Month: September 2017

Ostomy Thoughts Part 4 – The Crohn’s Saga Part 72

If you’ve been following the ostomy thoughts series, you’ll recognize this as a big turn for me. Instead of focusing on the negatives of living with an ostomy, I started to look at everything I’d miss out on if decided not to have the surgery.

At this point, I’d tried and rejected every treatment available. I’d been told that if my insurance company wasn’t going to approve Stelara soon, I was going to need surgery and a permanent ostomy. I’d been dreading that for 25 years. People sometimes use the word “dread” casually, but here, I mean it in its full sense. I’d seen a stoma once before and I was sure that I would rather die than live with one.

Patients who refuse a permanent ostomy can still have surgery to remove infected tissue, but they will never really get better. Instead, the tissue surrounding the areas that were removed will soon become infected too. You can avoid an ostomy this way, but you will have to live with all of the symptoms of a flare in perpetuity. You’ll have to endure surgery after surgery without ever getting better until there just isn’t any more tissue to remove.

So, when I finally thought through the fear and weighed my options, I decided that I wanted to live. I would still do whatever I could to avoid getting an ostomy, but there was just too much left for me to experience in life.

I will add that not everyone comes to this same conclusion. The ordeal is extremely sad, painful, and frustrating, and the consequences are serious regardless of what you choose. There are no great options. There is only the option that is best for you. For me, I was still too young and had too much to live for.

Seasonal Planners – Lousy Marketers

Seasonal planners can definitely be lousy marketers. This happened to me about 5 years ago. I had gotten a gift certificate for Christmas, but when I went into the store to shop, they didn’t have sweaters, gloves, or any of the other warm clothes I needed. It was late January, it was cold and snowy out, but all they carried was summer wear. Maybe I’m just a simpleton because I don’t plan my outfits months in advance, but I’d bet I’m not the only one.

This happens when forecasters focus nationwide instead of accounting for local needs. It’s a common recurring problem for humanity actually. For example, consider the history of the Catholic church. In the early days, the bishops had more control over their local communities. As such, their churches catered to the specific needs of the local people. Different teachings were emphasized based on the unique needs of the community. Then, as transportation and communication improved, the pope was able to enforce more control and establish standard dogmas across all territories. The power of the local bishops decreased and with that, the emphasis on the unique needs of the community decreased as well. When you try to apply one size fits all, you push people to the fringes. That’s how the Catholic church split into the many christian churches that are around today.

Alternatively, consider that before the industrial revolution, most clothes were tailored. One size fits all was created for mass production, not because it benefits the people. One of the cool things about the age of the internet is that we are going back to tailored clothes. Companies like Stitch Fix and Trumaker start with your measurements, then make clothes to fit you. It’s quite nice.

So what’s the takeaway? If you work in marketing or business, consider local needs and interests. Meet the needs of your customers instead of requiring that they meet yours. That’s the way of the future and any company who can’t figure it out will be out of business.

 

It Gets Real – The Crohn’s Saga Part 73

And so, after being sick for over a year and being really sick for over six months, I finally agreed to have surgery. What you read above is exactly the decision I was given. I could either be on a feeding tube for three months while I waited to see if the Stelara worked or I could have surgery and feel better immediately. Neither choice was appealing, but Crohn’s Disease is a jerk like that. Like most other chronic illnesses, it often forces difficult decisions. After a while, you give up being frustrated about whether or not it’s fair, and you just forge ahead since making a decision is the only control you have left.

What really made the choice for me was my doctor’s observation that I was probably already too far gone. You see, when I was 18, in a last-ditch effort to save me from surgery, my doctors gave me a new drug called Remicade. I had one treatment, but I was already too far gone, so I needed to have surgery a few days later anyway. My intestines had been in such bad shape that I was beyond the help of any drug. However, when doctors tried to give me Remicade again a few years later, I had a very bad reaction. It turned out that the one dose I’d been given when I was 18 had been enough for me to develop antibodies and I would never be able to have Remicade again.

My guess was that this time, things would be the same. With Crohn’s Disease, when you get to the point that you can’t eat or drink, it usually means that your insides are so infected that they are closed shut. Anti-inflammatories can help this to a certain point, but after a while, patients build up scar tissue that will also close up the bowels. No medicine on earth can help you at that point. You just have to get the infected tissue removed. Since Stelara was literally the last drug I hadn’t rejected, I couldn’t risk history repeating and becoming immune to it.

And that’s how I ended up finally agreeing to life with an ostomy. It was a brutal decision that took a long time to make and, almost a year later, I’m still coping with it. Keep reading to learn more.

Litterers – The Worst Person Ever

Litterers are straight up worst person ever material. As with most of these, it boils down to accountability and putting in the minimal effort to be considerate. I live in Chicago and I see people throw trash on the street every day. When I worked in the suburbs, I would see people throw garbage out of their cars at least a once a week. I take stewardship seriously. This is my home, why wouldn’t I look out for it? Why wouldn’t I want to keep it clean and nice? What does it say about people who don’t care?

I’ve often tried to get into the mindset of this one since it baffles and frustrates me so much. I can understand trying to throw something into the trash and not realizing you’ve missed, but beyond that, there’s no excuse. In the city, there’s a garbage can every block. I cherish a bit of anarchy too, but littering isn’t sticking anything to anyone. It just makes you a jerk.

Quick little diatribe – the root of this is what also confuses me about anti-environmentalists. Even if you don’t believe in global warming, why would you take issue with keeping the planet clean? It just doesn’t make any sense. So I guess by my reasoning if you’re anti-environmental, you’re also a jerk. It follows.

Surgery Checklist – The Crohn’s Saga Part 74

If you’ve ever gone under the knife before, then you know all about the surgery checklist. Basically, you meet with your surgeon and he or she will review what they’ll be doing during the procedure along with all of the possible risks. I’d had some intestine removed before, so I wasn’t surprised by the risks of bleeding and infection. However, I was sure as hell not prepared to hear that they’d sew up my butthole or that I could develop erectile dysfunction.

The funny thing about these checklists in this situation is that they don’t really make much of a difference. When you’re so sick that you can no longer eat, you really don’t have much of a choice. So, hearing this stuff is basically just heaping more on the pile of horrible things that could happen to you. Don’t get me wrong, it’s great to be informed, but it’s also frustrating to be subjected to yet another scary possibility of something that’s out of your control.

Once again, you’re left with no choice but to laugh. If you can’t do that, you’ll go crazy.