Stoma – Journeys With Dave

Crohn’s Update: Surgery and Post-Op Condition

April 29, 2019December 16, 2019davidpwahr

Warning: as usual with my posts regarding my struggles with Crohn’s this post contains frank discussion of basic bodily functions not usually discussed in polite company. If talk of peeing and pooping make you squeamish, you may want to just move along.

Those of you have read my previous post know that I had gone into the hospital to have what the medical staff referred to as an “ileostomy takedown” or in other words, my internal plumbing was reconnected and all organs that belonged inside my body (the stoma, which was a portion of small intestine pushed out through my abdomen for the removal of waste via an appliance aka “the bag”) were put back inside. This is an operation I had been looking forward to. Even though the creation of the stoma quite literally saved my life, it was an inconvenience to deal with – some of the issues I have described in earlier blog entries.

So, how did it go? Pretty well actually. According to the surgeon the surgery could not have gone better. Unfortunately, this does not mean that there were no issues. The biggest one, from my perspective, was that the epidural given to me to control pain also caused an issue where I could not release my bladder. You see, the epidural provided strong drugs to my mid-section which essentially turned off nerve receptors. The good news is that thanks to this treatment I was up and around pretty quickly. The bad news, I couldn’t urinate. This led to not one, not two, but several different catheters being inserted into my uretha – an uncomfortable procedure at best and in my case painful as apparently one of the times my uretha was “nicked.” As bad as not being able to go was, the sight of blood coming out of where blood should never come out was a bit unnerving to say the least. Plus this caused some pain in my you know what, which prevented me from trying to go. At one time the urine back up was so bad that after one catheter I released 1.2 liters of urine. For comparison, the average male bladder maxes out as about 400 – 600 milliliters. My bladder was pushed to its limit. This extended my hospital visit by a couple days as they wanted to be sure that my urinary function was normal before sending me home.

Well, that and the unexpected vomiting.

The third day post-op my gut seemed to be waking back up. I didn’t actually pass gas or stool yet, but my bowel sounds were active. In fact, one nurse said my gut sounded “hyperactive.” Which usual meant that things were starting to move through my system again and my long unused colon was waking up (so to speak). Wrong. Just as I was about to try to eat some lunch my guts went into full revolt. And very much like the girl in the Exorcist I began spewing everywhere! Since I hadn’t eaten much what came out was a build up of gastric juices and other liquids. The good news is that I learned I could still move quickly despite any lingering internal pain, the bad news is that we discovered how much liquid I could hold in. Turns out, quite a lot.

After these two setbacks, things started to improve quickly. My bowels began moving on day 4 PO (post-op), pretty much pure liquid but I was passing stool and gas. My bladder kicked back in later that same day thanks to some Flowmax and the discontinuation of the epidural. So by day 6 PO I was able to come home.

Now, one day shy of three weeks post-op, my stool is still pretty liquid with signs of solids every now and then. Still going more often than I’d like, but it’s way more controllable than the stoma was – plus no more bag to change frequently and more importantly, no accidents since my surgery. My staples have been removed and my new scar is healing. I have a shallow hole where my stoma used to be which is getting shallower by the day.

Still several more weeks before I can lift anything heavier than a gallon of milk, but I can walk and stand upright. I even have permission to get on my exercise bike and next week I’m going to ask about being allowed to work from home so I can at least catch up on emails. Things are looking up and I have no regrets about undergoing the surgery.

Physically, I did lose some weight again through the ordeal and am now at about 190 pounds. The lightest I’ve been in some time. Given how fast food is still flowing through me, I may get down to the mid-180 range before things settle down. The good news though is that my bodyfat% seems to be dropping in relation to my muscle mass. So though I’ve lost some of both fat and muscle, the fat loss has been greater. I’ll be in a good position for rebuilding once I’m able to lift again.

About 3 weeks post-operation. My shoulders seem to have lost some mass again.

Arms are a little smaller and flatter, too. The shirt I’m wearing used to be much tighter and now I have the dreaded sleeve gap.

Onward!

Crohn’s Update: Wash Your Hands People!

