Crazy Health Update
Published: Sat, 07/08/23
Let's start off with the fact that I have been off of Prednisone for 1 month and 3 weeks now. It's like a dream come true. It was a very difficult task and required so much enduring, ambition, and drive.
The only drug that I am on right now is Humira and nothing else. Well, I have been secretly taking one other drug once a year, and I will share what that is towards the end of this health update. I hate taking any meds and I throw a tantrum every single time. However, this one med that I take once a year, I actually beg for.
Anyway, I left you off last month letting you know that I was getting a couple of MRI's done to see if there was a narrowing of my colon, and to see if there was a possible fistula that developed in my Jpouch.
Well, I got the results, and now they need to do a CT Scan, because the MRI wasn't clear enough to reveal everything. However, I believe that they did verify that there is no narrowing in the intestines. Therefore, I can take the camera pill. However, they still don't know if I have a fistula or not, and this is the most important thing that they need to find out before they do anything else.
So I went to a Doctors appointment with my new GI doctor to go over these results. I saw his nurse practitioner or the PA instead of him.
I never really wondered or questioned what a fistula was. I was just like whatever, no big deal, let's just do this and get it over with. However, I started asking questions at this doctors appointment, and she scared the crap out of me. Little did I know that a fistula can cause complications in my Jpouch to the point where I might even need a third surgery. She told me that I might need surgery depending on what this next CT scan shows.
I then just started unloading questions on her. I asked her, "Does this mean that I may need to get surgery, and I can lose my Jpouch and need to poop in a bag out of my stomach for the rest of my life?" She straight says, "I don't know." I asked her why I was meeting with her, and not with the doctor? She told me that he was in the middle of doing a colon procedure on someone.
Then I asked her, "if he is such a proficient GI Doctor who can do these types of colon procedures, why on earth would he need to refer me to the Mayo Clinic as a complicated case?" She told me that if you do need surgery, that's not the type of thing that he can do, and they are more equipped to help you. I'm like, what if I don't do the surgery, what can happen? She said, "Well, if it is a fistula, it's like a walking time bomb", making it sound like it could explode at any moment or something lol.
So now I am freaking out for days on end trying to come to the acceptance that there is a possibility that I might need a bag for the rest of my life. I then found a clinical study online discussing all of the possible complications that could happen with a Jpouch. There were many different sections on many different complications.
In this study, one of the reasons a fistula could occur is due to prolonged corticosteroid use and anemia. I'm just freaking myself out even more, because I was on prolonged Prednisone and I did become anemic multiple times. It said that surgical intervention may be needed or it could result in pouch failure.
Then I read about another complication in this study called the 'Anastomotic Pouch Sinus'. This is a less common complication, and two of the 12 symptoms are night sweats and tailbone pain, which I have. I guess it's just human nature to focus on the causes and symptoms that pertain to me even when there are ten other different symptoms that I don't have and are listed as well.
Anyway, I still get night sweats, even though I've been off the Prednisone for so long. However, it's a lot less now than before. It may just be because of the Humira and my body wants it out. Or maybe I have this Anastomotic Pouch Sinus lol. If I have this, there is a 3% - 8% chance of jpouch failure.
Anyway, so my Mayo Clinic Zoom Tele-visit came about just a few days later where I met with my expert GI Doctor with the Mayo Clinic online. I actually really liked her, and she was super cool. She calmed me down quite a bit.
I explained the entire situation with her, and she told me that there are many possible procedures that we can do that won't require surgery if it's even a fistula. However, we need this CT scan to determine what it actually is. She even said that it may not even be a fistula. It might just be something common like Pouchitis. We can't really do anything until we get those results in.
She told me though that the CT scan had to be an Enterography CT Scan, and she wanted me to double check that is what I had scheduled to get in the next couple of days. I told her that I would call after my zoom session with her to find out, and I would then email her the answer through the email system. Anyway, I called and thankfully it was a Enterography CT Scan. She even called me personally later that day asking me if I found out. Never does a doctor ever do that. I was shocked and I thought it was super cool. Looks like I am going to be getting superior service here.
She didn't rule out the possibility of surgery, but she made me hopeful as if the chances may be low, and that we needed the results of this scan. She told me about different possibilities of the types of more gentler procedures, such as going down through the esophagus to handle it, certain meds, etc. However, it might be nothing.
