Category: Crohn’s

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

davidpwahr

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.

Onward!

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

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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.

Onward!

 

 

 

 

Profile in Crohn’s Courage: Peter N. Nielsen

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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/

 

 

What is Crohn’s

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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.

Profile in Crohn’s Courage: Peter K. Vaughan

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Peter K Top Form 2011
Peter K Vaughan in his 2011, in what he considers his previous top shape. He plans to better this build!
Peter K out of hospital Jan 2012
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 K Bicep Jan 2011
Peter’s happy that his biceps are back. Triceps, too!
Peter K body extremes
This picture shows the extremes his body has gone through. Note the unevenness of his abs from multiple surgeries.

 

The Day After…Thanksgiving

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Warning – I deal frankly with some bodily functions in this blog (not graphic but more sensitive types might want to take care)

Okay, so as I mentioned last blog I got through Thanksgiving pretty well. And I was happy as this was the first Thanksgiving ins a while were I didn’t feel sick during or after wards. Understanding now that I have a permanent “narrowing” of my intestine due to scarring from the Crohn’s has given me a different attitude about eating. Keep the portions smaller, eat more frequently (if I’m really hungry) and no more giant meals…which is an issue since I still haven’t been to Tony’s in Birch Run for one of their famous BLT sandwiches (either Google it or follow this link to the Foursquare entry – https://foursquare.com/v/tonys-i75-restaurant/4b1df72ff964a520871624e3).  I guess a doggy bag is always allowed…

Side note: I was never a big portion guy anyway, I remember at the now long gone Trail Duster restaurant while visiting my sister and her husband in Denver, CO that I could barely get through the “cowgirl” steak while my brother-in-law polished off what appeared to be an entire side of beef. I was in awe, and a little in shock – not quite like the old 96 ouncer in the classic movie “The Great Outdoors” with John Candy and Dan Akroyd but close. I tried to look up the menu but it appears that it is no longer served at even the original Trail Duster which is still open in Arlington, TX. They do still cut off your tie after 5:00 PM though!

Anyway, so things were going pretty good yesterday as well. Some mild pain and discomfort but nothing unusual. I ate lightly during the day after a bad start at breakfast. Handy kitchen tip – don’t get a sudden diarrhea attack when the waffles are in the maker and the bacon is on the stove. Or at least turn the bacon off (can you say “extra crispy?”). A delicious turkey sandwich for lunch (by the way, what makes leftover Thanksgiving turkey the best turkey for sandwiches anyway?) and a little leftover Ruby Tuesday’s ravioli for dinner. Then while watching television later in the evening I started coughing.

Now coughing isn’t rare during this time of year and I’ve had a nagging sinus drip for about a week now (no fever, just drip, cough, etc.) and tonight something from my sinuses was trying to go down my throat but not quite making it. As a result my coughing got violent as did my gagging. Well, after so many years of vomiting on a regular basis I think that my guts are just ready to “go” on a moment’s notice and sure enough – upchuck city without even feeling ill! I did have the good sense to move to the bathroom before the moment occurred at least. To me the worst part was that my sinuses still didn’t clear!

The good news, if any, is that the food from earlier in the day did seem to be digesting well as very little solid matter came back up and I would say my gastric juices were working well. No real burning sensation as I had just drank some water a little earlier. All in all, not a bad vomit if I were to rate them – and sadly, I do now.

The point of this post? Not much, just that with Crohn’s you always have to be ready for the unexpected. This is why I sometimes find it tough to go to the movies. I like to sit in the center but also like to have a clear aisle. If I’m feeling a little off I’ll just go ahead and sit on the side so if I need to get out I don’t have to disturb anyone else. I try to take a little plastic bag with me a lot, too – and have even quietly thrown up during a broadway show (at least I hope it was quiet, no one glared or looked at me from what I could tell and they all came back after intermission. Of course it was a good show). And, just like the commercials, I’m always very aware of where the nearest restroom and/or trash receptacle is. Life with Crohn’s, even a mild case like mine, is always an adventure.

Of course, it does make it easier to pretend that I squatted until I puked in the gym!

