Where to turn

Posted by giproblems78 @giproblems78, Jan 7 1:23pm

I have been seeing the same gastroenterologist for 10 years. I have been diagnosed with Gastritis, Pancreatitis, IBS-c, I have had numerous other problems throughout the years, esophagus, diverticulitis, c-diff. I have been on every medication for Acid reflux pills, Linzess, Dicyclomine, Carofate, etc. All the diets, I'm no stranger to the lifestyle of digestive management. That being said, this year has been one of the worst I have ever been through. With Covid, everything was pushed back, and it was video visits. I had 2 edg's and colonoscopies since June. I was continuing to get worse and worse. Extreme nausea, vomiting, bloating, just very sick all the time. I still am. It's actually a lot worse.
So, my GI sends me to the surgeon. He orders tests. My esophagus tests were fine. But my gastric emptying test showed delay. They only told me that they would wait until all the tests were done. I got a message today that I have to deal with GI. No one called or explained that I now have Gastroparesis. I have been very upset with them because none of my medications I have been on for years are working for anything at all. I am dealing with all my other symptoms from all of my other conditions now too. My entire system is continuously acting up. I haven't been able to eat now at all until I absolutely have to. Even drinking water makes me sick. No one is contacting me about how to treat this. I haven't gotten any details about the results of the gastric emptying test from the 11th of December. I weighed 150.lbs on November 24th when I was in emergency and my scale reads 130 lbs. now. I'm being treated like a problem patient because I want answers and help. I don't live a life anymore. I am so sick all the time and I have no clue where to turn to. Can anyone give me some advice?

@giproblems78 Have you been to a Mayo MN, AZ, FL? If you have gastroparesis that is slow stomach emptying, it is not fixable but you have to learn to live and eat with its limitations..My local clinic could not diagnose it as their surgery damaged the stomach nerves that caused the problems. Look under "gastroparesis" in this Digestive health and you will find many of my long writings telling how to eat and figure out how to cope with the condition. eat small amounts, eat like 6 small meals a day.. do not lay prone for at least 2 hours after eating, cut up everything you eat very small, chew very well, at night sleep on a wedge like pillow arrangement or have a foam wedge that raises your bed head 6" or 8".. You need to keep a log of what you eat in the kitchen and a log in the bathroom to tell date and what happens each day as you eat… what comes out the other end…

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@ken82

@giproblems78 Have you been to a Mayo MN, AZ, FL? If you have gastroparesis that is slow stomach emptying, it is not fixable but you have to learn to live and eat with its limitations..My local clinic could not diagnose it as their surgery damaged the stomach nerves that caused the problems. Look under "gastroparesis" in this Digestive health and you will find many of my long writings telling how to eat and figure out how to cope with the condition. eat small amounts, eat like 6 small meals a day.. do not lay prone for at least 2 hours after eating, cut up everything you eat very small, chew very well, at night sleep on a wedge like pillow arrangement or have a foam wedge that raises your bed head 6" or 8".. You need to keep a log of what you eat in the kitchen and a log in the bathroom to tell date and what happens each day as you eat… what comes out the other end…

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I've been on that diet, kept the logs, done everything that I am reading about for Gastroparesis for years because of my other digestive conditions. It looks like the same medications even, and I have been on all the
medications out there, and nothing is helping this. I literally can't eat anything until I have to force myself to. And that is usually an ensure. If I am lucky it stays down. They said this started 6 years ago when I had my last gastric emptying test. It's been like a really bad flu all year long that never goes away.

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giproblems, this may be an area to investigate…thiamine. Thiamine requires magnesium to become bioactive. The fat soluble forms of thiamine may offer better absorption through the blood/brain barrier.
https://www.hormonesmatter.com/tag/thiamine-gastroparesis/
https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo
https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo
https://pubmed.ncbi.nlm.nih.gov/2012043/

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@giproblems78

It might be time you went to a different GI doctor. .. even if it means going to another city or state. It sounds like you feel you are not being listened to.

I have been blessed with a husband that is better than I am at getting people to listen to him. I think it is because a sick me is difficult to live with. 😁 I have Barrett's esophagus and Achalasia. I have been having a rough couple of weeks with nausea and vomiting. It has lessened, so hopefully soon totally subside for awhile. I have a Reliefband ordered and hopefully on the way in hopes it will help with the nausea and vomiting.

Normally I have my esophagus dilated around every 12 months. My last dilation was August 2019. I called last spring and was asked to hold off as long as I could because covid was so bad in Mayo Clinic in Jacksonville… my home town at the times was like #2 per capita in the US in cases and deaths. They suggested I try some over the counter medication to help.. it doesn't.

