The shorter version:
Hi, I’m Cary. I have one irreplaceable soulet, Danusia, three cats, some health problems, and an ileostomy. When my body allows, I take too many photographs, bike, write music and words, and now, blog.
The short version:
Namaste,
I’m Cary Gossett, a physician and a patient.
In February 2005, I began having daily symptoms of irritable bowel syndrome (IBS). Over the following two years, despite countless doctor visits and medical tests, my symptoms intensified, resisting 35 medications, 4 low residue liquid diets, biofeedback, acupuncture, homeopathy, mindfulness meditation and cognitive-behavioral therapy.
In February 2007, I was diagnosed with chronic abdominal pain from colonic inertia, a rare disease that causes the colon’s muscles and motor nerves to stop working. By that time, I weighed 109 lbs, down from my normal weight of 155. I had one option (which scared the hell out of me) — a colectomy. My GI specialist determined that I was too ill to undergo major surgery and put me on intravenous feeding (total parenteral nutrition or TPN) for 4 months to gain an acceptable target weight and nutritional status for a rectal-sparing colectomy, which I had September 2007.
One month later, I underwent gallbladder surgery following a couple of late night ER visits for gallbladder attacks, a rare but known side effect of TPN. In March 2008, I contracted the first of two bouts with C. difficile, an intestinal infection that releases nasty toxins into the bloodstream, causing a debilitating illness and often death in elderly patients. Fortunately, two weeks of unthinkably expensive antibiotics taken at home worked for me on both occasions.
By November 2008, I was healthy enough to travel to Sedona AZ, where I had previously spent two months of each year writing music and mountain biking beginning in 1996 to 2006, the year my symptoms prevented continuing trips. One day that November, on a morning following my third bike ride in two years, I was awakened by sharp, pulsing pain in my flank–kidney stones. After a couple of visits to the ER, I underwent surgery for renal stones, a rare but known side effect of lyrica, a medicine I was taking for chronic abdominal pain.
As time passed, the muscle and nerve dysfunction that caused my colon to stop working affected my rectum, initiating a familiar cycle of pain and weight loss that began in 2005. Again, I faced one option — this time, an ileostomy, which I had June 2010. The ileostomy allowed me to slowly gain some weight, but did nothing to quell my pain, which had defeated five powerful pain medications.
In October 2010, I had surgery for a dorsal column stimulator (DCS), a spinal implant having leads that transmit electrical pulses through the nerve roots to block pain. It feels like buzzing from electrocution or the unnerving sensation of bugs burrowing under the skin, but sustained and from deep inside. Over the following six months, my pain, which the implant initially reduced by maybe 30%, found a way to return full force, so in April 2011, I had surgery for DCS removal.
Over the following seven months, depression, a common reaction to chronic pain, began to assert its hold, attaining an intensity equal to that of my pain. I honestly thought there was only one way to end the suffering, one way to end my struggle, because when all else fails, what is left must be right, right? My days were so dark that they blended seamlessly, almost unnoticed into every night. Insomnia from anxiety and fear kept me awake, not hope, which for me was completely exhausted, and moreover, questionable, something built by the imagination and belief of others.
Looking back, I realize I had one thing in my favor: paralysis. My mind and body were in such states of shock that I could hardly move. Breathing was an effort, so acting on any fatal thought was simply and physically impossible. My body was, inexplicably, trying to kill me and protect me at the same time. With nothing to act on physically, I was left to the sole action of thoughts, most of which I soon discovered to be rationalizations. It occurred to me that rationalizations are like ghosts: they only exist when one is thinking about them. So, was my paralysis merely an extension of a rationalization, the ghostly thought that I couldn’t function because I was ill, rather than the fact that I just didn’t have any volition to do so? Could I actually will the actions necessary to kill death before death killed me?
A week of agony slowly unfolded, leaving me alone with that inscrutable idea about killing death first. Then a previous thought appeared in a different light, the thought that ‘when all else fails, what’s left is right, right?’ Finally, I found something I had to do: summon the will to unearth how to end death before it ended me.
At that, mid-December 2011, I stood out of bed, ignoring the shaking sticks supporting me, grabbed my computer, and began my search for an answer. Incredibly, after 10 minutes, I found what I had been searching for all along, and it came in the form of a blog. I was reeling in my observation of someone who shared the same major surgeries as me, the same assault to body and mind as me, and the same zest for life as me before we both became ill. I watched her hiking, cycling, snowboarding, and even discussing and showing her ileostomy! I read and reread the posts on her many years coping with chronic illness, surgery, and pain. What really hit home was her brave, yet joyful attitude toward every crappy day life threw at her, an attitude that was completely foreign to me, but a lifesaving one that I desperately needed and wanted. As profound as the similarities were that we shared were the differences that we didn’t. Heidi had found the will to reclaim from her illness her values, her activities, her motivation to push through suffering to attain something much more important — her life. Immersed in her amazing life through her blog, I was overwhelmed with new hope and old sadness, a brutal, heavy combination that left me nauseated and with a horrible headache.
