Early Health Update
Published: Sat, 06/10/23
It’s been about 3 weeks now since I have been eating a sufficient amount of protein.
That feeling of being out of breath has pretty much ceased. I’m up to two miles every morning on my walks. I’m not 100%, and I may still be walking slower on certain days, but I’m definitely moving in the right direction with improving versus declining. This is the first time it looks like that I may pull out of this ‘out of breath’ low iron situation on my own without the help of the ER.
I’ve been doing great with my new diet as I continue to eat a lot of protein daily. However, the Prednisone weaning is at its worst. I get headaches, and I get really bad night sweats like crazy as my body pushes the Prednisone out of my body. I am literally waking up 3-4 times each night drenched in sweat. I have to change my clothes each time, because I am soaked. I am now sleeping on a towel so I can change it throughout the night so I can sleep on a dry surface. Another woman who was in the same situation as me remembers the night sweating all too well from weaning off of Prednisone. She said it was like weaning off of a serious drug.
Weaning off of prednisone is also taking my appetite away big time, but I am fighting it. I think the weaning process is making me sick with a cough, so as usual, it makes me want to go into fasting mode. However, as long as I eat my first yogurt meal in the morning, no matter how difficult it is, it triggers my appetite for the rest of the day, and my appetite is great for the rest of the day.
After my last health update, a bunch of people wrote in giving dietary suggestions. These dietary suggestions were quite interesting this time around, because so many of the recommendations were surprisingly very similar. In fact, they were so similar to the point where I could categorize the majority of the suggestions into the following three categories.
- One big group of readers highly suggested that I eat grass-fed meat, and how I needed to read the Carnivore diet, because of how it changed their lives forever.
- Another big group of readers said that I was doing everything perfect, but that I needed more fat in my diet.
- Another group of readers suggested that I should take Amino Acid supplements
I also saw that nutritionist on a zoom call lol. She liked what I was doing in terms of getting protein, but she had two pretty good suggestions on top of that. One of the suggestion that she had was actually the same as one of the categories above from our readers. Can you guess what it was?
The first suggestion that the nutritionist gave me was to make sure that I was getting enough calories. She said that if I’m not getting enough calories, then eating protein won’t help me too much. She counted my calories on the zoom call with a calorie counter, and she thinks that I was at a good number of calories per day. Therefore, we should be good there.
The Nutritionists second suggestion was the suggestion that was the same as one of the categories above from my readers. She suggested that I eat more healthy fats, in particular unsaturated fats. She was happy that I was eating saturated fats, but suggested that I also eat unsaturated fats like an avocado. She also said nuts, nut butters, or nut and seed oils would be good if I could handle them. The fat would provide me more calories and stored energy.
So for the group of readers who said that I needed more fat in my diet are the winners! I’m just playing. Everyone had great ideas.
However, half the people that recommended that I eat more fat were saying that I should eat flaxseed oil and other seed oils, because they are good for inflammation, and the other half of the people who said that I needed more fat said that those nut and seed oils are poison, and that I should eat grass fed butter lol.
Anyway, the seed oils give me diarrhea and they sometimes make me drowsy after I eat them. I can’t do nuts or nut butters yet either or I have pain. I still have hope about eating nut butters in the somewhat near future. I’ll see if I can add a little bit of avocado and organic grass fed butter with my fish or something. I also failed to mention to you guys that I eat mayonnaise with my fish lol. I just didn’t want to deal with the stress of being critiqued on my diet, and I thought that mayonnaise would set some people off. Yeah, there is probably another thing that I didn’t mention that I eat in my diet such as something like bbq sauce, or something like that, and I left that out too, tee hee hee. At least they are covered in many raw cut up cherry tomatoes lol. The nutritionist was actually happy about the monounsaturated fat that I got from the Mayonnaise, but she still wanted to see me consume the unsaturated fats.
Anyway, it’s still too early to tell how this protein eating situation is going, because it takes 2-4 months to heal from a protein deficiency. If it’s working, I’m probably rebuilding the most delicate and important tissues first, and then I’ll probably start seeing results in the standard muscles in my body. I did gain a couple of pounds.
Furthermore, I have been off of Prednisone for about three weeks now with no relapses! Could it be the protein?