April 7, 2019December 20, 2019davidpwahr

If all goes well my life as an ostomate comes to an end on Tuesday, April 9th when my ileostomy is reversed and my colon starts to be used again as God intended.

I would be lying if I said that life as an ostomate was easy. There were many challenges, the most difficult and dangerous one being dehydration. In fact, I ended up in the emergency room and a several day stay in the hospital about two weeks ago because of the norovirus and the fact that I didn’t realize I was having diarrhea until it was almost too late.

I had noticed during the day that my output was hiring than usual and that I was thirstier than normal. Because I happened to be at a church conference I more or less ignored this and kept attending to the business at hand. I was drinking, but I didn’t take any additional loperamide HCI (aka Imodium) or other medications that might have slowed down the fluid loss. By the early evening I was starting to feel a little unwell. So, I had some applesauce and rice krispies. I ate a banana, I took the loperamide and drank more water. But it was too late. Chills set in and then came the cramps.

It started with a leg cramp and I thought I had been sitting in the chair funny. So I tried to walk it off. Then the other leg cramped up, then my abdomen – I realized something was horribly wrong and thought I might actually be having another heart attack. So I went to the nearest phone by my bedside and reached for it as I collapsed into my bed thinking “Oh God, this is it.”

I woke up next to my bed, phone in my hand and buzzing at me, items from my nightstand scattered on the floor around me. I was so out of it I didn’t realize that I had actually passed out. I managed to call my sister, who was just getting home from helping my mother – who had also fallen ill (we surmised later that we both caught the norovirus from the same source).

We got to the emergency department of the University of Michigan Medical Center quickly. In hindsight we probably should have called an ambulance as the cramps hit again and I passed out not twenty feet from the entrance.

Pro-tip: want to pass by the waiting room at the Emergency Department? Pass out in their parking lot. I was whisked in pretty quickly. After receiving the excellent care that I am used to from Michigan Medicine I was re-hydrated and my cramps stopped. No cardiac event, but my kidneys had shut down from the stress – that’s how badly I was dehydrated.

Moral of the story?

Ostomates – always pay attention to your fluid intake and output. This can literally be a matter of life and death.

Everyone else – for pity’s sake wash you hands after using the restroom. Norovirus is easily spread in the most minute traces of fecal material. This spread is easily preventable by properly wetting your hands, sudsing with soap for an appropriate amount of time (try singing “Happy Birthday” to yourself a couple times) and drying. When you skip this step you may think you are somehow avoiding germs by not touching things in the bathroom, but you are making the rest of us sick when we shake your hand or come in contact with you later. Especially those of us with lowered resistance due to a compromised immune system. Like all of us with Crohn’s, Ulcerative Colitis, and who knows how many other invisible diseases and the medications we are on.

Please, please, wash your hands. The life you save might be mine!

I’ve learned a lot during my time as an ostomate and I have a greater appreciation and respect for those who cannot have theirs reversed. I hope in some small way I’ve helped you to better understand this experience as well.

Onward!

Fitness Quest: The Consequence of Measuring Muscle Mass

October 30, 2018December 20, 2019davidpwahr

So, in my constant quest for greater fitness I thought it might be fun to engage a couple friends in a challenge to see who could lose the most body fat in the next few months (by the start of spring). I decided that I should switch out my trusty Tanita scale that I’ve been using for some years with a Taylor scale that I’ve also been using on and off (to paraphrase that old saying: a man with one scale knows how much he weighs, a man with two is never sure). The reason being because though both scales measure body fat percentage – and are pretty close in their measurement – the Taylor scale has a few more

Scales — The Tanita and Taylor scales – both good

features including a calculation of hydration and muscle mass, all of which are uploadable into an app for easy tracking. For the challenge we have decided to use waist/hip ratio as our measurement tool, but I thought I’d follow my progress on the scales, too. Since I do weigh myself everyday anyway.

The “new” scale works nicely and as I said the body fat percentage corroborates with the other scale. But, today I took note of the other measurements. Fat mass was where I expected at about 25% (needs to be under 20), body water at 59% – a little dehydrated which isn’t surprising since my colon isn’t there absorbing water anymore since my ileostomy – and my muscle mass was at just over 30%. Now, you’ll notice that these percentages added together total more than 100%. I haven’t found it in the documentation yet, but I suspect that the body water figure is independent of the other two and is calculated off the remaining body mass (organs and skeleton). So, based on these readings my body is a little over half fat and muscle. So far so good right?

