I bet you my large bowel is smaller than yours

Last Wednesday I went to the University of Maryland Medical Center and had a portion of my large bowel removed. Crohn’s disease damaged it. It made part of my large bowel narrow and difficult for waste to travel from point A to point B. It’s what caused the G.I. blockage that almost killed me the end of last year.

The surgery was scheduled for 10:00 AM, so I was instructed to check in to the hospital at 8:00 AM. Living about 80 miles away, Sheri and I got there early and I checked in at 7:30 AM. We were taken back to the pre-op area and I was told to remove all my clothes and put on a hospital gown and grip socks and to get in bed.

Hurry up and wait

We then waited. And waited. The scheduled start time of 10:00 AM came and went. We were first told Dr. Andrea C Bafford, the surgeon doing the procedure, was running late on her first surgery. Then, later on, we were told she was called away to perform emergency surgery.

With the passing of each hour, I was afraid my surgery was going to be canceled.

Finally, at 4:45 PM, they wheeled me away to surgery. The surgery began at 5:10 PM and it lasted longer than three hours.

The surgery room looked much different than what I’m used to seeing on TV. There were a lot of people there. University of Maryland Medical Center is a teaching hospital so it made sense there was an abundance of people there in learning mode. I remember there was an anesthesiologist, a nurse anesthetist, and a student anesthetist. The anesthetist was a short woman and she was wearing a black Hello Kitty scrub cap. I immediately liked the cut of her jib and I felt like my life was in good hands.

The robots are taking over!

The da Vinci® Surgical System

 

Dr. Bafford was not only doing the surgery endoscopically, but she was using a robot. I saw the robot. It was huge and scary looking. It looked like a multi-armed murderbot sent back in time to exterminate humanity. I don’t trust robots, but I fully trusted Dr. Bafford.

Even though I shaved my skull that morning, I had to wear a hair net during the procedure. The reason? Because it was a regulation. It pained me for the robot to see me like that laying here in such a vulnerable position wearing a big poofy hair net on my shaved head.

After the surgery, Dr. Bafford told Sheri the damaged section in my bowel was much larger than she expected. It was so big, she had to make the incision in my belly larger just to remove it.  It wasn’t spongy and it had no elasticity.  It was also abscessed and infected. The area could have burst at any moment which I’m guessing would have made me bleed internally and die.

Post-op? What’s this post-op you speak of?

I was out of it when I was taken to post-op. In fact, I don’t remember ever going there. Although I’ve been under anesthesia before, it’s never been for that long.

My memories began once I was in my own room late Wednesday night. Even those memories are foggy at best.

Medication? You don’t need any stinking medication

Even though I provided a detailed list of the medications I was already on and I brought all my medications with me, I wasn’t allowed to take them, nor were the nurses allowed to administer them. The reason? I don’t know.

It made for a very frustrating experience. For example, I take blood pressure medication. I’ve been on it for years. With the blood pressure medication, my blood pressure is normal. Without my blood pressure medication? Not so much. Each time they checked my vitals, my blood pressure was higher than it was before. Considering the stress I was under, I’m surprised my blood pressure wasn’t even higher.

Speaking of stress, I also wasn’t allowed to take the medications I take for anxiety. You’re not supposed to just stop taking anxiety meds cold turkey.  I was definitely feeling the withdrawal side-effects.

The joy of having weapons-grade diabetes

I wasn’t allowed to take my diabetes or heartburn medication either. For the heartburn, I knew I could just run out the clock. It’s not like I was eating anything. Also, I was only supposed to be there for a few days. I could wait that long before having to worry about acid reflex. The diabetes medication was a whole different story. You’d think that by not consuming carbohydrates, my glucose levels would drop. With me, they don’t. Ever since I had diabetic ketoacidosis, my body produces glucose when I don’t eat. If I don’t eat, I normally have to take more fast-acting insulin through the course of the day then I would take if I were eating.

