A Life of Crohn's

By Mike Vassolo

1 min read

I've been a Crohnie since age 12, and I am now 76. I've had six bowel resections, eighteen other surgeries, and so many procedures and hospitalizations that I can't remember them all (thank God).

Living life to the fullest

Bowel obstructions, abscesses, kidney stones and other assorted agonies related to Crohn's have conspired to destroy huge chunks of my life, but I'm still hangin' in there. Over all those decades, I've actually been quite fortunate.

I've been married for 55 years, helped raise two sons and two grandsons, and had a 44 year career in advertising and marketing. I've written half a dozen books, including the ironically titled Crohn's Is a Funny Disease.

In my spare time I've earned a 7th degree black belt in Kenpo karate, taught it for 25 years, and still stay as active as possible every single day. In fact, I'm getting ready to release an app called Plus1, a word game like no other.

It's been tough, but if I've gotten anywhere in life, I have to attribute it to a stubborn willfulness to get on with living no matter what. All things considered, life is scary good.

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Traci Musick-Shaffer Moderator & Contributor
@mikevassolo I think your story here is proof positive that a person can still do and enjoy life--even while managing the trials and tribulations of IBD. Are all the bowel resections fun? Absolutely, not. But through them, you learn how tough and resilient you are. I think it's great that you have accomplished all that you mention in your story, and you are a wonderful example to others. I hope your children and grandchildren see the Super Hero you are. Thank you so much for sharing your inspiring story. May you have a pain-free holiday season. Sincerely, Traci, UC-IBD Team Member
thedancingcrohnie Moderator & Contributor
You are so inspiring! Love you positive outlook. You have quite an impressive resume. I can tell that you definitely live life with zest and that is so refreshing to see. I wish you the best on all your endeavors and your new app! I do hope you have been feeling well lately. Thank you for sharing your story! Hugs, Elizabeth (team member)
Richard Faust Community Admin
Hi <inline-mention username="Mike Vassolo" user-id="8771887"/>. Thanks for sharing your story here. I'm sure you have seen some changes in treatments over the years. I know in a different thread I told you about my wife, Kelly. She once wrote about the evolution of RA treatments. How has your experience been over time with the evolution of IBD treatments? It certainly seems that there are now a few more tools in the box. Best, Richard (Team Member)
Mike Vassolo Member
Hello Richard. I wish that I had something more upbeat to offer, but I don't. Crohn's in the 1950s gave me two choices: corticosteroids (didn't help) or the knife (did help, but led to bowel obstructions within six weeks and episodically thereafter). Over the many decades since, I've dealt with the usual suspects from sulfa drugs to immunosuppressives to...just about anything that came alone. Some made me feel even sicker; none kept me from being sliced and diced again and again and again... Then along came The Miracle: biologics. I felt enticed but the first black box warning I saw warned that they might cause lymphoma--a disease that my father died from. I became concerned that if I jumped at one of these, it might scratch a certain gene the wrong way, activating lymphoma, and I'd go from the frying pan into the fire. So I persist in simply trying to survive day-to-day, just as I have since I was a child. It ain't fun, but it's a living. (Of sorts.). I've heard that Crohn's sometimes burns out in the elderly (I'm 76), so far no luck. In fact, a couple of days ago, I was forced to leave a family Christmas Eve party because I threw up (in my mouth, luckily.) Missed Christmas too. Very painful on more than one level, but then "missing out" is part and parcel of any chronic condition. Concerning contemporary treatments, i.e., biologics and biosimilars, they just don't work well enough long enough and can have serious downsides. Anyone who ignores the joyful commercials and digs into the reality will learn that. Every week I go to PubMed and Medscape to research the latest and greatest in Crohn's treatment. Studies have consistently shown that long-term efficacy (i.e., >1 year) hovers around 50% with most people having to cycle to another drug with fingers crossed. Also, there are usually at least one or more significant adverse reactions, many occurring in double digit percentages. I know that the commercials, gastroenterologists and human nature want us to embrace any straw offered, but personally the risk/reward of biologics leaves me too concerned to gamble. At 76, I guess I'll persist by simply surviving one day after the next. Killing time till time kills me, as it were. Right now, I'm sipping tea--my first sustenance of any kind in several days. I'm still pretty sick, but some of the more dramatic symptoms have calmed down. With any luck, Mr. Crohn's will permit me a Happy New Year. We'll see. 
1. thedancingcrohnie Moderator & Contributor
 <inline-mention username="Mike Vassolo" user-id="8771887"/> Thank you! -Elizabeth (team member)
2. Richard Faust Community Admin
 Hi <inline-mention username="Mike Vassolo" user-id="8771887"/>. The trial and error method of treatment and what it means for the longevity of individual biologic treatments is certainly a problem. I do want to share this article on precision medicine in inflammatory bowel diseases: <a href='https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8076955/' target='_blank' rel='noopener noreferrer ugc'>https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8076955/</a>. They discuss why these treatments fail and the potential for tests that would help identify which treatment would be best for an individual. They note that "such approach has the advantage to improve efficacy of the drug and limit adverse reactions, thereby improving quality of the life of the patients and reducing costs." I know none of this helps in the here and now, but sometimes its good to know that there are people working on these things. Best, Richard (Team Member)
Mike Vassolo Member
Thanks for the thoughtful response, Richard. Precision medicine is just another way of saying highly informed, educated guesses, which is the scientific method in a nutshell. I'm very glad that researchers are diligently working toward improved personalized therapies, not just in IBD but in so many other areas. As for the patients, well, where they fall on the research timeline is crucial. As I've mentioned, when I was 12, my choices were prednisone (with fingers crossed) or the knife. Period. As time progressed, I tried pretty much whatever came along with no durable good results and some bad side effects. By the time biologics hit the scene, it was too late for me. Six bowel resections and multiple problems like an obstruction here, an abscess there, transformed my overall attitude from one of hope to simple survival. I'm heartened that a 12 year old today has some therapies and research that hold promise for a cure of sorts. Maybe. Up to now at least, nothing seems to be able to reliably tame the beast with any real hope for a durable outcome. Given my possible genetic background (my father's lymphoma), I'm not ready to gamble that a highly uncertain therapeutic roll of the dice is worth the highly uncertain side effect of a deadly cancer. I wouldn't prescribe that way of thinking for anyone else, but it's gotten me to 76, so I'll stick with it for now. 
1. Richard Faust Community Admin
 Hi <inline-mention username="Mike Vassolo" user-id="8771887"/>. Given your circumstances, I completely understand your approach. Much of your story actually sounds all too familiar. My wife, Kelly, was diagnosed with severe form of a different autoimmune condition (juvenile rheumatoid arthritis) at age two, almost 45 years ago - before modern treatments, with the damage to show for it. As you note, the knife became the option and she had both hips and knees replaced at 15 and 16 respectively and has used a motorized wheelchair since her late teens. About five years ago she was able to start a biologic that brought her inflammation numbers into the normal range for the first time (there is research finding that the particular molecule this drug inhibits is a primary driver in juvenile RA cases), but it can't undo the damage that has been done. On more than one occasion we have had the conversation with her rheumatologist about the hope that kids diagnosed today won't have the same level of damage. The drug does improve Kelly's quality of life, but she is only 46, so that is a big part of the equation. Each person has to weigh their own circumstances when it comes to risks and benefits. That said, it really is about the future when it comes to precision medicine and, hopefully, a brighter one for the patients to come. Best, Richard (Team Member)
Mike Vassolo Member
Your wife is lucky to have such a thoughtful and understanding husband as you, Richard. I wish both you and she, as well as your loved ones, a happy, healthy new year. God knows we need it.