Onward!

Dave

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I Have Crohn’s (Again)

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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!

Onward!

Dave

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Reflections on a Visit With a Doctor

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I recently started seeing a couple of new doctors (general and a gastro) and I just want to know one thing,when did they start letting teenagers practice medicine? Yeah, I’m officially getting old everyone looks like a kid to me these days…but despite his obvious youth I have to admit I liked both of them (her and him) and am willing to trust them with my overall health care. I especially liked that the first doctor wasn’t sure how to maintain my health with my disorder (Crohn’s) and sent me to someone else who knew more (the gastroenterologist).

Anyway, things went well, and there were no real surprises. Still some of the same old concerns (Crohn’s – which is being rechecked again, overweight, a touch of asthma and now a patch of eczema to add to the ever growing list). Then we started talking about my workout routine – or lack of it. Here’s where the doctor asked me a question that I don’t think a health care professional had ever asked me before: what exercise do you like to do?

Believe it or not, I don’t think I ever really thought about exercise in terms of liking it or not but mostly as a means to an end. Want bigger biceps? Lift. Want lower bodyfat? Run.

So what exercise do I like to do? I’m still thinking about it. On on hand I do like lifting – especially when I’m making progress. There’s a certain thrill from watching the weight on the bar go up, pushing myself against a previously immovable object and then moving it. You know what I’m talking about I’m sure. Plus, you know, the bulging biceps.

Running…eh. Never liked that. But I used to enjoy bicycling (unless it’s on an exercise bike). Then I kind of run out of exercise options. Sure there are the sports, but I don’t really like basketball and most everything else takes some sort of organized team (not too many guys playing games of pick-up rugby/soccer/hockey you name it in my neighborhood). Rowing/canoeing/kayaking I like but you need a river/lake…golf gets expensive…softball is seasonal.  I would like to swim more but don’t have good access to a pool.

I’m in a quandry. What else can I try? I do agree with my doctor when he said “if you don’t enjoy it, you won’t do it.”

So here’s my question for all of you – other than weightlifting/bodybuilding what do you enjoy doing? I’m looking for ideas!

Crohn’s or No Crohn’s – Step One Completed

davidpwahr

Well, as I mentioned earlier my new gastroenterologist wanted to re-check to see if I really had Crohn’s.

 

Twenty some years later - about 100 pounds heavier (fat and muscle).
Twenty some years later – about 100 pounds heavier (fat and muscle).
Me shortly after beginning treatment for Crohn's, smiling with food!
Me shortly after beginning treatment for Crohn’s, smiling with food!

 

Crohn’s is the disease which has in part defined who I am for the about 30 years now. I have mixed feelings about the possibility of no longer being considered a Crohn’s sufferer for several reasons. But, one of the biggest is simply because if it’s not Crohn’s then what the heck is wrong with me?

I have many questions, such as:

Q – Could it be something worse?
A – Not likely as it has not gotten worse over the past three decades.

Q – Can it be treated differently if it is Crohn’s?
A – Possibly.

Q – Is it possible that whatever the problem was years ago has gone away?
A – Maybe…but not completely based on how often I do get sick.

But these are not the point of this post. I’d like to talk a little about my first CT (CAT) Scan tonight at the University of Michigan Hospital.

First off, I’ve gotten to know this place better than I’d like to. This is where, despite excellent care, my father passed away much too soon and every time I walk in memories come flooding back.

Second, I do feel that I get great care through UofM and that’s why I’m still with their health system. I’ve never had a CT Scan before, though I had a MRI, and the prep wasn’t much different. No eating 4 hours before, no drinking 2 hours before, and don’t wear any metal.

I arrived an hour before the actual scan as requested and after making my way through the cavernous B1 level I checked in at Radiology Reception A (I think they go up to D). The clerk checking me verifies that I’m me and then says, “just a minute you need to drink something before your test.” Not unexpected, what was unexpected was that there were actually three drinks all together about 60 ounces…more on this later.