Since I wasn’t allowed to administer my own insulin, I was totally dependent on the nurses to give me as much of their insulin as they saw fit. I don’t even think it was them, I think the charge nurse was making that decision.

I remember one time my blood sugar was at 300. An hour and a half later, I was given six units of fast-acting insulin. That’s not enough. If I was at home and my blood sugar was reading 300, I would immediately take 25 units of fast-acting insulin. I would then test it again in 45 minutes and administer more fast-acting insulin if needed. It’s hypothetical because I never let my blood sugar get that high.

It was also hard to get my pain medication. I had to ask and then wait for each dose. They treated me like I was Bubbles from The Wire. The whole thing was very annoying. Who was the charge nurse, Tom Cruise?

What I had to do to be discharged

I was told I would remain in the hospital until I could pass gas. Even though my surgery was performed by an expert in colon surgery and she was assisted by a MurderBot from the future, being able to successfully fart was the best way they had to tell if the surgery was a success. It was like someone got 8th-century medicine in the 22nd-century medicine.

You know how to stop someone from farting? Tell them they have to fart. I wasn’t able to pass gas on Thursday. Then on Friday night, a miracle happened: I was able to pass gas.

I bet you my large bowel is smaller than yours - Bent Corner

That part of the quest was complete. To finish the rest of the quest, I had to eat two meals of solid food and not throw up. Going by personal experience, I felt fairly confident I could do that unless those two meals included lots of tequila.

I just didn’t realize how nasty the food was at the University of Maryland Medical Center.

When I was on the liquid diet, I didn’t partake of what they were providing. Every meal was about the same. Beef broth, apple juice, lemon Italian ice, and Jello. Everything other than the broth had lots of sugar in it.

Let the solid foods begin!

Saturday my breakfast was fake scrambled eggs, a sausage patty, fried potatoes, Frosted Flakes, and orange juice. I was able to eat the fake eggs and some of the fried potatoes.

For lunch, they brought me a grilled cheese sandwich and fake mashed potatoes. I could only eat one bite of the sandwich. It was so greasy and disgusting. I tried to get Sheri to eat a couple of bites, but she refused to do it. I’m 1oo percent sure she would take a bullet for me but she would not eat two bites from my nasty grilled cheese sandwich. That says a lot about the food at the University of Maryland Medical Center.

I was worried about the powers that be would say I had not eaten enough of my two meals to successfully complete the quest. Sure enough, one of the nurses saw my tray and said they might not release me since I didn’t really eat enough. She brought me cold applesauce and graham crackers.  I hadn’t eaten graham crackers since being diagnosed with diabetes. I ate what she brought me. It was actually good.

They discharged me around 3:00 PM. Leaving the hospital felt so incredible. It felt even better to get home and take a shower.

What I learned from my stay in the hospital

Looking back at my stay at the University of Maryland Medical Center, the next time I go to the hospital, I will do things differently. This includes:

  • I will shave my arms before I get there. Both my arms had IVs. Removing the tape holding the IVs in place felt like torture.
  • I will bring plastic Ziploc bags. Instead of leaving the food I could not eat on the serving tray for the whole world to see, I’ll put the leftovers in plastic bags and put them in my book bag. I’ll then throw everything away when I get home.
  • I will secretly take my own medication. I’ll never allow anyone else to control my medication. Next time, I’ll test my own blood and give myself the insulin I need.
  • I will leave the books and video games at home. The pain was far too extreme for me to play my Nintendo 3DS XL or read my Kindle. I didn’t even watch TV until the last day.

I’m a very lucky man

I can’t even imagine going through what I went through if I didn’t have Sheri at my side. She was truly a life saver. There’s a reason I have Is She With You from the Superman v Batman: Dawn of Justice soundtrack as a ringtone when Sheri calls me. It’s the electric cello music that plays when Wonder Woman shows up. My wife is my best friend and she’s my hero.