After my last health update, I started to feel like I was getting food-logged from eating too much food or something. I even ended up with a cough.
As I normally do, I tried to roll around in my head and figure out what the cause of this cough was. Was it because I was eating 3 times a day? Was it because I was eating dairy? However, I’ve eaten these high protein yogurts in the past so many times with no problem. However not 4 a day. Maybe my body isn’t used to them anymore? Maybe it was from eating earlier in the morning than normal, and also eating later at night? As you can see, I was starting to go mad again lol.
So there I was not feeling well, thinking I was food-logged and I only ate 2 times that next day. I still probably got 80 grams of protein that day, but I started to go into this pattern again of eating less.
I actually loved eating less that day, but it I knew that it was going against what I needed to do. The next day, I got a tinge of pain in my colon. I get pains here and there when I wean off of prednisone, and It triggered immediately in my head that the cough might be from the weaning off of Prednisone and not from eating differently. Duh. At this point I was off of Prednisone for only 9 days total. I had to experiment and do a test. I took only 1/4 mg of Prednisone that day to see what would happen. The cough practically disappeared, and I believe it just slowed down the withdrawals and detox of the prednisone.
Since my body was so used to not taking Prednisone, a measly 1/4 of a mg gave me a headache the next day, and it was so hard to sleep due to how stimulated I was from it. However, it was enough to stop the detox. I have been off the Prednisone ever since, which is another week on top of that 9 days at the time of writing this. I am so close to being on the other side of this Prednisone fiasco. I think that I might make it this time around with no relapses! I have also eaten 3 meals every day since that one day of eating only twice.
Again, when I come off of prednisone, it feels like my body is breaking down, and it becomes more achy and arthritic. I get all sorts of pains during the weaning process throughout my arms, hands, and legs. This is why I think I get those minor colon pain tinges during the weaning process. However, once I get all of the Prednisone out of my system completely, my body balances out, and all of those aches and pains usually go away.
Due to how harsh weaning off of Prednisone is on my body, I become very delicate during this end period of weaning off of Prednisone. Furthermore, I get ill from weaning, it makes me want to fast, and I then end up not getting enough protein in order to regenerate properly. It then just turns into a disaster every time where I usually end up back in the ER.
Even though the odds sound like they are against me, I hope and pray that it’s my protein theory on why I have not been having success coming off of the meds. Regardless, I totally feel like I am going to get off of the Prednisone this time around successfully! I don’t want to get your hopes up or mine. This protein theory is a long-shot, but I’m putting my money on it. The odds are so bad, but the pay out is so good lol.
If you remember from the last health update that I did two weeks ago, I told you that I was going to now hit this colon thing from all angles to see what is going on. I had told you that I was going to meet with a new GI doctor to get down to the bottom of all this madness. Was I misdiagnosed? Do I have Crohn’s disease or not? Geesh.
Well, I had my appointment with my new GI Doctor. I liked him a lot, and here is the plan of action.
He studied everything on my records before he saw me. I don’t think he has 100% of all of my records from my older GI Doctors, but he has all the tests that were done in the hospitals from all of my ER visits.
There were two or three X-rays of concern that he mentioned, and I also remember these results from my past. Whenever I go to the ER, they always take X-rays to see what is going on. There were a few instances, where they saw possible issues in the X-rays. However, an X-ray isn’t clear enough so they can only make guesses and assumptions based off of what they see, and suggest further testing.
There was an X-ray from my last most recent visit to the ER, where they may have saw a fistula in my colon in the X-ray. I was advised to go get an MRI after the hospital visit to be sure what it is. However, I was just so happy to get out of the hospital that I didn’t really care at the time. However, now, I want to get down to the bottom of all this, and I am going to get everything taken care of. In another X-ray, he saw that there was also a possible narrowing at one area in the intestines. It may have been where the small intestines and the large intestines meet, but I can’t remember.
