Posted 1/31/2014 2:50 AM (GMT 0)
Hi all,
It's been a while since I've posted thankfully because I was feeling better. Unfortunately, now, I've hit the worst I've ever been, which may not be so bad in comparison to some of you, but I'm really scared.
It's been a confusing ride this far. In march 2013, after noticing gradually increased diarrhea n trips to the bathroom, I went to see a gi doctor. At first he and my boyfriend were convinced that it was irritable bowel and simply caused by some stress. He put me on bentyl to "slow down my immune system". When it didn't help, I prodded for more tests and found out I was lactose intolerant and had a colonoscopy. The colonoscopy showed 6 ulcers throughout my colon and after biopsies, I got a crohns dx. I was scared. I also did a small bowel series which didn't show anything abnormal. He started me on a low dose asacol, which was okay for a few days, but by a week later, made me so much worse. I dropped 15 lbs and made about 50 trips to the bathroom with diarrhea a day. I couldn't walk from swelled up, rashed up ankles and joint pain. I kept calling my doctor who told me to wait it out. When I couldn't take it anymore and was crying on the phone to him, he told me to increase the dose. That was the end of him. Luckily, another doctor I had been trying to get an appointment with had a cancellation the next day. She immediately told me to stop the asacol, and see what happens. After reviewing my imaging and reports from the colonoscopy, she wasn't even sure that it was crohns. When I continued to feel better after stopping the asacol, she concluded that it couldn't have been crohns and I never had to see her again.
In July, it came back full swing. This time I had more extra intestinal manifestations such as 10 canker sores, anal fissure, and of course the joint pain. I had moved, saw a new gi and got help. He treated me with flagyl 3x/day n entocort 9mg/day and Tylenol for the pain. I had to get iron infusions as I had developed anemia. I felt better pretty quick and was excited. about six weeks in, we stopped the flagyl and decreased the entocort to 6 mg/day. I felt so good and was so happy. I thought we were beating it.
Over the holidays, I started to feel bad again. At a follow up, doc ran labs and found elevated markers but my symptoms weren't horrible. He told me to wait it out. I waited and got worse. One day after work, I had to run to the bathroom, and when I got out I was doubled over in pain. I had thrown up bile early that morning but didn't think anything of it as I felt fine. I then couldn't move from then, and narrowly avoided a trip to the ER. I had a 101.4 fever and was nervous I had a blockage. The next day, I threw up everything I ate in the last 24 hours and more bile. I freaked out! Doctor said to watch it closely, but fever went down. Ma few days later I wasn't better and couldn't get up. My joint pain was back, I had horrific abdominal pain, and all the same symptoms as before, but intensified. He started me on flagyl again as it worked last time and ordered an MRI. MRI showed inflammation from tip of rectum throughout and consuming every bit of my colon. After seeing its presentation, he thinks it could be ulcerative colitis. AH THE FRUSTRATION. Flagyl seems to help reduce bms and abdominal pain went away, but the canker sores, joint pain, and painful swallow continue. It hurts so bad to eat at so many levels. The first because I have canker sores on my tonsils and that lovely flagyl hairy tongue. As I swallow, anything btw including water, I have intense pain all along my throat and esophagus and then a chest pain. A short time after, I feel symptoms of GERD which I never felt before this flare. I don't know what to do. I'm barely eating, I'm very weak and have lost a lot of weight. does anyone have any advice? I can't take it anymore and don't know what's wrong with me and how to feel better! Any help would be greatly appreciated. Thank you so much if you stuck around to read this in its entirety.