I have been a crohn's patient since my early thirties. Started out with what I thoght was a little IBS. I am a nurse and husband had recently been laid off from his job so I picked up a side job. I thought the stress was the problem. Then I developed what I thought was the hemorrhoid from HELL. I was having multiple loose stools daily and broke out in a sweat with each one from the pain. when I couldn't take it anymore, I went to see a doc. He told me I had the worst anal fissure he had ever seen. That is how it started. I ended up with a perianal fistula before treatment for crohn's was started. I was put and asacol because the crohn's emcompassed my entire colon and perianal area but luckily not my ileum or small intestine. I was also started on the regular regimen of steroids, flagyl, cipro and remicade. I did wll with the remicade and weaned off the other meds except asacol but because my disease was considered moderate to severe the asacol remained at a treatment dose rather than maintenance therapy. Remicade worked for a couple of years but then all of a sudden I had a major bleed and had to go back on steroids IV and TPN and Lipids but only for a few weeks. I couldn't however wean off the steroids. Everytime I tried I would end up with fever, pain, diarrhea. So I was sent for surgical consult.
It was thought best that I have my entire colon removed. I wasn't ready for that so I asked for a 3rd opinion. My new doc was of the opinion that surgery was deffinanty an option but he was willing to try methotrexate injections as well as adding fish oil and sulfasalasine to my regimen. I had alot of joint involvement also. with the methotrexate, I was able to finnaly wean the steroids off. I have been steroid free for 4-5 years and now I am having a new flare. I have started back on the steroids and I am a little scared. They are wonderful for the swollen painful joints. Oh and this time I have a new symptom, erythema nodosum. This Crohn's is no joke. So now I take 1600mg of Asacol 3 times daily, Sulfasalasine 1000mg twice daily, fish oil 1000mg 3 times daily, cipro 500mg twice daily, methotrexate 10mg weekly, prednisone 40mg daily, folic acid, calcium, vit d, multivitimin. I know I am whining and please forgive me. I try to be thankful. I know there are so many of you with fistulas and multiple surgeries and right now I am free of both. So know that my prayers are with all of you.
On a personal side, I am blessed to have a supportive husband of 22 years and 2 wonderful girls, 17 and 13. I work full time as a nurse on a medical renal floor. This is my first time participating in anything like this and it actually feels good to get it all out. I hope I can offer some help and insight to some of you.
It was thought best that I have my entire colon removed. I wasn't ready for that so I asked for a 3rd opinion. My new doc was of the opinion that surgery was deffinanty an option but he was willing to try methotrexate injections as well as adding fish oil and sulfasalasine to my regimen. I had alot of joint involvement also. with the methotrexate, I was able to finnaly wean the steroids off. I have been steroid free for 4-5 years and now I am having a new flare. I have started back on the steroids and I am a little scared. They are wonderful for the swollen painful joints. Oh and this time I have a new symptom, erythema nodosum. This Crohn's is no joke. So now I take 1600mg of Asacol 3 times daily, Sulfasalasine 1000mg twice daily, fish oil 1000mg 3 times daily, cipro 500mg twice daily, methotrexate 10mg weekly, prednisone 40mg daily, folic acid, calcium, vit d, multivitimin. I know I am whining and please forgive me. I try to be thankful. I know there are so many of you with fistulas and multiple surgeries and right now I am free of both. So know that my prayers are with all of you.
On a personal side, I am blessed to have a supportive husband of 22 years and 2 wonderful girls, 17 and 13. I work full time as a nurse on a medical renal floor. This is my first time participating in anything like this and it actually feels good to get it all out. I hope I can offer some help and insight to some of you.
I'm glad you joined but am sorry to hear you're in a new flare 