Well, I then wondered how my muscle mass compared with the average guy – you know, because we guys are all about measurements and comparisons with other men (to prove we’re better). Since I’ve been working out I’ve always assumed that I had more muscle

mass than most men. I know that my arms are larger, even now in their “depleted” state (a little over 15″ in circumference compared to the average untrained American male who is around 11″) they do flex and do not jiggle when I move them. I once benched 350 pounds and still am capable (I think) of a one time max of more than my bodyweight. Good for anyone, great for a man of my “advanced” years. Plus, you know, I have done squats in the past, too keeping my lower body pretty fit – even with too much fat around the hips (you should see the definition in my “marching band” calves).

So off to Google I go and search for “how much muscle does the average man have” and imagine my surprise to find out that according to my scale I not only have less muscle than the average man (about 60 pounds compared to livestrong.com’s average of 72 pounds). I thought, “okay, but surely my percentage is higher.” Nope…

Not only am I low for the average man, I’m low for a man my age and older! How is this possible? I was only in the hospital for a week and recovery for six weeks. Can muscle mass be lost that quickly?

Now, I did come out of the hospital 20 pounds lighter than I went in. This would equate to a loss of about 2 pounds a day for my 10 day stay, but most of the weight loss was early. I never figured out why it was so much, as I doubt that a meter of intestine (the full length of my ileum) weighs that much since it’s essentially a hollow tube of muscle and skin. Maybe it was because of all the stuff that was leaking into my abdomen was no longer there, a lot probably water weight, and maybe an incidental “liposuction” when they cut through the fat and muscle to get to my innards. I just didn’t know. However, I felt that when I cam out that my chest and shoulders had disappeared on me. Could I

Me in hospital — Me shortly after surgery in August 2018

really have lost that much muscle that quickly? Or is my scale wrong. Did one operation undo 30 years of weightlifting and bodybuilding?

I think it will be interesting to see what happens over the course of the next few weeks and months as I continue into my workout routine. I will admit that I wasn’t doing a lot prior to the operation but I was lifting twice a week and getting in some cardio. Plus, there was the cardio rehab I had just finished earlier in the late spring. Muscle memory is a wonderful thing, but we all know that as we get older we don’t bounce back as quickly as we did before.

In fact, most studies indicate that as we age we lose a significant amount of muscle with some, if I recall correctly, suggesting men lose as much as 10% of their muscle mass for each decade after 40 (or earlier). Most studies also suggest that this loss is as much due to inactivity as anything as we tend to move less as we get older and that working out becomes less of a priority when family and career get involved (thus the rise of the so-called “Dad Bod” someone with some muscle on them but it’s covered in a layer of fat).

However, there are also studies that suggest that this muscle loss can be slowed if not completely reversed. That, contrary to popular belief, even people in their eighties and nineties can gain muscle. Maybe not as fast as in our youth, but gains can be made. In fact, I feel that I was at my strongest in my mid to late forties. Not necessarily my fittest, just my strongest.

Which bring ups an interesting tangent. I had a conversation recently with a young man who I’ve befriended at work. He’s a bodybuilder (though I don’t think he would consider himself one since he lifts primarily for “fun,” but I’ve seen his before pictures and he’s clearly a bodybuilder) and he asked me an interesting question: “do you know how men keep getting stronger as they get older?” I replied that I had noticed the same thing myself, stating that many bodybuilders seem to hit their prime in their thirties and how I felt I gained strength well into my forties. But he then said, “no, do you know HOW men keep getting stronger?” and I indicated that I wasn’t sure, perhaps the body doesn’t actually fully mature until a man is in his twenties or later.

Now, I think I can answer that question a little better. Men who keep getting stronger as they age also don’t give up. They stay focused on being a little better each day, at lifting a little more, running a litter farther.

Basically, men get stronger as they age because they think they can.

I think that I can, too. The best is yet to come.

Onward.