Sheri is my Wonder Woman.

After tomorrow, I will have less large bowel than I have now

Tomorrow morning I check into the University of Maryland Medical Center in Baltimore to have part of my large bowel removed. It’s the part that has been damaged by Crohn’s. The damaged portion is constricted and there’s no way to make it less constricted. That’s why it has to come out.

The surgery will be done by Dr. Andrea C Bafford. I met with her last month and I immediately knew she was someone who was very good at what she does. She exuded unquestionable proficiency. All she does is colo-rectal surgery and I consider myself extremely lucky to have her operate on me.

As of tomorrow, I may be part cyborg

As far as surgery goes, it shouldn’t be too extreme. It will be done using an endoscope so I won’t have to be opened up and gutted like a catfish. The bad part will be removed and then the large bowel will be joined back up with titanium staples. I think technically that means I will then be part cyborg. I look forward to my subsequent special powers, the type of special powers all cyborgs have.

Because of the surgery, today I’m on a clear liquid diet. I can have black coffee, blue colored Mixed Berry Powerade Zero, Jello, chicken broth, and that’s about it. Starting at Noon, I have to begin taking a powerful antibiotic and Clenpiq, a cranberry flavored solution intended to “cleanse the colon.” In other words, it will make me shit my brains out. I had to take something similar for my colonoscopy, but I had to mix it myself and it tasted like rancid ocean water with a hint of lemon-lime. Clenpiq comes premixed and there’s less of it to drink. A lot less.

I also have to shower tonight and tomorrow morning with a special pre-surgical soap. How fancy is that?

Thank goodness for the Kindle and Craig Alanson

I was told to plan on being in the hospital for two to three days. When I was in the hospital for the initial G.I. blockage, which lead to the diagnosis of Crohn’s, I was in the hospital for ten days, nine of those days in intensive care. The thing is, I don’t really remember most of those ten days. I was pretty much out of it most of the time, especially when I was in intensive care.

In comparison, my time at the University of Maryland Medical Center will be much more in real time. Other then the surgery itself, I’ll be awake and fully aware of things. I plan on playing a lot of Candy Crush and reading the newest book in the Expeditionary Force series, Book 6, Mavericks

After tomorrow, I will have less large bowel than I have now - Bent Corner

How nice of Craig Alanson to write it and publish it before my surgery. That was extremely decent of him.

After the surgery, I’ll still have Crohn’s. Originally I thought the surgery would make me Crohn’s-free. That’s not the case. The surgery will only remove the damaged part of my large bowel that the Crohn’s destroyed. Crohn’s will continue to be something I’ll have to deal with.

I imagine being part cyborg will make things easier though.

 

 

I have Crohn’s disease and will have surgery

I went to the University of Maryland Medical Center in Baltimore yesterday and met with a professor of medicine and the director of the inflammatory bowel disease program who is a Crohn’s disease and ulcerative colitis expert.  I’m so glad that I did. He was like a human lighthouse in the fog of medical confusion I’ve found myself in for the last few months: I have Crohn’s disease.

I do not have ulcerative colitis.

The good news is that my medical problem can be fixed with surgery. A surgeon who specializes in gastrointestinal surgery will open me up, take out the bad part of my digestive tract, sew the remaining good parts of the digestive tract back together, and I’ll be done with it. Crohn’s disease will be in my read view mirror. No more expensive medication that doesn’t work or that my insurance company will not pay for until we (okay, my wife) engage in multiple rounds of telephone kung fu.

My Crohn’s will be gone.

This type of treatment appeals to me on many different levels.  When you have a problem, to me it makes more sense to eliminate the problem than to treat the symptoms of the problem. That’s what taking medication does, it treats the symptoms of the problem. Plus, taking medication for the rest of my life for a serious medical problem means that I have to hope my insurance company doesn’t try to stop me from receiving the medication I need some time in the future.

