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Continuous tummy pain post covid

Posted by preocupada @preocupada, Sep 18, 2022

My 13 year old tested positive for COVID on the 1st of May 2022, symptoms were: nausea, vomiting, diarrhea, tummy pain, headache, sore throat, caugh, flem. Around the 10th day her tummy started hurting more, specifically in two areas left and right of bellybutton, took her to A&E sent home with pain killers, no tests; week later returned to A&E, tested for Multisystem inflammatory syndrome, came back negative, sent home with more pain killers. Pediatrician did number of tests: boold, urine, stool, porphyria, helicobacter & tomography all seem to be fine or negative. Sent to digestive Dr, Dr did additional stool samples to test for blood and inflammation in intestines. Faecal calprotectin was 62.3 (normal values 26 - 50). Digestive Dr did no more tests. Told to see a psychologist so they could train her to increase her pain tolerance. 1 month later returned to A&E as pain intensified, on the third day in hospital had ultrasound, signs of fluid and partially swollen appendix, appendix removed se day, more tests done in hospital all seemed normal. Since then had tummy infiltration as Dr's believed tummy problems due to abdominal wall, only caused more pain that subsided after 5-6 days, initial pain still remains. Referred to Digestive again, Dr doing more tests, pending endoscopy. My daughter is in continuous pain all day long, when she eats or drinks her pain intensifies, ends up vomiting due to the pain

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delawarefaith | @delawarefaith | Sep 21, 2022

I had terrible GI symptoms. I went on a dairy free, gluten free, low anti-histamine diet. My PCP put me on omeprazole 40 mg and as long as I follow the diet strictly the stomach gut issues had calmed down considerably. My son has ME/CFS and when he was at his worst he had the same issues. As soon as his ME/CFS calmed down, the food sensitivities eventually went away.

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1 reply
preocupada | @preocupada | Sep 21, 2022
In reply to @delawarefaith "I had terrible GI symptoms. I went on a dairy free, gluten free, low anti-histamine diet...." + (show)
@delawarefaith

I had terrible GI symptoms. I went on a dairy free, gluten free, low anti-histamine diet. My PCP put me on omeprazole 40 mg and as long as I follow the diet strictly the stomach gut issues had calmed down considerably. My son has ME/CFS and when he was at his worst he had the same issues. As soon as his ME/CFS calmed down, the food sensitivities eventually went away.

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Thank you @delawarefaith, I will consult with the Dr, I did take dairy products away from her for a month and no difference, I believe they did a blood test for gluten intolerance when she was in hospital, not sure about the histamine, but will consult. Thank you for the info

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preocupada | @preocupada | Sep 21, 2022
In reply to @ilean "Thanks so much. I am calling Baylor Houston today to see if I can be seen..." + (show)
@ilean

Thanks so much. I am calling Baylor Houston today to see if I can be seen there Mayo clinic turned me down. UTSW Dallas can’t get me in till August 2023! I am on my second GI. The first said I was constipated and then when he realized that was not the case said I had a torn muscle! All of my tests are coming up negative so I don’t know what to do! Again, prayers for your daughter. I have lost 18 pounds since January. Had 4 ER visits and 5 days in the hospital! I have seen 7 specialists!!

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@ilean, may I ask what specialists you have seen, if the GI doesn't find anything would like to know what other specialists she should see. They were going to send her to see a gynaecologist, but when they performed the laparoscopic appendectomy they had a good look and said her ovaries were fine and she had no hernias.

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1 reply
ilean | @ilean | Sep 22, 2022
In reply to @preocupada "@ilean, may I ask what specialists you have seen, if the GI doesn't find anything would..." + (show)
@preocupada

@ilean, may I ask what specialists you have seen, if the GI doesn't find anything would like to know what other specialists she should see. They were going to send her to see a gynaecologist, but when they performed the laparoscopic appendectomy they had a good look and said her ovaries were fine and she had no hernias.

