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Being yourself

I feel that after 18+ years of chronic illnesses I am forced to mask in most aspects of life. It’s exhausting to pretend like I am not having symptoms for the comfort of the people around me who are not chronically ill or disabled. They don’t understand anything and they genuinely don’t seem interested in learning either. I’ve been chronically ill since I was 18, so I’ve always been “too young” or told “it’s just a virus, it will go away” to dismiss how sick I really am. Bad enough to get dismissed by doctors - I trusted them blindly when I was that young and didn’t realize I was even being dismissed and mistreated - but to have been dismissed by almost everyone else just…sucked. Fortunately, my husband (who was my boyfriend at the beginning of my journey) is a true supporter. He always tries to find ways to help me and never judges me or makes me feel bad for needing extra rest or cancelling plans. I don’t have a lot of friends, because, well, as many of you know and experienced, when you’re chronically ill some friends sort of disappear on you. I tried staying in touch and got so sad when I realized I was the only one reaching out, just to check in. So I stopped. My energy is very limited as it is and it’s crushing to put that effort into one-sided friendships. I mean, is it really unreasonable of me to wish I got a text, maybe once a month or every couple of months, just to say hi and see how we are doing? Anyway…after a pandemic and having health issues keep me at home for quite some time, I am building up my endurance (or at least trying to). So my socializing is limited to colleagues and in-laws. I work from home so I try to limit my interactions as much as I can. Fortunately, most of these interactions are work-related so I don’t have to defend my condition to anyone. At most I’m pretending to not feel like crap. With my in-laws it is so much harder. I am on a medically necessary gluten free and dairy free diet. Every get together revolves around food so I always have to bring my own. Although they insist on hosting (they have a bigger space), I always bring my own food. But gluten is everywhere. They always make comments about what I should be doing, without even knowing anything about my conditions. They tell me they “pray” that my conditions will go away and comment on my appearance. And you can’t educate them because they literally do not have capacity to listen and learn. I’ve tried and so had my husband. They’re just convinced they are right and I must be doing something wrong if I am still not “better.” My husband is really good at ignoring it all. He accepts that they are don’t have the tools to do better - he gets through the visit, we leave and he moves on. Unfortunately, I hold onto it longer because after so long, I just want to tell them off. I know this isn’t the right thing to do and if I am going to support my husband and show up for him, like he always does for me, I have to find a way to deal with them. It’s just really hard.

I just want to be myself, without being lectured. I don’t want to have to perform and pretend I’m not having symptoms because everyone else is too fragile to handle it. Doing all that extra work for everyone else’s comfort drains the little energy I have and I might have more to spare if I could just not be pushing on to survive these interactions.

How do you stay true to yourself and manage these trickier interactions? How do you accept that the people you would like to care just can’t show up in the way you would like them to? At what point does it go from giving them grace to enabling poor behavior?

Thank you for giving me a safe space to share.

#ChronicIllness #IrritableBowelSyndromeIBS
#UndifferentiatedConnectiveTissueDisease
#Gastritis
#Jointpain
#Spoonie

11 reactions 4 comments
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Weight loss

I’ve been at the GI dr off and on since February for appetite loss, reflux, etc. I’ve had all the routine scopes- they found gastritis (not H. Pylori) and a tortuous colon. I cut out dairy for the past 2 months, because it made me worse… and I’ve lost almost 30 lbs. Are there any other bendy folk out there who struggle with unintended weight loss? I was always really thin as a kid, too. #Hypermobility #WeightLoss #POTS #Gastritis

6 reactions 6 comments
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Fairly new diagnosis

Hi, I had a colonoscopy a d endoscope about a month ago. Colonoscopy showed two adenoids which he removed. Endoscope shower chronic gastritis and inflammation. But they couldn't rule out leading to autoimmune gastritis. Not sure why but dr sId right now I have plenty of pariental cells. Last June I had a endoscope somewhere else and I was told I had hyperplasia with possibly autoimmune gastritis but this gi did total mapping of my stomach but he couldn't explain why my gastrin was elevated and my pariental was high especially if I had plenty of pariental cells. I am having a hard pylori breath test in a few weeks it was negative in the endoscope dr just wants to be sure. He referred me to a nutritionist at my asking but he said I couldn't stop it if it turned autoimmune. I disagree. I at least want to eat better and prevent it but he didn't give me any suggestions moving forward. I have other health issues plus anxiety. Thank you for listening.