Delzicol, or as I like to call it, the Blade Runner medication. It looks like something from the movie Blade Runner.

I was told yesterday to stop taking the Delzicol because it’s a useless medication for Crohn’s disease. Expensive, but useless. It’s designed to treat ulcerative colitis, something the director of the inflammatory bowel disease program at the University of Maryland Medical Center in Baltimore is 100 percent sure I do not have.

I’ve been feeling better since taking Delzicol, but that’s because I’ve been taking steroids while taking the Delzicol. Not just any steroids, I’ve been taking Prednisone. It’s a steroid that targets the entire body, not just the area in need of the healing benefits of steroids.

From now on and until the surgery, I’ll be taking Budesonide, a steroid that targets the area where the Crohn’s disease is. The Prednisone has been making my blood sugar levels high and it’s been making me gain weight. Hopefully, the new steroid will not do either of these two things.

It’s hard to mention steroids without thinking of Baltimore Orioles great Cal Ripken Jr.

I may or may not need another colonoscopy before the surgery. It’s up to the surgeon. I guess I’ll know for sure after meeting with her. A colonoscopy isn’t bad. It’s the prep work you have to do before a colonoscopy that’s terrible.

I imagine getting your intestines operated on requires the same prep work a colonoscopy requires. Now that I think about it, intestinal surgery probably requires even more severe prep work requirements than a colonoscopy. I really don’t want to drink any more of that nasty tasting liquid.

I think I see the light at the end of the tunnel.

I went in for a colonoscopy and got an incomplete

I went in for a colonoscopy yesterday and it didn’t go as well as I had hoped. I’ll need to go the University of Maryland Hospital and get it done again. The reason? The ascending colon is still inflamed and too narrow for the scope to traverse. A full colonoscopy can’t be done here in Hagerstown. It will have to be done at the University of Maryland Hospital where they evidently have scopes more suited for my situation.

To say I’m not at all happy with this outcome is an understatement.

We knew my colon was inflamed and narrow back when I was in the hospital. This is what caused the infection that required me to stay in the hospital for ten days, nine of those days in intensive care. They could tell from the series of CT scans I had in the hospital that my colon was inflamed and too narrow.

A week before the colonoscopy, I went in for another CT scan just to make sure the colonoscopy could be done. The results from that CT scan indicated the colonoscopy could be performed. That turned out not to be the case.

Oops.

Before the colonoscopy, I was required to pay $1,018 out of pocket for the procedure. Then, after waking up from the anesthesia, I found out the full colonoscopy could not be performed.

I now get to look forward to another colonoscopy, this time 80 miles away. The actual colonoscopy isn’t that bad. The worst part is the prep required for the colonoscopy. Two days before the procedure, you have to go on a liquid diet. The day before the procedure, the liquid diet turns into a clear liquid diet. You can only drink substances you can see through. Oddly enough, that doesn’t include American beer.

You then have to start consuming the liquid called MoviPrep. It’s supposed to clean you out. It’s the worst tasting concoction I’ve ever had. It tastes like dirty ocean water with a hint of lemon-lime. I had to drink 32 ounces of this nasty sludge the night before the procedure and then another 32 ounces at 4:00 AM the day of the procedure.

If the idea is to clean you out, why don’t they arrange for you to have a colonic?

What depression feels like to me.

I now have this to look forward to all over again, only 80 miles away at the University of Maryland hospital in Baltimore. If I didn’t already have a problem with chronic depression, knowing I have to do this again would make me feel depressed. At least this gives me a valid reason to be depressed. Normally with my depression, I don’t have a reason to be depressed. I just feel depressed.

As incomplete as my colonoscopy was, my gastroenterologist here in Hagerstown diagnosed my condition as ulcerative colitis (UC), not Crohn’s disease. I’m now taking medication for UC, a very expensive medication called Delzicol.

Delzicol (mesalamine) 400 mg.