I closed my laptop and went straight to bed, a futile act, as I was up all night seeing in Heidi what I wanted to see in me. Was such living actually available to me? Could I initiate the will to make it happen? Heidi is human, just like I am, so if she can do it, can’t I?
A few hours later, I got out of bed and again went straight to my computer. I had to confirm that Heidi was not a lone exception to everything I knew. Again, one option: this time no surgery, but another search to find proof of another soul out there with the same experiences as Heidi and me. Incredibly, after 5 minutes, I found what I had been searching for all night, and again it came in the form of a blog. This one belonged to Charis, who shared the same major surgeries as Heidi and me, the same assault to body and mind as Heidi and me, and the same zest for life as Heidi and me before we all became ill. Charis’s blog was the perfect answer to my insomniac questions and the consummate compliment to Heidi’s blog. Between them, I had more than enough inspiration and spiritual fuel to at least attempt an activity like jogging or biking, despite my rebel body’s protests.
And that brings me to today.
Well, almost. At the end of December 2011, I began jogging, shuffling actually, each day. 10 minutes turned into 40 while 1 day turned into 20. Plantar fasciitis, another gift from my rebel body, sidelined me to a chair for a few weeks, but this time I had some anti-rebel body ammunition: my Heidi and Charis fortified attitude. So I stood up, ignored my aching abdomen and the damaged foot supporting me, fixed the flats on my bike and went for a ride, an activity I’ve been doing almost daily since I left that chair, which, for real this time, brings me to today:
Though this is a short summary of my illness, it’s a long way to get to the “About” of this blog, so here it is:
I realize I need a centralized, open hub for my writing, music, photography, bike forum, ostomy and health experiences, videos, etc. I also realize that two blogs, that their creators, my ostomates, both now great friends, may have saved my life. I’m sure there is or will be someone out there in the same situation as me before I found Heidi Skiba’s blog, OstomyOutdoors, and Charis Kirk’s blog, FullFrontalOstomy. RollinWithOuttaColon (RWOC — pronounced ‘rock’ ;-) is my way of reciprocity, of connecting and offering support to that searching individual while giving back to the OCIC (Ostomate & Chronic Illness Community), the community that gave me so much. Recently, I’ve made two more friends in the OCIC: Tosha Sisler, creator of the blog BottledTime, and Sara Ringer, creator of the blog InflamedandUntamed. Finally, this blog grounds me to a wider world, giving me added focus and purpose, values chronic illness can take away quickly … if you let it.
Heading out, February 26, 2012.
Hi Cary,
I don’t know if you remember me but Gina Bommarito gave me this website because she thought I would be interested in what you had to say. She asked me if I remembered you. Yes, I do… I remember the OR days at UCLA. You were always fun to work with. You were also a very good anesthesia resident. I read your blog and I felt compelled to write you.
My daughter, Kaitlin, who is 15 years old also has Crohns. She was diagnosed at the age of 10. She went through what you did when you were first sick. She, first had Rotovirus. Then, she had C. Diff. They never thought she had Crohns until she kept getting readmitted because she wasn’t getting better. She too, was on TPN. She didn’t grow for 4 years. She was in a VERY bad place back then but she is in a VERY good place right now. With the right medication, she has been “in remission”.
I’m so glad that you found Heidi and the other bloggers to help you. Kaitlin has been going to an IBD camp called Camp Oasis and she has met some wonderful people to help her understand her disease and how to cope with it. She goes every year but she keeps in touch with them via Facebook throughout the year.
I’m glad that Gina told me about you. Maybe Kaitlin (and I) can use you as a mentor. I know Life isn’t always easy but you seem to have it figured out now. I am so glad you did not go down the other path because I am glad you are here for everyone to know that as difficult as life can seem sometimes, it will ALWAYS get better.
Thanks for the blog and being so open.
Ruth Sohn Toyama
Ruth! Of course I remember you. I used to squirt you with saline while you were scrubbed in and expected to remain completely undistracted. But a few yards between us couldn’t thwart me. Thank you for the compliments. Means alot.
My heart goes out to Kaitlin. I don’t have Crohns, but I have the same and similar sensations. No child, or anyone for that matter, should have to suffer it. I’m happy to hear she is in a very good place now. I would like very much to hear how she, with the passionate help of her mom and others, turned all around. As you know, the mental side is as much a struggle as the physical, and together they can be overwhelming. I know telling her story would be very cathartic for her and inspirational for the Crohns and Chronic Illness communities to read. I’d love to publish her story on my blog and the other online support communities in which I’m involved.
Heidi recently returned from counseling at Camp Oasis. She loved it and writes about it on her blog OstomyOutdoors — in my links column.
Kaitlin clearly has learned alot, but if there is anything I can help her or you with, please let me know. I certainly don’t have it all figured out, but I do look for ways to make life better every day.
Thank you for writing and I look forward to hearing from you soon.
May you and yours long be plagued with good health,
Cary
Hello Cary! Blogs have been so important for me, too. Illness can be so isolating, and the accompanying anxiety and depression are indeed paralyzing. I have Crohn’s disease and an ileostomy, but I also have vision, joint, and heart issues. One of my turning points was finding a few awesome bloggers, Sara and Charis included. I look forward to reading your work!
