Just a short post today to update the status of my Crohn’s (and/or other mystery condition) this holiday season. So far this week my “gut” has been remarkably quiet. I had some problems a week ago – which struck during the annual holiday outing with the office sadly – but I went through all of Christmas Eve and Christmas Day without any incident. This was even after eating popcorn two days in a row (which sometimes seems to cause me issues).
My energy is okay – not too tired, but not too energetic either – and overall I’m okay and think I feel pretty much as a “normal” person without an IBD would feel (not really sure of course).
In other good news the pathology report from my last colonoscopy did come back and the polyp that was removed was deemed to be “hyperplastic” which means, according to the American Cancer Society website at least, that it was benign and nothing to worry about (hurray!).
I am scheduled for what is called a “double balloon endoscopy – colonoscopy” on January 29th. This test is designed to go higher than the previous one, which if you’ll recall came back pretty much normal. There was some “focal distortion,” indicating healed injury, of the Ileocecal valve but the etiology (causes) was not apparent. But, still no definitive proof of Crohn’s. And if surgery is needed it won’t be done without this evidence. Though my doctor does say that there is a 95% chance it is Crohn’s. He is also concerned that the Crohn’s could have become lymphoma over the years and wants to rule this out as well.
Another fun thing, by the way, for Christmas I got an “UP 24” (by Jawbone) to help me monitor my overall fitness. So far after using it for two days I’ve discovered that I don’t walk enough (almost 2,000 steps short yesterday), I eat too much (I told you I was feeling good) and my sleep is restless at best. Hmmmm…like I needed a new app and device to tell me all this! I’m also trying to make better use of the GI Monitor app to better track my IBD symptoms. I’m not doing as well with that as I could. But, I’m off work until Friday, January 2 so I’ve got some time to break in a few new habits.
I believed in God, to begin with. There is no doubt whatever about that.
I was raised in a household with a strong Christian tradition. My parents, grandparents, aunts, uncles, and friends all believed in God and that Jesus Christ was our Savior. Like my mother, I was raised, baptized, and confirmed in the United Methodist church (technically I was first baptized as a Methodist Episcopal as the church was known before 1968). My family believed in the grace of God, in redemption, and forgiveness. I was taught that God was present everywhere. In the whisper of the breeze through the forest, the grandeur of the mountains, the song of the sparrow. I was taught that God was good and God was great.
As I grew in experience and intellect I pondered the mysteries of the infinite and eternity. I asked my self often “is this all there is?” and I came to the spiritual and logical conclusion that there must be more to existence. There must be a God. I studied the Gospel and found that the teachings of Jesus Christ were good and right and that to follow His footsteps was to walk the path to salvation. I’ll be honest and say that like many early Christians I question the divinity of Jesus. However, I have never questioned that he had a relationship with God which was unique in all of history and that he spoke with the authority of one who knew God and understood the meaning of life.
So, I’ll say it again…
There is no doubt that I believed in God. This must be distinctly understood, or nothing wonderful can come of the story I am going to relate.
My father died on Christmas Day 2013. I’ll never forget being by his bedside that morning in the dim light of the hospital room, surrounded by family, as he took his last breaths. This was made even more difficult because it seemed to parallel the death of his mother many years earlier and by the fact that his sister died just the year before. My father died on Christmas Day, the “best time of the year.”
My spirit and faith were crushed.
Now, we all know that death is part of life and I’m certainly not the only person to lose a loved one on a holiday. In fact, I know a woman who lost her father last year over Thanksgiving – and then lost her mother this year over Thanksgiving. A cousin lost both her aunt on Christmas Eve and her uncle (Dad) on Christmas day. I have many friends who have lost one or both their parents, including most of my cousins (how they have been living with the pain all these years I’ll never know). So why should Dad’s passing cause a crisis in faith for me? Was this crisis all because life wasn’t going according to my internal script? Going by MY plan?
Or was it because after we had returned from the hospital Christmas Eve, with the knowledge and understanding that Dad would not pull out of this, I whispered a simple prayer, “please let him rest through the night without incident, please give us a miracle and let him recover.” Then seemingly within moments of whispering this prayer the phone rang, we needed to get back to the hospital quickly if we wanted to be with Dad in his final moments. Not what I wanted at all. I drove back to the hospital with my mind filled with grief and anger.
Though 77 years old, Dad was not supposed to die yet. He was remarkably healthy except for this small spot of cancer that had formed in his mouth several months earlier. He was fit and strong with a clear, sharp mind. The surgery went well and he followed all the recommended protocols and the advice of the doctors – difficult though it was at times. “There’s no sense in hiring and expert if you are going to ignore his advice” he said. He tolerated the chemo and seemed to be doing well with the radiation treatments. “Seemed” being the operative word. What we didn’t know is that the radiation was weakening the muscles in the back of his throat so that he could no longer swallow properly. Our first clue came in October when he developed pneumonia. But, he was out of the hospital in a few days and seemed to recover. Then mom noticed he didn’t seem quite like himself and he wasn’t bouncing back when all the treatments ended like he should have. We learned later that he asked his primary care physician “what if I don’t get better? I can’t go on like this.”
