Help needed not being taken seriously

folks, 25 I think doctors didn't take me seriously, three years ago, three weeks post nissen fundo, constipation, first time in my life, prune juice fixed it, a few days later it hit again, prune juice didn't fix it, got frustrated, strained bent like a sit up, going to bust that sucker through...well I did, but not through out...three days of retching can't swallow fluids, anything, hot, dehydrated, RN friend stops by, go the ER/ED, which one, where you got your surgery, and I had gone back to the surgeon that morning, "no problem, everything is normal, glycol, gas X stay the course," never needed nor did gas X before, "do you drink a lot of soda pop", no doc, don't drink maybe a soda maybe once a week in the summer, on a hot summer day..." And he sees sumtin on my tummy, a lump, reaches out, palpates it (taps it with his fingers) says nuttin. Later on the phone, "what did you palpate?" your large bowel...okay, what part asshole!? in the ER/ED, nuttin wrong, go home, CT scan, go home, sumtin a lump sticking OUT, omg now what do I do leave it or do sumtin, so I did sumtin, took a finger or two and "Pushed" it back inside my tummy through what felt like a hole in my tummy wall. Earlier same ER/ED, sitting there, on the bed, Doctor in front of me, standing, "hey doc, isn't it like unusual that someone can like feel their insides like on the outside of their tummy?" I must have already felt it..Doc stood there, didn't respond, did'n't answer, didn't say a word. So I calls up the ED/ER and says" hey lump in tummy, pushed it inside, "come on back" go in, tell the RN triage, some asshole dude, what happened, "that's impossible, CT scan shows NOTHING!" "dude, I'm dehyrdated, I can't swallow water (like three days now), "I looked at your labs, your not dehydrated" then why did you give me a rally bag IV when I came in...and since then, I've looked at those labs, and six levels are off, guess what might cause that, doh, dehydratoin..." talking to the surgeons nurse MA, twice, "well you ate a hot dog" with A sneer like it's a big sin...three weeks post surgery mushy diet, yeah and it tasted damn good and went down too..." and told the nurse on the phone the day after, "I can't swallow fluids, it's hot, I'm dehydrated," same sneer smart ass voice, "well I saw you swallow water yesterday" cause I was able to sip a small cup of water, sitting in their lobby the next day, so I am holding it the thing in with my finger over the hole, friend with a hernia says "it hurts" no it like itches, and I get this gurlge, and hmm, so I get a water bottle I'm in the truck, and I drink it and it goes down, woo hoo, go to macdonalds, vanilla shake, what can I "EAT" and drink, and drink it, it goes down and stays down, WOO HOO, and then 15 ED/ER visits later, five surgeons, five GI docs six CTs, a battery of tests, and one surgeon asks for the CT scan images, "they don't show anything" "maybe they don't know what they are looking for" and what does she see and say"you blew a stitch," same words that I told them three years prior. BTW, surgeons, most of them are sociopathic antisocials, you have to be it to do the job and it's the number one profession for them kind, no conscience, no mirror neurons, all you are is like a bug to them to open up and poke around, the other three 4/9s, criminals like bank robbers, again no feelings, police officers, and of course ministers of churches, fuck the parishioners and fleece their money And move to the next church! tada!

I had to ask a doctor what he would do for his wife or daughter? He thought about it for a minute and then ordered the test I needed. Bigger institutions are better too. They, like Mayo, have so many more resources. In Seattle I go to the University of Washington Medical Center. They have their own hospitals and labs. I'm getting top notch care and providers that take things seriously and really listen. Good luck 🤞

That's a great idea!! I never thought of that.

I have been gluten free for over thirteen years. I do not have Celiac but I have a rare disease that mimics celiac. If I eat gluten I have to spend the day in the toilet. It was really hard when I started eating this way but now there are so many good bakeries and restaurants that cater to gf eating. I will say I am in California where it's not so hard but a few years ago took a family vacation to Cape Cod and all I could find were lobster rolls. Over the years I have learned where the best bread is, the best bagels are and a lot do ship. Bakery goods are the hardest but I know where the best ones are. Some foods are much harder than others. For instance Chinese food is difficult because of all the soy sauce and frying, but Thai and Vietnamese are great because almost all dishes are made with rice instead of wheat.

Unfortunately, with Celiac if I get exposed I get severe gastroenteritis pain and diarrhea for a couple of weeks. We avoid going out to eat and mainly eat at home. For me, Celiac is not the issue.

I went gluten-free in February after my second relapse while trying to taper off Budesonide (I was diagnosed with Collagenous Colitis last November). It was tough at first and I seriously mourned being unable to eat my homemade sourdough bread, but like you I've found many excellent gluten-free substitutes. We have an excellent small bakery near our house that offers all kinds of gluten-free treats, and I have found an outstanding recipe for gluten-free bread from King Arthur Flours using their gluten-free bread flour. It does contain deglutenized wheat starch which gives it a much more typical taste than most gf breads, but may not be suitable for those with wheat allergies. And, I feel much better being gluten-free so will very likely continue to avoid or at least minimize gluten intake. Will be starting the taper to 3 mg of Budesonide next week and fingers are crossed that I don't relapse this time!

Hopefully Budesonide works for you. Unfortunately, I relapse everytime within a couple of weeks. Although, being on Budesonide makes me so constipated and I feel like dirt. I have both types of Microscopic colitis and now possibly Crohns.

I feel so frustrated. I never went to the doctor until I had COVID twice. I had 3 shots and still got it. The 2nd bout was the worst. Since then. I’ve been diagnosed with micro vascular heat disease and an undiagnosed GI condition. For the past year I’ve been dealing with constant diarrhea and bloating. I’m negative for Celiac and IBS. All of the other tests came back negative so the dr basically gave up. I’ve lost 28 pounds without trying. Have no appetite or energy and no one seems to care. It’s extremely frustrating. I’m at my wits end. Any suggestions?

When you tested negative for Celiac was that a blood test or biopsy? (Blood test is not accuate). Have you had an endoscopy? One thing I did (definitely not a cure) was get food sensitivity testing. This helped with some of the burning pain I get. As for the diarrhea, trust me I know how horrible that is. I have had chronic diarrhea for over 3 years now. Please make sure you drink water with electrolyte's. You are probably dehydrated.

I had an endoscopy with the biopsy. I drink a lot of water but just filtered water. I never thought about electrolytes. Thanks so much for the tip. It’s so debilitating. I don’t know how you’ve managed for 3 years. I’m lucky t work from home 3 days a week. The 2 days are rough!