Hey, Alyssa –> for writing, Gracias Amiga! And another two-thumbs up for the creative handle @partiallyunstuffed. Those two words together would n e v e r have occurred to me.
I’m saddened to hear about the extent of your illnesses. Buddha, one is quite enough! Existence rarely seems content to leave such heavy, unnecessary struggles out of our lives.
On the upside, you’ve chosen two of my three favorite bloggers (fav because I believe together, they saved my life). I first found Heidi (http://ostomyoutdoors.com/), and it was through her videos that I saw what was possible for someone who had experienced my degree of physical and mental pain, surgeries, adapting to an ileostomy, seemingly insurmountable challenges … She awoke me from near terminal sleep. I needed to hear and see her right at *the* critical point in my struggle. As that was happening, I found Charis, a second friend with a face and voice of confidence, then Sara, who’s likely made three times the # of videos than Heidi, Charis, and I combined. Ah, well, yes, I have a video — no face or voice, ironically enough.
You are unquestionably an awesome blogger. I must list you as a CDD, Chronic Disease Diva, a mindspark of Sara Ringer’s. In all equality, I told her I was a CDD too, a Chronic Disease Divo, creating a share of the acronym CDD. She smiled.
You started blogging just 2 months before me and I also had my ileostomy in 2010. Parallels. Mental & physical. Experiences shared as CDDs that no one healthy could ever truly understand. This is what I unknowingly needed-and fortunately found-from Heidi & Charis: understanding, the key to the locked door that once opened, allowed me to hear what I had to hear to make it. I found Sara through Charis, and by that time I was riding my bike again after several years tightly homebound. Sara helped inspire me to ride faster and further . . .
What do you like about attending college?
Best,
Cary
Cary – we have ‘talked’ a few times on my blog LivingBiggerWithColostomy.
We seem to have similar attitudes toward challenges!
I like your site, and the positive attitude you exude to others. There is so much to be done to bring awareness to IBD and Cancer and Ostomies, as well as comfort, hope, and encouragement for the continuously growing number of people that had/have/will have these life challenges.
I started the blog to “Spark positive attitudes by ostomates and about ostomates, by sharing real-life experiences, showing good living after-ostomy … to inspire each of us to live bigger”.
Apparently, many people want to hear our ‘yes, we can be active’ message. I am amazed at the number of hits to the ‘Favourite Links’ on my site.
I have added your site to my ‘Favourite Links’. I wonder if it is appropriate for you to add my website to your Support & Product Links 4 Ostomates.
Website http://www.livingbiggerwithcolostomy.com/
Favourite Links http://www.livingbiggerwithcolostomy.com/p/favourite-links.html
Facebook Page http://www.facebook.com/LivingBiggerWithColostomy
Facebook Profile http://www.facebook.com/paul.riome
Cheers
Paul
Thank you! Yes, I’ll gladly add the links you sent.
Best,
Cary
You are strong. I can tell it from this far…
You will be stronger as days pass by… Lead by an example doctor!
I am grateful to land on your blog. Thank you for sharing your journey.
Thank you, Happy Doc. Where are you that’s so far? And where are you in your training? And what specialty are you in? Lotsa questions!
Best,
Cary~
I am from india as you know by now. I love internal medicine, havent entered it yet…. Wish me good luck and pray for me.
I clearly recall my medical school and intern rotations in internal medicine. It’s a broad and difficult specialty, so I wish you all the luck you can handle. I’ll also say a prayer for you, as we need thoughtful, caring, and Happy physicians in this day and age.
Buddhaspeed,
Cary~
Thank you…
Btw sir.. I wanted to ask you somethin…
Therez a MCQ thats thats deemed controversial with respect to answer… Wonder if you might have a better view towards it…
Which is the earliest complication of illiostomy?
Necrosis or obstruction.
Thank you..
Byee
..
Please call me Cary. ;-)
Obstruction is more common in USA.
Cary~
Thank you Cary :-)
Wow. What a difficult ride. I’m happy to see that you stuck it out and are back on your bike again!
You talk about killing death. That’s a strange idea and hard to wrap my head around. How do you kill death?
Thank you very much.
Yes, killing death is a strange and cryptic idea. It means finding and acting on a way to stop the decay and ultimate demise of one’s hope, will, and healthy sense of life — these are the mental sustainers of life and the antidotes to death. Reviving and restoring them will ‘kill death.’
Hey, how’s it going?
Glad to hear you are doing so well after surgery and on your bike again! I saw the link to your blog on Heidi’s facebook page, and thought I’d drop a line.
I’m a competitive road cyclist with an ileostomy. Its been about 3 years for me, and I’m still figuring it all out and blogging about it on gutlesscyclist.blogspot.com
Happy riding,
Travis
Thanks Travis! Still fighting the rebel body, but having more better moments and using them for more activities. I’m looking forward to checking out your blog. Always in awe of competitive cyclists, especially the rare ones with an ostomy.
Stay strong, Cary