At 6:25 I went back to the men’s changing room to wait for the nurse. Since I arrived in sweat pants and my favorite “Summerfield Bulldog” t-shirt I had a chance to finish the third drink and look around. On the table was a journal where patients could write down their thoughts to leave for others. I looked through this journal and almost cried reading some of the comments left by cancer survivors, those waiting diagnosis, and one defiant entry from a Crohn’s sufferer who said that he was not going to let this disease get him down or rule his life. Regular people coping with unusual struggles…very cool. I, of course, wrote nothing.

The nurse came in to attach my IV and noticed my handsome shirt and said, “oh, you’re from Summerfield?” I said, “no Petersburg actually…” and prepared to explain why the school’s name was different than the city’s and she said “Sorry, that’s what I meant. I’m from Deerfield.” Which is the town across the river and 3 miles down the road. Small world!

Back to wait for the tech, a pleasant young man who escorted me into the scanner room. He explained that I would like the CT scan better than an MRI as the unit is much more open and the test wouldn’t take as long. He had me lay down and attached the IV to the “contrast” chemicals and said, “now you’ll feel warm in about 30 seconds.” I said, “that’s okay it’s a little chilly in here anyway.”

Well, within 20 seconds I started to feel flushed – interestingly in my nether regions first (I thought I was wetting and messing my pants) and then it felt like Satan had decided to give me a taste of Hellfire! Warm, indeed. But it was over in just a few minutes. A couple passes through the machine and I was on my way. However, just about the time I passed the first restroom those 60 ounces of liquid decided that they needed to get out. I’m not sure what the stuff was but I’ve had enemas which were less effective! But, about 15-20 minutes later I was able to leave the restroom and head home…

Not much of an adventure but possibly an important one. Now we play the waiting game for the results or “Hungry, Hungry, Hippos.” Your choice.

Onward!

 

 

Changes…

davidpwahr

Well, for those of you who are friends of mine on Facebook and longtime friends here you already know this but this is for anyone else who happens to stumble upon my infrequent blogs…

About 30 years ago I started to lose weight for now reason. This was accompanied by an intense pain in my gut that seemed nearly constant. Within a matter of 2 or 3 months I went from a relatively healthy 180 pounds (at 5’11”) to a clearly unhealthy 140. All the muscle mass I had worked a couple years to put on was gone almost overnight. Vomiting and diarrhea were the norm for me. Well after many medical tests – most of them uncomfortable at the very least – the diagnoses was in. I had Crohn’s.

Now this was much better than my worst fear which was that I had cancer. My family was worried, my co-workers were worried, my friends were worried, and so on. The good news is that I was given some pills (sulfasalazine and prednisone) reacted well to the medicine and within weeks started to put the weight back on – and then some. My doctor’s instructions at the time were to take one of the sulfasalazine pills each day and the prednisone only for my worst flare ups. This treatment seemed to work and unlike so many other Crohn’s sufferers – some who are friends here on Bodyspace – my life was pretty normal. I’ve actually gained too much fat (along with a fair amount of muscle by the way) and flare ups have been few and far aweigh.

My treatment was coming from my primary care doctor and I never saw a gastroenterologist in all those years until last week. And he pretty much rocked my world. After discussion he said, “I’m not sure you have Crohn’.” I said something along the lines of “Whaaaaaa?” and he went on to explain that though my symptoms are Crohn’s like that the dosage of the medicine I took at best had a placebo effect and that there are many other conditions which mimic Crohn’s and we know so much more today. My colonoscopy a few years ago was so good (yay) that there is no indication of anything odd in my gut.

We are starting from scratch. I have a CT Scan scheduled for next week. IF there’s evidence of Crohn’s I get to have a biopsy taken. If I don’t, well, we don’t know yet.

So this thing, as bad as it has been, has been part of my life for three decades. I didn’t like it but it had a name and in many ways has become part of my identity. I’m not really sure how I feel about possibly not having it any more, but if what I do have can be cured…well, I’m all for that.

Oh, and once again my job is in jeopardy. The College I work at is about to go under a “fiscal watch” by the state, we are all getting another pay cut and lay offs will be announced in January. So, I’ve got some interesting stress in my life right now.

How’s everything with everyone else?

Moving forward…