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josephkahn
@josephkahn

Posts: 3
Joined: May 08, 2017

Chronic dyspepsia, early fullness. Possible outflow obstruction.

Posted by @josephkahn, May 8, 2017

Hi everyone,

Really happy to be joining this community!

In 2013 I started experiencing symptoms of chronic dyspepsia as well as early fullness. Constantly feel discomfort in stomach, nausea and occasional constipation. The main problem is early fullness: I feel totally sick after a couple bites or sips of anything. In the last couple years I’ve lost a bunch of weight.

Four different medical teams have tried to figure out what’s wrong. Two CT scans, an MRI, 4 endoscopies, a colonoscopy, multiple pathology tests, a gastric emptying study, and four upper-GI series. I’ve not undergone any procedures or been put on medication for more than a week or two at a time.

At the moment two different medical teams are arguing about what’s wrong with me. One believes based on an MRI and CT scan that there is an outflow obstruction after the second part of my duodenum, which they think is annular pancreas or some close variant. They believe that by bypassing my duodenum they will relieve me of the symptoms. The other team (looking at the same images) thinks there isn’t evidence to justify an operation and thinks the problem is functional. Both teams agree that the duodenum is slightly dilated, and there is some amount of narrowing after the second phase.

I don’t know what to do since we’ve basically exhausted all of the different imaging and scope-based tests as far as I can tell.

If anyone has suffered from these symptoms before or been in a similar situation, I would greatly appreciate hearing your stories.

Thank you so much,

Joseph

REPLY

Hi @josephkahn,

We’re glad that you’ve joined Connect, too; welcome!

Here’s some information about dyspepsia from Mayo Clinic: http://mayocl.in/2q0rmKz
I found a few past discussions on Connect that might interest you; please feel free to read through the posts, and tag members:
functional dyspepsia: http://mayocl.in/2pY9XlL
dyspepsia: http://mayocl.in/2pY2jIe

You may also wish to view this conversation, “Gastroparesis” http://mayocl.in/2pgbKUy, where @paarak @sebley12 @michellegina along with @arletta @shimmerpixie and others have talked about the feeling of fullness.

@josephkahn, has your healthcare team ruled out h-pylori or gastric ulcers? Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation for 2016-2017 by U.S. News & World Report; have you considered getting a second opinion? How are you managing your diet, presently?

Liked by josephkahn

@josephkahn, I just came across this recent post, “GERD, gastroparesis, neurogenic bowel” http://mayocl.in/2q1LZXs, and thought you may relate to some of the symptoms; Joan, @jlfisher56 do you have any suggestions for @josephkahn?

Liked by josephkahn

I have not suffered from your condition but do understand how you feel. My GI problems are different but symptoms so much the same. Sounds like you have had thorough testing and by bypassing the narrowing, your intestines and pancreas should be good (unobstructed), your symptoms improve, and hopefully won’t come back. They would be the best to tell you. I am glad you have two teams with thee extensive knowledge (all the testing and study of your situation and related symptoms). The best to you and hope what you decide makes your health much improved.

My daughter is an RN also and has so many similar problems too. She needs to try a gluten free diet because of erosion at the cecum and a hx of irritable bowel. They found a small hiatal hernia, GERD, and now has Barrett’s esophagitis. She has been on many meds for reflux and has been taking Nexium, 2 times a day and is often tired. Many times I think “we” get tired from poor adsorption of our food and due to stomach inflammation, some decreased contraction, some having the bacterial infection H pylori, it affects our whole body. Our gut is our #1 immune system fighter so no wonder if it doesn’t work well, we get sick or tired to begin with. I am sorry I don’t know what it could be but like I stated, I look at many professional sites (Harvard, NIH, clinical trials,etc.) and often find help there. Two or more opinions are important and if 2 don’t give you confidence, I would get another. It is your body..Best of luck. Joan

@kanaazpereira

Hi @josephkahn,

We’re glad that you’ve joined Connect, too; welcome!

Here’s some information about dyspepsia from Mayo Clinic: http://mayocl.in/2q0rmKz
I found a few past discussions on Connect that might interest you; please feel free to read through the posts, and tag members:
functional dyspepsia: http://mayocl.in/2pY9XlL
dyspepsia: http://mayocl.in/2pY2jIe

You may also wish to view this conversation, “Gastroparesis” http://mayocl.in/2pgbKUy, where @paarak @sebley12 @michellegina along with @arletta @shimmerpixie and others have talked about the feeling of fullness.

@josephkahn, has your healthcare team ruled out h-pylori or gastric ulcers? Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation for 2016-2017 by U.S. News & World Report; have you considered getting a second opinion? How are you managing your diet, presently?

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To the best of my knowledge, both of those have been ruled out. At the moment I’m doing little to manage my diet except eating more frequent, smaller meals (or snacking through the day). I don’t have any allergies as far as we know. Have also used liquid nutritional supplements.

At this point, I’ve had opinions from 4 separate medical teams. Will be getting an endoscopic ultrasound to try and figure out if there really is an obstruction in the next couple months.

