Crohn's Disease Archives

Happy New Year to you and your people

Today is the first day of the New Year. It’s the day a lot of Americans have weapons-grade hangovers. The last time I had a hangover, any type of hangover, was 1993. It’s when I learned a man I both admired and respected did something truly horrible and was in prison. This man was my boss when I was in the Air Force and stationed on Guam. More importantly, he was my friend.

I found out about it in the afternoon. That evening, I got extremely drunk. I haven’t been drunk since.

2018 was a terrible year

My hope is 2019 will be better than 2018 was, but how can it not? 2018 sucked. I began last year fresh out of the hospital where I almost died. Even when I got out of the hospital, life wasn’t that great. For one thing, I could barely stand, let alone walk. Ten days in bed had made my legs extremely weak. Once I was able to stand, I began working on walking.

Happy New Year to you and your people - Bent Corner — Me at Walmart, January 2018.

I’d want to go to Walmart and Target with Sheri, but legs weren’t all that cooperative. I had Sheri take a photo of me in one of those scooter chairs at Walmart. It was the only way I could get around. I wanted a photo of me in the scooter because I used to look down on folks who rode these scooters. I’d try to determine in my mind if they had something physically wrong with them or if they were just lazy. Most of the time, I decided they were just lazy.

I was wrong to do that. Who was I to judge anyone? I wanted a photo to remember what an ass I was. Not that I usually need anything to remind me.

My large intestine is smaller than your’s

Then in June, I went back to the hospital to have surgery. By then, my gastroenterologist diagnosed me with Crohn’s disease. It’s what put me in the hospital at the end of December 2018. Crohn’s had severely damaged my large intestine, so much so, I had to have part of it removed.

That’s when you know you’re old when they start hacking off parts of you.

What do you know, Comicsgate is a hate movement

I’m ashamed to admit that I at one time supported Comicsgate. I think I was fooling myself that it was a grassroots consumer movement. In reality, it’s a hate movement filled with people hellbent on being jerks to women, minorities, members of the LBGT community, or anyone else they deem to be unworthy of making comic books they don’t read.

In August, I saw the light. I wrote three (3) critical blog posts on Jeremy Hambly, a controversial professional YouTube personality.

Unbeknown to me, Hambly was one of the leaders of Comicsgate. I was not aware of his status in Comicsgate because he never spoke about comics in his videos. Evidently not possessing an interest in comics doesn’t matter to people in Comicsgate. What matters is if you have an ax to grind against women, minorities, members of the LBGT community, or men deemed inferior to the manly men of Comicsgate.

People in Comicsgate began going after me, both in the comment section of this blog and on Twitter. Some of these same people had interacted with me prior in a much more cordial manner. It got so bad, I had to temporarily disable my blog’s comment section.

The whole experience was quite eye-opening. If they went after me in the manner they did, I can only imagine how they went after women, minorities, and members of the LBGT community.

I now wish I had nothing to do with Comicsgate. It’s something I’ll regret for a very long time.

Don’t look now, but there’s a stranger in my car

In the latter part of 2018, I began to focus more on driving for Lyft and Uber. Integrating e-commerce on websites and selling WordPress plugins was my main gig, while rideshare driving was a distant second. I then switched it up. It turned out to be a good move on my part, both financially and mentally.

My goal for 2019 is to make it better than 2018

I want this year to be better than last year. I’m going to concentrate on the things I control. I want to identify what those things are and focus on them. I also want to identify on what I have no control over and try to ignore those things. For example, the raging idiot we have in the White House. I have no control over him or what he does.

For my own well being, I need to be better at ignoring Donald Trump and his buffoonery. I cannot make Donald Trump a better person. I can make myself a better person.

So that’s what I’m going to do.

A lot to be thankful for this Thanksgiving

Today is Thanksgiving. It’s the one day a year we Americans are required by federal law to overeat, watch football, and think about what we’re thankful for.

I have a lot to be thankful for. I’m married to the greatest woman in the world. The life we have together is pretty awesome and continues to get even more awesome.

