My 15-Year UC Journey: Switching to New Meds

I have had UC for 15 years now!! Seems crazy to think back at everything that I’ve gone through with it in that time🥴🤩 It kept me from a lot of normalcy and time with my kids and embarrassing moments🫣

Looking back: 15 years of ups and downs

But I kept and keep trying not to let it win over my mind, I have tried so many meds to help it and some things worked for a while to keep me out of the bathroom or at least not in pain, finally a few years ago I went into remission and I realized one day I was on a walk with my son and I panicked, we were way out in the woods and I did didn’t even think about a bathroom or anything!! My son said "Ma, calm down, you’ve been doing good, don’t jinx it!" So we made it back to the car, and I was overwhelmed with emotions because he and I had not spent time like that in years!!!

The cost of remission: When med prices spiked

That continued for a while, just living a fairly normal body and mental life, finally (was on Lialda, I believe), but it got extremely expensive, like 90.00 every 3 months to 600.00 a month!!! So I was forced to switch back to Sulfasalizine, and I thought I was doing fine, but NOPE, stress, med changes, and life hurried me, and I was a prisoner of the porcelain throne again, this time, no pain, which I was thankful for!!

Back to the "porcelain throne": managing flares and food

I went back to not eating certain things, I mean I still haven’t attempted any leafy green in 12 years at least and I avoid most caffeine anything( I was eating dark chocolate in small bits) but now I stay clear of it and nothings was working so my GI doctor found me a way to get back on Lialda but the damage was done and that wasn’t cutting it anymore!!

The next chapter: starting biologics

I had another (my 6th) colonoscopy, and it showed all my inflammation from my anus basically to about a foot or so up!! She said that oral meds were reaching that far for the most past sooo she got me mesalamine suppositories 🫣 I was hesitant, but it actually has helped a lot!! My doctor said I should try biologics (Entivio), and I told her I was nervous to inject something and what the side effects would be. She calmed me down and still recommended I give it a try. We did talk about organic homeopathic routes, but she was confident I’d get back to remission with them. So I’m starting Entivio very soon and would love to hear your stories so I can better navigate this next step!! Good or bad, everyone reacts differently. I want to know what to look for or be aware of, and possibly look forward to!! Thanks, y’all have a great day, and I pray for y'all to find what works for you!!!