He was weak and drained for no reason. Sleeping a lot more and then about a week before Christmas I get the call from Mom, “come home, you’re Dad is not acting right we need to get to the hospital.” He was confused, didn’t know basic facts. In the emergency room he got some oxygen and seemed to be recovering. He was admitted overnight for observation. One day stretched to two, then three, then four…
Aspiration Pneumonia is what the doctors told us he had and there was no chance for recovery. They could extend his life through drastic measures but he would need assistance breathing for the rest of his life and once incubated would never come off that breathing tube. We knew that Dad would not want to live like this so the most difficult decision of our lives was made. We knew what Dad would do and want. We let nature take it’s course.
Let God’s will be done.
In that moment I hated the universe for playing such a cruel trick. I hated God for His apparent lack of mercy. I was angry beyond words. If this is what faith brought you – faith in medicine, faith in God – then what good was faith?
After Dad passed our Pastor was called and one of the first things my mother said to him was that we were converting to Judaism. When he asked why, she said “because we can never celebrate Christmas again.” She felt much the same way as I did. But, she was not giving up on God altogether – just the holiday. Her faith through those next few days was much stronger than mine and perhaps always has been.
I continued to go through the motions of a good church goer this past year. I still had duties to fulfill as chairman of our Pastor Parish Committee after all. Plus, I had invested nearly my entire life with this particular church. It’s where I grew up and I had many fond memories there. But, my heart was no longer really in it.
Looking back on this past year in church this past Sunday morning though, I had a revelation. We often talk about faith getting us through difficult times. I’m not sure that this is exactly true. Faith doesn’t get you through the difficult times – faith gets us through the times that follow. In moments of crisis there is no time to think and reflect on faith, you can only act and feel. I didn’t reflect on faith or God while Dad was dying. I only thought about how he had suffered, how my family was suffering, and how I was suffering. I did not muse or wax poetic on the meaning of life faith was of no use to me at that time. I prayed, but I prayed from a selfish viewpoint. No matter that most anyone would do the same in that position. The prayer should not have been to save Dad, his faith had already saved him long ago. My prayer should have been to let him transition to the next life peacefully. That was the prayer God answered. I believe that he did transition as peacefully as any of us can, with the aid of kind and caring medical professionals and surrounded by those he loved most and those who loved him most. And I have faith that he was greeted by his Maker with a hearty “well done, good and faithful servant, enter thou into the joy of thy Lord” and welcomed by all those who went before.
Anger kept me from understanding the real purpose of faith. Faith is a tool for us to understand that there is more to existence than our mere mortal shells. More than can be understood by any person. Faith is what brings us together as communities. Faith lets us move beyond the mere words of the Gospel and moves us to action. Faith is what helps us to understand that by caring for each other we are doing the work of God. Faith is what allows us to go beyond logic and reason and reach into the mind of the Infinite.
Faith is what makes us human. Regardless what we think about the stories of Christmas and their accuracy, that’s for the biblical scholars to debate, faith is what Christmas is truly about. Faith is why I can now say without hesitation:
I’ve always had a problem, unrelated to my Crohn’s and other health related issues, in that I tend to measure my successes against other people. I suppose we all do this to some degree, but it can really be a problem/bother when working on physical changes. Not so much with weight loss, I don’t really get worried if someone else loses weight faster than I do (even when competing with them a la “Biggest Loser”). But with things less under my control. Like “why don’t my biceps look like that guy’s” or “why can’t I bench as much as him?” and other things like that.
For example: there’s this guy I know who from my earliest memories of meeting him gave me a big case of bicep envy. Of course, over time memory does embellish things, but back in college on the rare occasions I would see him flex I remember being struck by how high and peaked his biceps were – to the point that you could even see the split in the peak. His arms weren’t especially large at the time, about 16 inches or so, but to an even skinnier me they seemed huge. Over the years I worked on my biceps until eventually my arms were just as large as his were back then. But, to my surprise, my arms didn’t look like his at all. I knew that I had muscle as I had gained strength and my arms were hard to the touch, but instead of high “peaks” my biceps retained a flatter “football” shape. Back to the weight room…
Some time later we began to work out together. Doing a heavy bench routine that we both responded well to – though to be fair he responded much better to than I did. By this time however, though I was still envious of his gains (his arms swelled from about 16 inches to well over 18 inches in just a few months – mine from just under 16 to about 17) I was also truly happy for him and his gains (though he never really gave the impression of caring about gains in size the way I did/do). But I noticed something else. Once again, my arms never got the peak I so desired but the peak that he had in his youth was not nearly as evident either. When he flexed I could see that his biceps were still decidedly more peaked than mine, just not as much as before. What happened? Science tells us that you can’t change the shape of the muscle, so why weren’t his now much larger arms (and solid) more dramatic as they were before? That’s when it occurred to me. It’s an illusion.
