Crohn’s Update: July 2016

Wow! I knew I hadn’t been blogging for a while but I didn’t realize it’s been 3 months. I’ve been busy I guess but I haven’t forgotten my fitness goals and efforts. So, here’s the update for those interested:

Crohn’s – doing well. The Humira treatment seems to continue to work. I wouldn’t call what I’m experiencing full remission, but it’s close. I’ve had a few “queasy” days this summer but nothing major to keep me off work or anything. I’m due for another round of testing/scanning/probing this fall and I expect that I’ll here that my condition remains essentially unchanged from last year. Which would be the best news I could expect (the damage can’t be undone, but if further damage is prevented that’s all I need to keep avoiding surgery).

Fitness: I did pretty well again, for me, with the Rose Run 5K that I’ve been participating in. I beat my time from last year thanks in large part to the urging and support of my niece who ran with me. So this is the third straight year of doing better than the year before! My new goal is to get below a 30 minute 5K. I came in 4th in my age group with 5 behind me by the way. My official time was 41:55 and I’m several minutes faster than when I started 5 years ago. Not a huge change, but a positive one. Especially given how little I actually train for it.

I’ve been keeping up with my weight workouts with my brother-in-law. The weight is going up, my body weight is going down (usually), my waist is shrinking and my biceps are growing. Things are on track in this area.

I participated in a “22 Push Ups for 22 Days” to raise awareness of Veteran Suicide. On average, 22 vets in the USA commit suicide each day. This was a pure awareness campaign but I thought an important one. Plus, doing the push ups each day really seemed to up my feeling of well-being each day. I’m continuing to do them even though the challenge is over. I’m planning to work my way to 100 per day (in one set) by the end of the year.

Mountain Climbing: as a benefit of my increased fitness I took on the challenge of climbing the 2nd highest mountain in the contiguous USA (Mt. Elbert) when visiting Colorado this summer. Unfortunately, I only made it to 13,000 feet and was about 1,400 vertical feet short of the summit. It was a fun day nonetheless with a couple cousins who live in Colorado (they made the summit). The thin air was too much for me – or rather not enough for me. Next time, I acclimate at a higher elevation for several days. Next goal though is to fail to summit the highest point in the contiguous USA – Mt. Whitney in California.

Nutrition: as mentioned earlier, my weight has been decreasing. But, in my continuing quest to build muscle while losing fat I’ve been experimenting with my diet. My most recent experiment was to reduce my carbs significantly and increase my protein. There have been some conflicting studies on the effectiveness of this. But, I’ve known a couple people who really dropped the weight while doing this and my limited experience so far is that it does work. I’m still playing with how to add some carbs back in occasionally, since they have a place in the overall healthy diet and maintaining daily “energy,” so more on this later.

Mental Health: overall, I’m still a happy and positive person. Sure, I have my moments like everyone else, but I don’t have much to complain about. My “new” job is going well with supportive co-workers and supervisors, my friends are few but close, my family closer and my faith is strong. The only thing that threatens my well-being right now is the back and forth bickering on Facebook concerning the presidential campaign. Just a few more months…

So, overall things are good. I feel healthy, I look healthier, and I’m more active than I’ve been in a long time. Old age is still creeping up on me (I notice more daily aches and pains) but I’m putting it off as long as I can and hope you will do the same.



Crohn’s Update: February 2016

It’s been a while since I’ve updated you all (or at least those who may be interested) on how my life with Crohn’s has been going. In brief: very well!

I did have a small flare-up in January which lasted two-three days, but it was mild even by my standards (no vomiting, “controllable” diarrhea, a lot of grumbling, gurgling, and gas). So, the Humira seems to still be doing the job.

I’m taking my vitamins each day (B12, Iron, Calcium, D, multi-vitamin) as per my doctor’s recommendations, and I’m trying to pay much, much closer attention to my diet. My macros are still off as I’m getting more fats than proteins but I’m getting better. I have been in touch with another fellow “Crohnie” though and he says that when he flares up he finds that the fatty, greasy food seems to go down better just like I do. I haven’t seen anything in the literature about this, so it may be imagination, but it was good to hear that someone else has the same experience I do.

