2022 Crohn’s & Colitis Foundation’s Take Steps Southeast Michigan walk
Take Steps is one of our biggest research fundraisers. And while we (I am a volunteer committee member for CCF’s Take Steps, lead by Sarah Arminiak) we will be back to a full in-person walk this year, I am grateful for you and your support of me and my team, The Craptastiks!
My Crohn’s story is really getting old, but this year there’s a new twist. Don’t get excited - it’s less like a DQ soft serve, and more like a cyclone.
You know the drill
I am writing to ask you to please DONATE TO MY TEAM http://online.crohnscolitisfoundation.org/goto/TeamCarin.
Large or small, evey dollar matters! I'm trying to raise $5,000 by the end of the month so please run, don't walk, to my page and DONATE TODAY!
Many people know my whole story, and if you do, no need to read on. But if you don't know, or don't remember the details, the reason I Take Steps and ask for your support can be found below. My 2021 update first.
My 2021 Crappy Crohn’s Update
I had hoped this would be the year of no hospitalizations! No such luck. It’s been a year of hospitalization, extensive testing, terrible pain, and no immediate fix in sight. I’ve had a CT, MRI enterography, ballon endoscopy, and I’m just waiting on the return of my biopsy results.
This is why I push every year to be a top fundraiser in Southeast Michigan - because I’m not just fundraising for myself, but also for the 1.6 million diagnosed patients out there. We don’t want a cure - we need a cure. So please, give what you can. It means the world to me.
I have Crohn's Disease and several related illnesses (arthritis, bronchiectasis, Addison's Disease, blood clots in my liver, gall stones, and multiple hernias) that I've acquired since being diagnosed in 2003. In November 2009, my entire large intestines (colon) was removed, and I had a temporary ostomy (poop through the gut into an attached bag). It was an awful experience, and I had leaks several times a day. I cried all day, every day. I wasn't able to leave the house for 6 weeks, and I thought often about ending my life.
Luckily, I had the ostomy removed in January 2010, and hoped that would be the end of everything. Unfortunately, the 'j-pouch' built by my surgeon, which allowed me to poop 'normal,' didn't properly heal.
After two years of intermitent hospitalizations, where the GI doctors had exhausted everything they knew to try, including being transferred by ambulance to UofM and Henry Ford, my Crohn's flares just would not subside. I had been on steroids for so long that my adrenals stopped working on their own, and I had an adrenal crisis. The dehydration and malnutrition had become so severe that I had pancreatitis and stage 5 kidney failure, along with a loss of 20 pounds in 6 days. Something had to give.
This is when I was referred to the Cleveland Clinic, by way of a GI doctor in Austrlia, of all things!! (My mother-in-law's Ohio State friend's husband). I saw Dr. Bo Shen, who had 10 different things he wanted to try before another surgery. Things were great for a few months, but then my body starting rejecting treatments, one at a time.
So in March 2012, I very reluctantly went in for sencond temporary ostomy. Based on my previous experience, I was extremely hesistant to have an ostomy again, being stuck in the four walls of my home. But I was so sick, I just couldn't really survive on the path I was on. Another temporary ostomy was the only answer.
Surgery was on a Monday. When I woke up, all seemed well. The doctors want you up and walking around as early and often as possible after a fully open abdominal surgery, so I spent all day Tuesday walking the halls with John, and chatting up the nursing staff. I even convinced John to go back home to Michigan and return to work because I would need his help when I got home from Ohio. Wednesday morning, I ate a full liquid diet for the first time, took a walk through the halls, chatting with the nursing staff, making the best of my situation. I don't remember anything after that until the middle of April, when I next woke up again.
I had returned from my walk, and either I or my roommate called for the nurse. She found me unconscious with a temperature of 104 and a WBC of 37. I was septic, and after testing, they found a perforation in the small bowel. My stomach contents were leaking into my body cavity. The doctors inserted 10+ surgical drains, but after 9 days, they realized the only way to stop this was to do another surgery and give me a second ostomy, higher up in my intestines, above the hole.
I was in an induced coma in the ICU for about a month, on a ventilator for 17 days, and coded three times. Again, I have no recollection of any of this, and when John was telling me the story, I was so unbelievably sad for the girl who this happened to. I remember crying and asking him if she was okay. And no one was more shocked than I when he told me that it had all happened to me. I couldn't move my arms or legs because my muscles had atrophied. I was horrified that not only did I have the expected temporary ileostomy, but the second temporary jejunostomy. But Cleveland Clinic had the most incredible ostomy nurses who spend a lot of time with me making sure I had the right supplies and could properly change the bags on my own.