Covid has now revved up here in my town.. a lot of covid patients and many workers out sick or in quarantine. I plan on calling the Mayo for an appointment in the next few weeks and hopefully covid will be calmed again.

I used to have severe Gastroparesis. Aaah.. you saw the words “used to”. I had to have a gastric bypass.. roux-n-y… to fix a paraesophageal .. sliding hiatal hernia. My food now goes straight into my small intestines.

With the swallowing problems… the sphincter that allows food into my stomach does not work properly. Basically the reverse problem of Gastroparesis. Food will back up into my esophagus causing nausea and vomiting. It is difficult to vomit at times. Food nor liquid will go down when it is really bad.

One thing I found with water along my gastric journey is that liquids go down much better if they are at room temperature or warm. Filtered water is better on the stomach. We have an under the sink filter system on the cold water tap in the kitchen. Some people use the pitcher system. We have city water and this system filters old the chlorine which can be an irritant and cause nausea. I'm not sure of the other things it filters out.

I wish I could be of help to you. I hope soon you find the help you need.

ZeeGee

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@giproblems78, I'd like to add my welcome to the Digestive Health group.

Here are the related discussions about gastroparesis that @ken82 refers to:
– Gastroparesis: https://connect.mayoclinic.org/discussion/gerd-gastroparesis-neurogenic-bowel/
– Gastroparesis: Anyone take Reglan? What works for you?: https://connect.mayoclinic.org/discussion/gastroparesis-8/
– Gastroparesis Diet Guidelines: https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/gastroparesis-diet-guidelines-1/

I agree with Ken and @fourof5zs that it might be time to seek another GI specialist. Is that a possibility for you?

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I know that is what I am going to have to do.
It's just so exhausting having to go through this again after 12 years of having these issues. I need to request a detailed test result so I have a better idea of what I am dealing with. Maybe I can manage it on my own for awhile before taking that on. It's a lot of work being a sick person.

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@giproblems78 I received my Reliefband yesterday. I really did not have much hope that it would help with the nausea. I was very surprised and delighted!! It really has helped. Hopefully it will continue to do so. My husband ordered the Classic model for me through Amazon… my husband has a Prime account and with that there is free shipping. The company sells it at Amazon same price as their website.. right now a little sale. There are many similar devices and cheaper I just went with what my pain specialist suggested and another person on Connect and some acquaintances said it worked. It basically works on the principle of pressure point and vibrations like a tens machine.. it is worn like a watch, but the control face is towards bottom of wrist.

I know how it is to be miserable with no answers and frustrated. My heart goes out to you.

ZeeGee

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I’m so happy it’s working for you ZeeGee! I’m smiling! It’s been so much help to me in the past. I wore it for weeks after my knee surgery. Cruises, well I just hope the day when we can board that moving mansion again as it works so wonderful for travel sickness!

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@destinnana

I’m so happy it’s working for you ZeeGee! I’m smiling! It’s been so much help to me in the past. I wore it for weeks after my knee surgery. Cruises, well I just hope the day when we can board that moving mansion again as it works so wonderful for travel sickness!

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@destinnana
I appreciate your input. It helped a lot in the decision. It has been nice to look forward to eating instead of dreading it.

The device works best on my right wrist. I had arthroplasty tightrope surgery on my right thumb Jan. last year. As a bonus it seems to be helping with the pain with that thumb that goes into the tendon of my arm.. right where the device sits.. who would have thunk that would happen. 🥳 I told my husband I would probably be using the device more for the tendon pain relief than nausea.

ZeeGee

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I am having the exact experience with both of my gastroenterologist. I was told I need to see a motility specialist. Unfortunately, HUP stated all of there doctors are totally booked and the first available appointment would be in January 2022. I had an EGD with Botox without any improvement. To top that off, the gastroenterologist who did the procedure refuses to complete my short term disability form?!?!

I work at the Children’s Hospital of Philadelphia and I am unable to perform my duties because I am in constant stomach pain, nausea, vomiting and diarrhea. Sometimes I’ll have accidents because I can’t get to the bathroom quick enough. I have been unable to eat and have also lost a significant amount of weight. I’ve been to the Emergency Department 2 times in the last 2 weeks. I felt that they should have put an ng tube in so I would be getting some nutrients.

I was able to find a motility specialist at another hospital, but that isn’t until August.

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Hi everyone, sorry for the late response. Since my last post, I've had a gastric stimulator put in. My nausea has gone down some. It's better, but I still have really bad days yet. I'm also dealing with issues regarding my IBS and a narrowing of my colon. I see a new gi doctor in August. I will probably need to get a pyloroplasty done next year for the gastroparesis. No medication will work because of how bad the disease is, so it's all surgical from this point.
Thank you for all of your input and experiences. It's very lonely being sick. I feel a lot better knowing others understand!

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