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!

Crohn’s or No Crohn’s: The Quest Continues

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…


PS – workouts have been going well and the extra weight is coming off slowly but surely!

Crohn’s Holiday Update

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.

All in all, I’m looking forward to the New Year.


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.


Crohn’s or No Crohn’s – Step 2 Complete (Colonoscopy)

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.