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I have been to my PCP in person and via messaging at least once per week. I have had bloodwork including autoimmune tests. I have had 3 CT’s with and without contrast. I have seen two cardiologists, an electrophysiologist(he diagnosed me with POTS) From everything I have read, it is not uncommon for people with digestive issues to get POTS. I have also seen a Urologist, have had four UTI’s, had an MRI. I have an appointment scheduled with a Rheumatologist, am trying to get into a Neurologist and a new GI. I have also talked to a Psychiatrist (it is not in my head). I have seen 3 ER doctors and one hospitalist. I have had 2 home health nurses come out. I am sure I am missing something. I have been misdiagnosed with constipation, a pulled abdomen muscle, etc.. I also had a pill camera study, wore a 24 hour heart monitor where my heart rate went up to 165. Spent 5 days in the hospital severely dehydrated. Released the day my heart rate went up to 162 when standing! My GI won’t release me to see another GI(how is that possible in the US??). I do have a follow up with my Electrophysiologist next week for my POTS and found a GI 5 hours away at Baylor Houston who can see me Dec 28th. Mind you, I have already lost 18 pounds since late January.

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2 replies
ilean | @ilean | Sep 22, 2022

Oh, I also had my gallbladder removed in March, kidney stones removed in April and have also seen another general surgeon on the recommendation of my PCP!

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1 reply
fiddlesticks | @fiddlesticks | Sep 23, 2022
In reply to @ilean "Oh, I also had my gallbladder removed in March, kidney stones removed in April and have..." + (show)
@ilean

Oh, I also had my gallbladder removed in March, kidney stones removed in April and have also seen another general surgeon on the recommendation of my PCP!

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When I got Covid in Feb/March 2020 I had the typical fever with chills, flu like symptoms and slept a lot. I also had what felt like contractions in my upper abdomen. (I did not lose my taste or smell) But even 3 weeks after the onset I was still not feeling well and had what I now know was the beginning of Long Covid. I did call my GP the first couple of days when I got sick but was who told he wasn't seeing patients due to pandemic....! Well a month later I insisted on blood work getting done as I was still having fevers and was still completely exhausted.. Blood work showed my gall bladder had failed completely and was now gangrenous and needed to be removed. I ended up going too the emergency room and underwent successful surgery to have the gangrenous gall bladder removed. So, apparently the virus settled in my digestive system, the gall bladder. My recovery from the surgery took a good 2 months and I thought, for sure, I would be as good as new. Not so...Here it is 30 months later and I still am dealing with extreme fatigue, spiking fevers, heart palps. and brain fog.

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1 reply
ilean | @ilean | Sep 23, 2022
In reply to @fiddlesticks "When I got Covid in Feb/March 2020 I had the typical fever with chills, flu like..." + (show)
@fiddlesticks

When I got Covid in Feb/March 2020 I had the typical fever with chills, flu like symptoms and slept a lot. I also had what felt like contractions in my upper abdomen. (I did not lose my taste or smell) But even 3 weeks after the onset I was still not feeling well and had what I now know was the beginning of Long Covid. I did call my GP the first couple of days when I got sick but was who told he wasn't seeing patients due to pandemic....! Well a month later I insisted on blood work getting done as I was still having fevers and was still completely exhausted.. Blood work showed my gall bladder had failed completely and was now gangrenous and needed to be removed. I ended up going too the emergency room and underwent successful surgery to have the gangrenous gall bladder removed. So, apparently the virus settled in my digestive system, the gall bladder. My recovery from the surgery took a good 2 months and I thought, for sure, I would be as good as new. Not so...Here it is 30 months later and I still am dealing with extreme fatigue, spiking fevers, heart palps. and brain fog.

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I am so sorry to hear about your Long Covid. It is real and I am shocked at how little doctors understand the GI issues. My gastroenterologist didn’t even connect it. It was my Electrophysiologist!!’
Please keep me updated on your progress.