What caused his arm growth wasn’t this time so much a change in his biceps but instead that his triceps grew to match. As a result, the biceps did not stand out as much because they were balanced by the larger muscle underneath. This is part of my issue as well since my triceps actually to a degree overshadowed my biceps (something my friend had to point out to me).
These body illusions occur in other ways, too. I know another young man who when you meet him you realize that he is fit. You know, wide shoulders and thin waist, the classic “V” shape. But he’s not very large so fully dressed you don’t think of him as being overly muscular. It wasn’t until he posted a “selfie” on Instagram one day (which apparently is a thing you are supposed to do nowadays) that I realized he was very muscular – complete with six pack – and looked huge. I know he’s not “huge” but a lack of body fat actually adds to the illusion of size when there isn’t anything else for a point of reference (like another person).
I once play Lenny in “Of Mice and Men” and if you’ve read the book you know that Lenny was a big hulking brute of a man. I’m not so much of a hulk. I was going to be aided in creating the stage illusion of size by wearing some thick books (I was already the tallest in the cast except for one guy), but I went to a personal trainer friend of mine and asked what do I do to add size quickly? He suggested just focusing on the back and shoulders as those muscles will give the greatest illusion of size.
Where am I going with all this? I’m not sure. The big lesson is don’t compare yourself to others. That way leads to disappointment especially when you don’t understand that some of what you admire or envy in another person is an illusion. Instead compare yourself with yourself with your training and fitness goals as there are fewer illusions involved (except for the self-deception many of us have when looking in a mirror – but that’s another topic).
Also, I’ve been talking about physical illusions. There are other illusions too. For example: like many Crohn’s sufferers, I try to give the illusion that I’m not in some sort of pain or discomfort every day. I have a feeling that this is true of many other people with other conditions physical and mental. So maybe when approaching someone else we all should keep in mind that the person we see on the outside is just an illusion. We can’t know what’s going on inside – they may be in just as much pain as we are and perhaps should be treated as such.
So, I got a call from my gastroenterologist today. I thought he was responding to an email I had sent earlier in the day concerning this week’s flare-up of my Crohn’s but no. He was calling with the results of the biopsies taken during my recent colonoscopy…
Now, I never take it as a good sign when biopsies come in sooner than expected and when the doctor takes the time to call. But, this call as one of those “mixed bags” of news. First what most people would consider the good news: no Crohn’s was revealed by the biopsy. The samples taken were perfectly normal despite evidence of previous “injury” (his word not mine) of the area.
The bad news: what we are looking for must be further up the intestine that thought. We need to look again, but this time go higher. Good news: there’s a new state of the art (and presumably expensive) test that we can do to look further. Basically, another colonoscopy with an even longer hose! Yay…
So, I go back under the “Twilight” drugs in 4-6 weeks (still have to have the procedure scheduled) and have another colon cleansing. I hope that I don’t get used to being completely empty (so empty that last time I whistled when I walked – and not using my mouth…think about it).
Why keep looking? Several reasons, without a biopsy there’s still a slim chance I don’t have Crohn’s. It is possible for Crohn’s to have changed into a more serious condition such as lymphoma (i.e. cancer) and we need to rule that out. He does admit that this is unlikely, especially given how long I’ve had the condition but best to be safe. Also, I think he really believes that surgery is in my future and no surgery will be considered without a biopsy confirming the Crohn’s.
So, here we go again! Weeeeee! Maybe this time I really will glitter after getting the “Twilight” drugs. I can only hope.
Well, today was difficult…not because of anything that went wrong per se but because sometime during the night my Crohn’s decided that it hadn’t been active enough and I’ve been dealing with a “flare-up” all day.
Now, my flare-ups for the past many years have been mild and probably to many sufferers of Crohn’s non-existent. I have a feeling of bloating, sporadic pain – but today only a few spasms that were strong enough for me to double over – one incident of vomiting (more on this later), and a lot of noise and rumbling from my mid-section. Oh, and my favorite sensation, hunger “pains” with Crohn’s pains which leaves me wanting to eat but realizing that if I do I’ll pay for it dearly. But, temptation is always there and I finally gave in early this evening. I’ll tell you all about it but first let me set the scene…
For those who don’t know me personally, I consider myself an actor (director, playwright, whatever) and for the past 32 years or so community theatre has been my passion. I perform mostly with the Monroe Community Players (MCP) in Monroe, Michigan and have gone so far as to be active at the state level, including four terms as president, with the Community Theatre Association of Michigan (CTAM). Well, because of my affiliation with MCP I was invited to help out at a concert tonight with the Monroe Community Symphony Band, directed by Mark Felder who coincidentally has two children who suffer from Crohn’s but that’s incidental to my tale, and introduce a few of the numbers while portraying some famous people from the movies. I got to be Charles Kane, Otis (from Superman) and an agent of SHIELD. A quick, simple gig for the most part but fun and enough to quench the acting bug’s thirst for a while (I’m between shows). What could go wrong?
