I am hoping we can help each other. I have excruciating hip and joint pain. It’s so bad sometimes it completely wipes me out and keeps me from doing my regular activities. I had a colonoscopy a year ago and they said I had proctitis. The terrible Dr I was going to treated me a few months as having UC. I HAVE BEEN THROUGH HELL AND LIVING IN IT RIGHT NOW! I have been bleeding everyday very heavily since May 2018. I have had 1 iron infusion treatment and 2 injectafur treatments because my hemaglobin dropped so low. REPEATED colonoscopy and endoscopy 6 weeks ago. NEW DR said my case is severe- ya think? PATHOLOGY looks like CROHNS. I’ve never had diarrhea, just severe constipation. I don’t fit in their ‘Crohn’s diagnosis box.’ I’ve been on Canasa, Steroids, nothing touches it. New Dr wants me to go on combination therapy with Biologics. One of these drugs is illegal to give past 6 mo to 1yr in UK because of the dangers of non-Hodgkins Lymphoma. Melanoma runs in my family. I’m terrified to take these drugs. New Dr spent almost 2 hrs with me explaining the risks associated with them. He said if I don’t do something I am going to get colon cancer. If I do start these drugs I can get cancer. I have kids and this is about killing me emotionally. Out of sheer desperation I started a water fast today. Praying God will help me out. It feels like a quiet hell I live because it’s not something you share with people. I’ve hit a new low. I think when you loose this much blood it plays mind games with you. I just want to feel like the Mom I have always been. Seems like a distant dream.
Hi Grace,
Just curious - what symptoms do you have altogether?
I am having a Colonoscopy and Endoscopy soon to test for Crohns. Am currently in the middle of a flare up - really don’t want to hear them say it’s just a severe case of IBS!!!
Any info would be fab, thank you!
x
Hi Fatima,
I have been dealing with lower back, pelvic and hip pain for several years. I finally got an MRI and it showed inflammation which led to labs that revealed ankylosing spondylitis. I’m about to start Humira. From what I’ve been reading Crohn’s and UC are commonly diagnosed in people with AS as well. I’ve been taking a PPI for GERD, I have terrible stomach pain after eating certain foods like popcorn, fruit, raw veggies. I am frequently constipated. Because I don’t have diarrhea I did not think of Crohns. I’m grateful to have come across this post. Maybe you should ask your doctor about AS given your back and hip pain. SI joint pain is an indicator. Good luck!