What type of gastro condition could I be dealing with here?

[jmr106]

I have had on and off gastro issues for 2-3 years now, but lately my lower colon pain below the navel has been a lot worse than usual. I have a POTS/autonomic dysfunction ("dysautonomia") diagnosis from a number of doctors. However, the POTS seems to no longer be applicable. In the beginning, I presented to the ER in December 2019 with rapid heartbeat, shortness of breath, feeling unstable walking, frequent urination, rapidly fluctuating blood pressure and heart rate (pulse fluctuates up and back down about 20 beats from whatever base rate I'm at and it does that 1-2 times per minute, 24/7). My blood pressure also rapidly fluctuates and bot of these have been going on since December 2019. I know of no instance where I have ever had Covid. I've had people tell me that my "symptoms are similar to those who have had Covid"...but I'm fully vaccinated presently and got vaccinations when they were available. I have a gastro appointment on 1/9. I previously saw this same doctor a couple of years ago in 2020 where he performed an EGD and saw an inflamed stomach lining. Biopsies were negative for H. Pylori and cancer. He didn't seem to know why my stomach was inflamed. I tried a combination of prescription acid reducers and over the counter acid reducers that he told me to take on top of one another and they did not help with the stomach inflammation. I took a large amount of acid reducers for 6+ months and it didn't help reduce the inflammation. It has remained inflamed in various stages of pain for 2-3 years now. Altering diet doesn't seem to help, either. At one point, previous blood work (I believe at the ER) indicated White Blood Cell counts at 1.5 times higher than the highest normal range. I don't know what the measurements after it was, but it was like 15 and flagged as high. I have been lightheaded 24/7 since around 2018 or so and it gradually came on.


My latest additional symptoms:

- Abdominal cramps and pain. Severe burning/clawing sensation in the lower colon/rectal area below the navel. It is worse at night. At times, the pain is so severe that it feels maddening and causes trouble with concentrating, sometimes sending shivers/chills throughout my body because the lower colon hurts so much in waves of pain.
- Heavy nausea when pressing on or lightly rubbing the lower colon area below the belly and/or the middle abdomen. No vomiting, but at times, nausea almost to the feeling of needing to vomit. It feels like the nausea is somehow generated by the lower colon than the stomach.
- Common stool colors for a lengthy time period are either a bright yellow or greenish color. Also common are mushy stools with yellow 'bits' in them that cannot be identified as being related to any recent foods of that color. At times, stool has had a moderate amount of white, stringy mucus in it. However, that doesn't seem to happen very often at this point, but used to be a regular occurrence.
- Intermittent pain in the middle abdomen below stomach level, believed to be the small intestines. Similar to the colon pain, it comes and goes at random in waves. It is not as strong as the pain in the lower colon. Intermittent back pain that seems to radiate through from the lower colon.
- Agitated, malaise feeling throughout the body. Unable to sleep well and keep popping awake due to feeling so bad. Loud stomach, small intestine and colon noises 24/7. At times, colon and small intestine seems to "growl" almost as loudly as the stomach does when hungry. I have noticed that these stomach, small intestine and colon noises are louder and seem to happen around times when blood pressure rapidly fluctuates and other odd bodily sensations and paresthesias are strong.
- Sensation of incomplete bowel evacuation, even after a large bowel movement. Feelings of considerable inflammation in the lower colon below the navel. At times inflammation feels like it blocks bowel movements for a day or two - or for hours - and I can't go. Then it unblocks and I can. Stools are soft/normal at that time.
- Very low energy and extreme fatigue. 24/7 lightheadedness and a disorientated feeling.
- Tender eyes/eyelids. My eyes have hurt for a year or two now. This makes me concerned for something like Crohn's.
- Waves of canker sores/apthous ulcers in the mouth on the inside or outside of gums, sides and top of the tongue, under the tongue and occasionally on the back of the throat. Crenated ('pie crust') tongue on a daily basis, oftentimes turning into canker sores around the edges of the front and sides. I have gotten these badly since I was a kid and I'm now 40. I also get throat irritation and tongue swelling at times.
- Intermittent and random ear ringing throughout the day in one or both ears and has become more frequent recently, particularly at night or when standing for a while.
- Diagnosis of Postural Orthostatic Tachycardia Syndrome ('POTS') and/or Dysautonomia (autonomic dysfunction) by a number of doctors, but I lack the Tachycardia for POTS. Daily lower blood pressure for Systolic and Diastolic. So I have seen as low as 99/59 with a normal pulse and typically I'm around low 100's and low 60's on a daily basis. When these issues first started in December 2019, I ended up at the ER with blood pressure of 170/113.
- Daily craving for salt, which temporarily raises blood pressure, but I have to keep taking it throughout the day.
- Paresthesias felt in the lower abdomen/colon. Heavy twitches/muscle contractions and pulse felt throughout abdomen whereas it was not felt that way just a few years ago.
- Upper body jolt-like 'tics' that started a couple of years ago and feel at times as if they are originating from the lower abdominal area. I am very hyperreflexic all over. I feel like my abdomen makes me "jump forward" by the ab muscles contracting randomly or something.
- A 'cold' feeling in the sinuses, back of the throat and esophagus at times, but rare. I feel that I have some type of acid reflux from the stomach inflammation at times, but it comes and goes.

I was just denied for SSDI in December 2022 after waiting a year for a decision with hundreds of pages of documentation, including doctor notes that I am unable to work, can't work any of my previous jobs, have trouble with speaking, have Nystagmus of the eyes, etc.