#Gastritis

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Does anyone have experience with #Gastritis here, not caused by H. Pylori?

I’m new here- but have years of dealing with bendy issues… lots of joint problems, cardiac #ablations , #POTS , #Migraines , etc. Gastritis is a new diagnosis and Dr doesn’t know the cause. Was wondering if this is related.

16 reactions 8 comments
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Exhaustion

It’s hard knowing that the chronic pain will get worse and you don’t know when it’ll be. It reminds me of a quote from The Fault in Our Stars- “There's no way of knowing that your last good day is Your Last Good Day. At the time, it is just another good day.” However, it’s even harder when a flare makes you face that reality even more.

I believe my pain is getting worse. Flares are more often, longer lasting, more exhausting, more problematic. It’s a lot harder when I can’t really take painkillers for it.

I got diagnosed with GORD/ gastritis/ hiatal hernia. The symptoms were getting worse, and long story short I had a gastroscopy where I received those dx’s. At the time, my reaction was one of relief. Relief that my symptoms have a physical recognised cause. Because I had just gone through ENT and cardiology where they couldn’t (they could prove the symptoms but not find a cause). Now it’s still relief, but also frustration. It could have been avoided if they had arranged a follow-up appointment when I first went to the doctors about it almost 10 years ago.

Speaking of frustration, I found out that my cholesteatoma actually still appears to be of existence. I was told it was gone, but going over my medical notes it appears this wasn’t the case (besides, it has to be surgically removed to be permanently gone & it wasn’t). Where I keep losing my hearing, I tried mentioning it to the doctor but it got dismissed. Even though there’s things at stake, I’m too tired to fight and get another opinion. Not that I’d be able to anyway- the migraines have caused me to just want to shut down from everything & I only leave the house for appointments.

I’m quite tired of all of it to be honest. It’s exhausting, and being in pain I have the physical exhaustion on top of it. Not sure what else to say or where I was going with this post, but yeah. I’m back?

#ChronicPain #Pain #BackPain #Cholesteatoma #GastroesophagealRefluxDisease #HiatalHernia #Gastritis #ChronicMigraines #Migraine #exhaustion #MentalHealth

22 reactions 2 comments
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Do it on my own

So I have gastroparesis, gastritis, ibs&c, and something else I can’t remember the name. My dr wants to load me yup with pills. I take the highest amount you can take and still doesn’t work, I am also allergic to a lot of medicine.

So I am trying things on my own. Since my dr, tells me I’m fine and I’m also not bad off yet to do anything about. So yay let me suffer great quality of life. Anyway I’m trying different kinds of food.

Is there anything out there that you try and has help? Any kind of product? Anything. I’m tried of being sick either throwing up and or so constipated, I’m miserable. #Gastroparesis #IrritableBowelSyndromeIBS #Stomach #Gastritis

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How do you stay grounded while you’re waiting for a diagnosis?

I am definitely in diagnostic limbo right now, Mighty fam. I had some testing done on Tuesday and so far, no answers. I woke up this morning with especially heightened symptoms and it was a stark reminder that I am no closer to having a reason for why I feel so terrible (well, more than my usual level of chronic illness-induced awfulness).

So I could use some advice: How do you stay grounded while you wait for answers? What keeps you level-headed and calm? Maybe it’s a specific self-care routine, a person, or a tried-and-true distraction. Share your suggestion with me below.

⭐️ P.S. If you have any advice or wisdom from your past experiences in limbo, I’d love to hear that too!

#CheckInWithMe #MentalHealth #Undiagnosed #ChronicIllness #ChronicPain #Gastritis #Anxiety #Depression #DistractMe #Selfcare

15 comments
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Working with chronic illness

I think I will get fired because of my recurrent abdominal pain I am not getting a diagnosis all my lap investigations and imagings are clear, the pain became so severe that I can't get out of bed my coworkers started to feel that I am malingering I am stuck in a cycle of pain and depression #ChronicIllness #Gastritis #ChronicPain #Depression

3 comments