GI and fatigue Issues
Hello all. I've been frequenting this sub for some time since I've been feeling the way that I do. I'm not even sure what I want out of this post, maybe putting everything down to vent or see if others have gone through what I have and provide help/guidance.
I know this is going to be a lot but I wanted to list everything from start to current and add details of tests.
I'm a 37 M living in the US. 6'3 225lbs. I'd consider myself healthy and active prior to all of this I'm very active, I play men's league hockey, I'm also outdoors quite a bit (hunting/fishing) I walk a lot and mountain bike.
I was also a light drinker (beer, typically on weekends) and I used to vape.
Now into the details... There's going to be some gross details, fair warning.
I'll put a tldr at the end too.
August 16th 2024 I picked up lunch at a local pizzeria, later that day I had to run to the store to grab some last minute items as I was leaving for vacation the next day. On the way home I got a horrible stomach ache, one where I didn't think I was going to make it home in time. Luckily I did, I ran to the bathroom and it was pure hell. Straight water consistency and a horrific smell. After that I felt perfectly fine.
August 17th 2024 felt perfectly fine, got on my plane and got to my destination, got into my rental car and started noticing shortness of breath, like I couldn't get a full breath of air, but it wasn't too bad so I didn't think too much about it.
Around the middle of my vacation, I started to get upper abdomen bloating, that contributed to the shortness of breath, I also had another episode of diarrhea that I had before I left. The bloating was getting worse after I would eat.
- August 30th 2024 first day home, I wake up feeling incredibly nauseous, I had zero appetite and felt fatigued, my legs felt like jello. I end up throwing up bile/phlegm and the remainder of the day I felt like garbage.
My stool is diarrhea/loose golden yellow in color.
- August 31st I go to urgent care as I was starting to get a burning sensation in my upper abdomen, specifically right below my sternum/breast bone, my appetite was completely gone. Urgent care did basically nothing for me, they gave me this numbing cocktail and told me to go buy Prilosec since I probably have gastritis. I ended up getting Prilosec took it for a few days and stopped since I was getting worse.
-September 3rd 2024 symptoms were not improving and it started to freak me out so I opted to drive myself to the ER.
The emergency room performed the following
-CT scan - X-ray -Ultra sound (gallbladder, pancreas, liver) -EKG -Urinalysis - Blood work
Results: blood work came back clean with slight elevated bilirubin (1.4) and AST was 76 but ALT was normal at 45. Lipase was a tad low at 9, it says the range was 11-82. But no one seemed worried about the results.
Imaging results were also clean, the CT scan picked up slight fatty liver and bladder walls thickening.
"Normal stomach, small bowel, appendix, and colon. Urinary bladder wall thickening. Normal prostate gland."
"Lung bases are clear, heart normal in size, normal gallbladder, spleen, pancreas, adrenal glands, and kidneys. No hydronephrosis no lymphadenopathy."
I was discharged and was told I would be better served by my PCP.
September 18th 2024 finally get seen by my PCP, my symptoms are still the same, nausea, fatigue, no appetite, if I tried to eat I would feel full immediately/early satiety. PCP orders c diff, ova and parasites and salmonella shigella test.... This is all negative
September 20th 2024 PCP orders cbc blood test. Blood results: bilirubin 1.6, AST 60 ALT 37. Platelets drop from 164 to 107. Everything else is in range.
I also asked for a hepatitis panel (everything came back negative).
September 21st 2024 this is when shit hit the fan and I received new symptoms.
I now developed horrible bad acid reflux. It would wake up me up night, I also developed frequent urination. Urine was golden/amber in color regardless of how much I drank. I would bend over to pick something up and I would throw up bile. My appetite is still gone. I'm getting no sleep, once I was woken up, that was it. Eyes are bloodshot. I wake up in cold sweats, I have chills, anxiety is maxed out, brain fog is more and more frequent. And now I'm experiencing UTI/prostatitis like symptoms. It would burn when I would urinate, felt like my bladder was always full, I felt like I had a golf ball in my ass, it was pure misery.
At this point my weight is 205lbs. I've dropped 20lbs in a month.
My PCP then prescribes me famotidine and pantoprazole. I take the famotidine once every night, never touched the pantoprazole though since I had concerns since it was a ppi and I've read horror stories on the gastritis sub.
September 24th 2024 I have my first appt with a GI doctor. I explain everything that has been happening. I'm going through everything in detail, about 10 minutes in he turns to me and asks "did anyone test you for COVID?" I said no, he seemed very disgruntled that urgent care or the ER didn't test, but I didn't even consider COVID since I've had it before a few times and knew (or so I thought) what to look for.
He explained that he's seeing a fair bit of people with COVID having GI issues. I've convinced myself at this point I have parasites or a bad stomach bug, but doctor isn't convinced. We book an endoscopy on Sept 27th.
September 27th 2024 I have my endoscopy (a different doctor performed the exam). I wake up, doctor comes in and says "you have mild gastritis and mild esophagitis, but everything looks good".
Ok, at this point I'm thinking, I'll just heal my gastritis and hope to be out of this hell. That same day I have some what of an appetite. Up to this point I've been living off of ensure and boost so I attempt to eat something easy.
- October 4th 2024 I get a call from the doctor that performed my endoscopy. She says "when I spoke with you that day I mentioned you had gastritis and esophagitis, well I re-reviewed and you don't, everything is clean". At this point I'm beyond frustrated because I think I had a diagnosis, now I'm being told everything is good. Mind you, I already had my biopsy results since I called and had then emailed to me. Everything came back clean and no h pylori.
October 11th 2024 HIDA scan, I pushed to have this done because I wanted to make absolutely sure my gallbladder was not causing these issues.