As far as how pills look, the Delzicol is the coolest looking drug I’ve ever taken. It’s four tiny pills in a clear capsule. I take two capsules in the morning and then another two in the evening.

My appointment with the gastroenterologist at the University of Maryland Hospital in Baltimore isn’t until April 27. That was the earliest appointment available and it was only available because of a cancelation. The good news is the gastroenterologist I will be seeing is an expert on UC.

When you get sick in this country, you better be sitting on a pile of money

In response to my recent health scare which resulted in spending ten days in the hospital, nine of those days in intensive care, I vowed to myself that I would do whatever I needed to do to never let that incident ever happen again.

My diabetes was a contributing factor to the problems I had. Since getting out of the hospital, I’ve gotten my diabetes totally under control. I avoid carbs whenever I can. My days of eating chips, pizza, and pasta are over. I test my glucose levels up to ten times a day to ensure that it’s as close to 100 as I can get it. Before going to the hospital, I was on a bunch of medication for my diabetes. Now I’m only on two; Humalog, a fast-acting insulin and  Xultophy, a once-a-day injectible pen.

As soon as my anemia is under control, I plan on adding daily exercise to my routine.

The other thing that put me in the hospital, the thing that contributed the most to me almost dying, was the blockage in my gut that caused the infection. They determined in the hospital that it was due to intestinal inflammation. Why my intestines were inflamed is still not known, at least by me.

Because I’m self-employed, I’m covered by my wife’s employer-provided insurance. The way it works is that at the beginning of the year, everything is out of pocket. We pay for everything. Once a certain monetary threshold is met, insurance pays for eighty percent and we pay for the remaining twenty percent. Once another monetary threshold is met, the insurance pays for everything.

Because I was lucky enough to get sick at the end of the year, insurance paid for everything. Our thresholds had already been met for the year, thanks mostly to all of the drugs I was taking for diabetes. Some of them were quite expensive.

My hospital bill totaled over $35,000. Insurance paid for all of it.

This past Wednesday I had a CT scan of my abdomen. As far as procedures go, it was pretty awful.  I had to arrive early at the imaging facility that was doing the scan and sit in a special waiting room where I had to drink three bottles of this nasty tasting lemon-lime concoction.  It tasted like flat, store brand 7-Up that had been thickened.

Once I got those three bottles of yuck down, I went in for the CT scan. I was hooked up to an IV and given a drug and made me feel hot all over. I was told it would make me feel like I wet myself. I didn’t feel that, but it did feel weird.

The next day, I got a call from the Target pharmacy. I was told they received a prescription, but it was very expensive. My out of pocket was going to be $2,400 for a three-month supply. The prescription was requested by my gastroenterologist. Evidently, he saw something on the CT scan that required this very expensive drug. I don’t know because he never contacted me.

My wife called the gastroenterology office the next day and spoke to the doctor’s assistant. She explained $2,400 was a lot of money for a three month supply of a medication and asked if there was something cheaper or a generic version I could take. The assistant relayed the question to the gastroenterologist and later that day I got a text from the Target pharmacy. I had a new prescription ready for pickup. My wife called the Target pharmacy. The new drug was going to cost $700 for a three month supply.

My wife called the gastroenterology office again. A few hours later, I got another text from the Target pharmacy. Two new prescriptions were ready for pickup. One cost less than two dollars, the other was 27 dollars.

Why weren’t these two much cheaper medications prescribed in the first place? What do they not do that the more expensive drugs do?

I don’t even understand why I’m being prescribed medications. I go in for a colonoscopy on Wednesday. Shouldn’t the gastroenterologist wait for all of the tests, both the CT scan and the colonoscopy, before prescribing medication? If he’s able to prescribe medication with only the results of the CT scan, why do I still need a colonoscopy? Is the gastroenterologist ordering the colonoscopy because I need it or because that’s what gastroenterologists do, perform colonoscopies?