That takes us back the Crohn’s flare up. I made it through the work day, though I got very tired during an afternoon meeting – which isn’t unusual after lunch but this was “Crohn’s tired” which means I was running the risk of falling asleep in front of my usually understanding boss (who’s father and brother also have Crohn’s, apparently I’m connected to most of the 1.6 million sufferers in the USA if I look hard enough). I didn’t eat all day and by the time I got home I thought maybe I should try something before going to the concert. But what? The pains in my lower abdomen told me that anything I tried would be coming back up quickly and then it occurred to me. I have all that Jello left from my colonoscopy prep. Jello, which is considered by the medical profession to be a “clear” liquid. Surely, I could have some Jello to settle my stomach and not further aggravate my Crohn’s. Moments later two little cups of lime Jello are gone and I felt satisfied enough to stop there and head on to my performance.
On drive to the concert my cramps became more insistent. I stumbled into the dressing room, changed into my first costume which had become uncomfortably tight around my waist…tried to maintain a positive attitude through backstage pictures, excitement, etc. The pain increased until finally I had no choice – I broke out of a group photo unannounced and walked quickly to the restroom filled with band members taking care of business before the concert. No, I wasn’t going to be alone for this…empty stall secure and then as quietly as I could the vomiting began. Green liquid poured out of me mixed with a day’s worth of bile and other acidic fluids…nasty. And though I thought I was being quiet I hear from the next stall “you okay in there?” and I weakly tried to explain between upchucks (is that a word) that I had this digestive disorder and that I was fine, please don’t worry. Though I think that my symphony sympathizer worried a bit anyway judging from the sideways glance I got while washing my hands afterwards.
Anyhow, I toughed it out. Got through my first two intros without incident and even the later one. Begged off as everyone else started talking about pizza afterwards and came home. No sense in tempting fate further. Now I only hope that I can get some sleep tomorrow and that everything settles down by morning.
Oh, and why the flare-up I wonder? I know that Crohn’s is random but I have also noticed that whenever there is a big change in the weather my gut reacts. It warmed up quite a bit this weekend and I still think that the sudden “swing” in the barometer. I wonder if anyone else has noticed something similar with their Crohn’s?
Long story, no point really. Just a glimpse into what I sometimes go through for my work and my craft…I know that there are others who can tell tales even more distressing and embarrassing but I think I’m occasionally allowed to vent a bit, too.
Well, I had my follow-up colonoscopy today. As I mentioned in an earlier post because of my recent CT Scan my gastroenterologist is very sure now that I have Crohn’s. However, since there is evidence of a fistula having formed and because a biopsy have never been taken, he thought it would be good to have another colonoscopy even though I wasn’t scheduled for one until 2020. Turns out, that it was probably a good thing I had it done…but more on that later.
The prep for the procedure was just as exciting and thrilling as I had anticipated. Instead of how I had to prep for the last one four years ago this time I ended up having to drink 128 oz (just under 4 liters) of “GaviLyte-G” a mixture of ingredients designed to really get the bowels moving – and quickly. I started the first round after work at about 5:00 PM. Within about an hour of taking the first four glasses the flood gates opened. Now, my instructions were to drink one glass every 15 minutes until I had 8 glasses (64 oz). What the instructions don’t say is how to keep drinking while you are going. So it took a little longer than anticipated to finish the first round. And let me tell you, even though the stuff didn’t taste that bad I could barely look at that last glass let alone drink it. About 10:00 PM I went to bed to get some sleep before I began round 2 at 1:30 AM. Round 2 took even longer and I was back in bed by 4:00 AM to catch a quick nap before getting up to leave at 6:30 AM for my 7:30 AM appointment.
Check-in at the medical center and the procedure went smoothly. Even though I was still going to the bathroom as late as 7:20 AM – it appears that I finished just in time.
