Will I remain a mystery?

Hi hyrulewarrior,

I am so sorry, I also have had GI problems since young childhood. Since COVID has made things so much worse, talk to your doctor about vagus nerve damage. I saw a specialist who treats autonomic dysfunction shortly after COVD. She was booked solid for almost a year due to so many patients suffering from long COVID. The virus may have damaged your vagus nerve or GI nerves. Also, believe it or not, but pelvic floor therapy could really help increase motility. Getting an evaluation would be worth it. I have learned how to massage my whole abdominal cavity and slowly I am making improvements. It can help with diarrhea and vomiting because it helps regulate peristalsis activity. I really hope that you get answers and treatment soon. You are too young to be so disabled. Hang in there; I will be praying for you. ❤️🙏🤗

Have they ever did a test on you where they put a tube like a two down your throat for 24/7 and see about your acid reflux or how much acid reflux or food comes up and you were a little box and see how much stuff is coming up or to see if your flap is closing at the bottom of your stomach are that is closing tight cuz if that's not been closing and keeping your food down that might be causing your food to come back up I'm going to be having that test done on next Wednesday and it is called GI motility proviDer.

Jen550 suggestion on getting copies of everything is SUPER GOOD AND HELPFUL. I thought I had done a decent job of this, but now that I've got to find new drs, I realized I didn't do a good enough job.

You're not a medical anomaly! Similar to you, sometimes I feel like medicine has forgotten about folks with conditions that are difficult to diagnose HOWEVER, seek help from research/teaching hospitals or tertiary care institutions since they study rare conditions and are aware of newer treatment options.

I went to a conference by the Oley Foundation last week. The guest speaker was a doctor who spoke about things that patients dealing with a chronic illness can do to get better medical care. When approaching your medical team, keep the following in mind:
- The eyes only see what the mind knows (doctors don't know everything...but they may refer you to somebody else who might see things differently based on their experience...it's ok to seek more opinions)
- Lay your cards on the table (keep track of all your medical visits/tests and results and review with your medical team)
- Ask them..."what else could it be?" (doctors hesitate to diagnose something that doesn't fit certain criteria neatly...asking for working diagnosis might open more doors to see specialists, and a working diagnosis can change as more details are revealed.)

Sadly, chronic illnesses are difficult to diagnose because symptoms manifest slowly over time. Gastroparesis might be a working diagnosis in your case. Self-care, connecting with others via online groups like this and support groups can help make your journey less daunting, as others have been were you are. For me, my greatest wish is to bounce back quickly from flare-ups so I can continue to enjoy life. I wish the same for you...to return to a life you enjoy.

(The doctor I mentioned earlier has an online presence on Tiktok as @littlemissdiagnosed)

8628 small meals a day try something on ginger candy and small sips of ginger tea do not eat spicy or acid foods like tomatoes or grapefruits are lemons are limes for lemonade or orange juice try to do bland who would like the Bratz diet do it 6 to 8 times a day take little bites to it real slowly and see how that works take deep breaths in and out six times and try to relax and try to pray or do drink deep breathing exercises. 😇😇🙏🙏 You might have gastral Priuses but your doctor might just might not want to acknowledge it you might just want to stick to the gastropriasis diets like Coke and crackers and like do the brats diet for a couple of weeks and ginger and tea and see how you feel it doesn't matter if he says you don't you just might want to just stick to it and try it out by yourself if you feel better then it you probably do because I have gastroparesis and my doctor was saying I didn't I did and then they said I didn't but I just stuck to it and I started feeling better and you can have flare ups I have other problems too that's why I'm doing this test they kept on saying I didn't have this but now I had that other test and where I swallowed some stuff and it showed all my schedule that I had to burn study done and all that for him stuff came back up now I'm having that other study done next Wednesday you just got to be persistent with him or get a second opinion and get a different GI doctor and start with a clean slate. It sure how so you can always start with a clean slate and it clean doctor. Sometimes when you bend what a doctor a lot and you have a lot of stuff going on they kind of get frustrated and they don't know what to do. I don't know where you live but you might want to try to go to at University call it a university school cuz they had more tests they have doctors that are students that try to do their best and they'll come up with all types of tests and they might even have studies that you can join. And research hang in there and prayers for you it'll get better cuz I was there too. Let me give you FFM personal information for worrying about it can make it worse. And stress can make it worse too. A prayers and God bless you 😇😇🙏🙏🙏

Hello everyone, hoping this will notify those who have been on this thread before. I know it’s been awhile, I’ve been battling a lot of personal things I’d rather not share however this has put me a little behind in everything. Along with this the Mayo Clinic told me they do not take my insurance or anything like it, I can’t afford to leave AZ let alone pay out of pocket for a doctor it’s just not in my cards, I’m back to trying to find a doctor that’ll take my insurance and give me the time of day. So far no luck, but I’m still hoping. On the bright side my primary care physician was able to fight with my insurance and get me on linzess!! This medication has helped me SO MUCH!! it took a bit for it to start working right but it’s been so helpful going to the restroom properly and it’s definitely helped me avoid flare ups of vomiting as I’m not horrendously backed up on top of everything else. The insurance gets stupid about it so please pray I get more refills because this helps me more than anything has so far!! I appreciate everyone here and I hope you all have an amazing day, I wish I had bigger better updates for you guys but it’s been so long and I felt I should share what progress I do have 🙂

jen550,
Would you please tell me more about the vagus nerve and ANS , I am supposing they are related to constipation. Is there a specific way you do the massaging?
Thanx, ShelleyW

Hyrulewarrior,
It's Shelley again. I just re-read your initial message. Did you get the answers from your tests? Were they helpful? Did your endoscopy have biopsies taken, to be tested for lots of things, I am thinking celiac disease, cuz that was the final diagnosis, after 5 years of playing the guinea pig for mega doses of vitamin D, iron infusions. My calcium is too high, for me, I am 65. It seems to be related to potassium levels in some cases. You mentioned your Potassium and such were plummeting...what others are plummeting? How about your Calcium, Magnesium, vitamin D, PTH levels?
For me, I have had to always supplement Linzess/others with miralax...now many years later I have to supplement with 2-3x the normal amount of miralax and use some Metamucil, I have found that the gummies of Metamucil are much better, for me. But I must only take them when I'm taking the miralax. Do you have meds that are effective for you, for the nausea? Zofran is what the hospital always tries to get me to take, but not for me, Phenergan is much much better. Compazine, old med, but very strong and effective, 🤪if you're not highly allergic to it 🤪, like I found out while 3 months pregnant with twins and puking my guts out, while in the hospital for puking my guts out. Do any of your meds, that you need, but might puke out, available by auto injections? Gosh, I hope you get some relief from somewhere. ShelleyW