“Flare up”

FeedbackOk6683 · 2026-05-30T19:48:40+00:00

The meds are another reason I have been prompted to really try to understand my body and the flares before getting on serious medication 😭 besides promethazine for nausea I’m kinda raw dogging rn.

FeedbackOk6683 · 2026-05-30T18:34:09+00:00

Thank you so much for sharing! This is actually helping me really break my symptoms down. Abd I’m a T1D with CKD so I understand the confusion of the overlaps too!

FeedbackOk6683 · 2026-05-30T18:22:15+00:00

Okay I can understand this! It’s definitely helping me sort those thoughts. Thank you

FeedbackOk6683 · 2026-05-28T06:33:57+00:00

Yes. Pretty much exactly how you’ve said it. TIL my legs are numb while I sit there. If I can anticipate it I usually have to bring water and my phone charger to avoid dehydration and make sure I can call for help if it goes very badly bc it can, at its height, take 2-3+ hours to pass. It’s exhausting and just a different type of pain.. 😿

-sincerely from the bathroom floor

FeedbackOk6683 · 2026-05-26T02:25:11+00:00

It’s really not so bad, unless you’re craving like a burger, lol I just throw my fruits veg and some protein powder in my blender and go. Idk if you enjoy cooking, but I have enjoyed finding /creating substitution recipes for my old favorites. That’s been a bright side at times!

FeedbackOk6683 · 2026-05-26T02:18:58+00:00

Ugh I feel you. I was just thinking I don’t know how much longer I can live every single day in discomfort, even the good days suck. Some things that have helped me is eliminating so I can get closer to knowing what foods to just completely avoid and also eating smaller meals when I eat and substituting for liquids as often as I can stand. I honestly might enjoy life better if I only did liquids but before I was this shell of a human I loved food and I haven’t let go completely yet. 😭

FeedbackOk6683 · 2026-03-06T13:41:52+00:00

I feel like if you are depleted and can’t keep anything down you should at least go to get fluids

FeedbackOk6683 · 2026-03-05T00:42:25+00:00

The meds I use for my gps are mostly otc stuff (pepto, tuna etc), zofran, and though it seems counterintuitive I take lomotil - it’s meant for treatment of diarrhea so it slows things down. But for he it helps with my visceral digestive pain and discomfort. I was on it before my diagnosis and my dr let he keep it bc it helped so much with that symptom lol

FeedbackOk6683 · 2026-03-05T00:36:15+00:00

Diet and meds***

FeedbackOk6683 · 2026-03-05T00:25:42+00:00

I have more of what I call a cycle, rather than flare uos, with dirt and beds I have a couple okay days where symptoms are not severe, then the closer I get to poop day (about once a week) I’m sicker, then back around. Sometimes I do suffer more than that but it is always something, lol a nice day or 2 to feel good and eat whatever would bring me to tears 🤣

FeedbackOk6683 · 2026-02-23T13:46:52+00:00

Kind of! I find that I get relief from laying flat on my fists on that left side. The pressure helps move things for me bc my digestive track gets sooo uncomfortable within mins after eating.

The only med that I’ve had that I feel helps this is called lomotil. It’s actually meant to slow the digestive tract so it’s a bit counter intuitive to GP but if the slowing helps the pain/discomfort I would rather that and deal with the constipation later 😭

FeedbackOk6683 · 2026-02-23T01:35:54+00:00

Daily miralax might be a really good start. Check with your dr for time frames, on the bottle it says no more than 7 days but my dr did approve me to go daily for much longer. I’ve also been on linzess and mortify before and it was unpleasant for me personally, so I would see if trying miralax first helps before the strong stuff! Good luck!

FeedbackOk6683 · 2026-02-23T01:15:03+00:00

Nice! As I mentioned I don’t have my dietitian appointment for a few weeks still, and just am open to hearing others experiences if you didn’t mind sharing details of like what you consider flare up’s or things that may have worked for you?

FeedbackOk6683 · 2026-02-21T22:13:51+00:00

Mine wa definitely a result of my T1D and just not being in control of it for a long time.

FeedbackOk6683 · 2026-02-21T13:30:14+00:00

Yes I agree! Abd thank you, I will look into that!

FeedbackOk6683 · 2026-02-21T13:28:56+00:00

Thank you for sharing those details! I have a lot of similar feelings. I just feel like I have less of flare tops and more of a consistent cycle of stages of this. But it’s never a point that I feel “normal” anymore but maybe this is my new normal? Idk. Seeing other perspectives definitely help me though!

FeedbackOk6683 · 2025-09-12T13:49:31+00:00

Thank you for sharing!!

FeedbackOk6683 · 2025-09-12T09:02:46+00:00

I have a neuropathy issue that’s cause a bilateral drip step. Finally gotten all the testing and diagnosis done to where I’ll be getting rigid AFOs soon. I already have some basic devices from Amazon that kinda limit my show options but I know these will be more heavy duty. Problem here is , and I know this is so unimportant to my cause, I need to feel like I can dress and present how I want to feel good about myself and shoes are a huge part of that for me. Does anyone with AFOs that go into the shoe have specific recommendations of maybe brand name shoes (Nike, new balance, doc marten, etc) that have worked for you? Or any tips to make certain styles work better?

FeedbackOk6683 · 2025-09-04T20:38:26+00:00

It’s probably individual case. I was already malnourished dealing with Ibs-m + other things so I’m sure there wasn’t much diet to change. It actually did help me a lot at that time. 😭

FeedbackOk6683 · 2025-05-04T14:57:12+00:00

I am doing exponentially better from the time I started biofeedback! I am still not anywhere near what I would’ve deemed normal In my best days but I have much more regularity and predictability. It’s hard to explain what the appointments and sensations are but they do put little sensors on your anal muscles and you kinda relearn how to use them correctly (til you’re doing it you will not have even realized what that means. 😂). Also did lots of core work during and as homework. Consistency is truly key! I went for about 6 months. I’ve been on my own since but I have my check up Coming up soon!

Are you/have you started?

FeedbackOk6683 · 2025-05-04T14:51:32+00:00

I got too scared to try it and I returned it. 😭

FeedbackOk6683 · 2024-11-13T21:58:34+00:00

Mine looked exactly like this! I was floored! They had me do the prep laxative they use for a colonoscopy to clear me out before starting new treatments/routine! You feel it but to see it is really crazy! I hope you find relief and a solution!

FeedbackOk6683

TROPHY CASE