When you take an MRI or a CT Scan, there is zero radiation. However, they inject you with something called contrast through an IV to highlight the areas that they are scanning. The day after the MRI Scans, I ended up with a bit of colon pain. I didn't need prednisone, and it went away a day later. I thought that it was due to the contrast.
Anyhow, I just got this next Enterography CT Scan done two days ago. The amount of contrast that they used for this scan, was way more than the MRI. You could feel it like crazy going in non-stop. This was just a couple of days ago and I had colon pain today. I took a bath and sweat a lot of it out. This CT Scan contrast detox is way more intense than the MRI contrast detox. I suspect my colon will just feel better on its own again in just a day or two. It's nothing that I can't handle.
Anyway, so as we speak, I am awaiting for the results of this CT Scan. My GI Doctor has it in his hands right now but he hasn't reviewed it yet. I made an appointment with him in like 10 days from now to go over the results. I'm sending this Newsletter out on Saturday, and at that point, my appointment will be this upcoming week. It seems that there is a lot on the line here with these CT Scan test results.
Everything is just going so well with me and my health. My appetite is great, I'm eating well, and all my energy is back from being iron deficient. I've learned how to stay out of the ER. I used to end up in the ER due to either low sodium, or just from getting into that cycle of weaning, feeling ill, and not eating. Now, I only drink water once a day, but I'm drinking crazy amounts of coconut water with these juice powders each day. When I drank too much water in the past, it would dilute my sodium. Combine that with not eating much, it ended up in a recipe for disaster every single time.
Now I'm eating spectacularly well, and I am getting plenty of protein per day, unlike what I was doing before. I am successfully living and loving life now and staying out of the hospital.
Furthermore, I am off Prednisone! There is no more weaning from that. I hope that I don't have to do procedures if this is a fistula where I need steroids again. Ugh.
So now everything is going so well, and I can just get on with my life, but now I've got to deal with this possible fistula thing. It may be a good thing though. Maybe this is the cause of a lot of my problems, such as constant high inflammation markers, and if I fix this, maybe it will fix me up everywhere else. Who knows. Maybe the high inflammation markers are from being deficient in protein lol?
In about two weeks from now, I will see my primary doctor again. That's the 2 months point where I have been eating a substantial amount of protein for exactly two months. We'll get to see my blood levels again, and see how my inflammation markers are doing. Did eating more protein daily help me, or not? Am I absorbing properly, or not?
I've altered my diet a bit compared to how I had it since I last shared a health update. I just wasn't balancing out well on eating three meals a day. In the end I ended up on two larger meals a day. For my two solid meals, I eat two yogurts equalling 40 grams of protein in the morning, and a whopping 10oz of fish later in the day. I'm experimenting with eating a scrambled egg cooked with cottage cheese with the yogurts. If you blend eggs and cottage cheese together and scramble it, it's so good. It's like the new Keto big time recipe that everyone is doing lol.
At one point, I was eating 3 eggs with like 1/4 or 1/2 cup of cottage cheese blended into it instead of the yogurts as my morning meal. Eating two yogurts is just so much easier, and you get even more protein compared to all of this heavy food.
I've been sharing my personal eating habits more openly these last couple of months, more so than I have shared in quite awhile. However, in doing so, I've decided not to take anymore unsolicited advice lol. Customer Service has been instructed to delete all unsolicited advice from here on out. All kind wishes and things like that will pass through to me as I absolutely love those. It's not that I'm not open minded, it just takes a lot out of me and really puts a toll on my well being.
Let me try to explain this in a different way.
If I believed and acted upon every piece of advice after a health update, I’d think that I’m a multiple diseased freak with Lyme disease and parasites, dying from EMF’s, I’d literally be taking over 150 different supplements, eating animal organs daily, seeing 50 different doctors and gurus who could definitely save my life in 20 different states, while waiving tens of thousands of dollars worth of expensive technologically advanced ground-breaking devices around my body. Oh yeah, I forgot to mention that I’d be drinking my freshly squeezed urine at every meal, in a hyperbaric chamber.