Everything else is going fairly well, too. My new job (which I’ve started in September) has been enjoyable and I feel that I’m in the swing of things with a supportive supervisor, staff and colleagues (always a plus), I’m keeping up with my workouts for the most part, and I’m in a play again with a different theatre group which is turning out to be a real joy (“One Slight Hitch” by Lewis Black at the Toledo Repertoire Theatre, February 12, 13, and 14 – for tickets and showtimes).

My spirits are good and I’ve found time to take some vacation time with my family (New Orleans over Winter Break and a weekend in Chicago with my brother last weekend). So I’m certain that the relative lack of stress right now has helped to keep things calm in my digestive track.

Goals for the new year are pretty much the same as always: health and happiness. Looking to lose fat, build muscle, etc. like everyone else. I do want to also spend more time with my spiritual health and get back to being more studious of the Bible and my faith. I think that this helps with my overall calmness and happiness as well. Probably very important in the coming year. Election season you know…




Fitness and Crohn’s or No Crohn’s Update

Well, after another week of staying within my calorie goals, increased cardio, exceeding my daily steps, and the weight room what’s my reward? I’ve gained 4 pounds…

However, my waist is slightly smaller (half inch), I’ve lost some size on my chest, which I presume is fat loss, and my arms are a tad bigger plus my bodyfat is down 3% and though not at an all time low I’m almost there. Hurrah!

In the gym my lifts are increasing and I’m feeling stronger each week – not quite back to my old form but making progress. Feeling pretty good the day after my workouts as well and actually felt pumped after my last workout this week (how I’ve missed that feeling).

By the way, since I started to not trust my usual scale I’ve moved to what I’m calling  “Dave’s Three Scale Method” (trademarked!). This consists of weighing myself on my usual Tanita electronic scale, and older model Tanita scale and a “regular” bathroom scale ($7.99 at major discount retailers).

On both the electronic scales my bodyfat is down (good). On the older electronic scale and the “regular” scale my weight is down as well – though the “regular” scale still shows me as 10 pounds lighter than my usual scale. I used the scale at my gym this week once as well – a supposedly more accurate “balance” scale. That one is broken as according to that I’m wasting away at an alarming rate and am well below 200 pounds close to my “skinny” high school weight (no way true).

In continued Crohn’s news, after 30 years of believing I had Crohn’s my belief has been confirmed. I have Crohn’s. My doctor has recommended that I now start taking Humira because though, according to him, my symptoms don’t really suggest it the colonoscopies show that my Crohn’s is not mild as I’ve thought. It’s actual more moderate to severe based on the damage already done. So, in an effort to continue and avoid surgery he thinks we need to get me into a full remission (or as close as possible). I’ll know more on this next week after I meet with him.

The adventure continues – onward!

Fitness Quest: January 25, 2015 Update

It’s been awhile since I last posted, mostly because January is one of my busy times at work and between work, working out, and other activities for the past couple of weeks I just haven’t felt like blogging! Things are slowing down now and I can once again start to gather my thoughts and update on my progress or lack thereof.

The good news is that I’m making good use of my UP 24 (by Jawbone) band and changing several habits – mostly taking the long way around when walking and trying to add more steps instead of saving them. I need to be purposeful in keeping up with walking and moving on weekends, but during the week I’ve had very little trouble getting in at least 10,000 steps per day. I’m also back to the gym. The first couple workouts left me a bit sore, as expected, and I actually welcomed the tightness which followed – as well as the pump during the workouts. As I’m sure some of you are aware, it’s good to occasionally flex and feel like something is being flexed!

I’m doing very well with my diet, too. I use MyFitnessPal and have logged everything I’ve put in my mouth each day for about a month now. It has become habit and has helped me to make better choices. I have to say that I miss my Little Debbie though…and Krispy Kreme…and…well, you get the drift. However, there are better ways to use all those calories than one or two (or three) fatty treats each day. Oh, and this morning I was told by my Pastor that I looked thinner! I’ll choose to believe that he was talking about my waist and not my chest and shoulders.

Downside, I seem to have reached a fat loss plateau of some sort. My weight is edging down much slower than my exercise level and calorie intake should be creating. I’d like to think it’s because I’m putting muscle on as fast as the fat comes off, but that would be wrong (probably). Nothing to do but to stay consistent and keep upping the cardio.

Emotionally, I’m doing good except for the sadness and depression which followed the death of my cousin John this past week. He was three days older than me and born with Down Syndrome. Despite this he led a good life. He had a strong sense of humor and loved his family deeply. We had much in common including that we both enjoyed Star Trek and Scooby Doo. I will miss him greatly.

Upcoming for me this week a “double balloon colonoscopy” to further investigate my Crohn’s. This treatment will involve a two day prep and I’m on a clear liquid diet starting Tuesday and a full day of bowel “cleansing” on Wednesday. I’ll post more on this afterwards on Thursday (after I wake up that is).


Fitness Quest: Looking Into the New Year

Well, back to work today and back to the normal routine. . At first I was worried I didn’t get done everything I wanted to get done during my holiday, but I did get to spend quality time with family, establish some new healthy habits (another 10,000+ steps today – a six day streak) and cleared my head about a few things. So I guess all in all not a bad holiday break.

Looking forward into the New Year I have quite a bit to keep working on. My diet needs to be cleaner, leaner and more “natural” and by that I mean I need to prepare more of my own food and eat out less. It’s just healthier in general and I think with Crohn’s the closer you can get to natural foods the better anyway. A friend sent me an article on one woman’s experience of going Vegan with Crohn’s and it worked well for her. I don’t see myself going that far, or even vegetarian, but I do see more leafy greens, veggies in general, and raw fruits in my diet.

I’ve started working more on cardio fitness for many reasons. One, I’d like to live well into old age. Two, it’s easier to finish 5Ks when you are not gasping for breath.

I’ll be hitting the weights again. I’m not getting any younger and my body seems to remind me of that each day in new and interesting ways. Plus, I kind of like the feeling of my sleeves being just a little snug…

Creatively, so much to finish. Ditto concerning my professional life as well. All in all, another typical year but this time with an atypical outcome!


Crohn’s or No Crohn’s – A New Wrinkle

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.


A Day in the Life of a Crohn’s Flare Up

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.


I Have Crohn’s (Again)

Well, the CT Scan results are in and unfortunately they showed what I expected they would show. After nearly 30 years I still have Crohn’s…

No surprise to me, though still a little disappointing as the doctor really suspected that I did not have it. On the plus side though I had the rare privilege of having a doctor say “I have to admit my suspicions were wrong.” Wrong? Did he just admit he was wrong about something and i was right? I almost asked to see his Med School transcripts! Of course he isn’t a surgeon so maybe it’s okay for him to say he was wrong. And heck, no need for the tests if doctors are always correct, right? But, as I so often do, I digress…

So, I have Crohn’s no surprise, but there is some bad news. The Crohn’s is more advanced than I thought. In addition to some permanent scarring and narrowing of my intestine there is also at least one fistula. A fistula is basically a “shortcut” that my bowels have made to avoid the narrowing, a new opening where there should not be one. It’s a bad thing and we need to do something about it.

There are two ways to treat it: 1) by medicine, which ironically could make my symptoms worse as the fistula heals and food goes through the narrow section of the intestines; or 2) surgery.

I’m not a fan of surgery, given the inherit risks of being cut open, anesthesia, infection, etc. But if my symptoms worsen under the medication (which also comes with risk) surgery may be the only option.

Am I disappointed? Yes. Am I upset? Well, it’s hard to be upset about something that’s been part of me for so long and I’ve also actually been quite blessed to have had such a mild case of Crohn’s. I know several young men and women who have been struggling for a short time compared to me but have already undergone surgeries. Who cannot gain weight (fat or muscle) because they are simply too sick. My Crohn’s has been inconvenient and sometimes embarrassing but for the most part my life has not been altered because of it and there is no reason to suspect that this will change.

I just have to remind myself of this each time I wake up in the middle of the night to vomit or have diarrhea which last for what seems like hours and worse, often in a public restroom…the frightened looks I sometimes get when stepping out of a stall….priceless! And let’s not forget the constant gurgling, burping, and uh, other emissions.

However, on the brighter side, the CT Scan also revealed that except for the Crohn’s my insides are “unremarkable” and that, as Martha would say, is a very good thing.

Next up, colonoscopy. I bet you can’t wait for the blog on that!



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