I got the results of the colonoscopy right away – except for the biopsy results which will come later. However, it looks like the doctor found what he expected, evidence of Crohn’s and a fistula (the biopsy will confirm the Crohn’s). But, he also found something unexpected – a sessile polyp. A sessile polyp is one that is fairly flat and without a stalk like other types of polyps. It was 2 mm in size which isn’t very big but larger than we’d like to see. Given that I just had a colonoscopy 4 years ago it seems to me that this polyp formed fairly quickly. The good news is that it was removed and it’s unlikely I need any other treatment for it. However, they will be testing it for cancer. If they find some cancer cells I’m predicting that I’ll be having several more colonoscopies over the next few years. No waiting until 2020 as originally planned. Well, better safe than sorry. Colon cancer is among the most treatable and curable of cancers as long as it is caught early. By the time symptoms occur it’s often too late. So, that’s why it was a good thing that I had this unexpected colonoscopy.
I was pleased that this colonoscopy was conducted with no pain on my part, though I don’t feel that I was completely under at any given time (they used “twilight” drugs so I can only presume that I will now glitter in the sun) and I woke completely up very quickly. Last time I think I was out for most the day – this time I was awake enough to have some breakfast before taking a nice long nap (I was up half the night remember). But, all in all, not a bad experience.
So, to summarize: no colon cancer (this was stressed), possible pre-cancer polyp, evidence of Crohn’s. More news in 2-4 weeks when those biopsies come back. Hopefully, the polyp was benign but we’ll see.
Many articles have been written about how women are faced constantly by unrealistic body images and that this causes issues for girls growing up. I think that there is a lot of validity to this argument and one only needs to look as far as the Barbie aisle of the local department store to see how early these expectations are planted in little girl’s minds.
But, I don’t think that much has been written about the same issue for boys and young men. Over the past century the expectation for men to be not only fit but very well built has increased incredibly. Check out any gym today and you’ll find plenty of guys working their abs until they drop, making sure that their biceps and triceps pop – but not so much the thighs. I was, for better or for worse, brought up in an age before muscles were not only encouraged, but expected. I often like to joke that I went to high school before abs were discovered.
Now don’t get me wrong, I think that the pressure and expectations on boys and young men is less than on girls – and certainly not as overtly sexual – but it is there.
To illustrate my point let’s take a look at some images of everyone’s favorite Man of Steel over the past 75 years or so…by the way, all images and trademarks I’m sure are property of DC Entertainment and are used here only for educational purposes and I found them using Google anyway…(hopefully, this is enough to keep the lawyers away).
Superman as illustrated in the late thirties and forties.
The image at the left shows Superman as he appeared shortly after he was introduced to the world by Jerry Siegel and Joe Shuster in 1933. Even at this point he was portrayed as an athletic figure with broad shoulders and a thin waist. His pecs are evident and there is the suggestion of abs, but no six pack. He gives the impression of strength without bulk. In fact, I’m sure many a farm boy and laborer looked like this (but who could tell under the baggy shirts and pants?). But not the average kid who was reading the books (back then comics were read almost exclusively by 10-12 year old boys). This was a physique that most of the boys reading could obtain with a good diet and some basic exercises and realistically aspire too.
Wayne Boring’s Superman in the fifties.
Now let’s jump ahead into the fifties and sixties. Superman has clearly packed on some mass. This is the image a lot of people think of when they think of Superman even today. As illustrated by Wayne Boring, Superman took the form of a powerlifter. His abs are more defined, sure, but look at that barrel chest and torso. This was the image of strength in post-war America. Pure brawn without too much concern over aesthetics (at least by today’s standards). Though his chest and torso are big, his arms and legs are relatively scrawny compared to any modern bodybuilder (and even to bodybuilders of the day). Again, the physique that I image a lot of hard working construction men or guys on the loading dock might have had. Again, the boys reading the comic could realistically aspire to this physique.
Superman – Kryptonite No More!
Now onto the seventies and things are starting to change more rapidly. To keep up with the changing expectation of what was considered muscular and super-heroic Superman finally gets honest to gosh abs. His delts are much larger and his chest to waist ratio is beginning to look more like a top level bodybuilder/athlete. Legs are still a bit thin, but now they are defined. Clearly, this Man of Steel has been hitting the gym in his Fortress of Solitude! The bar, as they say, has been raised for boys reading the comic. By the way, the age of comic book readers starts to go up during this period. Now teens are reading. Gawky, skinny, self-conscious teens who are more likely to have body image issues.
Superman in the eighties by John Byrne.
In the eighties Superman got a major make over by John Byrne both artistically and story wise. Overall, I approved of most of Mr. Byrne’s changes by the way except for his insistence that Lois Lane was a red-head…ugh. Everyone knows that she’s a brunette and preferably with blue/black hair! Anyway, look at the proportion of Superman’s chest to his waist, the size of his arms and even his legs are larger. I think that at this point we have started to move well beyond the type of physique that the average man could obtain without some great genetics and a lot of gym time! The average age of readers continues to rise and now most comics are sold in specialty shops as opposed to the supermarket, drug store, or news stand.
And here we have Superman today (below). This man’s shoulders are positively massive. His legs have caught up to his arms and I think in most drawings he now has an eight pack as six just wasn’t enough. A physique that most men could only realistically obtain if they were born on Krypton.
