Well, my health journey continues with mixed results. I had my appointment with my gastro doctor to talk about my latest tests, discuss treatment, and to take some more blood for additional testing. We agreed that the best way to avoid future surgery was to start some new drugs one of which is Humira, which seems to be the latest “wonder” drug, and the other being Imuran (aka Azathioprine). I can’t start the Humira until my test for Tuberculosis comes back but he thought I could start the Imuran right away.
For those who don’t know, Imuran is an immunosuppressive medicine used to treat a variety of immune diseases to reduce the activity of the specific disease which in my case is Crohn’s. There are side effects, of course, but the biggest concern is that by it’s very nature it reduces the white blood cells in your system. Well, I leave the doctor’s, go to the pharmacy and pick up my prescription and take my first pill. Then it was off for an afternoon of filming “Necroland” (I’ll eventually be listed as a cast member on ImDB!).
As I was heading home from filming the doctor calls (don’t worry, I wasn’t driving) and he tells me that I should stop taking the Imuran. He had some of the lab tests back already and apparently that on top of my vitamin D and calcium deficiency my white blood count is already very low – as if I was already taking the drug. He’s not sure what to make of this and it may be a testing error but for the time being, and to keep me from getting sick with something else, we need to be safe and keep me off the drug. We may also have to hold off on the Humira but won’t know more until the rest of the tests come back in.
The good news is that I’m feeling pretty healthy for the time being (occasional queasiness and bowel issues but nothing major since last December) and I don’t have any other symptoms for some of the horrible diseases which a low white cell count might indicate (Google, a friend and a foe at the same time). So, we’ll keep on taking test and see what develops.
Oh, and I’m anemic – due to the Crohn’s – and really need to take my iron every day which I hate. If anyone has found a brand that doesn’t upset their gastric inner workings please let me know!
On the fitness front, things could be going better but I’m staying within my calorie goals and this morning my weight is back down (last week I was up four pounds). Strength could be better but I was able to increase weights in several lifts and am feeling confident enough to move back into the free weight room with the “big boys.”
This is the last week of my fitness challenge with a couple of friends. I’m not sure how they are doing but I have high hopes that I’ll win based on my weight loss alone. I haven’t seen much improvement in my various measurements though my pants are clearly looser my sleeves aren’t getting tighter. I’ll of course let you all know how that turns out.
Well, two days ago I underwent yet another colonoscopy to determine if I really have Crohn’s or not. This time it was a “double balloon” procedure. I’m not entirely sure how the device worked but the upshot is that the doctor and his team were able to go further up into the small intestine than before. The prep for this procedure was more difficult than before as it required two full days of the “clear liquid” diet. It’s been a long time since I’ve been as hungry as I was after the procedure!
The good news is that the procedure was successful and I got through it without any difficulty, at least so far as I can tell. I was completely unconscious for this one as the “twilight” drugs used previously aren’t sufficient as this procedure is more painful than a standard colonoscopy. The bad news, the fistula which my CT Scan indicated still was not found. So it is likely that I’ll now need an upper endoscopy to see if they can find the fistula.
Biopsies were taken again. It will take a couple weeks for the results to come in and before we know if Crohn’s is proven definitively or not. Once again, there is internal evidence of the damage that the Crohn’s (or whatever) has done but until the biopsy it is all “theory” I suppose.
Of greater concern is the fistula which cannot be found. From what I was told earlier I believe it is likely that I will need surgery to remove it, but if they can’t find it…well, no operation on something that can’t be confirmed.
Other good news is that for the past month I haven’t had any flare-ups (knock wood). Since the procedure I’ve felt a little “tender” but nothing debilitating.
So, for now I play the waiting game…
Onward!
PS – workouts have been going well and the extra weight is coming off slowly but surely!
It is customary, it seems, at this time of year to take some time to reflect on the previous year and to make plans for the next. And though it may seem cliche I do have to say what a difference a year makes.
2014 started out without much hope or promise. Yes, my family and I tried to celebrate as best we could that New Year’s Eve but the reality was we were going through the motions since the day before we had just buried Dad. Our lives, like anyone else who has suffered major loss, will never be the same. Then the weather seemed to go crazy on us and the snow just kept falling. I work at a college and for the first time since I had started there we had multiple snow days – there was not one week in January were we worked the full week in fact. Though we all like an occasional snow day, it was getting ridiculous and creating more stress knowing that nothing was getting done (and still being held responsible for this by our customers even though they too could not get out any more than we could).
Spring brought hope and some relief. It was my niece’s final season with the University of Michigan Softball Team. Though they played well and fought their way to another Big 10 championship the NCAA crown eluded them. Still a great season by any measure, but a little heartbreaking as well as we knew that we would never get to cheer Caitlin on to a Women’s World Series Championship (which, come to think of it, most families never do get to do for their players).
I lost a close election in my theatre group and for the first time in well over a decade I found myself not on the board (I was off the board for a year by choice during this time though). I was okay with this, because that’s how elections go, and I had plenty of other things to keep me busy (the Community Theatre Association of Michigan board of directors, Masons, Church) and frankly could use the free time. Still, it felt odd.
The summer was okay, but nothing special until July when I attended a play writing workshop offered by CTAM and conducted by playwright Jim Henry . This was the creative spark that I needed to get writing again. I was enthused about my off stage work again and currently gave two plays which I’m working on with the goal of getting paid to have at least one play produced this year (a rather ambitious goal actually, but I’m going for it).
The summer was unusual in that I didn’t even get on a roller coaster – and I love roller coasters – until the fall this year. The good news however, was that my Crohn’s was pretty much inactive (yes, there was the occasional flare-up but nothing out of the ordinary).
Then in the late fall my world began to shift. Things weren’t going so well at work (declining enrollment at the college among other issues), but things were going well with my professional association, acting, playwriting, and other aspects of my life. I left the CTAM board (term limits you know) and even more time became available to me. Then I went to see a new doctor and he said, “I’m not sure you have Crohn’s.” You can read more about this in earlier blogs but the effect of suddenly not having the thing which, for better or for worse, had defined me for nearly thirty years was surprising. I felt liberated and then happy. For the better part of November when someone asked me how I was doing I would respond with “I’m unreasonably happy.” I can only attribute my good mood to the idea that I might not have Crohn’s. I was no longer a slave to a daily pill. Of course, I knew that there was still something wrong but I think I actually had hope that something could be done and I might get better.
Of course, there have been tests and now the doctor is 95% sure I have Crohn’s but we need yet another test to get a biopsy. And he seems to be hinting, strongly, that surgery is probably in my near future – if they can actually find the fistula and Crohn’s which the CT Scan indicates is there. But, again, I’m not upset by this. I’m actually still hopeful that something can be done.
So, I’m ending this year I think on a high note. My faith in God has been restored. I like blogging and finding a new community of fellow “Chronies” as well as a new audience. . My Facebook “Get Fit and Healthy” group seems to be thriving with new members who are embracing the idea that we are all more successful together and put up with some of my random posts which do not interest them (but of course, interest me). I’m committed to getting healthier than I’ve been for several years in terms of weight and muscle tone. Things are getting better at work, because I have very supportive bosses and staff, and I’m developing other avenues to explore which may allow me at some point to be less dependent on a “regular” job in the future or at the very least provide a few extra dollars (the threat of layoff is very real this coming year). And most importantly, in many ways I’m closer to my family, including cousins, than I’ve ever been even if we are separated by miles.
Loss is always painful and some losses we never recover from. But, even in loss there is something to be gained, even if it takes a while.
And I think that this is the lesson for me from 2014.
May you all have a Happy and Prosperous New Year – onward to 2015!
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.
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.
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 