MikeO

On 2/22/2024 at 11:13 AM, MaineDoug said:

Indeed! And the hits just keep coming! 🎼

oh....you know it

1 hour ago, MaineDoug said:

homemade pizza Sunday with a little cheese. That led to a major flare with terrible bowel issues and it spiked my BP and HR. Took 3 days to recover.

Haha yeah some foods hit out of the blue. I ate a couple of diabetic friendly brownie fiber bars total mistake. plugged me up for a week.

39 minutes ago, MaineDoug said:

@MikeO,

Thanks. How often do you have attacks? 

every few months or more i would say. they tend to happen in succession a few days in a row then i am good for a while.

@MaineDougpain can be bad during a episode (attack) thankfully they don't happen very often. no i am not taking Creon or some other PERT. i do watch my diet so less meat and fat for now.

Glad to hear that Creon is working for you. sucks when sleep gets disrupted. before i was put on Ranolazine i had issues sleeping on my left side but, now that has cleared up.

Cost of meds sometimes hard to swallow. this last year med costs for me were about $10,000. Glad insurance picked up the cost. 

18 hours ago, MaineDoug said:

ALL DAY! You’re killing me!

Sorry Doug didn't mean to kill you off Lol....sure your hip replacement over time will really help. Can't stress enough how important exercise is and staying active is. I had some bad hip pain for a couple of years so i slacked on exercising and it was notable as to how i felt. so i jump on the treadmill every morning before breakfast (can't say i like it but i do it).

Pulling for you and hope the surgery goes well. 

16 hours ago, MaineDoug said:

Are you NPO before the procedure? Water too? How long is the prep? 
Is the plan for conscious sedation or full anesthesia? 

Yes i will be NPO before the procedure and only a sip of water to take meds the day of. prep is taken in two doses 12pm and 6pm and a bathroom is required. procedure is full anesthesia but may change once i talk to the anesthesiologist.

Day before i will be on a liquid diet so stuff like broth coffee tea jello or popsicles are allowed. what i do for a NPO procedure is to drink a ton of water the day before. helps more than one would think. last procedure i had i only sucked down a half of a IV bag. normally i will drink down the whole bag.  

@MaineDougwhat colon prep is your doc having you take? i was told to buy a store brand that starts with a M and ends with a X

13 minutes ago, Jyoti said:

That is FANTASTIC @MikeO.   We have to celebrate that a LOT!  Because ultimately, any improvement for any of us makes improvement for all of us a little more within the realm of possibility.  Do you think it was primarily dealing with the glucose issues?

going back on my changes first was to get my meds worked out so meaning removing offending meds and then getting the new med doses right for me (in the past i was always overmedicated to a fault). next i figured out that i am sensitive to histamine (allergies, colds etc...) and would vasodilate me and cause presync for me so i take antihistamine when this happens and so far works for me. 

Yes then i suspected food was a huge stressor for me but went down quite a few rabbit holes till we figured out that i have atypical diabetes so having good control of my glucose and has been a huge help. when i mess up a bit the fatigue, blurry vision and orthostatics are right on que. 

Then we did treat for SIBO not to long ago all i can say is i have a ton more energy and gained more weight (sigh) not walking like the hunchback of notre dame.

The last change my GI doc has me doing is not drinking milk and is noticeable. i don't feel like i need to explode when bending down or putting my socks on and see an improvement in bloating. after my scoping the Doc will be discussing food with me.

Oh and my high doses of D3 and adding B12 i swear helps as well. my hip pain that i have dealt with for a couple of years cleared up.

sure there is more but the this is the big ticket items for me.

well if this asked last year at this time i would have said i was struggling with passing out just trying to get up had two visits to the ER for snocope related injuries and being upright was limited to just a few hours before i needed off my feet.

Since i have made huge gains picking off one issue at a time. I kinda feeling guilty posting this but i can make it all day without issues or needing recliner time. Presyncope has been rare once a month and been very mild and is no longer a fear that was always on my mind.

When i do feel the need to be of my feet is not linked to how long i have been up (well maybe) but what was the stressor that caused my symptoms.