Crohn’s Update: Accidents

September 26, 2018December 20, 2019davidpwahr

Warning: this blog entry contains very frank content regarding bodily waste. It may not be appropriate for all audiences. Plus, you may learn more about me than you really want to know. But, if you’ve been reading my blog we both know that ship sailed a long time ago.

I mentioned in an earlier blog (Crohn’s Update: Life as an Ostomate – What I’ve Learned So Far) that “accidents” will happen. Yesterday was for me the perfect storm of accidents and I thought I’d share to illustrate my point.

You should understand that I had last changed my appliance on Saturday morning. I should change it every 3 to 4 days in the perfect world, so I had planned to change it in the evening before retiring for the night as by my count that would have been 4 full days. It’s also best to change the appliance (aka “the bag) when the stoma is less active. Which is usually in the morning or two or three hours after I last ate. In general though, I was feeling a little cocky as this had been the longest I had gone without incident in the past 4 weeks. I thought that I had gotten the hang of it and there would be nothing but smooth sailing from here on out. Riiiight.

I got through most of the workday without a problem. Then about an hour after lunch – when I knew my stoma would be active again (by the way, some people name their stomas – and possibly other body parts but that’s none of my business – I haven’t. My fingers don’t have names nor my toes, why should the stoma be any different?). I felt the the bag fill up. I went to the restroom – conveniently located across the hallway from my office – to empty it and discovered that I had a small leak from the left side of the ring. The good news was that the dressing from my wound had absorbed most of it so my clothing was still dry including my underwear. I didn’t bring my emergency kit (extra bag, seals, etc) into the restroom so I cleaned up and went back to the office, shut the door, took out an extra seal from my kit and patched the leak. Problem solved! I could make it through the rest of the day – darn, I’m good. But, I determined to change the bag as soon as I got home.

I went the rest of the workday without a problem, as expected – yay, me again – and on the way home I remembered that I needed to stop at Costco to get my new membership card (I had signed up last week during a promotion at work). My patch was holding so I exited the expressway and went to the store.

Got my card with no problem, except the wait – not sure what the issue was but there were about five associates and one supervisor crowded around a cash register trying to help one customer while the line grew longer. Not Costco’s best “customer service” moment, but having spent time in retail I understood and waited patiently. Unlike the woman in front of me who left and the man behind me tapping his toe. But, I digress. I felt that my bag was getting a little full so after I got my card I went to the restroom to empty it before I looked around the store. I noticed the $1.50 hot dog combo and thought that I might have found my dinner.

In the restroom, much like anyone else would do, I sat down to do my business. For those who haven’t dealt with an appliance before, I found that it’s easier to empty from the sitting position. When standing it splashes too much and there’s a greater chance of mishap – or so I thought. This does involve dropping “trou” as they say and I’m sure most of you are familiar where the clothing ends up in front of you and the bowl. I removed the velcro fastners which keep the opening of the bag closed and flipped the opening towards the bowl. Instead, I release too soon and miss completely! The the contents, mostly liquid, spill onto the floor, into my pants and my underwear. PANIC ensues!

I wad as much of the flimsy toilet paper as I can and blot up the mess from the floor, my pants and underwear. I got the floor pretty clean, for a public restroom at least and I was confident the next person wouldn’t notice the spill or end up with any residue on their clothing. My pants and underwear, not so much. I felt that I had no choice at this point. I wasn’t about to go to the sink half naked to rinse off the remaining waste and I couldn’t sit there all day waiting for my clothes to dry. So, I pulled up my clothing, fortunately the contents all spilled inside and I didn’t see any obvious stains on the exterior of my clothes, winced at the wetness, untucked my shirt to cover as much of my pants as possible, and exited the stall. I washed my hands while checking myself in the mirror to see if I had covered up any spots that might start to show. On the way out I grabbed a handful of napkins from the snack counter (hey, I’m a member now) and passed up the quarter pound hot dog with drink for $1.50 (sigh) and headed straight to my car. “Have a nice day!” the cheerful attendant (guard?) at the door called after me. Too late ma’am, too late.

