After 3 good years, a new phase…
I really don’t like talking about this stuff. 😉 For a long time I didn’t even want to say the words out loud: Crohn’s Disease. My FB posts will attest to this fact: I think I’ve probably only mentioned my Crohn’s once on my timeline, when I was first diagnosed almost four years ago in September 2010. And I think to some degree, people don’t like talking about this stuff, either. Unless you’re in the medical field, you probably don’t talk regularly about poop and butts and bodily fluids and your colon. I get that.
But it’s important to talk about this stuff, and that’s why I decided to share this post. It’s important to remember that we’re all involved in each other’s journey. It’s important to remember that we’re all dealing with stuff – which is sometimes plainly visible to others, and sometimes not. Knowing those two things fosters so many good things: empathy, compassion, understanding, even patience!
Crohn’s is fascinating to me, like other autoimmune diseases, in that the body’s normal wiring/programming gets out of whack and the immune system starts attacking healthy tissue. Maybe my brain just needs a software upgrade/patch! In the case of Crohn’s, it can happen almost anywhere in the digestive track – from the air intake to the tailpipe, so to speak. In my case, it showed up in the colon, which is fairly typical.
I count myself very fortunate, in that through medication and some diet adjustments, I’ve been able to lead a fairly normal life. I’m not sure others with Crohn’s are so lucky. For me, the initial 6-9 months were a bit rough, but things improved and the last three years have been manageable.
But now, a new phase. For whatever reason, about two months ago I started experiencing new symptoms, popping up in new places. I’ll spare you the gory details, but suffice to say it was definitely not fun. So that prompts a new approach. This diagram (below) sums it up pretty well. For the last 3-4 years I’ve been able to hang out in the orange zone with a corticosteroid (fairly low-dosage). Now I’m moving into the yellow zone. I recently was approved to start taking a long-term medication regime which, if it’s successful, can halt the progress of the disease – aka introduce remission. That sounds pretty good. And I’m really hoping it does work, because the next step is surgery (down there) – and that definitely doesn’t sound fun. So we just take it as it comes. My faith and my family are a great comfort and support.
I am grateful to have been able to still pursue my passions (paddling and music) these last four years; and hope & plan to continue doing so – big plans for this summer and fall! I had a little setback earlier this summer, unfortunately, that primarily affected paddling: it’s kinda hard to be in a boat for long periods of time, and especially tricky when you’re expected to lead / guide / coach. But I’m pleased to say that things are already improving since June, and should allow me to get back on the water more and prepare for some big things in October!
So that’s my journey so far, at least this part of it. There’s plenty of exciting, great things happening too. But I do welcome your thoughts & prayers (sandwiches also accepted) for both Brandi and me; and I offer you mine for you and your journey, whatever the nature. Peace!
Chuck,
Excellent post. Thanks so much for sharing and for the update on the progression of Crohn’s. I share you enthusiasm for the new course of treatment. I can’t wait for the next update and/or posts about you continued paddles.
You have all my support and love. Body (dis)functions don’t freak me out and I am here whenever you or Brandi need me.
Love,
Meridian
Thanks so much, Meridian. Love you!
Hang in there Chuck, it has to be really hard
And glad to hear of the improvement
Thanks for posting Chuck. Silence isn’t golden just convenient. Knowing more helps others to “get it” and know how to help and pray. Blessings on you in the journey, we are never alone.
Chuck . . .
Thanks so much for sharing. I was just thinking about you yesterday and wondering how you were doing. You and Brandi both have been on my heart. I’ve been praying for you, and been inspired by the LIFE your living in the misdt of these LIFE challenges you’re facing. I see Him in you, sustaining you, knowing He is your daily comforter, your daily strength, your daily miracle being manifested in “slow motion.” I’m blessed by you today Chuck… because I know we don’t serve a God who does things half-way, but One finishes what He starts. And He will finish, bring to full completion, the work He has already started in you!!
Blessings friend,
Yancey
Chuck, I no idea you suffered from Crohn’s. I appreciate your candor in this post. A classmate of mine, way back in elementary school in the 1970’s, suffered from Crohn’s. It ultimately lead to him committing sucicide; tragically. I admire your courage and faith.
Thanks David. I’m so sorry to hear about your friend. I can’t imagine trying to deal with this as a youth / young adult. And tragically, that’s more typical — statistically I was “pretty old” to get it in my late 30s.
Chuck,
Thanks for sharing! Now I know in what direction to pray for you:)
W and I will keep you in thoughts and prayers. We know the distraction of pain from chronic illness through Kirsten. Distraction seems a weird word, but you live with the reminder of the body to an extent that other can ignore. May a healing touch and grace enough suffuse you. Pass along my love and prayers to Brandi please.
I had no idea Chuck. Prayers coming your way. Thanks for sharing this. Love and hugs!
Chuck, Thank you for sharing, it is so important to have an outlet and to have a support system.
With 4 definite AI diagnosis and sure that there are more to come, I have been doing A LOT of research on the gut and auto-immune in general. I have quickly learned that Western medical standards isn’t the end of the line (While western medicine is sometimes necessary, it’s not the ONLY thing we should be doing), and I have found great success in seeing an integrative specialist. She sends me out for tests but does all of the decision making and has been LITERALLY the ONLY dr in 12 years of searching for answers who was actually able to figure me out. I would encourage you to do the same, because AI can spiral out of control without proper knowledge of what exactly all your triggers are and being able to eliminate them. You should check out Dr Tom O’Brien and all his pod casts online. Also, Sean Croxton and his website Underground Wellness. SO MUCH INFORMATION! It is a little overwhelming at first but I must stress to you the importance of the new information that is out there, western medicine is about 12 years behind research so you have to become an advocate to your own health. It will hit mainstream medicine eventually, but not before your body’s immune system has done more damage that could have been prevented.
I have my endoscopy/colonoscopy scheduled at the end of the month, but I have found a lot of relief by following an auto-immune protocol diet. If you ever want to hear more about it, I would be more than happy to share what I’ve learned with you and Brandi!
take care, and keep your chin up!
http://transformationalnutritionsummit.com/?inf_contact_key=5bf67d2fd977afc4ac8babfe1fe588c2a27d434d851a241999cd0498f1adb0b0
http://undergroundwellness.com
http://thedetoxsummit.com
https://digestionsessions.com
Thanks for all the great info and encouragement, Julianne. It was good to bump into you and Matt the other day, albeit at a doctor’s office!
Thanks for sharing, Chuck. I had some similar issues/symptoms back when we lived in Asia that have gotten better over time, so I can relate to a small part of what you have gone through. We will be praying it goes into remission.
I’m sorry to hear about the Crohns and the problems you have you are having. We will be praying that the new meds make a difference and you can continue with all your activities. Love to you and Brandi.