Help wanted (Score so far related)

[Jersey Girl]

Aww that sounds like an amazing appointment. I love that he was patient with you and worked with you.

Hope the new medicines help and things continue to improve. It sounds like you are on track with your weight and lower end of normal isn't scary. Still got my imaginary fingers crossed that you continue to see improvements

Best and most productive GI appointment I've had yet! One thing that impressed me most was that he took over my "hit list" and made sure to go through it all top to bottom. Never had anyone do that before. He never rushed and never treated me like I was inferior to him. His approach was that of partnership. That's what I always hope to find in a provider. Still waiting for one RX to come through. Will call the pharmacy tomorrow because they might not have sent me a text message for it. Sometimes that happens.

I'm doing very well! Day 5 in a string of good days! I'll be careful not to mess that up. I want so much to move forward.

[Jersey Girl]

It's so good to wake up feeling so much better after such a long time feeling so poorly so much of the time. See? Don't even try it. I don't know how I ended up using that word as a filler in my posts. It gives the effect of a public speaker using "um" in their presentations and I didn't do that in real life as a guest speaker or administrator. Whatevs.

Thank you so much for your encouragement!

Um, well, we’ve seen you suffer, so “so” helps to convey your feelings of hope and encouragement.

My hope is soaring right now. I'm on day 5 of a string of good days and feeling well. I'm not even cautiously optimistic. I KNOW that my gut is healing now. Lots of good "activity" going on with plenty of sound effects. All signs of good motility. I'm being extra mindful of what I'm eating.

My new best thing: Grilled chicken, broccoli florets (no stems), PASTA with PARMESAN CHEESE sprinkled on top! It's a real meal I might have had before I got this! I'm using the parm in the plastic jar...in our family it's known as "shakey cheese". Previously I would have used shredded parm from the grocery store but I'll take the shakey cheese and praise the Lord for it...and I DO. I don't know how many times I've said "Lord, I love this so much. Thank you!"

Even so...to get that meal I started with the chicken and broccoli a couple of days, then added the pasta with olive oil and dried basil from my garden for a couple of days and then added the cheese to it. NO triggering whatsoever!

I know it's important to keep using that method of reintroduction.

[IWMP]

<3

So happy for you right now. I think the more your tummy heals the more you will be able to introduce things.

My daughter has CMPA as a baby and it took a long time to work out what was wrong. Has all the colic, reflux things but she screamed for 4 months. Swollen tummy with purple streaks. I asked could she have milk allergy and the Dr said she's breastfed so it doesn't go into the milk. In the end up, I went dairy free because I was desperate and within two weeks she was happy and it hit me when she was laying in her cot awake and just being there with no upset. Anyway my point was... We had to do the milk ladder when she got older and it's like you go up one step and then wait a couple of days and if no reaction you accept that and then a couple of weeks later you go to the next step and you keep going until you get a reaction. Then you come back down the ladder a little and give it time and then continue up and eventually you get to the top of the ladder. Sometimes we had to restart the ladder. She was able to be up as far as cheese for a long time. I found that when she got ill or caught a cold she would be intolerant again and we'd have to go back a lot.

Now she is fine with dairy. My son isn't but I didn't work out he had it until my daughter was finally diagnosed.

[Jersey Girl]

<3

So happy for you right now. I think the more your tummy heals the more you will be able to introduce things.

Thanks, Nicky! I think it's a critical time for me right now. Have to be careful not to irritate the tummy.

My daughter has CMPA as a baby and it took a long time to work out what was wrong. Has all the colic, reflux things but she screamed for 4 months. Swollen tummy with purple streaks. I asked could she have milk allergy and the Dr said she's breastfed so it doesn't go into the milk. In the end up, I went dairy free because I was desperate and within two weeks she was happy and it hit me when she was laying in her cot awake and just being there with no upset. Anyway my point was... We had to do the milk ladder when she got older and it's like you go up one step and then wait a couple of days and if no reaction you accept that and then a couple of weeks later you go to the next step and you keep going until you get a reaction. Then you come back down the ladder a little and give it time and then continue up and eventually you get to the top of the ladder. Sometimes we had to restart the ladder. She was able to be up as far as cheese for a long time. I found that when she got ill or caught a cold she would be intolerant again and we'd have to go back a lot.

Now she is fine with dairy. [deleted] isn't but I didn't work out he had it until [deleted] was finally diagnosed.

Those 4 months had to be nerve wracking! But you followed your instincts, tried going dairy free and it worked! by the way, I think your doc was completely wrong. I learned a long time ago and the hard way that doctors don't know everything. The milk ladder process sounds exactly like what I'm trying to do. Try one thing, wait, try another. It's really the reintroduction phase of an elimination diet.

