GI diseases

#GIDiseases
So for the last 16 years I have had horrible GI problems of various sorts. 3 years ago I had my gallbladder removed. Before it was removed I used to get chronic constipation to the point where I ended up in the hospital many times. Then after the gallbladder was removed I ended up with chronic diarrhea. I tried seeing GI doctors over the years but they all said that it was probably IBS and they told me to just eat more fiber. I completely forgot that the surgeon who removed my gallbladder diagnosed me with bile salts diarrhea 3 years ago. I saw a new GI doctor 3 weeks ago and he wanted me to start on a regimen of PEG, Senna plus, and fiber supplements everyday for a month because I had been constipated since Thanksgiving. I took the meds and within 36 hours of taking the meds I got really really sick to the point where I was throwing up. They told me to stop taking the meds but to continue taking the fiber supplements. I told the doctor that I had bile salt diarrhea and he said that it's probably not likely because it's a rare condition. He asked me if a GI doctor had diagnosed me with it and I said no the surgeon did and he laughed. He was very unhelpful and very rude. There's meds for bile salts diarrhea but my insurance doesn't cover them and one week's worth of meds is at least $100. I don't have that kind of money. So I guess I have to learn to live with this right? Fun times.
#bilesaltsdiarrhea
#GIDisease
#CheckInWithMe

Right after I got married, I started getting these nauseous bouts right after dinner, where I would have to run to the bathroom, only to dry heave. I never vomited. It was so frustrating. People would joke, “You must be pregnant!” And I’m like, no, that’s not it. I would see a GI, and once he knew I was on meds for anxiety, he would then at each appointment, ask if I was still taking my meds, as if it was the 1800’s, and he was diagnosing me with hysteria. I’m like, no! There IS really something wrong with me! (Years later, I would be diagnosed with Gastroparesis).
So I was scheduled for an endoscopy and a colonoscopy. I did all the prep (fun!) and showed up. Well, they must not have given me enough anesthesia, because I was out enough that I couldn’t move, but I could hear and feel everything. I remember choking and gagging as they shoved the camera down my throat, while the nurses held me down. I could FEEL it inside me. Then it got worse.
The colonoscopy. I started screaming. The pain was awful. They just held me down and proceeded. They didn’t give me more stuff to knock me out, stop the procedure, nothing. I guess I finally fell asleep, bc I woke up in recovery. What happened didn’t fully sink in until about a week later. I wrote to the medical board, with the intent of getting that dr fired. All I got back was “The decision is confidential .” I still google him, to see if he’s still practicing. I’m afraid, what if this happens/happened to someone else?
Now when I have procedures with anesthesia, I get super anxious, and have the doctor promise up and down that I will be COMPLETELY out. That incident scarred me for life. #Gastroparesis #GIDiseases #Misdiagnosis #Anesthesiologist

Wanted to share a few movies that I relate to being someone with multiple #AutoimmuneDiseases , #MentalIllness , #GIDiseases , being misunderstood and not taken seriously. First there's Brain on Fire:
youtu.be/VZn6G0M9wNs

Then there's Five Feet Apart: youtu.be/I7YWtkH4nU8

You are strong,
for feeling it all,
You are strong,
for not wanting to fall.
You are strong,
for mentally, emotionally or physically
supporting yourself.
You are strong,
for your management of your own health.

You may be finding it hard to belong,
maybe even in your own body.
But you are made to be the mighty!
Remember you are strong.

#ChronicPain #Fibromyaliga #Depression #MentalHealth #DiabetesType1 #ChronicIllnessEDS #Anxiety #RareDisorder #RareDisease #mentalillnessistiring #Disability #InvisibleDisability #InvisibleIllness #ChronicIllness #lifelongconditions #emotionalillness #IrritableBowelSyndromeIBS #GIDiseases #how to list multiple diseases and syndromes #AllIllhealth #SurvivingWhileSuffering

#ChronicPain #BackPain #nervepain #ChronicIllness #GIDiseases #PTSD #Anxiety

I have to get an mri on my liver kidneys and pancreas. I am able to eat and no high fever. I’m very scared as I live alone. Who understands how anxiety and ptsd can make a real health crisis that much worse? Have any of you gone through this before? I’m scared and it’s affecting my ptsd and anxiety. Who will pray for me and check in with me? #PTSD #BipolarDisorder #Bipolar2Disorder #BipolarDepression #Bipolar1Disorder #BipolarDiorder #Anxiety #GeneralizedAnxietyDisorder #CPTSD #CPTSDinrelationships #HashimotosThyroiditis #GIDiseases #IrritableBowelSyndromeIBS #DatingWithAChronicIllness #diverticulosis #ulcer #CheckInWithMe #Upallnight #Photography #Art #Writing #Mitralvalveprolapse

So over the last 2 years I've had to get 45+ units of blood and Tuesday i will get 2 more units, for a total of 6 over the last 5 weeks. Did have female issues that were a big part however had a hysterectomy almost 2 years ago so have been looking for another culprit. Well, GI seems to be it... Found and cauterized some verices in the Jejunum back in Feburary but obviously that's not really fixed the problem. Today the possibility of bowel resection came up when discussing where we go from here. Just curious, has anyone ever dealt with stubborn verices that required surgical intervention? Bowel resection would be very complicated with me because i have a TON of scar tissue, (from several open j placements, g placement, hysterectomy, and a ventral hernia from sternum to below belly button) a current g tube, a current j tube. Also an extensive history of wounds opening back up, getting infected, and taking months to heal. So really not a great option but obviously can't keep going on with the current rate of transfusions.

Does anyone else with SOD struggle to eat certain foods without getting awfully sick? Mine is any kind of Asian food! What about you? #GIDiseases

#Anxiety
I’ve been dealing with GI issues for15 years. It wasn’t until rehab last year that I truly recognized that anxiety directly relates to GI issues. But it has been worse than ever since the Pandemic started. I’m vomiting every other day at least, completely lost my appetite, so nauseous I want to cry, and the acid is welling up inside me. I went to the GI doctor a few days ago, he put me on more stomach meds, anti nausea and anti acid, and said he wasn’t ruling out anxiety. My psychiatrist put me on 3x the gabapentin I was taking. But I’m still sick today! When I was in treatment, all of this was slowly going away. Although I do have GERD, IBS and esophogitus, I wanted to ask, does anyone else feel completely crippled by their physical side effects? Does this happen to anyone else? Does anyone else vomit from anxiety? #sick #Stomach #help #Vomiting #Anxiety #GIDiseases

I have Aggressive Systemic #Mastocytosis (among other things) and since October, all of my labs from my oncologist and my primary care doctor are all wacky and seem to be getting more out of sorts. My wbc has been down to 1.0.0.47 my rbc, hgb, hct, are all low too now. My potassium is so low I’m 80mEq a day of infusions, and nobody can seem to figure it out. I have seen my Hematologist/Oncologist, my GI, my Rheumatologist, and my GP and nobody can understands what or why this is happening to me.

I’m now on infusions about 21hrs every day and I’m so tired of being tethered to this tube and pole....and as of now it looks like this may be a life long therapy. If anyone has ever had this type of thing happen, how did you figure it out? Thanks in advance fellow warriors

#Lupus #HEDS #sjogrens #RheumatoidArthritis #SystemicLupusErythematosus #ChronicIllness #Hypokalemia #Mastocytosis #asm #MastCellDisease #GIDiseases #Ivtherapy