I was diagnosed with crohns 10 years ago in January. I had been on remicade and 6mp since Nov. 1998. That kept me in remission and I felt like a normal human being rather then a sick person. Six months ago I stopped the 6mp to try to get pregnant. Once I went off of the 6mp I discovered that remicade wasn't working the way that it used to. Unfortunately for me I was already on the highest dose of remicade and the doctor would not put me back on the 6mp due to the risk of lymphoma. The doctor wanted me to start thinking about going off of remicade and trying humira. I never got the chance to try it. Last week I ended up in the hospital with an abscess in my small intestine (diagnosed with a CT scan). They couldn't drain the abscess because of it's location (they would have to go through too much bowel to get to it). So I was given a choice of surgery or going home on antibiotics. However, going home on antibiotics wasn't really a good choice given that I wouldn't be able to have my much needed remicade infusion nor would I be able to go on pred or anything else to get the disease under control. The doctors were really pushing surgery as they were sure I would be back in a month needing surgery anyway. So I decided to do surgery. The abscess as well as diseased tissue was right where my colon and small intestine connect. They wound up removing about 4 inches in that area connecting my small intestine back higher up on my colon. I don't need a bag. Right now I'm a week out of surgery so I won't know how my crohns is acting until I heal from surgery. Right now it seems like every bowel movement I have is diarrhea and is black and tarry. The diarrhea is not so concerning as I know my intestines are healing, but the color is concerning me. I called the surgeons office and they said that some black and tarry stools are normal, but not every single one. My post surgery follow up appointment isn't until Thursday so I don't know if I should be concerned before then. I feel okay...if but a bit weak, which I assume is normal.
After I'm healed from surgery my GI wants to do a large and small bowel study to see if there is anymore diseased tissue in me. The surgeon didn't see any, but my GI wants to make sure. I've been wanting to get pregnant, so if there is no diseased tissue I will go off all meds to try to get pregnant. If he finds diseased tissue though then I will have to go on something for maintenence and we are hoping some small and safe for pregnancy will work.
What I could use right now is a bit of comfort. Is what I'm going through with the diarrhea and black stools normal? How did everyone else do after surgery? Did surgery put you in remission and if so how long did you stay in remission?
I am so scared. I never, ever wanted surgery...and now here I am with staples in my abdomen. I don't know what anything is going to be like from now on. At least before I knew what I could do and couldn't do. How will I know what I can eat or what I can do now?
Did I make the right decision? I mean, I must have since my doctors weren't giving me much choice. But sometimes I wish I wasn't given a choice you know.