[Marcus]

... by the way, I think your doc was completely wrong. I learned a long time ago and the hard way that doctors don't know everything...

Amen to that.

[IWMP]

<3

So happy for you right now. I think the more your tummy heals the more you will be able to introduce things.

Thanks, Nicky! I think it's a critical time for me right now. Have to be careful not to irritate the tummy.

My daughter has CMPA as a baby and it took a long time to work out what was wrong. Has all the colic, reflux things but she screamed for 4 months. Swollen tummy with purple streaks. I asked could she have milk allergy and the Dr said she's breastfed so it doesn't go into the milk. In the end up, I went dairy free because I was desperate and within two weeks she was happy and it hit me when she was laying in her cot awake and just being there with no upset. Anyway my point was... We had to do the milk ladder when she got older and it's like you go up one step and then wait a couple of days and if no reaction you accept that and then a couple of weeks later you go to the next step and you keep going until you get a reaction. Then you come back down the ladder a little and give it time and then continue up and eventually you get to the top of the ladder. Sometimes we had to restart the ladder. She was able to be up as far as cheese for a long time. I found that when she got ill or caught a cold she would be intolerant again and we'd have to go back a lot.

Now she is fine with dairy. My son isn't but I didn't work out he had it until my daughter was finally diagnosed.

Those 4 months had to be nerve wracking! But you followed your instincts, tried going dairy free and it worked! by the way, I think your doc was completely wrong. I learned a long time ago and the hard way that doctors don't know everything. The milk ladder process sounds exactly like what I'm trying to do. Try one thing, wait, try another. It's really the reintroduction phase of an elimination diet.

The milk ladder works. The early months with my daughter were hard. Very hard. But you get to a point where you are desperate to try anything. I had the hospital nurse tell me once when she was projectile vomiting in front of them that it was because I breastfed her wrong. Just a hard time.

How are things going?

[Jersey Girl]

... by the way, I think your doc was completely wrong. I learned a long time ago and the hard way that doctors don't know everything...

Amen to that.

Can you imagine a doc saying that food doesn't pass through in breast milk? They used to tell us to avoid gas producing foods such as beans, right? But dairy can't pass through? Pirate did the right thing to follow her instincts. We're not always successful but there IS such a thing as instinct if some of the "professionals" would just get out of the way and let us be. I had military docs and nurses back in the day. NOT a good experience since the regularly contradicted each other and as a new mother left me so confused (And scared! It was a teaching hospital, I could tell you stories!) on any number of issues. And...no internet to look to for help back then either. I didn't even have a name back then. They called everyone "Mom". How bloody awful is that!

[Jersey Girl]

The milk ladder works. The early months with my daughter were hard. Very hard. But you get to a point where you are desperate to try anything. I had the hospital nurse tell me once when she was projectile vomiting in front of them that it was because I breastfed her wrong. Just a hard time.

We had one colicky baby. It was like being stuck in a loop. You could tell the time when symptoms would start. Lasted about an hour or so...every. single. night. I didn't know that gripe water even existed so we toughed it out every night. The Boy had a way of holding the baby on his arm--football hold--and that seemed to help things. I was a breast feeding mess with our first! As I stated to Marcus, the military docs and nurses contradicted each other regularly and often in the same appointment! There was no internet or youtube to turn to back then. I think even with those resources it's often a difficult start even with a second child. Each child is so different in nature. And that, my friend, is nature's way of keeping mothers perpetually off balance! It's in our job description!

How are things going?

Nicky...I feel like I am coming back to LIFE! I've had a full week of good days. Some p.m. symptoms on some nights but right now it's night time and I've got no symptoms at all. In the past I would say...I think I might be getting better or I think I'm getting better. Right now I can say that I KNOW I'm getting better.

I know my tummy is working. Not completely normal but it's definitely working. I imagine that all this time that it's been impaired, it's going to take a while before things are top notch. I'm not good with assigning percentages but I think I could conservatively say I'm 85% better.

There was a mix up with the prescriptions. There were 2 digestive enzyme prescriptions (Creon it has 3 enzymes) to pick up of 2 different strengths. I looked at the doctor's notes today and saw the strength he ordered but I'm going to give a call tomorrow just to clarify because it's the stronger of the two. I think I'd rather take the lesser to start with?

The pain killer drug wasn't there. It's not in his notes either. It is just as well. I ended up looking at the side effects. It has possible psychiatric side effects. I wouldn't take it on a dare. If I had mental health issues I'd give it a go with an appropriate med but not for this kind of situation. If he wants to RX it I'd keep it on the shelf. But I know me. It might be nice to have it but I know I won't take it. It's actually a drug that the ER prescribed that one night when I went by ambulance. Maybe I'll get that one filled and just keep it. I'm undecided. I really don't want to waste product though. Quite frankly, I'd rather be shot up with morphine again and live through the nausea rather than try a med that has possible psych side effects.