It seems to me that if he was ready to prescribe a medication that costs $2,700 for a 90 day supply, he is done with the troubleshooting phase.

So far I’m not very pleased with the gastroenterologist. Communication seems to be severely lacking. The reason I’m seeing him and not another gastroenterologist is that he saw me in the hospital, although I don’t remember it.

I was out of it quite a bit while in the hospital, especially at first when the infection was at its worst.

And because we’re at the stage in our insurance where everything is out of pocket, I have to pay $1,018 when I arrive for the colonoscopy. I don’t know how much the CT scan cost because they didn’t make me pay up front. They will bill me. As much as things are costing out of pocket, we should be hitting the first insurance threshold sooner rather than later.

Remember, we have the best healthcare in the world as long as you’re sitting on a pile of gold like the dragon from The Hobbit, a lot of money in savings, or a credit card with a large amount of available credit. If you don’t have any of that and you experience a catastrophic health problem, you’re screwed.

Another update concerning my health problems

This blog post is part of a series of posts that began with what I wrote about how I almost died. Make sure to first read that one first and then the follow-up post after that before reading this one. Things will probably make more sense that way.

The good news is that I’m totally off the steroids and because of that, the depression has dramatically ramped down to my normal, annoying level of depression. I now only experience the depression that I’ve been dealing with for a while now. Watching the evening news doesn’t make me cry.

Depression is part of the normal human experience. If your cat dies or your wife leaves you for someone else, the normal, natural response is to get depressed. I get depressed for no reason. When I get depressed, there is no outside stimulus responsible for it. I just feel severely depressed.

I was on the steroids to treat the inflammation of my intestines. Hopefully, the steroids did what they were supposed to do, because I don’t want to go back on them.

Cal Ripken Jr.

Again, being on steroids gave me a whole new appreciation for Baltimore Orioles great Cal Ripken Jr. I don’t know how he could use steroids for his entire career. The fact that he did and didn’t allow the side effects of steroids to drag him down is a testament to what a great athlete he was.

I’m experiencing shooting pains in my lower abdomen after eating. They can get quite severe. I have pain pills when they get really bad. I’m supposed to avoid anything high in fiber. I can’t eat salad or whole wheat bread. The only fruit I can eat is canned fruit. I think the pain is made worse because it’s related to what put me in the hospital. If I was experiencing the same level of pain in my leg or my shoulder, it wouldn’t bother me nearly as much. The fact that the pain is located in my abdomen bothers me on a psychological level.

Anemia sucks.

It turns out the fatigue I was experiencing is because I have anemia. This is normal for intestinal problems because you can’t absorb certain nutrients.  I’m taking iron supplements and giving myself vitamin B-12 shots. I haven’t really noticed a difference. I still get tired quite easily.

I took two naps yesterday. I feel like I’m turning into our cat.

Tomorrow I have an appointment at the imaging center for a CT scan of my intestinal area. I have to drink some type of special liquid and then they will do what they are going to do. The CT is needed to make sure it’s safe to do the colonoscopy. I will not know what’s really going on until the colonoscopy. I just want to know definitively what’s going on with my guts. If it’s Crohn’s disease, then I can start treatment for that. If it’s something else then I can start treatment for that. What I find aggravating is my gastrologist will not schedule the colonoscopy until he sees the results of the CT scan. I just want to get this done.

Not knowing is the worst part.

The good news is that for the first time, my diabetes is totally under control. Spend eight days in intensive care and it tends to make you take your health issues a lot more seriously. I’m testing my blood constantly throughout the day and I’m recording everything in a log book. I’m not eating anything a diabetic should not eat. My doctor took me off all my medications for diabetes except Humalog, a fast-acting insulin. I’m now also taking Xultophy, a once-a-day injectible pen. That’s it.

Once I get the anemia under control, I want to get back to going to the gym. I have a Planet Fitness membership just collecting dust. With daily exercise, my diabetes should be even easier to keep under control.