Gastroenterology visit for long haul abdominal issues

Posted by shimjim24 @shimjim24, Jul 1 10:31am

I am having many of typical long haul symptoms but the taste and smell problems. I had 2 CT scans, blood work done twice after visiting my PCP and was referred to an ER Dept. Lots of abnormal values and readings interpreted by both PCP and ER doctor. ER doctor's assessment was that he was not worried and that things should get will get better after my long haul symptoms subside. PCP is more alarmed about bad readings; referring me to surgical doctor consult for abdominal issues and hematology blood work follow-up ( to rule out cancer?). But amidst all this there never was a mention of being referred to a gastroenterologist and for this specialist to actually view the abdominal scans. Plus I have the worst bloating causing me to try force some burps; while I have no food in system or after eating. Real annoying. Is this common to not be referred to such a specialist? I guess as an advocate for myself I ought to ask or insist on this?

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bettyjackson | @bettyjackson | Jul 2 7:24am

Ask&insist on everything. The worst that can happen is to be turned down. Long covid people like us deserve to find answers and try to recover. Best luck to you!

mimioto | @mimioto | Jul 2 11:52am

Can you share what labs were outta whack, how long have you had symptoms and when you had Covid? I had Covid in August 2022 and I’m just now getting help and results after a slew of specialists. I know how it feels. But don’t jump to conclusions on the cancer thing. Labs should have directed doctors that way. I’ve found that often labs show weird stuff that in my case was a temporary response. On the other hand they didn’t always give abnormal values to what was really going on. You definitely need to be persistent.

johncleese12345 | @johncleese12345 | Jul 2 1:48pm

Seems like if the docs can eliminate by going to specialists, they will do it. Now I’m going to a rheumatologist, ent and a neurologist. Gotta find something, right?

shimjim24 | @shimjim24 | Jul 9 7:54pm

In reply to @mimioto "Can you share what labs were outta whack, how long have you had symptoms and when..." + (show)

I tested positive for COVID on May 29, 2024. I started getting my bad joint and swelling pain symptoms two weeks ago, excessive urination about 2 weeks ago. My bloated stomach forcing me to burp out air to alleviate started about 1 1/2 weeks after getting COVID. My D-dimer and C-reactive protein counts were way up possibly indicating possible clotting or embolism issues; white blood cell counts high. A determination by my PCP that I have inflamed mesentery (the membrane that connects the intestines to the wall near the stomach).

mimioto | @mimioto | Jul 9 10:20pm

Those labs are different than mine but like I said my affected ones normalized but symptoms get worse over time. It’s almost two years for me and allergy /immunology has been my last and best stop. In my case it’s mast cell activation that’s caused overloads of histamines and leukotrines in my stomach and upper respiratory systems. Basically a mast cell party. Long Covid seems to be caused by these mast cells , an immune response overdone you might say. Today a GI doc did an endoscopy and discovered and biopsied about 10 stomach ulcers and a lesion in my esophagus. Now the wait for those results. After two years! Like I said be persistent!

mimioto | @mimioto | Jul 10 12:04pm

In reply to @johncleese12345 "Seems like if the docs can eliminate by going to specialists, they will do it. Now..." + (show)

I don’t know when you started. Me? Late August, 2022, a few weeks after Covid.
2022: Cardiology x 4, Primary , Pulmonary, ENT,
2023: Neurology, Cardiology x 4, Primary x 2, Rheumatology, Pulmonary, GI
2024: Primaryx3 &FINALLY there’s progress with
GI ongoing, Allergy/ Immunology ongoing.
So much frustration and anger even at how long it has taken and the unnecessary advancement of my problems.

dloos | @dloos | Jul 12 3:01pm

In reply to @mimioto "I don’t know when you started. Me? Late August, 2022, a few weeks after Covid. 2022:..." + (show)

You sound just like me. Doctor after doctor and no answers. I have seen dozens of doctors and specialists. My condition worsens after two and a half years. I know some have suffered even longer.

I’m so tired of “advocating for myself”! At some point you are just too sick and tired to continue.
I haven’t stopped yet, but I wonder how long I’ll be able to continue.

maryvonne | @maryvonne | Jul 17 5:34pm

Same here. I go to doctors and they shrug. I've had Covid 6 times already since 2019. Three times hospitalized. The first time for two weeks. Each time I got it I had different symptoms and once no symptoms. The only answer I ever get is "Oh, I'm not sure. It could be from the Long Covid but we don't really know." It's like nobody wants to talk or deal with Post Covid symptoms anymore. They just want to ignore it and hope it goes away. No research, no funding just end of discussion leaving Post Covid sufferers comparing notes with each other and doing our own research to prove to the doctors we're not nuts!

dloos | @dloos | Jul 18 12:36pm

In reply to @maryvonne "Same here. I go to doctors and they shrug. I've had Covid 6 times already since..." + (show)

I know. I recently had a doctor say “Lots of people would like to change places with you.”
I’m not saying I’m the sickest person in the world! I’m saying I’m sick and getting worse, please help me. Do I have to be on my deathbed to get help?
My vision is greatly deteriorated and my hearing is distorted with tinnitus and hyperacusis. None of this is easy to bear. Without a wheelchair, it seems nobody believes the suffering.
I’m so disappointed in doctors.

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