It has been 10 weeks since my first Entyvio infusion, and today I get a third. Limited research suggests that patients begin to see positive results around Week 10. But, those positive results are more common for patients with Ulcerative Colitis – not Crohn’s. With Crohn’s, outcomes are a little more spotty.
At the time I left work on March 31, my condition was so severe that I was home-bound on many days. When I was working I refused to see the connection between the stress of the job and my symptoms, but boy howdy, do I get it now. About 30 days after leaving the job, my symptoms decreased. Not the “Jump for joy, I’m HEALED at the tent revival!” sort of decreased, but better.
That’s where I am currently. Not 15 loo visits per day, but still in the range of five or more.
Things were so bad before, I am THRILLED with my new number. But, I don’t think Entyvio had anything to do with it. It was too soon to see those types of results.
Let’s see if Entyvio can knock this out of the park. If not, I’m told it’s clinical trials at the U of W for me. I don’t even want to THINK about what that could mean for my plan and my road trip. If Entyvio works, I need an infusion every 8 weeks, and I can get those on the road. If it’s clinical trials, I’m tied to Seattle, at least for a while longer.
Even if Entyvio puts me into remission, I worry what the future will hold. At least four drugs worked for me initially, then failed. Remission is just that; it is not a cure. I have a chronic disease for which there is no cure. I could enter remission, hit the road, and have an active flare, pulling me back to Seattle for care and treatment.
Stop futurizing, Tammy. Take it one day at a time.
This Post Has 5 Comments
Found your site via Retro Renovation, love your sticks and bricks home, loved you bought a Newmar! We am on the road to Newmar happiness too but only with a Bay Star because we want something under 30 feet.
Any who.. just read this post and I give you credit for honesty and sharing a delicate subject. I don’t have Crohn’s but working in health care i understand the severity of having it.
And yes, chickie dear, stress plays havoc on our bodies in so many ways.
I am hoping the drug works but I am selfish. I want to follow your adventures and live my dream in your shoes. Or boots. Or flip flops. Whatever you are wearing that day!
Keep the dream real and let’s go find some adventure. Together. Through this blog.
Safe travels and even more happy travels.
Crystal, what a great message – I really appreciate your warm wishes and good thoughts!
Hi Tammy,
I found you through retrorenovation and loved your home! You did such a great job!
My husband and I love to go rving, and have owned a few. We just 2 weeks ago, got our latest Pace Arrow with a slide-out and I’m excited to “put my mark” on it. I would have loved a cute vintage trailer, but my husband does not share my passion….:( But the real reason I felt compelled to write to you, was actually to do with your “constant companion”. We too, have the same unwelcomed guest! My husband was diagnosed with UC (sounds like u hv Crohn’s) in 1998. He was on Prednisone, sulfasalizine, Remicade, and currently-Humira. So we can relate! He had his colon removed in 2006 and after 3 months of healing, the “take-down” to reconnect with a Jpouch to use as a colon. He was pretty good until a month ago, when after he had 2 rounds of antibiotics, he developed “pouchitis” which is basically the same as UC, but in the pouch! So-long story short, I have been doing EXTENSIVE research to help cure him (I was a bio major) and have learned a lot of valuable info that could help you if you would like to benefit from any of it. If not, that’s cool too! I have watched him suffer and wouldn’t wish it on anyone!
Take care-
Dawn
Dawn, thank you so much for saying hello! Did you know you can be a member of Sisters On The Fly even if you don’t have a vintage trailer? Maybe you can get your glamping fix with them in the Pace Arrow (no children, husbands or dogs allowed at official Sisters events) and do regular camping with your DH the rest of the time!
Hearing your husband’s story makes me so thankful that my condition has not yet ever resulted in hospitalization or surgery. I do count my blessings every day. I am never one to turn down useful information, so please private message me if there’s anything you would like to share about your research and journey. I’m open to all suggestions!
Hi Tammy,
I am excited for you and your new adventure. Good thoughts to you and your fight with Crohn’s. I am looking forward to following you through North America.