But I'm better. Really better! It's so strange to feel my tummy with no symptoms. I haven't felt this way in 1.5+ years. You know how they say you don't know how bad you feel until you feel better? That's me right now. I lived with pain for so long that I'm having to get used to feeling sensations of normal. All that time I had some level of pain in the abdomen. To feel no pain at all is astonishing!

I'm constantly "Thank you, Lord! Lord thank you for this!" "Lord look what I managed to do today!" all day long!

[Jersey Girl]

Oh. Boy. Routine fasting blood labs are done. Results in.

Let's see how close Dr. Jersey was, shall we? Using my previously posted brain dump. Bolding stuff. Enlarging stuff.

Consider this an update with a side of righteous indignation.

Risk Factors for SIBO:

Diverticulosis
Hashimoto's (Thyroxine oral solution-pre authorization)
Sharp turn from transverse colon to descending colon as per CT scan at ER?
Long term use of Pepcid, antacids
ER CT Scan: Ascending colon makes "sharp turn" to the transverse colon.

Treatments:

Rifaximin
Pepcid (self titrated off approx. 1.5 to 2 months ago) (self treatment)
Increased fiber (Self treatment)
Probiotics (VSL #4 shelf stable)
FD Gard
Simethicone
Abdominal massage routine

Pain Killer????
B12??
Digestive enzymes??? (Lipase for fats? Protease for protein? Anything?)
Oh and remember I took the Hashimoto's Studies with me to show what it can do to the digestive system?

Thyroid Peroxidase (TPO) Ab That's the antibodies test for Hashimoto's
Result: OFF THE CHARTS ELEVATED

MCV B12 and Anemia
Result: ELEVATED

eGFR creatinine levels
Result: ELEVATED

Dear Friends...I am not a doctor. Still, I can tell you without question that ALL of the above point directly to Hashimoto's. And because I have taken meds as directed it might even oh, I dunno, point to poor absorption. You know...like the 3 studies I took with me from the NIH that show how poor absorption of the meds to treat Hashimoto's can screw up your GUT.

In other words, it is just as I said. Could I be wrong? Sure. But I'm not wrong.

Gastro labs are not completed yet. I'm going to have the routine adult lab panel report sent to the Gastro doc asap* and see if he can make the case for oral solution thyroid meds with Tricare as medically necessary and if that doesn't fly, I'll pay for them out of pocket MYSELF.

*Done

[Jersey Girl]

Moving this forward. I'm going to need it.

Update: Gastro Follow Up

I went in with a hit list and directed my own appointment. No one seems to mind when I do it. I was after something again and...I got it, too.

Basic hit list:

1. Hashimoto's link to SIBO.

I've known about this for perhaps 6-10-ish months or more. 80-ish % of SIBO patients (or related) Have Hashimoto's--mostly women. Kept getting pushed aside for something else. Had copies of 3 studies. I can articulate the reasons why there's a link and I did. I'll put the links here.

Solution: Switch from Levothyroxine in table form to oral solution with no additives. Tables are poorly absorbed, liquid is easily absorbed. Candidates noted improvement in symptoms in 2 weeks time, 6 & 12 weeks...good to go! Complete thyroid panel including antibody test for Hashimoto's. Follow thyroid panel at 6-8 week intervals.

Gastro can't do it, Primary can and I know she'll do it.

https://pmc.ncbi.nlm.nih.gov/articles/PMC4056127/

https://pmc.ncbi.nlm.nih.gov/articles/PMC8453642/

https://pubmed.ncbi.nlm.nih.gov/38490469/

2. Testing for pancreatitis. Hold that thought.

3. Consult with staff dietician to assist in weight gain.

4. Follow up with Gastro Doc: The NP knows when she's out of her depth and I like that about her. Time to trade up to the Doc. Same Doc who did the scopes. BYU grad. Jan 28th.

I got all of the above dealt with in one go.

Farm labs/RX out to Primary and the Gastro Doc will know exactly what I'm talking about with Hashimoto's, pancreatitis testing...plus diverticulosis...it's all linked together and you can draw a line between the onset of Hashimoto's directly to SIBO. We'll just see how this goes.

Feels pretty good to address all of those concerns!

One good thing: I can eat original Ruffles potato chips. Low FODMAP. Been stuffing them in my face the past 2 days. NO reaction whatsoever. Being conservative about it--I'm lying. Eating something normal makes me feel human.

(Noticing typos in my posts and messages. The keys stick on this chromebook plus some significant keys have worn off labels. Also I type fast and there's a delay in the response on this sad little thing. So it's either my brain or the computer. Just mentioning.)

It's the computer.