Gastroparesis

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Here we go again. #Gastroparesis #BorderlinePersonalityDisorder #Diabetes

My mind is not doing good .
It’s been about 2 month since my gastroparesis symptoms came back … and it’s getting worse .
I was hopeful at first that it would just be a couple of bad days … but bad days started to become weeks … and now months and the hope that I’ll get better is getting smaller and smaller . Since 2019 … I had a bunch of diagnosis . First came gastroparesis … at first we thought it was a virus of something … but I have to face the thruth that it was causes by my diabetes . Even thought my control wasn’t that bad … even thought I didn’t ask for it . Even thought if I had a pump and cgm sooner maybe I wouldn’t have face that complication … it’s here now and I know that trying to guilt trip me won’t help anything … so maybe my control was in part responsible for my gastroparesis …. But it wasn’t a “predictable consequence …” I mean , I don’t have any issue with nerve pain , eyes or kidney … and from what I can read … it’s way more common for type 1 to have those … so I could say it’s a combination of very bad luck … anyway , no one wants to be sick . No one choose that . We are not handled the same cards … it’s futile to judge someone who has a disease … even if the person caused it . But it doesn’t make it any less difficult to live with … I also got diagnosed with borderline personality disorder and ocd personality disorder … my plate is full … I wished I didn’t had all those challenges in my life … but we don’t choose . Ok really trying my best to make the best of it … but I find it so hard to live with constant symptoms of my gastroparesis … and also having to deal with bpd … I had a wonderfull 3 ish yr break from gastroparesis symptoms … I could eat whatever I wanted whenever … but my mental health was really poor … I was struggling to have friends ( I still struggle …) and I feel like life is doing me a sadist little joke since it’s been about 2 months or so that I started to gain some confidence and thrust people more … I even started to date again … and then my gastroparesis is back full blown again . It’s like I can never win . I don’t even know what to do with dating . I met this guy . He is super sweet . I talked to him a bit about my gastroparesis … told him that I can eat maybe 1 small meal a day and the rest is liquid … but i didn’t mention that I’m pretty much crippling with nausea all day long … and its starting to really take a toll on my mental being right now … I don’t know how much longer I can continue with my symptoms . Just getting through the day is hard . I don’t even know if I have the energy to try to hide my symptoms with I’m with him … because it’s what I do right now . I take like 2x the dose of the meds in allowed and I’m trying my best to ignore symptoms when I’m with him … but I don’t have any energy after … and I’m starting to not really want to do my job anymore … it’s too hard to do with constant nausea … but I have no choice … if I stop working … I won’t have any money to pay the bill … and If I don’t work my mental health will go down … I’m so afraid of future …. I’m trying to tell myself that my symptoms will stop like it did 3 yr ago but I’m loosing hope . I’m tired to have so many diseases to deal with . I just wanted a normal life .

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A History for Comparison

I am 66 this year & have had (obvious but undiagnosed) POTS since my earliest years. It has gone through 3 major stages.

As a young child it mainly showed only as an inability to run & keep up with the neighborhood kids. We'd run until everyone was winded, but in a minute everyone else would be gone. I'd be left by myself as they would run off as I could not catch up.

It was probably during this phase or nearly the next one when the gastroparesis began to be noticeable. I often complained about my stomach, was seldom hungry. From my parents point of view I was simply seen as a fussy eater. I didn't really have the vocabulary to explain properly, but do recall telling my mother that my "stomach has gone on strike".

The next phase saw the symptoms multiply as I entered my early teen years. Blacking out as I got up from sitting became the most prevalent symptom but was joined by such things as difficulty climbing stairs, lifting heavy objects or standing for extended periods. Running continued to be a problem. I never finished a 600 yd. dash in school in my life...I always came limping in at the end with the heavier and asthmatic kids.

During this period I was taken to numerous doctors. Opinions ranged from "we don't have a clue" to "it's all in your head". There was, however, one doctor's assistant who did an impromptu test for POH (Postural Orthostatic Hypotension) which proved inconclusive & was never pursued.

Oddly, I took up hiking, simply because I enjoyed the trips. Physically, they made me feel horrid, like one long stair climb. I moved very slowly & took long rests. Definitely never did group hikes! But I just liked to be outdoors so much. My heart always acted very badly the day after a hike.