I left the hospital on my 40th birthday, and went to a rehab facility, where I had to do PT and OT twice a day, and art therapy (just to keep me sane). I was there for almost 2 weeks before returning to Michigan. I worked really hard to come home because I missed my kitties. And John The jejunostomy was removed in July of 2012, and the ileostomy was removed a year later, July 2013.
But son a gun! In 2014, my j-pouch was still being a total jerk and not working properly, so a decision was made to have a permanent ostomy, which I've had since and will likely have the rest of my life (unless they come up with something new in the medical world, which I haven't given up hope on). But that hasn't been all for me. My battles with Crohn's and the peripheral illnesses continue. I continue to have problems and, until there is a cure, will likely experience the same for the rest of my life. I have had surgeries for fistulas, abscesses, hernia repairs, and inserting surgical drains. I have spent more than 4 months in the hospital since 2017; and nearly 29 months since 2009. That's MORE THAN TWO OF THE PAST TEN YEARS spent in a hospital.
And that is why I Take Steps, to raise money so that one day there will be a cure. But I am not alone. There are studies that show there are more people living (suffering) with Crohn's and Ulcerative Colitis than there are with type 2 diabetes, yet so many go undiagnosed because of the embarrassing nature of the disease (diarrhea, bloody stools, horrible abdominal pain - not the easiest things to talk about). In 2018, we had a two-year old little girl who had been through almost as much as me. How unfair is that?! She's just a baby. And it seems like there are more and more children diagnosed every year. I can't imagine what high school would've been like having diarrhea all the time, having to run out of classes, miss a bunch of school, lose a bunch of weight, then gain a ton back when the docs put you on steroids. It has been hard enough for me, a secure, optimistic adult. My heart breaks for these kids and want the cure maybe more for them than me. So please help and give what you can.
This disease has forced me to medically retire from a job I loved. I have lost friends because I was always having to cancel on them at the last minute. I have good days and less than good days. But most days are good enough. And that's all I'm praying for June 8 - that I can show up, walk, and be proud that I was able to garner support from family and friends in order to meet my short-notice goal of $5,000. So please, give what you can - a cool mil, $50, $10, $2. Every dollar counts! But a cool mil would give me awesome bragging rights! Why don't I know any millionaires? Or DO I?!?!
Don't get me wrong - 2018 and 2019 have not been all bad. I've made some great friends at Nafas Fitness in Royal Oak and on Celebrity cruises, and I've seen some incredible plays, concerts, and stand-up comedians. I am still sarcastic, fun, love to laugh, and wake up each day trying to put a smile on my face and make the best with what I've got. Believe it or not, I still love my life and wouldn't trade it for anything. John has been an incredible support, and our 2 kitties are always there for me, especially on my worst days (I think they secretly hope for me to have bad days so they don't have a reason to get out of bed, and can be lazy and snuggle up to their mom!). But that's no reason for you to not donate! Help me Take Steps and meet my goal.
DONATE HERE: http://online.crohnscolitisfoundation.org/goto/TeamCarin
Thank you for your support!
Much love, Carin
Here's the CCF party line but most of you already know this: I'm walking to empower patients and families living with Crohn's Disease and ulcerative colitis. We are a community dedicated to improving the lives of the 1.6 million men, women, and children who struggle with digestive diseases in the U.S.
Please join me in supporting the Crohn's and Colitis Foundation of America (CCFA) by donating toward my fundraising goal for this year's Take Steps walk!
Your donation will directly support critical research projects, as well as groundbreaking patient programs like Camp Oasis, a summer camp just for kids with Crohn's and ulcerative colitis.
Take Steps is the nation's largest event supporting vital research, treatment, and life-enriching programs for people with inflammatory bowel disease (IBD). Our walk brings people from all across the community to join together in fun, solidarity, and purpose. Since its inception, Take Steps has raised more than $75 million nationally to improve the lives of those affected by these diseases.
Please donate $50 or more to support my fundraising efforts in celebration of The Foundation's 50th anniversary. Better yet, take it a step further and register yourself! It's not only deeply important to me, but to many others whose lives are impacted by IBD. UC and Crohn's doesn't care if we walk or not. It continues its attack, causing pain and suffering to those like me. So please, give what you can. Help me find a cure!