I had my latest doctor’s appointment this morning, and it didn’t go nearly as planned. Going into it, I had expected one of two outcomes:
a) I’d be put on enzyme therapy, my feeding tube would be removed, and I’d be free to start eating food again.
b) I’d be put on enzyme therapy, my feeding tube would NOT be removed, but I’d have a follow-up appointment scheduled for another week or so if all goes well.
I wasn’t expecting a third possible outcome: none of the above. More specifically, or vaguely if you prefer, the outcome was:
c) I don’t know what’s wrong, but let’s just wait 2 more weeks and see if it goes away.
If this was the first time I’ve heard this, I’d be ok with it. Instead, I’ve heard this same line pretty much every time I’ve seen this doctor for the past two months. I probably could’ve had my endoscopy scheduled for a month ago and the same result mild scarring would’ve been found. At that point, waiting two weeks to see if I got better would be an acceptable and viable option. At this stage, however, I am not going to continue to just idly wait while nothing seems to be improving. Especially if the only thing wrong with me is that I have scar tissue on my pancreas that is causing the discomfort — when was the last time you saw a scar heal itself in two weeks?
In addition to this recommendation, I’ve been given a lower dose of pain medication and instructions on how to switch from the dilaudid to this new medication. Additionally, I’ve been given two enzyme pills which are to be taken during meals which are “not expected to help, but it can’t hurt.” I was also told to continue to try to eat regularly throughout the day and try out different bland & soft foods to test out my stomach.
My doctor’s fear (and I’d agree that it is a concern) is that i’ll be taken off the feeding tube and my weight will drop dramatically as I won’t be able to eat enough nutrients and calories to sustain myself. That said, I would’ve liked some kind of encouragement or concrete understanding of what my next steps are. Instead, I got a confused look and a “let’s give this a try. See you in two weeks.”
That said, I’ve decided to go on my own. I’ve found a new doctor in my neighborhood that is requesting my medical records tomorrow and will be scheduling an appointment with me shortly after they receive them to discuss my options as a second opinion. I’ve also went out and purchased a variety of more exciting foods that should encourage me to eat (baby food, apple sauce, rice, etc.) and once I get my enzymes, I’m gonna cook me up a “nice” dinner.
So, this is where things stand. We’ll see how the enzymes work along with this new food. I’ve turned down my feeding tube by 10 mls to help make me hungrier (and I’ve been hungry all day, let me tell you). So, wish me luck. I’m sick of sitting around waiting for something to happen and I’m going to make something happen (for better or worse, I guess).
Might I suggest plain couscous cooked in low sodium chicken broth. Much tastier than white rice and it won’t have the binding effect that rice causes when not paired with protein or vegetables. That would be the last thing you need.
The couscous is very easy to digest and very filling.
Good luck Brandon. We are thinking of you.
That’s a great idea. I’m not going to run out and go grab some Couscous just yet, but even cooking the rice in chicken broth will be good.
I was even thinking of taking some of the babyfood I have and mixing it with the rice to give it a little more flavor. Either way, very good idea!