Just sharing my world for now

1 hour ago, MaineDoug said:

@MikeO,

How is your weight Mike? I’m down 21 pounds in 3 months. After Creon I stabilized but now I’m back to losing .5 lb/day. 
I’m hoping it’s “healthy” weight loss as I got pretty heavy after 15 years of prednisone, I was always around 180, but plumped up to 233. Now down to 208. 
I plan to get my weight down to a healthy range, AS LONG as I’m not losing it from malabsorption. 

Have you been referred to a dietitian? 
 

Have a great day! 

My weight is up from 172 to 190 after i got my blood sugars under control. weight does wax and wane a little. Gastro does have me not drinking milk for now just to see if it helps with the bloating.

Doug just shoot for a close BMI does not have to be perfect. sure the Creon is a good thing that will help.

I have seen a dietitian a few times but has not always been helpful. GI will be discussing food at the next office visit. 

4 hours ago, MaineDoug said:

Okay, but since I did the research and forwarded the protocol SHOULDN’T I get paid some of the professional fees?

Yep!

53 minutes ago, MaineDoug said:

When are you scheduled?

at the end of the month. thanks sending good vibes i will sending vibes back atcha. last scoping i did not do well with the anesthesia that was used sure i will be in better hands this time. 

19 hours ago, MaineDoug said:

Did they discuss the option of an MRCRP? I’ve read good things

I am aware of the option. but like you said the doc want's biopsies so back to my regularly scheduled nightmare Lol!

Yes this happens to me. can't say i am having adrenaline rushes but i will start to palpitate. 20 mins sounds about right when it happens. I have been told i have postprandial hypotension and have recorded drops in blood pressure post meal so i am assuming (for me) the increase in hr (palpitations) is the bodies response to the drop in BP.

What helps me is i avoid sugar in my diet and eat a lower carb and bit higher protein meals and avoid overeating (smaller portions).  

Well saw Gastro yesterday and she definitely ruled PI ( @MaineDoug) etc....maybe a bit of a fatty liver which can be helped with diet and exercise (i have been doing fasted treadmill walks every morning and seems to be helping).

The Doc still has concerns about the intestinal tract as i continue to have problems so......she ordered the dreaded GI tract camera procedure and wants some biopsies.

More to the story coming.

One more meal that works...noodles are breaded and buttered.

Wish you good luck!

I did not read the whole article but were the trial folks confirmed as to having any autoimmune issues? I agree albumin would be cheaper but in my eyes don't see the medical community here in the states wanting to treat with it just like with blood during surgeries and what not unless it is absolutely needed.   

Keep after what is working for you. Glad to hear your tests came back well.

26 minutes ago, Sarah Tee said:

I have to resign myself to the fact that no matter what I do, this specialist will trip me up in new and unexpected ways every time we interact because of his terrible communication skills

I run into this as well! we are so similar. When i ended up with a new PCP our encounters were pretty awkward to say the least. I was at the height of my issues he had no history with me so was a bit of a go to interact and understand each other. I stuck with him just because i had nothing left in me to go elsewhere.

Fast forward be both are on the same paige he gets my health problems and is up to speed on dysautonomia! we have made a big dent in my care.

I really hope this specialist works out for you. Keep after it.

Hope your flare passes soon. Hang in there!

Oh @Sarah Teethis all too much sounds familiar. I know it is very frustrating. Seems the few providers like this makes it that much harder to be trusting of the rest of the medical community.

I went thru a bad go with the faint clinic that i was going to. I so wanted to be trusting but.....finally figured out i was just being snowballed with a bunch of "balona"

Even my Cardiologist from the same medical network was put off by what the faint clinic was advertising to help with and what they are actually providing. "drink more water and get up slowly" Hahaha.

I drank a cold one and have moved on. yes thinking about still riles me up.    

Well @JennKaysleep is important. not sure how much dysautonomia plays into this. A sleep study seems logical and can be helpful. I do know a few folks that have benefited from a CPAP machine.

please keep us up to date.

Mike

2 hours ago, MaineDoug said:

Be aware, Pancreatitis is sneaky, symptoms are similar to many other conditions

Thanks for the heads up. my GI issues did creep up again. i do see gastro next week. endo still suspects the pancreas. will see where this goes. i have been leaving a oily poop in the bowl as of late. 

On 1/22/2024 at 12:29 AM, Sarah Tee said:

I’ve made it to two weeks – yay!

Good job on the two week milestone. Now shoot for two more with improvements!