Now, to be fair, the point of super-heroes is that they appear to be super-heroic (don’t get me started on Batgirl’s bat-boobs and the main wonder about Wonder Woman is how her wonder bra manages the strain). So you want to depict them as larger than life. And perhaps the fact that now comic book readers are typically males aged 20-45, along with a small but growing number of women has influenced the look of the books in general. I get that, but my point here is simply that the expectation of what is super heroic has changed over the years and that this is the type of image that may be affecting the body image of many of our youth today without most of us even realizing it.
What do you think?
Next Up: The physics of Eternia or How Does He-Man stand?
To close out Crohn’s and Colitis Awareness week, I’d like to mention another person who serves as an inspiration to me as I learned (and continue to learn) how to live with my Crohn’s even though I’ve never met him: Peter N. Nielsen.
I was already somewhat aware of Peter the day that I browsing through the Border’s in downtown Ann Arbor sometime in the mid-nineties, I had seen him on television with the local NBC affiliate with who he had a regular fitness segment on the news, when I discovered his book “Will of Iron – A Champion’s Journey.” I picked it up because I wondered why I should be interested in his story. Sure, he was clearly fit and a former champion bodybuilder but he was not Arnold or Big Lou. But after a quick look at the book’s cover I discovered that like me, he had Crohn’s – but he sure didn’t look like me. I bought the book and quickly learned of his life story.
He was formally diagnosed with Crohn’s at the age of 15 after being small and sickly most of his life. Shortly after his diagnosis he had surgery to remove a portion of his colon (he has had several more surgeries since then and possibly more) and after the surgery his doctor suggested to his parents that he needed to gain some weight so why don’t they get him a weight set. Well, his dad did and the next thing you know his life was changed.
In his book, Peter explains that he did not think he would become a bodybuilder or be a celebrated trainer – this was the late seventies after all and such lifestyles were still looked upon with suspicion, but that weight set changed a lot of things. Slowly, other influences crept into his life. First, he lived in Brooklyn, NY just a couple miles away from were Lou Ferrigno, already a neighbor “legend” and about to become more so as the “Hulk,” grew up. A cousin who played football at Boston College who was also an avid weightlifter left some “muscle mags” around the house and Peter would find them and at first laugh at why anyone would do that to themselves, let alone get on stage all oiled up. Then he took a weight training class in his last year of high school and he admits that he didn’t try to hard. Illness forced him back to the hospital though and when he got out he made a decision to build himself back to “normal.” He began working out in small basement of the apartment building his family lived in. The bug had bit and soon, he built himself back to normal and then some!
Peter went on to become a successful competitive bodybuilder and after dabbling in that lifestyle for sometime he made the decision to move to the Detroit area and through hard work and dedication found himself as a local fitness celebrity and inspiration to many people, including myself.
Peter has quite a web presence and can tell his story better than I can. If you’d like to learn more about this remarkable man his web site is: http://petersprinciples.com/home/
It occurs to me that although I talk about Crohn’s disease and my experiences with it, I haven’t ever said exactly what Crohn’s is. Well, since it is Crohn’s and Colitis Awareness Week I can’t imagine a better time to explain. By the way, most of the information that follows, as well as much more, can be found at the website of the Crohn’s and Colitis Foundation of America (www.ccfa.org). One of the foremost organizations dedicated to Crohn’s and Colitis research and the search for a cure.
The disease was first described in 1932 by Dr. Burrill B. Crohn and his colleagues Dr. Leon Ginzburg and Dr. Gordon D. Oppenheimer, who were early pioneers of Crohn’s disease and a group of conditions known as Inflammatory Bowel Diseases (IBD) of which Crohn’s belongs too. Compared to the 7 billion people in the world, Crohn’s is rare. Currently there are believed to be about 5 million people with Crohn’s world wide about 1.6 million of them in the USA alone.
In simple terms, Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract caused by a malfunctioning autoimmune system. Basically, my body is acting as if the normal bacteria which is in everyone’s gut is foreign or invading. Thus, inflammation, low grade fever, and sometimes sweating occurs – along with pain (the sweet, sweet, pain…). The diarrhea, which by the way is not only frequent but violent, is the body trying to flush the “invaders” out of the system. In my case, vomiting is often the result of a flare-up. I think that this is because my Crohn’s tends to attack above the large intestine and is thus closer to the stomach and my mouth than to the “back door.”
By the way, when reading about IBD’s, it is important to know that Crohn’s disease is not the same thing as ulcerative colitis, another type of IBD. The symptoms of these two illnesses are quite similar, but the areas affected in the gastrointestinal tract (GI tract) are different. For example, Ulcerative colitis is limited to the colon, also called the large intestine, but Crohn’s can affect any part of the GI tract, from the mouth to the anus and (rarely, thankfully) other areas as well including the heart. Crohn’s most commonly affects the end of the small bowel (the ileum) and the beginning of the colon. This is true in my case and one doctor described my initial x-rays as “classical and textbook” Crohn’s.
