How I’m Feeling

Tough going. I’m feeling pretty miserable as I write this update, but I wanted to get this blog post out, so I’m pushing through.

• I’m still “crashing” every day, even on the minimal diet.

• Eating jello and taking fish oil seem to help soothe my gut a little. But I still have gut pain nearly 24/7.

• I’m not sleeping as well lately and I’m not sure why. Just very fitful at night.

• I keep having issues with my body temperature fluctuating. I get very chilled at times. And, no, this is not COVID. It’s something that I’ve had issues with for years, off and on. I think it could be an autonomic reaction to the irritated nerves. More likely, it’s thyroid-related.

• I’ve been forgetting to take my vitamin D lately, so my joint and muscle pain is flaring up more. Because my gut is so compromised, it’s easy for me to get malnourished, even if I’m eating a balanced diet via my nutrition drink. When my vitamin D levels drop, my body hurts like I’m 80 years old. Even though I have a reminder on my phone to take my evening supplements, somehow, I still forget to take them!

Nutritional Drink

I started with the Kate Farms Peptide 1.5 drink a month or so ago. Last week, I started trying the Nestle Compleat Peptide 1.5. Last night, I recorded a short review video comparing the two. Not sure when I’ll have energy enough to edit that and post it, but I’ll get to it eventually.

The short highlight is that I prefer to mix both of them together. The Nestle doesn’t taste very good, but it’s MUCH cheaper. So if I mix them, I get a decent flavor at a decent price.

Surgeon Selection

Life is chock full of irony.

After so many weeks working so hard to get surgery… I got the call today that I’ve been waiting for!

I have the green-light for surgery with Dr. Sheikh in Los Angeles on December 10th. Everything is set for me to arrive several days before to take care of pre-surgery testing (COVID test, EKG, chest x-ray and blood work). My insurance has approved everything.

In just 2 weeks from now, I could finally be free of the pain, fatigue and misery I’ve been enduring for so many years. In just 1 month from now, I could be back home for Christmas and actually enjoy real food with my family without getting sick.

But… now I’m not so sure I want to go through with it.

As I explained the on the last couple of posts, I found a surgeon in Seattle named Dr. Starnes earlier this month. He’s my first preference for surgery because he’s done more MALS surgeries, has a phenomenal reputation with his past patients, and he’s very thorough in getting out all of the damaged nerves, even if they extend well beyond the celiac ganglion.

So now I have to make a choice: Go ahead with December surgery with Dr. Sheikh in Los Angeles, or wait and see about a March/April surgery with Dr. Starnes in Seattle?

At a glance, it seems obvious that I should just go ahead with surgery as soon as possible. But there’s more to it.

3 concerns about Dr. Sheikh in Los Angeles:

1. He does only about 6 of these surgeries per year. That’s not a lot.

2. I don’t how much to trust his success rate. I know of only 1 other patient, and he’s not far enough down the road of recovery to know if the surgery will be successful long-term.

3. I talked with Dr. Sheikh on the phone twice. I wasn’t able to get as much detail out of him as I would like. He assured me that everything would be fine. I am concerned that he will remove nerves only in the immediate area of the celiac ganglion, and not address nerves that may be damaged further away, like around my gallbladder and liver, where I’ve had pain.

   
   

3 concerns about Dr. Starnes in Seattle:

1. This week, 3 weeks will have passed and I still haven’t been able to get a consultation with Dr. Starnes. Until I talk to him, I really don’t know if and when I’ll be able to get surgery, exactly what his approach is, what his success rate is, etc.

2. I’m hearing from other patients that Dr. Starnes has postponed their December surgeries until March. So I’m not likely to get surgery with him until spring.

3. Dr. Starnes might require a celiac plexus block before I can get surgery. That’s the procedure where needles are injected through the back to the celiac ganglion nerves. Pain medication numbs the nerves for several hours. If you’re able to eat without pain, it’s confirmation that MALS surgery to remove those damaged nerves will work.

My concerns with a celiac plexus block are:

• All of the doctors I’ve been able to find to do the procedure aren’t able to do it for another 3-5 months.

• Even if I have a celiac plexus block, it will likely be pointless. The numbing of the celiac nerves typically lasts about 4 hours. I’d have to eat right away to find out if the block worked. But I don’t handle sedation or anesthesia well. It usually takes me a good 8-10 hours just to wake up after a procedure. And I have extreme dizziness, nausea and vomiting for about 24 hours. There’s just no way I’ll be awake or able to eat to know if the block worked. (I’ve heard from other MALS patients that this has happened to them.)

So I have a very hard decision to make. It’s sort of a “bird in the hand is worth two in the bush” scenario.

I’m going to think things over and make a decision on Monday.

For those who like pros and cons charts, here ya go: