Will I remain a mystery?

At 21, no one should be suffering like you are. My heart truly breaks for you.
I am 65, I have to be grateful that my health waited until after my younger age, I got the chance to be a very involved mom to my 3 kids.
If you want to share, what did your endoscopy, colonoscopy and blood tests shows?
The heavy duty vomiting and constipation, will probably cause more damage, problems, if left unchecked.
I understand your vomiting all to well, at 19 I was pregnant with twins.. but my idiot Dr. refused to believe his own nurse saying she heard 2 heartbeats. I was vomiting 10-20+ times a day for 5 months, hospitalized 4x for IV fluids. At 8 months pregnant, he finally gave me an X-ray, too, "Go ahead and get an X-ray, then shut up about this twins issue". OOPS !!on his part, he ordered me to bed rest, he was upset that he failed, and worried I would have big problems with the birth.
Constipation, the only thing that works is is very large doses of miralax. I have been on every drug possible.
The vomiting will harm all the organs, due to the violent nature and the acidity of it.
The constipation can cause SO many problems and injuries.
My feelings about GI dr. Is they only want the patients they can "fix", and then take the credit for it.
Have you seen an endocrinologist? You might consider it, you would be looking to see if your calcium, vitamin D, and PTH(parathyroid glands/hormone). Look at parathyroid.com it's loaded with info. It would be less likely for your age to have this problem, but if it sends off alarms to you then it would be worth it. However, if you do proceed with this idea, get your plan of attack in order. Cuz, you WILL BE DISMISSED by the dr.
I got 3 opinions, 2 said yes and 1 said no. It is a very important issue but also a very ignored and under diagnosed issue.
I am finally going to get the surgery, oh how I pray that this has been the root cause of some of my medical problems. Take good care of yourself, YOU tell the drs what you need/want, not the other way around.

Hello hyrulewarrior - I am so shocked to read what you’re going through despite all the tests and hospitalisation. That’s absolutely dreadful. I’m not surprised you’re at the end of your tether.

What do you mean your GI Doctor tried not to confirm you have gastroparesis, that you’re not being treated for it and that you’re only being treated for GERD despite what you’re going through. All incredibly bizarre. It’s almost like your GI Doctor believes you’re imagining things and doesn’t want to feed your delusions (in his eyes).

I would definitely be going back to your GP to work out the next step. I remember a friend at university years ago had had dreadful gastro problems since she was a child and they were getting worse. They eventually discovered part of her colon was deformed with weird loops so poop was getting stuck etc. I wish I’d paid more attention but she had surgery and her conditioned improved immeasurably. I wonder if something like that might be causing your problems too 🤔

There has to be an answer!

Please do talk to your GP and make a new plan. Your current GI Doctor clearly isn’t helping to get to the bottom of the mystery.

All the best
Isadora

Isadora said her friend had a weird colon. That is definitely something you should check into. It's got several names, extra long large colon, abnormal, etc.....the real name is redundant splenic flexure, if it is on your left side (spleen side), or redundant hepatic flexure (liver side). I have learned that it is SOP, to NOT tell patients that they have this. This has got to be one of the STUPIDEST thing I've learned. Fortunately, a CT SCAN report, stated that I had it...just before my 45 yr old daughter was getting a colonoscopy, cuz she has one also. Her GI, was very surprised that she knew about it. Many patients will have one, and never have a problem. But for those of us with chronic conditions, like constipation, it means the poop has more loops and a longer colon before it can exit your body. Good vibes for you, be a tough gal..don't let your dr dismiss your concerns.

@hyrulewarrior - I’ve been reading up about Gastroparesis and it sounds exactly what your symptoms are. Mayo has material but I’m not allowed to post links here. It seems it’s not always possible to identify a cause and it also seems not to be curable but manageable. I am totally shocked your GI Doctor isn’t working with you to treat it as there seem to be a number of treatment options to try. You absolutely need to see your GP and get a second opinion. Please keep us posted.

I’m not sure how to reply to everyone so I hope everyone is able to see this, I have an appointment after months with my GI, I’ve been in and out of the ER so I’m surprised he wouldn’t see me sooner. I’m brining my best friend and mother as they have seen me struggle, taken me to the ER, nursed me back to health after long episode of puking. So I will be trying to advocate for myself but I also have them. We found my charts and he is putting things like “patient has stopped taking medication in my opinion” which is so beyond false, my meds which is only a PPI, keeps me together so I’d like to know why he said that, id like him to change that and give me any test results I have. I’d like a new GI immediately and so forth. I’m very nervous but I will update more after the appointment this morning. All of your words have meant so much to me. This is the second specialist I’ve been able to get in with and it’s been a nightmare. The first one told me I was an obese druggie because I started using Medical Marijuana after years of pain that no doctor would help with. So after losing 100 pounds from being sick and taking over 6 months without weed and no relief in fact it was way harder just ugh. Sorry for rambling I am very anxious today, I just want to feel like doctors want to help me, not ridicule me and get me out a door. I’m exhausted, here’s to hoping more is done today!

