of the steroids. I have the worst steroid acne, night sweats, weight gain, and anger issues on that stuff. Cant wait to be done with them. I am one of the fortunate with really awesome insurance so the costs associated with these new drugs wont be a financial strain like they are for many folks.
Bottom line, I want what I had for the last 13 years. To be pain free (for the most part). I have a 16 year old daughter, a 14 year old son and a wife who need me back at full capacity. I need me back at full capacity. Any advice, comments, thoughts, ideas, ect? Leave em here!
Thanks to all for reading and chat again soon!
Jesse
So here is the story. I first started getting sick when I was 22. I started to lose weight and had abdominal pain. I thought it was ulcers. So I went to see my PCP, who sadly wasnt available and I saw the nurse practicioner. He agreed with me. Gave me some ulcer meds and said to come back in 2 weeks. After 2 weeks and 20 more pounds lost, the same NP said to keep taking the same med and try back again in 2 weeks.
I was a bit fed up and wanted MY doc. I insisted in seeing him, especially since I had lost over 50 pounds. (now I was a bit overweight, around 230 pounds before the weight loss, so I wasn't totally unhappy!)
My doc agreed something was wrong and scheduled a coloscopy. He went in and BAM there it was. Right at the juncture of the small and large intestine. Now 13 years ago, I had never heard of Crohn's disease at that time. There were no TV commercials for it and it wasnt something that was very widely talked about. Even today its still not as well known as some diseases but it was even worse back then. (Do I sound old yet? In my day....)
I saw my GI doc and a surgeon and they both agreed, they could maybe hold back the disease with drug therapies for a month or two, but surgery would be needed. (no Remicade, Humira, or Imuran back then). I opted to get the surgery and by the time I left the hospital I was 14 inches of bowel shorter and over 100 pounds lighter. I took Prednisone and Asacol for a month or so post surgery and then....
13 years of remission!!! No drugs, the occasional issue here and there that all Crohn's patients deal with. I had 2 bouts with Gout (I had no idea how painful that was, and I thought Gout was for old folks, think Ben Franklin old).
Suddenly about 3 months ago I started feeling off. Went to my PCP, who said to go see my GI, who scheduled a colonoscopy. Didn't make it to that appointment. ER here I come! I had a blockage, and spent 5 days getting pumped full of steroids and morphine. After a lovely colonoscopy and a small bowel series (anyone else love the vanilla flavored barium?), they agreed, it was back and decided to go the drug route. Prednisone, prednisone, and more prednisone. Then Entocort with a side of Prednisone. Pain meds (Oxycodone) and nausea meds (cant remember the name) as needed. I had a short revisit to the ER due to blood in places that blood shouldnt be (if you get my drift). The GI doc decided it was time to get agressive. My Crohn's was combined with something called C-Diff (a really nasty stomach bacteria that shouldnt be there). More drugs (anitbiotics). I just had tons of tests to check to see what levels I will be placed on for the next new and exciting set of drugs, Humira and 6MP.
Now I will admit, and its evident from most of the posts in this forum, Humira and 6MP both scare the bejesus out of me. My feeling, the side effects of those cant be as bad as the long term side effects of the steroids. I have the worst steroid acne, night sweats, weight gain, and anger issues on that stuff. Cant wait to be done with them. I am one of the fortunate with really awesome insurance so the costs associated with these new drugs wont be a financial strain like they are for many folks.
Bottom line, I want what I had for the last 13 years. To be pain free (for the most part). I have a 16 year old daughter, a 14 year old son and a wife who need me back at full capacity. I need me back at full capacity. Any advice, comments, thoughts, ideas, ect? Leave em here!
Thanks to all for reading and chat again soon!
Jesse