Month: August 2017

Let’s Go Back to the Hospital – The Crohn’s Saga Part 65

It’s always bittersweet when a doctor tells you it’s time to be hospitalized. It’s scary to know that things are that bad, but you also know you’ll get some relief. However, when you’ve already been hospitalized and you know that there’s an ostomy at stake if you don’t recover soon, being told you need to go back is a complete and utter mind-screw.

I’ve had Crohn’s Disease for 25 years now and I’ve been hospitalized for it 4 or 5 times. About 50% of my hospitalizations have ended in surgery. As I said above, in my experience, hearing that you need to go to the hospital is scary, but strangely ok. You’re not sure what the outcome will be and you hate to think that you’re really that sick, but you also know that you’ll get some much needed help. Pain meds, food, water, and even just proper rest can help turn things around. In some ways, hearing the news is even calming. You no longer need to dread what might happen. Instead, you can just let go and accept your fate.

So, how sick do you need to be to have to be hospitalized for Crohn’s? Pretty darn sick. I hadn’t had regular sleep in 6 months due to the prednisone, I had the full-body shakes from the high doses of cyclosporine for about a month, I’d been having trouble eating for a few weeks, I was having nausea and diarrhea after every meal, and now I was having trouble keeping down water. That last point is usually the key indicator. If you can’t even keep water in you, you’re in serious trouble.

I was scared to death that I’d need surgery and an ostomy, but I also knew that I couldn’t make it on my own anymore. I needed to go back to the hospital or I wasn’t going to make it. Sometimes life just doesn’t cut you a break.

Scary Movies – All Sorts

I love scary movies. My fiancé and dog do not. I try to cut them both some slack and not watch these when they’re around, but this is still a pretty common scene in my home.

I can’t exactly explain why I like scary movies so much. I’d love to be able to boast that I don’t get scared, but that’d be a lie. I love these because they make me scared. Now, to be clear, I’m not talking about creepy disturbing torture films like Saw, Hostel, or The Hills Have Eyes. The makers of those movies have confused terror with disgust. A true horror film will provoke the imagination. It’ll suggest just enough to let your deepest fears and nightmares run amok. It’ll make you feel alive.

Ostomy Thoughts Part 3 – The Crohn’s Saga Part 66

Thinking about getting an ostomy is extremely stressful. In Ostomy Thoughts Parts 1 and 2, you saw how much I was dreading the idea. To recap, an ostomy is when they pull your intestine (colon=colostomy, small intestine=ileostomy) through your belly then attach a bag to it to collect fecal matter. I’d been dreading it as long as I’d had Crohn’s Disease (~25 years). I could never wrap my head around living like that and how humiliating it would be. I always said I’d rather die than have one.

I’d always been told that with the advances in modern medicine, it was unlikely that things would ever get so bad that I’d need an ostomy, but there I was facing it was a real possibility. My doctors had been trying Entyvio for a few months, but I was still getting progressively worse. As you saw in the last entry, I had to go back into the hospital because I was struggling to keep down food and drink. Stelara had just been approved in the market, but it would be difficult to obtain and I may have already been too far gone.

So there I was confronting the thing I’d been dreading more than death. I still didn’t know how to feel. I’d always said I’d rather die, but 2 things kept me from committing to that. 1) I’d already been suffering for so long that I didn’t want to endure anymore and 2) I was engaged. Bowing out is ok when you’re single, but when you’re a part of something you care about, it’s much more difficult to give up. I didn’t want to let my fiancé down. I was actually looking forward to a life with her. At the same time though, how could she ever love me and find me attractive if I had part of my intestine dangling out spewing crap uncontrollably into a bag. How could I ever love me or feel attractive?

I didn’t know what to do or how to feel. It was all so much. I just wanted to run away, but I couldn’t. Such is life with Crohn’s Disease.

Narcissistic Politicians – The Worst Person Ever

Narcissistic politicians are absolutely candidates for The Worst Person Ever. Look, I’ve done my best to keep Hoot Deconstructed neutral about a lot of issues, but I can’t stay quiet on this one anymore. It was overshadowed by the repulsive events in Virginia this past weekend, but last week, Donald Trump and Kim Jong-Un got into a pissing contest in which they repeatedly threatened each other with nuclear war. It was disgusting and terrifying.

Here’s the deal. It should be the role of politicians to look after the people they represent. Regardless of your political beliefs, you should expect representation, protection, and a voice for your interests. Not only have these two made it clear that they don’t care about their people, they are playing with nuclear annihilation like it’s some kind of joke. This isn’t funny. You’re casually referencing killing millions of people just to prove that you have the bigger dick. Shame on you. Get over yourselves. Start acting in the interests of your people or step down.

And we the people, how much more of this crap are we going to tolerate? The world has changed. This is that dangerous time in history where technology is bringing us all together, but governments, nations, religions, races, etc. are still tearing us apart. I think it’s time we had politicians who unite us instead of making us see each other as enemies. If this doesn’t start happening soon, we’re not going to make it.

Best Fiancé Ever – The Crohn’s Saga Part 67

So, while I’m the worst fiancé ever, my fiancé is the best fiancé ever. Being a patient in the hospital is a lonely, frightening experience. This was doubly true for me in this case since I was looking down the barrel of a possible ostomy, which I had been dreading for 25 years. I was frustrated and scared, and I wasn’t even sure what outcome I wanted any more.

So, it meant the world to me that she voluntarily took a whole day to keep me company. This helped me feel that whatever happened, thing were going to be ok. Ok for her, ok for me, and ok for us. We even talked about what would happen if I did need an ostomy. It was the validation and support that I needed. That she would do this is one of the many reasons I love her.

And, as a final note, if you’re ever in the hospital and feeling fine on painkillers, definitely check out Mr. Mom. It’s hilarious.