Posted 8/4/2013 12:49 AM (GMT 0)
Hi again,
My name is Michelle and I was recently re-diagnosed with crohns-colitis. I began symptoms of IBD (diarrhea up to 10x day) about a year ago, and finally saw a doctor in March '13. The doctor and my boyfriend were convinced it was irritable bowel, and began treating me with bentyl. It did nothing one way or the other. I complained that I was still having symptoms and he performed a colonoscopy. It revealed 6 ulcers, and after the pathology report came back, he said it was Crohn's, but he wasn't too confident in his dx because there were no ulcers in the terminal ileum. He immediately put me on Asacol 400mg (now discontinued) 2/3x day. I was constipated for about a week (which he praised as the diarrhea had stopped, but it was extremely painful), then got dramatically worse. I began the week from hell where I tried to work (as a teacher) through diarrhea 30x a day. I got severe swelling to my right ankle (misdx for tendonitis, smh) to the point where I couldn't walk. I called my doctor to tell him I couldn't take it any more, and he asked me to up the medicine; that was the end of him. Luckily for me, another doctor I had reached out to for a second opinion had a cancellation that Friday. She immediately told me to stop the Asacol and wanted to see what would happen without meds. She also wasn't convinced it was Crohn's, but didn't know what it was. A small bowel series and upper gi were done and there was no involvement. Upon stopping the Asacol, I felt 100% better, my bowel movements were down to 3-4/day and my joint pain/swelling eventually decreased. She continually checked in with me and just said that "it must not have been crohn's." I got a third opinion, who asked me to get the ASCA markers through prometheus done. With those being negative, he also stated that he doesn't know what it was (mentioned Behcets) but that it wasn't Crohn's. I had a great deal of mixed emotions at this point... confused as to what was going on but happy it wasn't Crohn's.
about two and a half months later, I all of a sudden got 5 mouth ulcers, my stomach symptoms came back about 15x/day, I again got 10/10 joint pain and swelling on my ankle (this time both), and an anal ulcer. UGH. So I called the doctor who thought it was Behcets, as I had the mouth involvement. He told me to go see a rheumotologist. I had all of my paperwork faxed over there from all of the doctors I saw, and she was convinced that it WAS Crohn's. She was great. She spent two and a half hours with me and really made sure she understood my case. She invited a dermatologist in to look at my ankles and they did a biopsy of a lesion (which I thought was swelling). She reached out to the leading Behcets specialist in the country as she studied under him and made sure that it wasn't Behcets. Then, she called her GI doc, who started me on Flagyl. This was Monday. On Friday, I saw the GI, who is an IBD specialist and researches non-textbook cases of crohn's (THANK GOD). He was amazing, made me feel extremely comfortable and I made it through the entire appointment without crying! After discussing everything, he decided he wants to continue the Flagyl for 6 weeks, and start me on Entocort. In the midst of all of this, my blood work revealed a vitamin D deficiency, which will be treated by a 50,000 iu dose 1x/week, and the fact that I have an iron-deficient anemia. He stated that my iron levels were so low that he felt I needed an iron infusion. On a side note, I also have hashimoto's (hypothyroid) which is not being treated at the moment because my TSH levels have gotten back to normal and it's not really bothering me right now.
I am just feeling extremely overwhelmed right now. Thankfully, the flagyl seems to be working so far with very little side effects, but I am nervous to start the Entocort. I told him I would think about the iron infusion because I am scared out of my mind about it. I know that many of you are so much worse off than me right now, but the fear of this getting worse and dealing with this for the rest of my life is so scary. Please share your experiences with Entocort and if anyone also has had to go through an iron infusion, please also share!
Thank you!
Michelle