I don’t have any answers but I want you to know how very sorry I am you’re so sick. I will pray for you daily. I know how desperate and alone you can feel and that’s a terrible feeling. Did you go to Mayo? Were they able to help you at all?

You are so kind and caring. I know that young man got comfort from your words.

Hyrulewarrior, YOU ARE SO VERY VERY SMART, writing down your questions and problems, taking ADVOCATES with you that know about you cuz they have been in it with you. These really are the 2 best things you can do, for an anticipated difficult appt. There are lists on "how to prepare for the next appt". I have had to do this more than once in my medical life. A few thoughts: If you have physical copies of your records, terrific, take them with you. Possibly make copies of all of them to leave at home. The dr. could be genuine and ask to "see" them, then in the intense moments, "forget " to give them back to you.
If you don't have the records, I would suggest you get them from the business office, ROI, Release of Information, before your appt. Even if the dr can see your info on the computer 1. They are very very intent on not letting the patient see the screen 2. The doctor probably has no printer in the exam room and either has no access or won't get the asst. to get the papers for you. 3. I have had several drs tell me that "they can't release information (ROI), even to the patient due to government regulations. STUPID, yes.. but semi-actually true. Many years ago I had a job at a Veterans Clinic, in the ROI dept. It took reams of forms and signatures for me to process...under the threat of firing and litigation against me.
A new wonderful research option I accidentally found on line is an AI, called POE. WOW!!! I have been able to get tons of great, honest, helpful information. POE can't lie or protect himself against liability, cuz he's not a human. Try looking in the APPSTORE. I have only used the free version. Just ask something simple and see what happens. You can't print out your conversation with POE, very inconvenient but some legal experts probably put it in. I have a tiny, old program on my laptop, called printscreen. Found it years ago, but it will not work on my iPad. It was written by someone in Germany. If you decide to tryout print screen, and you don't have some computer whiz to help you, let me know, I will see if my hubby can get it or copy it. My cognitive abilities have declined significantly, you would never know I used to own my own Accounting and Tax company...now 2+2 can be a struggle to solve.
I know I have been long winded here, but I have been and still am in your position struggling for help. If there is anything, even small, that I can pass on to you I will. You have a long wonderful life ahead, once you get all fixed up. You are so lucky to have your friends helping you through this. You are so smart to know that having an advocates is truly essential for your health success.
If you want 1-1 my email is sw35gw@icloud.com I may not have all the answers, but I do know a lot of what not to do 😉Shelley
PS. The weight issue is one of the biggest cop outs for drs. It is despicable how they can blame everything on weight. Healthy weight is important for us, but it doesn't cause every illness. I was 60 lbs overweight, lost 30 lbs in 1 year, and the drs still blame me.

Hi there, I just looked up Gastroparesis a bit more. One of the many causes of it can be muscle related, smooth muscles. In another post I mentioned elevated calcium levels and Hyperparathyroidism. These levels are more important than most of us know. Case in point... I have had CIC💩for 17 years..now in a fluke cross over of a test and a wrong dr., there is a very good chance my CIC is related to my elevated calcium and HPTH, because my entire colon has almost zero muscle movement. So, I'm hoping and praying after my surgery, that will reduce my calcium levels, my muscles will be able to recover. Your Gastroparesis sounds a lot like my CIC. A GI probably won't address this at all.....you will need to get an endocrinologist on board. I hope you are staying cool and safe in this heat.

Hello everyone! I wanna thank you all again for your kind words and helpful advice, this all has been very hard for me especially being a young woman, I feel it’s very hard for me to be taken seriously. The appointment went about as expected, I do not mean to sound so rude but that man is so arrogant it reeks off him, he kept twisting so many things and I’m very thankful I had advocates with me as I almost shut down at points, the way this DR spoke to me when I tried to correct him was just insane to me. That aside he was of no help and when I asked why I wasn’t being treated for Gastroperisis he had the nerve to tell me “no you are” and then listed my new anxiety med I JUST STARTED given by my psychiatrist NOT my GI, I haven’t looked super far into it but I do not think Busprione is going to be a valid gastropersis treatment with the severity of my symptoms and I NEED something to help motility in my stomach and intestines/colon. This was of course brushed off immediately and wasn’t answered in detail. I’m definitely still frustrated and am leaving this GI, I’m not sure when or if I will be able to but he did do one thing i appreciate, he is referring me to the Mayo Clinic. I pray I will be able to be seen there, I live almost 2 hours away but it would be everything to me. I will update this thread further if anyone would like me to but again I have no clue when I will be seeing a GI again, praying soon, and current GI really is no help. You all have helped so much however and i appreciate it! I will be getting to an endocrinologist asap based on what everyone has said, along with asking for other tests etc, bless you all!! You’ve helped this young girl out so much 😭