Now I am in a 3rd, highly disabling stage. I doubt it is caused by the POTS itself but probably an interaction between the ailment & another hidden illness (I avoid doctors these days...very long story). I have been gradually getting worse for about 8 years. I used to do nearly ALL the work in the household but now I do practically none. I do whatever small chores I can to be helpful to my wife as she cooks (used to be my job). I remember when I could only pick up a half-gallon jug...then a quart, then finally I cannot get a light plastic cup of drink for myself. My wife must pour it & put it on my stomach. Then I need to use extraordinary means to get it to my lips without actually picking it up.

Lastly I will just say that I am extraordinarily intuitive. I didn't know what POTS was until last August...I read an article (possibly on this site) and said "Hey! That's ME!!". But a year or so before that I began to notice that most of my issues (anxiety, panic attacks, migraine-like headaches, my heart not being able to catch-up, etc...) all seemed to be originating from the same area of my brain. Which I now can label as the area which contains the functions known as the autonomic nervous system.

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Share 1 thing you learned this week.

“Shall I tell you the secret of the true scholar? It is this: Every man I meet is my master in some point, and in that, I learn from him.” — Ralph Waldo Emerson

We’re constantly learning new things. Whether we seek out information or happen upon it, we learn new things every day. These lessons could be something concrete, such as your new friend’s birthday or a fun fact about your favorite animal, or something more abstract, like a hard truth or valuable life lesson.

What did you learn this week? Maybe you gained more insight into yourself when one of your values was tested. Or you might have received a long-awaited diagnosis (amazing!) and set out to learn as much as you could about your health condition.

Whatever lesson, factoid, or fascinating bit of info you learned this week, take a moment to share your newfound knowledge!

#MightyMinute #Spoonie #Disability #CheckInWithMe #CheerMeOn #MentalHealth #Autism #ChronicIllness #Cancer #RareDisease #EDS #EhlersDanlosSyndrome #Gastroparesis #Caregiving #Anxiety

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My endoscopy went fine except they couldn’t wake me up for over an hour after lol, the nurses were super freaked out. No significant findings :( #EhlersDanlosSyndrome #Gastroparesis

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PEG-J Predicament

I'm an EDS patient, and I not-so-recently got the diagnosis of severe gastroparesis with no stomach function. I have been admitted to hospital and got a NJ Tiger tube and a PICC placed for parenteral & enteral nutrition (I also have intestinal dysmotility). My doctors are opting for PEG-J tube placement, but I just can't get over the idea of this going way too fast. Also, I am not doing very well with the enteral feeding, and my doctors are trying to decide between home long-term TPN or me becoming a long term patient.. :( For this reason I'm thinking of starting a blog to share all my experience of having EDS as a teenager! Should I, or should I not? #ChronicIllness #MyCondition #EhlersDanlosSyndrome #Gastroparesis #AskMe #Dysautonomia

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Gastroparesis shake recipes needed!! Help!!! I’m only able to tolerate liquids-no solids.

Does anyone have any blended shake recipes for gastroparesis? My GI doctor told me ensures are not enough for me-still losing 2-3lbs per day on a good day. Bad day 5-7lbs. I would be forever grateful to any recipes that are easy, inexpensive and enjoyable! I’m brand new to this, and am desperately trying to be well enough to get back to work! Thank you so very much!!!! Love and prayers! #Gastroparesis #proteinshakes

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New here

Hi all, I’m new here. I have been very sick since January 4 this year. I tarted vomiting daily, not being able to eat solid fluids and surviving on ensure and other protein drinks and water. I have muliptile illnesses that make this so complex. So drs are finally ordering the GES but I’m praying they can get me in before my insurance cancels on June 1st-side to being fired for being so sick. I’m at a complete loss! This past fall I was 350lbs, now I’m 185lbs without trying to lose weight-but been so sick. I don’t know what to do from here-for insurance. I’m so overwhelmed and so scared. Any help would be greatly appreciated!
#Gastroparesis

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Getting worse

I have a endoscopy next week and I am absolutely TERRIFIED to go under because the last time I had general anesthesia I woke up during the surgery. I’m scared that they’re going to tell me that nothing is wrong when I know there is. With the weather getting warmer, everything is flaring up. My heart rate is rarely below 100 and I’m getting so many mosquito bites that are causing major swelling. On top of all that, I’m worried I have craniocervical instability, my neck always hurts and I can hear the bones and muscles moving. I start college in the fall and I dream of being a researcher focusing on EDS but I’m so scared it’s all slipping away from me. Sorry for the vent post, just wanted to get it all off my chest. #EDS #POTS #PosturalOrthostaticTachycardiaSyndrome #Gastroparesis

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