In another one of the hospital visit X-rays, they may have saw inflammation at the end of my small intestines, which might indicate that I have Crohn’s disease and not Ulcerative Colitis, but it is unclear. That is probably one of the handful of reasons why my old GI doctors originally misdiagnosed me and said that I had Crohn’s disease, and that they did the wrong surgery. However, my old GI doctors said that they misdiagnosed my misdiagnosis, and that they were pretty certain that I did have Colitis and not Crohn’s. I’m pretty sure that they knew about this test showing possible inflammation in my small intestines, and still ruled Crohn’s Disease out for some reason. Also, it was just a vague X-ray not showing much. Again, my current GI doctor doesn’t have everything from my old GI doctors. Regardless, we are doing everything to get down to the bottom of this. I need to make sure my new GI doctor gets those records from my old GI doctors asap.
My new GI doctor assigned me a stool test of some kind to rule one thing out, and then also referred me to get an MRI to see what is going on with this possible narrowing of my intestines and this possible fistula. This MRI appointment is this Tuesday! Do you see why I am doing health updates more frequently. I’m getting down to the bottom of this fast.
He told me that the next step after this would be to swallow a camera pill that will take 75000 pictures of the inside of my small intestines over a 12 hour period of time or something like that. The goal is to discover if I truly have inflammation in the small intestines, and to discover if I truly have Crohn’s Disease or not. My inflammation markers are always up, but that could be a million different things. I pray so hard that it’s not Crohn’s. If it’s Crohn’s that can cause all sort of issues for me in the long-run. I actually pray that the high inflammation markers are from not eating enough protein lol. If this is the reason and I heal from it, I will shock the medical system.
The reason that I am not getting the camera pill thingy done right now, is because he is concerned that there is a narrowing somewhere in my intestines. If there is a narrowing, the pill can get stuck, and then I would need to have immediate emergency surgery in order to remove it. This is one of the reasons why I am getting the MRI on Tuesday to see if I can swallow this big camera pill thing.
The really cool thing about all of this, is that there are no invasive tests that I need to do. No colonoscopy or endoscopy at this time. Yay.
He also set me up with a referral to go see the Mayo Clinic, because I have a complicated case. My previous GI doctors tried to do the same. These doctors don’t normally handle cases like mine due to how severe and complicated they are I guess. I cringed at the idea of going to the Mayo Clinic, because I have heard such bad things. However, I am trying to hit every possible angle here, and I will do whatever it takes.
I’m just excited to see what this MRI reveals, and then to see what the Small Intestinal Camera will reveal if I am able to do it. I hope that I don’t have to do anymore surgeries if these tests reveal something bad.
I’ll probably do another health update in a week or two after I get this MRI done. Furthermore, I will be much further along of being off of Prednisone. Will I have a relapse, or will I make it to the other side? Every week is a huge milestone at this point when it comes to coming off of the Prednisone. I will update you on everything as I go.
My old GI doctors were so hopeful that I could come off of all meds, and they were pretty certain that I had Colitis, and not Crohn’s. Maybe I baffled them with never healing when coming off of Prednisone and Humira, because I was not eating enough food and protein in order to regenerate everything lol? I hope this low protein issue was the cause. I don’t know. It seems that the odds are not in my favor, but I just can’t drop the hope and belief even a tidbit.
Here is an example of why I can sense the odds are not in my favor.
When I was at the appointment with my new GI Doctor, at the end of the appointment, I asked him if all of my colon problems could be because I was not eating enough protein? He answered this question stating that we need to try to do this small intestinal camera thing. I asked him the question again, “Could my issues be because I was not eating enough protein?” He then answered by stating another issue that we have to handle about my colon, maybe about the fistula or the narrowing of my colon. I literally asked him 4 or 5 times, and he replied each time with some more probable cause of the situation. However, I wasn’t going to stop until he answered my question. I reworded the question one last time by saying, “Even if it’s very unlikely due to all of my possible problems and issues with my colon, could my issue be from not eating enough protein, and is it possible that I may be able to completely heal just from eating more protein alone?” At this point he knew that all I wanted was this one questions answered.
He said, “Yes.”
I then just smiled really big, and that was the end of my appointment.
At least he entertained me, and it is a real possibility. You can see why the odds are not in my favor lol. However, I just can’t give up the hope. I see that I am getting off of Prednisone this time around with no issues so far. Maybe the protein is regenerating me enough so I can finally heal?
I will continue to keep you updated, and I will most likely share another health update in the next week or two.
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Thanks everyone for your support!
Sincerely,
Matt