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delawarefaith | @delawarefaith | Sep 23, 2022
In reply to @ilean "I have been to my PCP in person and via messaging at least once per week...." + (show)
@ilean

I have been to my PCP in person and via messaging at least once per week. I have had bloodwork including autoimmune tests. I have had 3 CT’s with and without contrast. I have seen two cardiologists, an electrophysiologist(he diagnosed me with POTS) From everything I have read, it is not uncommon for people with digestive issues to get POTS. I have also seen a Urologist, have had four UTI’s, had an MRI. I have an appointment scheduled with a Rheumatologist, am trying to get into a Neurologist and a new GI. I have also talked to a Psychiatrist (it is not in my head). I have seen 3 ER doctors and one hospitalist. I have had 2 home health nurses come out. I am sure I am missing something. I have been misdiagnosed with constipation, a pulled abdomen muscle, etc.. I also had a pill camera study, wore a 24 hour heart monitor where my heart rate went up to 165. Spent 5 days in the hospital severely dehydrated. Released the day my heart rate went up to 162 when standing! My GI won’t release me to see another GI(how is that possible in the US??). I do have a follow up with my Electrophysiologist next week for my POTS and found a GI 5 hours away at Baylor Houston who can see me Dec 28th. Mind you, I have already lost 18 pounds since late January.

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I was just diagnosed with POTS from having Long Covid. The gut/stomach issues have been the worse. I went on a very strict dairy free (including lactose and casein), gluten free and low anti-histamine diet. I am also taking prescription strength omeprazole 40 mg. My stomach has not hurt the last week. At this point, I don't care that I am eating chicken and pork chops and turkey most nights. The fact that my stomach doesn't hurt is worth it. I had also lost a lot of weight 8 pounds for me and it has now it has leveled off. I drink a lot of water during the day.

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ilean | @ilean | Sep 23, 2022

I am so sorry you to are having GI issues. I just can’t seem to eat or drink anything. I went to an allergist to see if I was allergic to any type of food and I wasn’t. POTS is such a difficult thing to have.

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preocupada | @preocupada | Sep 24, 2022
In reply to @ilean "I have been to my PCP in person and via messaging at least once per week...." + (show)
@ilean

I have been to my PCP in person and via messaging at least once per week. I have had bloodwork including autoimmune tests. I have had 3 CT’s with and without contrast. I have seen two cardiologists, an electrophysiologist(he diagnosed me with POTS) From everything I have read, it is not uncommon for people with digestive issues to get POTS. I have also seen a Urologist, have had four UTI’s, had an MRI. I have an appointment scheduled with a Rheumatologist, am trying to get into a Neurologist and a new GI. I have also talked to a Psychiatrist (it is not in my head). I have seen 3 ER doctors and one hospitalist. I have had 2 home health nurses come out. I am sure I am missing something. I have been misdiagnosed with constipation, a pulled abdomen muscle, etc.. I also had a pill camera study, wore a 24 hour heart monitor where my heart rate went up to 165. Spent 5 days in the hospital severely dehydrated. Released the day my heart rate went up to 162 when standing! My GI won’t release me to see another GI(how is that possible in the US??). I do have a follow up with my Electrophysiologist next week for my POTS and found a GI 5 hours away at Baylor Houston who can see me Dec 28th. Mind you, I have already lost 18 pounds since late January.

Jump to this post

@ilean, thank you for all the info, sorry to hear all you are going through. While I'm waiting for tests I'm going to try alternative medicine, some of the Dr's are continuously suggesting mental problems that is just putting her down, also saying she has low pain tolerance - really doesn't help. She hasn't had a endoscopy yet, hoping they will call us soon, the first GI she saw didn't bother doing more tests than 2 stool tests and said she didn't have a GI problem. Hoping this second GI takes it a bit more seriously. I have explained numerous times that just eating and drinking causes her more pain, she always feels nausea and generally vomits when in a lot of pain. Also she continuously has a headache, if her tummy pain is really bad it becomes a migraine and she gets dizzy. She had a tomography but with no contrast as this is all the paediatrician could send her, only the specialist can send her more detailed scans

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