At my car I put down the napkins on my seat to hopefully absorb any liquid that might soak through and drove home sitting in my own filfth (if you have a better way to describe it, feel free). Lovely…

Once at home I was pleased to find that the napkins I was sitting on were still dry and that the stain guard of my new pants, pleated to better hide the appliance, must work both ways as they seemed to contain the remaining moisture pretty well. Changed my clothes and checked my appliance. My patch from earlier in the day was still holding so I thought I might as well go visit my mother and like a good son take some laundry with me (I didn’t want the stain to set into the afore-mentioned new pants). For those who don’t know, unlike many adults living on their own I don’t own a washer and dryer. Hey, I have to have some social life right? And what’s more fun than a trip to the laundromat on a Saturday night? But I digress.

My mother was gracious enough to allow me the use of her washer and dryer while I helped her with the crossword and we watched a little television together (Wheel of Fortune, Jeopardy, and NCIS for those interested). When NCIS was over I folded my clothes, noticed that my bag was once again filling up so I emptied it, and then headed home to change the appliance. Life was good and everything seemed fine.

I got home, took my laundry in and started to put it away when I felt a wetness in my pants. A wetness that started to flow down my leg – down both legs! Dagnabit, I exclaimed, I sprung another leak. I once again “dropped trou” only to discover that I had not sprung a leak. I had neglected to re-attach the velcro straps after the last time I emptied the bag. My now active stoma was dumping itself straight through the bag and down my leg. At this point I did what any self-respecting ostomate would do in this situation. I uttered a few more well chosen exclamations (shoot, crud, and golly-gee if I recall correctly) and cried.

In that moment I just wanted to be normal again, I was tired of having this thing attached to me (after only 6 weeks), I hated that I was having more problems and accidents in one day than I think I ever had in 30 years of suffering with Crohn’s. I felt like a freak who couldn’t take care of himself and I just wanted it to go away.

Then, like a big boy, I stood up. Realized that the pity party wasn’t going to do any good. Also realized that two of the three incidents I just had were my own fault for being careless. Took myself and my jeans to the shower and cleaned up. I also thought of that saying, “people say to me ‘I don’t know how you do it’ and I reply, ‘I wasn’t given a choice.'”

Then I changed my bag, watched some reruns on television (American Dad followed by Hogan’s Heroes) and went to bed, warm and dry.

As Miss O’Hara would say – tomorrow is another day.

Onward!

Crohn’s Update: Life as an Ostomate – What I’ve Learned So Far

September 20, 2018December 20, 2019davidpwahr

Well, it’s been a little over a month since I became what is known as an “Ostomate.” This is a person who’s insides have been altered to create a new opening for his or her intestine to empty through (aka a stoma).

Hopefully, to assist the few other new ostomates who may stumble across this blog here are a few things I’ve learned so far. Some the doctors, nurses and dietitians warned me about. Most, they did not:

No matter how careful you are, no matter how often you empty your appliance, you will have accidents. It might be a leak or a blowout – but it will happen.
Some of these will occur at an inopportune time like work (once), before a social function (once), or in bed (three times so far).
Invest in a mattress cover. Don’t skimp on this. I got one that’s breathable and noiseless. Sheets can be cleaned. Mattresses, not so much.
Have emergency kits on hand in your car and at work (a pre-cut appliance, powder, solvent, whatever you need to make a change). I also have spare underwear hidden in my office.
Follow the doctors’ and nurses’ orders. I know, this should be a no-brainer, but it’s worth repeating.
Be patient. It takes a while to adjust to life with your new friend.
Try a pouch support of some kind. I have a band that I slip into with a built in pouch. Check on line there are several styles out there.
Guys, suspenders are better than belts.
Chew, chew, chew. The stomach is an amazing organ and very efficient at breaking down what you eat. But it can’t do it alone. Avoid “chunks” and chew carefully. Trust me on this.
Share your story with friends and family. My first instinct was to not let people know what I was going through. But, there are more of us than anyone realizes. It doesn’t help to keep it a secret.
Red dye is forever. Before you panic because you think your bag is filling with blood, take a deep breath and think, “what did I eat?” One popsicle or glass of Hawaiian Punch can put a very quick scare into you.
Having stated the above (#9), remember it’s okay to be discreet. I don’t tell everyone I meet that there something different about me.
You are going to learn a lot about how your food is digested. This can be interesting and disturbing at the same time. For example: fish smells like fish going in and coming out.
Try to focus on the positive of your situation. Is your pain from Crohn’s, Ulcerative Colitis, or whatever issue gone? Hemorrhoids cleared up? And I bet you don’t miss having to strain to relieve yourself anymore.
Don’t focus on what’s changed in your life, focus on what’s the same. Get back to your normal routine as quickly as you can and your energy allows. Remember, your life didn’t change – only your plumbing did!

