Feeling scared and hopeless

Hi all! It’s been a long time since I posted on here. I’ve been doing seemingly fine for years, until the turmoil that started recently. Let me first explain the root of my problem. For the past eight years I’ve been managing my UC with oral and rectal mesalamine, and a hydrocortisone suppository every sixth day. Every time I tried to taper the hydrocortisone, symptoms would return. Two GIs told me not to worry and keep taking it as the systemic impact is supposedly very low. They said it’s better to keep doing it than go on a biologic. Fast forward to last week, I got a bone dexa scan just to reassure myself there wasn’t any bone loss going on because of the steroid. As a result I was diagnosed with osteopenia. I’m shocked and devastated. Now my GI is telling me to start tapering the steroid to come off of it. My last colonoscopy a month ago indicated I don’t have any inflammation. However, I’m still feeling some minor symptoms which seem to be mitigated by the steroid on the day I use it. I’m terrified that when I reduce the suppository I will go into a major relapse. I won’t be able to take any more steroids for it because of the osteopenia, which leaves my options as rescue Remicade and/or emergency surgery. At this stage I don’t mind the surgery. In other bad news, I have a stubborn h pylori in my stomach (no symptoms though) which will prevent me from taking oral medication for osteopenia. I’m sorry for the long post. I’m feeling completely hopeless and don’t see a way out of this situation. My friends and family are scared for me and I hate to be a source of distress for them. I hope my story of a long term rectal steroid use is a cautionary tale for someone who might be considering staying on a rectal steroid for a long time, even sporadically.

Katerina, osteopenia is the precursor to osteoporosis. Osteopenia can be caused by a variety of things. There are many things you can do on your own to keep it from getting worse. Supplementing calcium & vitamin D along with exercise. The Cleveland Clinic has an excellent article about osteopenia, I urge you to go there & read it. You can get an appointment with an endocrinologist, but in the meantime educate yourself about this. Like Old Hat said, it doesn't sound like you were overloaded with steroids.

Untreated h-pyloria is a lot more worrisome than osteopenia. I looked back in your posts & many of us urged you to take the antibiotics the dr recommended.

If you have constant pain on your lower left side, it seems that your gastroenterologist should do a flex-sig exam. Something is definitely wearying you and that makes it harder to care for oneself, including making rational decisions on next steps to take. Most of us UCers have trouble dealing with antibiotics treatment at one time or another-- so you shouldn't feel alone in that respect. Does the pain discourage you from eating? If so, that could be why you're losing weight (in the absence of diarrhea). / Old Hat