Also, it is important to understand the IBD’s, like Crohn’s, are not the same as Irritable Bowel Syndrome (IBS). Two different things and I may go into further detail in a future blog.
While symptoms vary from patient to patient and some may be more common than others, the tell-tale symptoms of Crohn’s disease include, but are not limited too:
Persistent Diarrhea
Rectal bleeding
Urgent need to move bowels
Abdominal cramps and pain
Sensation of incomplete evacuation
Constipation (can lead to bowel obstruction)
I personally suffer from all of the above as well as an overall lack of energy/malaise especially during a flare-up. There have been times when I have been so tired from a mild flare-up (which mine usually are) that I’ll fall asleep early in the evening – 7:00 PM or so – and not wake up until 12 or 13 hours later! When I was first diagnosed I was suffering – yes, suffering – from rapid and unexplained weight loss and loss of appetite. This along with the intense pain are very common first signs of the disease. So please understand that when I, or anyone else you know with Crohn’s, says they are tired – they really are. Likewise, if you notice I’m suddenly listless and not moving or just staring into empty air, there’s a good chance that I’m suppressing some serious pain at that moment. When it’s really bad you’ll see me grimace. I’ve gotten so I don’t usually bend over anymore regardless of how bad the pain is.
The chronic inflammation may also cause a fistula to develop. This is what my doctor has discovered has happened to me. A fistula is a tunnel that leads from one loop of intestine to another, or that connects the intestine to the bladder, vagina, or skin. This is a serious condition that requires immediate medical attention – which is why I’m not on a waiting list for the colonoscopy but got moved to the front of the line. Because of the chronic nature of the inflammation I also have a permanent “narrowing” or “thickening” of my small intestine near the ileum (the most common location for Crohn’s to occur where the small and large intestines join) and scar tissue. There is a good possibility that even if medication can heal the fistula that my symptoms may actually get worse and surgery becomes my only option for relief.
The causes of Crohn’s Disease are not well understood even today. It is known that diet and stress may aggravate Crohn’s Disease, but they do not cause the disease on their own. Recent research suggests hereditary, genetics, and/or environmental factors contribute to the development of Crohn’s Disease.
Crohn’s tends to run in families, so if you or a close relative have the disease, your family members have a significantly increased chance of developing Crohn’s.
The disease is most common among people of eastern European backgrounds, including Jews of European descent. In recent years, an increasing number of cases have been reported among African American populations.
The environment in which you live also appears to play a role. Crohn’s is more common in developed countries rather than undeveloped countries, in urban rather than rural areas, and in northern rather than southern climates. Personally, I suspect pollution of the environment and wouldn’t be surprised if they find that chemicals added to our food play a role.
I hope that this helps everyone to better understand Crohn’s in particular. As I think I’ve mentioned before, I’m one of the lucky people with Crohn’s. My flare-ups are mild and usually short in duration – though I do have some mild discomfort almost all the time – days, not weeks and months. People like Peter K. Vaughan, who I profiled in my last blog entry, have suffered much worse. Though Crohn’s in and of itself is not considered fatal, in the worst cases complications of the disease and/or treatment are.
Peter K Vaughan in his 2011, in what he considers his previous top shape. He plans to better this build!
Peter K Vaughan, just out of the hospital in January 2012. He weighs about 116 pounds here and still not his all time worst condition.
I have mentioned before that my case of Crohn’s is a mild one. Even though it doesn’t seem so to me late at night with my head over a toilet or when writhing on the floor of an airport waiting area, jaundiced and almost hoping for death to arrive (then realizing the awful truth – that it wasn’t coming. Yes, the pain can be that bad) others have had it much, much worse.
Over the years I have known and met others with Crohn’s who have been through much worse than I have and who have also accomplished much despite the illness. One of these people is a young man from Ireland (we met on bodybuilding.com – never in person) whose name is Peter K. Vaughan. Since I have first been in contact with Peter about five years ago his courage and perseverance has inspired me. His Crohn’s is one of the worst cases I’ve heard of and it has effected his life in ways that I will never fully understand. His story, however, is also one of the most inspiring.
Like many of us, Peter had an early interest in bodybuilding and he first picked up weights when he found a set of dumbbells under the stairs in his uncle’s house. He immediately became hooked. However, life had other ideas and before he could start to realize his bodybuilding potential Peter was diagnosed with Crohn’s in 1998 at the age of 12.