Don’t get me wrong, I have my moments of despair and depression, too. I have times when I hate that this thing was done to me and that now I’m not “normal.” But, I then focus on why it was done – literally to save my life – and that perhaps I was spared by God for a greater purpose. I just need to figure out what that is.

You know, like everyone should.

Onward!

P.S. – you’ll also get really good at estimating how many milliliters of liquid there are in any container. You know why…

Crohn’s Update: It Finally Happened – Surgery!

September 3, 2018December 20, 2019davidpwahr

“Mr. Wahr, Mr. Wahr? Do you know what’s happening?” the young med student who just woke me at 4:00 A.M. asked me.

“I think so,” I replied. I had come in to the University of Michigan Hospital less than 24 hours earlier with abdominal pains that didn’t feel like a normal Crohn’s attack. Something was off so after much hemming and hawing I finally decided that given my heart history I really couldn’t take the chance that something was really wrong. Especially since the pains had started the day before and weren’t lessening as was the usual pattern with my Crohn’s, “but why don’t you tell me.”

She looked at me with sympathetic eyes and said, “you’re going in for emergency surgery. A surgeon will be in shortly to explain.” Surgery? I had certainly anticipated this. In the Emergency Department they had determined that I had what they called a “micro fissure” of the fistula in my ileum. But, at least at that time, they didn’t think I needed surgery within 12 hours. So I had been moved to a room for observation.

Almost as soon as she finished her sentence a young man appeared at my bedside – why are all doctors so young now? – in a polite, but firm tone he said, “Mr. Wahr, I’m sorry but you need to sign some forms to authorize surgery. Here, here, and here.”

“Surgery?” I asked.

“Yes, we can’t get your fever under control. Our only choice is to go in and remove the cause of the infection. Otherwise your prognosis…we’ll it isn’t good,” he said in a quiet, somber tone. I understood what he was telling me and started signing the forms.

“I need to tell you of all the possibilities of having this surgery,” and he listed off the usual complications and issues and then added, “and you may end up with a stoma.” By this time another surgeon had joined the growing group at my bedside. She seemed to be in charge.

“May end up with a stoma?” I asked, “how likely is that?” The new surgeon answered, ” well, we never go in planning to create a stoma, but until we go in I can’t say for sure. They’s be coming to move you to surgery in a few minutes.”

The doctors disappeared and my nurse appeared to start prepping me for moving to pre-op. As she moved my IV bags the transport team came in. “We’re going to take you down to surgery now,” the nurse said. I grabbed my phone and sent a quick text to my brother. If something happened during surgery, I wanted someone in my family to know what happened while they slept.

In pre-op I was greeted by even more medical staff. One of the anesthesiologists started to ask me a slew of questions, a woman who identified herself as a nurse held my hand and spoke to me in a comforting manner, then I heard doors open, multiple footsteps and could feel the group around me stiffen a little.

“Mr. Wahr, I’m the faculty surgeon overseeing your operation. Here’s what’s happening. The fissure you have is worse than we thought. The contents of your bowels are emptying into your abdominal cavity, causing infection. If we don’t go in and stop this, we won’t be able to bring the infection under control. The outcome will not be positive. Do you understand?” I nodded that I did. “We’ll remove the damaged areas of your intestine and when you wake up you will have a stoma. Do you know what this is?”

“Yes,” I replied, “but it sounds better than the alternative.”

“It is,” the surgeon replied. “You’ll be going into surgery now.” And with that they began to wheel me to the operating room. I noticed the time on a clock. It was not even 5:00 A.M. They were not wasting any time which told me all I needed to know about the seriousness of my situation.