Any thoughts? 🙂

Have they done any genetic work-ups on you? My daughter-in-law around the age of 26 went down to about 86 pounds and could eat almost nothing. They even gave her last rights. Every month they would give her dextrose (sugar) IV’s (plus other ingredients) to flush out her liver and had her eat basically one food per month. One time was sliced string beans. I wondered if it was a type of PKU but didn’t say anything. Eventually, she got to Johns Hopkins and they tested her genetically, she had a form of it and she started to gradually eat foods again, took certain medications, and they instructed her on types of foods to avoid a crisis. She presently is coming out of one; hadn’t had one in many, many months but, it could have been some foods she had been eating too much of. All the same digestive symptoms so many write of and like you have..
If she didn’t get better, she planned on going to the Mayo Clinic but, the last week she make a dramatic turn-around. She is 42 years-old and it took so many years to find the real problem out. I believe it was only 4 or 5 years ago when the testing was done. Just an idea. Can be so many things like the GMO foods our GI tract just doesn’t seem to be able to digest well; many have all kinds of bowel problems from them and try organic foods. If I find any info out from my medical sites I will let you know. Best of luck. Like I said, my daughter-in-law had good help at Johns Hopkins but also believed the Mayo Clinic was very capable, maybe even more so, to help her with the problem that was discovered. Once you know what it is…you at least can treat it correctly. Hope you start to feel better!

@jlfisher56

Have they done any genetic work-ups on you? My daughter-in-law around the age of 26 went down to about 86 pounds and could eat almost nothing. They even gave her last rights. Every month they would give her dextrose (sugar) IV’s (plus other ingredients) to flush out her liver and had her eat basically one food per month. One time was sliced string beans. I wondered if it was a type of PKU but didn’t say anything. Eventually, she got to Johns Hopkins and they tested her genetically, she had a form of it and she started to gradually eat foods again, took certain medications, and they instructed her on types of foods to avoid a crisis. She presently is coming out of one; hadn’t had one in many, many months but, it could have been some foods she had been eating too much of. All the same digestive symptoms so many write of and like you have..
If she didn’t get better, she planned on going to the Mayo Clinic but, the last week she make a dramatic turn-around. She is 42 years-old and it took so many years to find the real problem out. I believe it was only 4 or 5 years ago when the testing was done. Just an idea. Can be so many things like the GMO foods our GI tract just doesn’t seem to be able to digest well; many have all kinds of bowel problems from them and try organic foods. If I find any info out from my medical sites I will let you know. Best of luck. Like I said, my daughter-in-law had good help at Johns Hopkins but also believed the Mayo Clinic was very capable, maybe even more so, to help her with the problem that was discovered. Once you know what it is…you at least can treat it correctly. Hope you start to feel better!

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What kinds of genetic markers should I ask my doctor about?

@jlfisher56

Have they done any genetic work-ups on you? My daughter-in-law around the age of 26 went down to about 86 pounds and could eat almost nothing. They even gave her last rights. Every month they would give her dextrose (sugar) IV’s (plus other ingredients) to flush out her liver and had her eat basically one food per month. One time was sliced string beans. I wondered if it was a type of PKU but didn’t say anything. Eventually, she got to Johns Hopkins and they tested her genetically, she had a form of it and she started to gradually eat foods again, took certain medications, and they instructed her on types of foods to avoid a crisis. She presently is coming out of one; hadn’t had one in many, many months but, it could have been some foods she had been eating too much of. All the same digestive symptoms so many write of and like you have..
If she didn’t get better, she planned on going to the Mayo Clinic but, the last week she make a dramatic turn-around. She is 42 years-old and it took so many years to find the real problem out. I believe it was only 4 or 5 years ago when the testing was done. Just an idea. Can be so many things like the GMO foods our GI tract just doesn’t seem to be able to digest well; many have all kinds of bowel problems from them and try organic foods. If I find any info out from my medical sites I will let you know. Best of luck. Like I said, my daughter-in-law had good help at Johns Hopkins but also believed the Mayo Clinic was very capable, maybe even more so, to help her with the problem that was discovered. Once you know what it is…you at least can treat it correctly. Hope you start to feel better!

Jump to this post

I would ask for any genes that affect metabolism of proteins, any affecting digestion…my daughter in law is a form of PKU…phenyl ketonurea. All babies are checked at birth. But hers is of that but not as bad as the newborns. There are different types. Occurs /or is noticed in the 20’s she said The pancreas has different enzymes that can be checked (levels), stomach and the brain. If you can, Web MD is a good site to look up information that might help. I would have thought (although with my daughter-in-law was 10 yrs), they would have looked for a genetic component, especially today. No one in her family has this, that is is aware of but, that means nothing. Environment can change our DNA. If I come across anything I will post. It is frustrating.
My diagnoses sometimes also took years and when I went a doctor someone “referred” me to, I had an answer often in 5 min. Happened to me 3 times in my life for major things. I hope you get a good dr that listens to you and ask about genetic testing for digestive causes. They can be very serious and like I said she almost died 10 yrs ago. It could be any of the digestive organs that are not breaking down the food correctly and becoming toxic in your body. Make sure your enzyme levels have been checked as well as the digestive levels (hormones). perhaps they were. Hope you are having better days. Joan

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