October 13th 2024 my appetite is starting to actually come back. My upper abdomen pain/burning is basically gone and acid reflux is no longer a concern. I'm feeling more optimistic at this point. My prostatitis/UTI symptoms are in full swing 24/7 but at this point I'm just happy I can tolerate some food. This is where I branched off to other food items as I was only eating bland chicken, fish, rice or quinoa. I can now tolerate a good bit of food, spicy food is still a no go, fatty foods don't really settle either.
October 17th 2024 that feeling of a golf ball is stuck in my rectum, is completely gone, the urinary symptoms are getting a little better. I'm still waking up 2-3 times a night and struggling to fall back asleep. But I feel like progress is being made.
October 18th 2024 follow up blood work Results: bilirubin still at 1.6, AST dropped to 43 and ALT 33, doctor was happy to see liver enzymes basically in normal range. Platelets dropped to 104 however.
PCP wants me to see a hematologist for the platelets, waiting for that appointment.
October 24th 2024 I ask my PCP for vitamin test and Lyme disease test.
Vitamins are all in perfect range except for vitamin D, 27ml normal range is 30, so not really a deficiency.
Lyme test was interesting. It came back negative on the igg and igm blot but says I was reactive on band 41kd igg and band 39 kd igg. I followed up on that and my PCP said that I needed 5 reactive, etc and told me I do not have Lymes.(I tried to research on my own and ended up on the lyme subreddit, that was not good for my mental health since basically if any bands came back positive I had Lymes and I would have to pay for a Lyme literate doctor out of pocket and take herbs, etc.) At least this is how I interpreted it.
November 12th 2024 colonoscopy. This was a mess, they had me do a one day prep, I get put under and woke up being told I'm not completely cleared out. Wonderful, so I have this rescheduled on the 27th.
One thing I want to mention, 100% of the tests I've gotten was because of me pushing for them. My PCP office has been really dismissive, they even made a comment about my weight loss "you need to eat protein". I felt as if I was dismissed, only one of the nurse practitioner actually listened to my concerns and went in with my HIDA scan and additional blood work.
My GI doctor is a ghost. Will not return my calls, I only spoke with him twice, the initial appointment and my colonoscopy. I had to convince his office to book a colonoscopy, which I got thankfully.
Tldr - got sick at the end of August, tons of GI issues, some issues went away, new issues popped up, I feel like I'm playing roulette with my symptoms, not getting any diagnosis or clear answers. I've had a ton of tests done, nothing is coming back conclusive.
Notes: I've done some sort of exercise daily since this began, i.e. walking around the block, trying not to over do it, even though I might some days.
My golden yellow diarrhea stopped on 9/21 I now have constipation mixed with normal stool, normal brown color. It still seems off, it has this smell to it I can't quite explain. When I went from diarrhea to solid it was sticky/mucus. Now there's cloudy mucus on the harder stools but the rest seems fine?
I do take Lexapro, strange thing here was I quit a few months prior to this happening, the reason why I quit was because I had horrible/morbid thoughts about death/dying, I started to have dreams about bad things happening to people I cared about. I assumed it was some crazy reaction to my medication so I stopped. It was so bad that I was manufacturing scenarios in my head and stressing myself out. After I got sick, I went back on but bumped to 20mg. I tried that for a month, it turned me into a zombie and now I'm back at 10mg. I've read some stories of people getting really bad anxiety because of this, so maybe it wasn't my medication like I had thought.
Things I've cut out/quit: Alcohol Coffee Vaping/nicotine Spicy food
Things I've added: Kiefer Kombucha Yogurt Daily men's vitamins Raw sour kraut (this give me horrible gas so I had to cut) Collagen peptides
Symptoms: Bloating (this has gotten better) Burning upper abdomen (completely gone) Diarrhea (gone) Constipation Shortness of breath (has gotten much better) Fatigue/muscle weakness (still happening) Pins/needles (almost gone, but the flares are gnarly) Nausea (almost completely gone) Loss of appetite (almost completely gone) Dry mouth (almost completely gone) Anxiety/panic (comes in waves less frequent) Lightheaded/headache (almost completely gone) Frequent urination (almost completely gone) Middle and lower back pain Insomnia/bad sleep (still happening) Random itchiness
Essentially today, my lower abdomen is a mess, it's really hard to explain the feeling, but it's kind of like when you're dropping from a roller coaster or if you've been punched in the gut, all the time and like someone is squeezing my lower intestines.
Muscle weakness, more intense in the arms/shoulders, legs/groin.
I also used to have pins and needles in my hands/feet but that has eased a bit.
Sleep is still shit. I wake up once a night to pee, but I can actually go back to bed now, I am thankful for this compared to where I was. My eyes are blood shot when I wake up and feel dry, but a few eye drops and that clears up
Lump in my throat, no idea what this is about, but it does not really bother me a whole lot.
I just feel exhausted all the time now, if I do any activities I get sore and recovery is longer. I have zero drive to do anything.
I forget basic words when I'm talking, like I know what I want to say, it just does not come out.
This is something really strange that I can't explain though. I still play hockey. Once a week for an hour. While I am playing I feel 100% perfect. I don't get winded easily, my muscles feel good. After the fact I feel like I got hit by a bus and takes days to recover.
I honestly have no idea if COVID did this to me, my GI doctor seemed to think so, or something post viral. I have a fraction of energy I used to have, I have no interest in the things I like, my anxiety is up and down. I'm at a loss and honestly have no idea what to do. I still have my colonoscopy next week, hematologist this week and I a urologist the first week of December.
I guess if anyone has experienced what I'm dealing with, has any success or recovery stories, I'd appreciate it. I know this post is kind of all over the place so I apologize for the rambling and format.