u/you1dont1know1me1

What should I be doing now to make my life easier post-op?

I'm getting a feeding tube placed for the 1st time.

East coast US

I have a surgery soon where I'll be overnight inpatient at least 1 night.

Am I good to bring my prescription meds in my med organizer and take when and how I typically do after surgery?

Do I need to have the hospital administer those same drugs out of their collection?

I have some not easily available meds and a compounded one, so idt that's entirely possible.

How does this work?

Those with iv pumps, what's your story?

I asked my sleep specialist about this and brought her my filled out FUNCAP assessment (basically you rank your fatigue levels around different ADLs or activities of daily living and she said that it definitely sounds like I could have it, but it's not something she explicitly treats. She said you are experiencing these symptoms and we're treating you.

Does anyone know anything/ have articles on this? ME/CFS is distinguishable because of the disproportionate PEM or post exertional malaise.

I was just wondering how many of us think they have it too or are sure that they don't or what's up.

It's me againnn. Hiii.

Ok, more questions to my tubies.

I would love your advice on how to update my family.

Your experiences I'm sure would offer really solid insight for me.

I'm just planning on telling a couple local family members i think. Like the ones on my energency contact list.

I was just explaining to someone what hypersomia is and I call it a sleeping beauty disease.

What are our thoughts on that?

I feel like it kinda perfectly explains it. It's impossible to be awake. We miss out on so much of life because the pull of sleep is impossible to ignore.

Granted I know sometimes we're awake and there's stimulants for us, but essentially, as I described is what this disease is.

I feel like this could be our catchy comparision like how POTS has the allergic to gravity thing.

Does anyone else already explain it like this to people? Is this well used and I'm just out of the loop?

How long is the part that's in you supposed to last? Also, what's the term for it?

I'm gonna be posting lots in this flair, so don't get sick of me >.<

Ok, so, what formula brands are we liking?

Does anyone use a formula your insurance doesn't cover?

Does anyone make their own mixtures?

Does anyone regularly push sodas or only do it to unclog?

Any advice and stories are welcome and appreciated

What are we doing around showering?

Do you always cover it up? Only while it's healing? Never?

Hello again,

For other surgies I've had I needed to not have nail polish on. Is that the same for this most likely?

I want to paint my toe nails.

It hurts my back a lot to do, so even though it's probably not gonna be placed for another week or two, I don't want to have to deal with taking it off. (For those worried about the timeline seeing far, I'm outpatient rn, it's not an emergent placement situation. I'm on iv saline rn so I'll be ok👍)

Holy shit community.

I have a gastro who is FINALLY taking responsibility for my nutrition/ hydration.

They're getting me a g-tube to see if I tolerate slow feeds that way before progressing to a J.

They don't require a NG trial before a surgical G.

I really want to avoid having my abdomen cut into but I feel that's probably how everyone feels. I think I'll get any benefit from an NG though. With a surgical G, I'll be able to vent (and drain), and I think I need those aspects most.

You are the experts though.

Masses, what are our thoughts?

They want me to message them tomorrow with my decision.

I'm wondering if my issues are more than gp?

Can anyone share their experience of how they found out they had a galbladder issue or something else contributing to their symptoms?

I lost 15% of my body weight. Although the loose leg skin is EXTREMELY weird compared to howvit used to ne super edema-y. It's pretty neat I can feel the lipedema pebble like granduals in my calves and the inner thigh area by my groin. I had already been able to feel it in the underside of my arms pretty soon into the weight loss. I couldn't really feel it anywherw before because well, being really swollen all the time makes it kind of difficult and super painful to squeeze around. Just thought this was interesting.

What are the motility clinic options in the US?

I've tried to get into a couple but it feels hopeless.

John Hopkins isn't even accepting new patients. UVA denied me 2x with the excuse of too high patient volume and because my dysmotility is already dx. Like, yeah, that's the whole reason a I'm trying to get in, for treatmentttt.

My gastro just sent a referral to Mayo FL and Mayo AZ.

I've heard University of Lousiville and Mayo MN is another option.

Where else is there?

Any advice for keeping blood in my brain so I can tolerate being upright longer?

I can't abdominal bind because of my intestinal dysmotility. When there's compression on my intestines they stop working (even more). Also, my diaphragm is incredibly weak, so I really can't constrict anything breathing related.

Right now, I wear custom thigh high compressions that go up to where my thigh connects with my pelvis.

It feels incredibly difficult to even hold my head up for a few minutes without support. I've tried a structured neck brace and it doesn't work though because it messes with the lymph nodes on the sides of my neck and seems to cut off more blood flow in an unpleasant/ unhelpful way.

Is my only option more salt and flexing my muscles throughout my body to try and keep blood pumping?

I feel really lost and defeated. I'm mid-20s now and have been living with this for over a decade. I want to be able to exist in public spaces. I want longer periods upright. My brain literally feels bad unless I'm inverted. Community, all ideas welcome, please help. (Please me nice too.)

*PS I know nothing replied is actual medical advice. Things I can bring to my doctors or suggestions of doctors to see would be great though. I'm not planning on altering any treatment based on comments alone. I just feel I don't know directions to try anymore.

Replyers, make sure to structure your comments as "have you heard of xyz" or "xyz exists" or "did your dr ever mention xyz" - don't phrase things as medical advise, I know it's not, but it will still fs be removed if you reccomend I try something

Would it be helpful getting a Barium Swallow?

I did one years ago that didn't show GERD.

Then my upper edoscopy showed reflux. Eventually I did a 24hr PH study and it showed it. And when I do FEES test it shows laryngoesophageal reflux consistently.

Would it be worthwhile to do a Barium Swallow? Like, could it possibly show any new information or are all my bases covered?

I'm not sure what other info can be gathered from Barium Swallows that could be helpful or impactful in anyway.

Hey community,

I've heard that there's cross over between aSFN and celiac. Does anyone have both? Anyone know more about it and how it's relevant to celiac? Anyone get the biopsy for to get tested for it?

Looking to learn more :)

Does anyone know if having been on an immunomodulator (Plaquinil) long term will affect AGID antibody panel results?

My rheumatological labs are in normal range now. I did have slightly elevated ANA last year though.

I'm wondering if it'd be best to wait til I'm in a flare or if that'd even matter.

\-Also, if you know of any prep before having these labs drawn. I self-advocated my gastro to order this. They are 0% familiar.

Does anyone know if having been on an immunomodulator (Plaquinil) long term will affect AGID antibody panel results?

My rheumatological labs are in normal range now. I did have slightly elevated ANA last year though.

I'm wondering if it'd be best to wait til I'm in a flare or if that'd even matter.

-Also, if you know of any prep before having these labs drawn. I self-advocated my gastro to order this. They are 0% familiar.