What happens is that many people push their phobias on to me and it adds up big time. For example, a person who has dedicated their life to healing from Lyme’s Disease has spent countless hours and days researching on how to heal. Then when they read my health update, and interpret it into thinking that something is wrong with me, they push their Lyme’s Disease Phobias on to me.
Matt, you have Lyme’s Disease, you need to go see this one doctor, he is the only one who can help you, and he has saved my life. Now imagine a numerous amount of people, all with different issues, studying their issues for hours on end, and then pushing all of those different phobias on to poor little ol' me lol. It's a spiritual battle for me to keep that stuff out of my being. They all write with certainty, and when this happens over and over again with many different diseases, it just becomes comical. If you were in my shoes, you would see exactly what I am talking about. This is one of the many reasons why I ask for people to please not send me unsolicited advice. It’s a lot for me to deal with. Now don't get me wrong, I understand everyones good hearts and good intentions in wanting to help me. However, it's just too much for me.
On top of all this, I get endless comments such as:
"The dairy you are eating is not good." or "with all of your X-rays your taking alone could cause a ton of problems."
I get comments like this endlessly. I'm sitting there screaming at the computer, "Those X-Rays saved my life, I wouldn't be here without them, and no, they are not going to cause any problems, and the dairy I eat of two yogurts a day providing me 40 freaking grams of protein a day is the best!" lol
Anyway, It's just too much for me, and my life would just be so much more peaceful this way. It's not worth sifting through hundreds of emails like this in order to find the 2 gems. I hope that you can understand where I am coming from a little bit better now lol.
Okay, moving on, I told you guys that I was going to share with you another pharmaceutical drug that I take once a year. I can't stand taking pharmaceutical drugs, but I literally beg my primary doctor for this one.
As many of you know, I ended up with Osteoporosis. This is not from the Raw Foods Diet. It is a well-known symptom from taking long-term prednisone. This is why I ended up with Osteoporosis. One woman wrote in saying that she is now paying for her long-term steroid use from the past, and has to get her hip replaced as she had AVN (avascular necrosis). Her imaging doctor took some sort of X-ray to discover this, and asked her if she used Steroids long-term. She was just warning me if I get any knee or hip pain to watch out.
I'm trying to avoid things like this by completely fixing my Osteoporosis with this drug that I take once a year. When my primary doctor introduced it to me two years ago when he discovered that I was a mess, he told me not to worry, and that we could fix me up, but I have to listen to what he says. This drug was part of the protocol.
I know that many people don't like to go the unnatural route, but I have found myself in a rut here. Men my age rarely have Osteoporosis. Every year for five years, I am taking this infusion called Relast, which is composed of Zoledronic Acid. I am hoping it's going to help bring my bones back to normal and help avoid fracturing issues in the future like others have experienced from long-term steroid use.
It reduces the incidence of fractures and prevents bone loss and somehow reduces the calcium released from the bones. Reclast binds to the bone cells called osteoclasts, which are involved in the normal process of bone breakdown. This results in reducing the rate of bone loss and in promoting normal bone formation. I've taken it once for two years so far, and the original plan was to take it once a year for five years straight.
I hope that all that lack of nutrition that I experienced over the last couple of years, and the prednisone that I took over the last two years didn't work against these first two Reclast infusions. If I can, I will literally take it for another five years straight if this is the case. Anyway, I am now due for the third Reclast infusion for my bones, but my primary doctor first wanted me to see this nutritionist, and wanted to see me eating more protein and food before he would approve it. As I said, in just another two weeks we will check out my blood levels again to see how far I have come over the first two months of my dietary changes. At that time I will do everything in my power to make sure he assigns me this 3rd reclast infusion.
I'm just trying to repair myself with the tools of the medical system, and I feel like this particular drug was a God sent procedure for me personally. Every time I take it, I can just feel it going to work on my bones. My bones ache for a few of days, but it just feels so right. I can't think of any other drug besides this one that I'd actually want to take.
All right everyone! My next health update is going to be a doozy. Will I have a fistula or not? Can all of this be put behind me now with no more procedures? Can I just get on with my life from here on out, because I am doing so well? Has my new diet improved my situation? Stay tuned for my next exciting health update to see where I stand. Please God, can we put all of this behind me now?
I'll be sure to keep you updated.