I also have conflicting sleep studies. A 2018 in-lab study showed that I slept for 2.75 hours, had less than 5 apneas/hour and 50 RERAs (arousals for unknown reasons) with no central apneas. I had another in-lab study in mid-2020 that showed 29 central apneas in 89 minutes. They put me on CPAP and that failed, so they presumed Complex Sleep Apnea and tried it on BiPap. Even with good numbers, I felt worse using the machine than when I did not using it. I watched myself at home via night vision security camera over my bed and I just pop awake for no reason at night.

I'm beginning to suspect that a lot of this is gastro-related. I can't get up in the morning because I'm so fatigued. POTS was presumed by other doctors because I get blood pooling in the legs/feet and have had it for a few years now. However, I have gotten blood pooling randomly in my hands (making them very red) since I was a kid. I have had issues with constipation since I was fairly young and with on and off pain, which may have been some sort of inflammation. It seems to have worsened recently.  What could this be? In the near future, I'd like to have a colonoscopy, but haven't worked since early 2021 and I'm saving up for it.

[PapaBoo]

Sorry I do not have an answer for your illness but I have gone through the "Social Security Disability '' fight and have some questions first: what State do you live in? and have you talked to a Social Security Disability Attorney ?  At the time I filed I did some searching and found ONE SENTENCE in their own book of qualifying conditions. It said "If you have (my condition) you are disabled and unemployable" with no, if, ands or buts. This was many years ago, but the rules were "On the first submission for SSDI everyone was denied" then you get an attorney and they will take your case only if they can win. The attorney only gets a percentage of your first award amount set by SSDI starting on the date they see as the date you were "First Unemployable" then they check how much you have paid in to SS and how many years you have worked and set a figure that you will get monthly. Go to ssa.gov and get your statement, and talk to and attorney. Social Security does not want to see  a lot of paperwork you need to have an exact diagnosis and find out what they say about it in their own words from their volumes of qualifying conditions. My questions: What State do you live in? Have you talked to a Social Security Disability Attorney ?
"I was just denied for SSDI in December 2022 after waiting a year for a decision with hundreds of pages of documentation, including doctor notes that I am unable to work, can't work any of my previous jobs, have trouble with speaking, have Nystagmus of the eyes, etc."

[jmr106]

I'm in Georgia and have a disability attorney from shortly after my initial application. First was denied, I'm pending reconsideration now. My autonomic dysfunction doctor has ordered a lot of special lab tests and we're shortly to do venous ultrasounds of my legs to look for venous insufficiency and also a scan of the abdomen to see if my pain is from basically a illiac vein there that can get varicose and cause issues. My disability period sought by my attorney is back to February 2021, so I'm 25 months behind now. They get 25% of the initial back pay, yes.

[jmr106]

I should also note that I have had blood work done before by the gastro doc when I had my EGD and I remember him noting no Celiac.  I have had all sorts of blood work, brain scan, MRI/CT of brain, abdomen, pelvis, etc. The only thing noted was mild bladder wall thickening incidentally noticed and for seemingly an unknown reason. I have seen primary care doctors, had a tilt table test for the POTS, have seen neurology, gastroenterology, 3 cardiologists, have worn cardiac monitors, have done a Stress EKG on treadmill, Echocardiogram, etc.

[adunn7]

your story matches mine closely.  it's so frustruating.  you could have an issue with your pancreas. maybe auto immune related effecting enzymes and hormones.
do you have allergies? you may have mast cells lining your bladder, a mast cell activation problem or some sort of mast cell disease.  
amyloidosis, bechet's disease, microscopic colitis, or crohns.  irritable bowel can do a lot of this too, but the dysautonomia is strange with it. although many claim fibromyalgia is part of that.  do you have muscle and body and trigger point pain?
there are also diseases like addisons i believe that deal with salt imbalances.  you could research your endocrine line.  hoshimotos and thyroid issues too. Multiple sclerosis causes many issues with eyes and the gut believe it or not.  especially nystagmus.  parasthesis.  many times they don't have reasons for these things for a long time.  if ever.  it's so frustruating.  can you go to a large hospital like cleveland clinic or mayo where a team can look at you all together? dysautonomia in itself can cause a bunch of this stuff, and it is unpleasant and debilitating.  i feel for you.  in some cases, it has a time frame for life span, so you really should figure out exactly what is going on if you can.  do you have elevated calcium levels? low nutritional absorption?
is another immune disorder along with lupus. all these can disrupt these organ systems and cause symptoms you mention.  

you should have your outlet stuff measured with GI department, as well as breath tests to test for overgrowth of bacteria for SIBO, small intestine bacterial overgrowth.  there are seriously so many things.  idk how old you are, but you may consider too, having a colonoscopy.  unless i missed that.  the mouth sores is very important tho to tell your doctor.  you probably should see a rheumatolgist.  i hope this helps.  it's a lot of suggestions.  some might not be appropriate.  but check them out. if you are still seeking help

[adunn7]

POEMS is interesting too.  sorry i just saw you had mri for ms and want colonoscopy. which you should have. i have gastroparesis with my dysautonomia and it's terrible, along with colonic intertia and diarrhea due to messed up outlet syndrome and sibo.  all of my sphincters are not functioning right do to the dysautonomia too, so many of your problems can be because of it and things don't work right in the plumbing, the toxins build up in your body and cause low fevers and heart to race, sweating, etc and low blood pressure , especially upon standing, and especially when you are extra ill.