A quick trip down the hall, during which I mostly observed the ceiling, and we were in the operating room. A white, sterile looking space filled with equipment and a woman sitting in the corner covered with a blanket around her shoulders. Part of the anesthesiology team perhaps? I’ll never know. A quick transfer from my bed to the “table” and the voice of the anesthesiologists who spoke to me earlier. “Are we ready? Okay, here we go.” A mask was put on my face and just as I was wondering if this was it and would I ever wake up, everything went black.

Next thing I knew, I heard a disembodied voice asking me questions, “Mr. Wahr, can you tell me where you are?”

“U of M Hospital, I’m having surgery.”

“Very good, everything went well. You’re going to a room now.”

I continued to drift in and out of consciousness for an unknown amount of time. It was about 10:00 A.M. when I finally seemed to actually wake up. I said a silent prayer thanking God for letting me wake up and yet another doctor came into my room. This, I would later learn, was the “attending” doctor for the intensive care unit I was in.

“Mr. Wahr? How are you doing?” he asked.

“I guess fine. Considering.”

“Yes, I understand. The good news is that the surgery went well. You do have a stoma, but the infection and fever are gone and you should make a full recovery. You were lucky,” he paused to consider his words carefully, “this was the kind of thing that people die from.”

“So I hear.”

He went on to tell me a little more about the surgery and that the surgeon would be in later to check on me (as he did each day I was at the hospital). He then left me with the nurse so I could settle in.

Thus begins my newest adventure with Crohn’s. In a way I always suspected that this day was in my future – yet it was still a surprise when it happened. Many Crohn’s patients end up in surgery and with stomas. I’ve managed to avoid it for more than 30 years so in that sense I’ve been fortunate. And there is the possibility that in 6 months or so, presuming that the Crohn’s is under control, that I could be “hooked back up” so that my colon can be useful again. So, all in all, I’m handling the situation pretty well.

My current concerns while I recuperate and adjust to life with an appliance attached to my side (which does get changed every three to four days): 1) dehydration – most of the water for the body is absorbed by the colon. It will take time for my small intestine to realize it needs to pick up the slack; 2) weight loss – even though my appetite is good, food is still passing through my intestine too quickly. As a result, I’ve been slowly losing weight (almost a pound a day). Something a lot of folks dream of, but be careful what you wish for. When I was first diagnosed with Crohn’s I dropped down to about 140 pounds from my then previous weight of 180 pounds before being stabilized. I sure don’t want to be that thin again. Plus, all the weight seems to be disappearing from my chest and shoulders and thighs. Not my belly where I really don’t need it. Muscle loss is certain at this point. There goes the last 30 years of training down the drain; 3) infection, which I’ve avoided so far, always a risk after surgery but especially for someone with a weakened immune system; 4) controlling the Crohn’s. My past medical regimen didn’t prevent the fissure which is an indication that the treatments weren’t working. The interesting thing now is that my Crohn’s has historically been localized to the ileum. Now that my ileum, about a meter’s worth of small intestine, is gone the question is will my Crohn’s flare up somewhere else?

That’s it in a nutshell. I’m managing to deal with the appliance pretty well so far with only a couple mishaps (one in the doctor’s office) and I’m looking forward to returning to work soon.

Of course, I’ll keep blogging about my experience in the hopes of helping someone else with the same or similar situation. There’s always hope folks and we are all in this together.

On a side note, I had an interesting experience that was repeated with three nurses as they prepared to give me an injection in the back of my arm. It went something like this:

“Left or right arm?” the nurse asks.

“Doesn’t matter. Left.” I reply.

“Okay,” takes my arm to prepare the injection site. Stops and says, “oh, I’m not sure what this is. Is there a tumor in your arm? Or is that your tricep?”

“I hope it’s my tricep.”

“Yes, I guess it is. Not used to seeing a tricep like this. Very impressive.”

Now, I can’t be sure if the comment – from three different nurses – means I have an oddly shaped tricep or if they just don’t expect a relatively well developed tricep on a…ahem…mature man (though I think it’s looking pretty puny right now). I’ll go with the latter as it makes me feel better about myself. You have to look for the positive in every situation after all.

Onward!