After I wrote all of this above, I called to see when my actual GI Doctors Appointment was to review the results of the CT Scan to see if I have a Fistula or not. I totally forgot to write it down. My appointment was actually today, and I went.
On the way to my appointment I called my Primary Doctor. I told him that I saw the Nutritionist, ate 100 grams of protein a day, and did 2x vitamins like he asked me to do for 2 months. He then gave me all of the blood work to do to see if I have improved.
I finally get to my GI Doctors appoingment, I walked in, and they were immediately asking me all sorts questions like, do you have a fever? Do you feel ok? Are you light-headed?, etc. At this point, I knew the results were not good. It was like she was surprised that I was even standing lol.
She said that I either have a fistula or a pocket infection. I asked her, "Which one would be better to have?" She said, "The pocket infection, I guess." She said that the doctor wants me on antibiotics and she prescribed me them. I said, "if it's a fistula I wouldn't need the antibiotics, but you are giving them to me based on the 50% chance that it's an infection?" She says, "Yes." lol
She said yes without flinching, even though there is only a 50% chance that I need them. She then said that in the CT Scan, my entire colon was extremely inflamed.
Dang, that's not good.
Anyway, I told her that they first discovered this possible fistula in one of my ER visits 6 months ago, and they gave me antibiotics at that time. She said it's probably a fistula then, if the antibiotics didn't do anything. However, she still wanted me to take the antibiotics.
I then next told her about that time about 8 months ago, where my previous GI Doctors perscribed an antibiotic. The antiobiotic that they had perscribed me had me bed ridden, gave me a crazy amount of bumps all over my face, hands, feet, and my entire body. I explained that I even had some lumps the size of a gold ball on my body. She researched the computer to see what Antibiotic I took in the past, but she couldn't find it. She told me to call my previous GI Doctor to find out, let her know, and then she'll prescribe a different antibiotic if this is the case.
So I picked up the antibiotics at the pharmacy, and I had the girl at the pharmacy research the antibiotics that I took in the past. It was the same antibiotic that almost killed me. I called the GI Doctor back and I gave a message with the guy who answered the phone. An hour later, my phone dinged that another antibiotic was ready for pick up at the pharmacy, so I got it.
I then just went to hard work this late friday afternoon just before everyone was closing. I tried to make an appointment with the Mayo Clinic GI doctor first due to these results, but they didn't have anyting available. However, I told the receptionist everything that had just happened. She took all of the notes down, and said that someone on the team would get back to me with appointment availability hopefully.
The Mayo Clinic gave me like 12 lab tests to do including blood and feces. She wanted me to complete that before seeing her again.
On Monday morning, I plan to get all of the lab tests done for both my primary doctor and the Mayo Clinic so I can move on to the next phase with all of these doctors.
I went back to the Pharmacy to pick up the second batch of Antibiotics. It just so happens to be in the same building where my Primary Doctor is located. I went there and the nurse brought me in after I explained everything to the receptionist. I just wanted to tell him these results that I got, and all this other stuff is useless now, and I asked for my greatest desire from him, which was getting this Reclast Infusion. The nurse said that you need specific lab tests done before they will even allow me to do the Reclast Infusion. She continued on saying that it was included in the blood work that I am doing on Monday.
Yay, at least the Reclast Infusion is most likely going to get taken care of very soon.
I am glad that I instructed customer service to no longer accept unsolicited advice. I"m a little bit over emotional here, and at moments like this is when the most unsolicited adivce comes in lol. I literally would not be able to handle it right now.
However, you know me, it's now time to look on the bright side here. Even though I fear and shiver at the idea of surgical intervention, maybe it will finally fix me all up to where I can finally get on with my life from here. I certainly pray so.
All right everyone! We have some very exciting things going on right now. Methylene Blue is still available at the Blowout pricing. Furthermore, we now have 12 different kinds of Raw Organic Juice Powders all available 'At-Cost'.
There are so many exciting things going on, and I'm just getting started this month with my New Fulfillment Center. We've just begun. Get ready, because I am not slowing down even one notch.
If you are interested in ordering, click the link below:
https://therawfoodworld.com/product-category/at-cost/
Thanks everyone for your support!
Sincerely,
Matt