My health is a lot better than it was last Thanksgiving. Less than a year ago I found out I have Crohn’s disease. It almost killed me. I eventually had surgery to remove part of my large bowel removed. After some extensive lab tests last month ago, it looks like the Crohn’s is in remission. I won’t know until after I have a colonoscopy next month. Fingers crossed!

On a related note, I’m thankful to have health insurance. I’m also thankful President Barack Obama was able to put the Affordable Care Act into law. It means I don’t have to worry about being denied health insurance because of a pre-existing condition or paying more money for health insurance because of a pre-existing condition. It also put a cap on my out-of-pocket expenses. Without that, last year’s ten-day hospital stay and this year’s surgery very well could have ruined us financially.

I’m extremely thankful to have health insurance

I’m so, so thankful I have health insurance. I received a statement in the mail from the University of Maryland Medical Center for the surgery to remove part of my large bowel last month.

Because I have health insurance, my out of pocket cost for the whole thing was zero.

I’m lucky to have health insurance. Actually, I’m lucky to be married to Sheri who works for a company that offers health insurance at a subsidized cost. One of the drawbacks of working in the gig economy is that I don’t have employer-subsidized health insurance. That’s because I’m my own employer. And yes, my boss is a real jerkface.

Not having health insurance is not an option

I’d like to think I wouldn’t put myself into a situation where I didn’t have health insurance. Without actually being in that situation, I can’t be 100 percent certain, but if Sheri didn’t have access to health insurance, I would get a job, any job that provided subsidized health insurance.

The topic of not having health insurance has come up recently in the online Magic: The Gathering community. Wedge, a popular YouTuber, does not have health insurance. He had a serious problem with his back and traveled against doctor’s orders to Grand Prix Las Vegas from upstate New York. The day after he arrived, he woke up not being able to move his legs.

He was taken to the hospital by ambulance and had surgery the following day. Being that he didn’t have health insurance, his sister started a GoFundMe campaign to raise money for his hospital bills. So far they’ve raised nearly $80,000.

Because of people who donated to the GoFundMe campaign, he was able to make a huge dent in his medical costs.

I'm extremely thankful to have health insurance - Bent Corner

For everyone’s sake, I hope Wedge does whatever he needs to do to get health insurance. First, it’s the law. Secondly, I doubt people will donate to a GoFundMe campaign the next time he has something majorly wrong with his health. Then again, maybe they will. It’s really hard to say for certain. If there’s anything people online can be counted on to do, it’s doing the unexpected.

My wife is my hero

If I wasn’t on Sheri’s health insurance, if she didn’t work for a company that provided subsidized health insurance, I’d have to jettison my dream of driving strangers in my car and get a job doing something I hated even more than driving strangers in my car. I could still do e-commerce integration jobs on the side. I could also still sell WordPress plugins on my business website. The nice thing about that stream of revenue is it’s all automatic. I created the plugins a while back and people can buy them and then download them without any action taken by me. It’s all automatic. Someone bought one last night when I was sleeping.

Making money while you sleep is the real American dream.

I cannot wait for Thanksgiving this year

I'm extremely thankful to have health insurance - Bent Corner I’m looking forward to Thanksgiving this year. I have quite a lot to be thankful for. I’m thankful to be married to the greatest woman in the world. When I first experienced complications from what would be later diagnosed with Crohn’s disease, I’m thankful I was taken by ambulance to Meritus Medical Center where I received world-class care, especially from the nurses on staff. I’m also extremely thankful to have Dr. Tu Bui as my primary doctor. He not only provides excellent care when I see him for an office visit, he visited me in the hospital several times. In fact, he told me I had Crohn’s before any of the experts in gastroenterology made the diagnoses. He’s the best primary care doctor I’ve ever had. Finally, I’m extremely thankful I was able to have Dr. Andrea Bafford perform the surgery that saved my life.

I’m a lucky and thankful man.

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!

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.

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.

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.

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.

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.