Within just a couple years Crohn’s had attacked most of his digestive system, from mouth to anus, and he was in bad shape. His large intestine was removed, his small intestine was mostly removed and altered. His kidneys came close to failure and blood loss was rampant. Plus, the joints in his knees and fingers locked up. So badly that at one point his fingers would curl up and his fingernails cut his own hands. He says that he had so many procedures over the years that he lost track of his operations and medications.
Things were so bad that by age 13 he was having thoughts of suicide. But then he made a different decision. He was not going to let his life be defined by Crohn’s he was going to fight and persevere!
And fight he had to do because Crohn’s was going to go the distance with him. Over the years he has had (in no particular order): ulcers, adhesions, blockages, cysts, fistulas, abscesses, strictures, kinks, tears, tags, pouchitis, and stomas. In addition to the crippling pain that Crohn’s would afflict him with he also suffered through thousands of needle punctures, IV therapies, blood transfusions, collapsed veins, feeding and draining tubes, osteopenia, cracked ribs and even a collapsed lung post surgery! He spent so much time in bed and his muscles atrophied so much that he had to learn to walk and run again. I’m not sure that I’ve even covered all the things that Peter had to endure.
But, somehow, he managed to finish school, and at 17 he was healthy enough to begin growing again eventually reaching a just above Irish average male adult height of 5’10” in his early twenties (many children with Crohn’s are “stunted” during puberty and Peter is shorter than his brothers who are all over six feet tall, but he is a little taller than his father. By the way, the latest figures I found online indicate that the current average male in Ireland is 5’9″ – but men born in the eighties as Peter was are closer to 5’8″) and in 2007 at the age of 20, tired of being known as the “skinny, sick kid” he started to lift weights to improve not only his under 120 pound body but his confidence.
The weights worked. In about two years he had built himself up to a healthy, and healthy looking, 160 pounds. He was able to pursue normal activities again, even traveling abroad. The gym, diet, and disease were no longer the center of his life and he was doing well until in 2010 the unthinkable happened. Crohn’s once again returned into Peter’s life.
He lost all the gains he made in the past several years and his weight plummeted back below 130 pounds. But the worst effect was the one on his mind and his attitude. As he said, “it ate into my mind. It took everything I had to not let it take hold over me all these years later.” In early 2011 a new treatment was tried and he began to recover. He knew what he needed to do: he went back to the gym and refocused on his nutrition. He recovered reaching new gains in size and strength. But Crohn’s was never far away and by the end of 2011 he was once again fading and his weight plummeted down to a frightening 114 pounds. Back to the hospital….and the cycle continued. Crohn’s would knock Peter down for another 15 months and but Peter just got back up again!
Today Peter is healthy again and eating – a lot. You have to eat the calories to put on the mass. He says that he no longer eats for taste, that it’s all about giving his body what it needs to heal and grow.
He now weighs a healthy 166 pounds, his heaviest ever, his strength continues to improve and, as he says, his biceps are back! He has also finished his college studies and his passion for fitness has led him to become personal trainer, with several certifications, and he has his own training company, PKV Personal Training (more information at: https://www.facebook.com/pkvpersonaltraining).
His life has been difficult. His parents were twice told that he might not make it. He fears that more surgery is still in his future and just recently (January 2014) he was diagnosed as having Pineocytoma, a slow growing tumor of the pineal gland in the brain. It’s rate of growth is being monitored closely, of course, but he says “I’m fighting. I’ve seen enough around hospitals to know better. I’m still alive, and so long as I’m here I will do what I can to make the most of things. I’ve grown up fighting, you’d better believe I’m good at it!”
By now you may be wondering, where does a man who has gone through so much draw his inspiration? Well, remember when I told you about his thoughts of suicide at age 13? There’s more to that story. I’ll let Peter tell you in his own words:
“The suicide bit, that was an extremely difficult time, but there was one kid who in many ways, gave me everything I needed to never go there again and to this day I carry his picture. He was a child a lot younger than me at the time. I didn’t know what was wrong with him other than he was dying. He passed away in the bed next to mine one night, and his mother who had always been very nice to me, gave me his picture and asked me to remember him. From then on I never give out about what happens to me. I’m here, he’s not. What right do I have to be upset? He gives me strength to fight on day after day regardless how many times I fall down. He will never know how he has helped me shape my life into something better and I think of him and his mother regularly, even now 15 years on.”
Despite Crohn’s and new threats to his health I think that Peter’s future is bright and that he will achieve any goal he sets out to achieve. And what does Peter want people to learn from his life? Again, I think he says it best:
“I want to inspire others with life illnesses, who go through years of fighting and refusing to step back and admit defeat. I will never beat my illness, I have it for life, but I will not be beaten by my illness, I will live my life my way.”
And you know what? I think he will.
Peter’s happy that his biceps are back. Triceps, too!
This picture shows the extremes his body has gone through. Note the unevenness of his abs from multiple surgeries.
Journeys With Dave 