Need advice on aunt's mystery gastrointestinal illness

(Is this the right forum to post asking for medical “advice?” My apologies if it isn’t. Disclaimer: my aunt is under the care or several doctors on a regular basis. I am questioning their diagnosis and treatment.)

My aunt is 67 and has some sort of mystery gastrointestinal illness that has caused her to wither away to 93 pounds, but her doctor doesn’t seem worried. Can anyone give advice?

Background: Aunt is 67 and has COPD (Chronic Obstructive Pulmonary Disease) from a lifetime of smoking. She regularly sees a pulmonologist for this and takes several medications for it. She has bad shortness of breath and cannot walk too far without getting out of breath, and cannot climb a set of stairs. The COPD means that any cold or cough she gets will be more severe and last longer. But other than this, she was in decent health.

In mid-December, she got what she assumed to be the norovirus, which resulted in vomiting, diarrhea, abdominal pain, dehydration. She actually went to the ER for the dehydration. It took her a while to recover and while recovering, she was on a very bland diet. After about a month, she was eating fairly normally again. But a few weeks later, the abdominal pain came back. It seemed to be a combination of indigestion and gas pains. She thinks that this re-occurrence correlated with her taking a dose of NyQuil, but I am not sure if it’s the cause or just a coincidence.

For about 8 weeks now, she has been pretty much incapacitated and not able to leave her house. She is plagued by really bad gas and periodic abdominal pains. She is extremely weak and takes several naps a day. She started out at about 110 pounds and got down to a low of 93 pounds (she is about 5’ 5" tall). She is now stick thin.

She saw a gastroenterologist and he ordered a CAT scan, an endoscopy, and blood tests, and none of the tests revealed anything wrong. There was no intestinal obstruction. He diagnosed her with the vague diagnosis of “gastritis” which apparently was triggered by the norovirus episode.

She has been eating a very bland diet with no dairy and minimal vegetables or fruits. She has managed to gain about 3-4 pounds recently. But she is still getting these bouts of pain where she will get excruciating pains in her abdominal area (not her stomach, but her intestinal area). She says it feels like really bad gas pains. She has no diarrhea and is even slightly constipated. She has also been having what she describes as very painful “indigestion” in her esophageal area after eating. She said it feels like her chest is going to explode.

In the meantime, the gastroenterologist doesn’t seem too worried. He says to just keep doing what she’s doing. I, however, feel like there may be something more wrong with her. She seems dangerously thin, and cannot perform basic functions without someone helping her (my mom has been staying with her to help). She barely has enough energy to take a shower more than once or twice a week.

Any ideas on what could be wrong? Should we get a second opinion? Ask for more tests? Any input is greatly appreciated!!

A couple years back I had similar symptoms – loss of appetite, weight loss, weakness, abdominal pain, constipation, esophgeal pain, heartburn – and it turned out to be cholecystitis (inflamed gall bladder). But that should show up on a CT scan.

I’d encourage a second opinion.

Look up the side effects of her medications.

Thank you Pam. I had my gallbladder out a couple of years ago and am familiar with the symptoms. I suggested this to my aunt and mom but they are skeptical because the pain is not in the area of her gallbladder, but in her intestinal area. They also cite that her doctor did not bring it up as a possibility. However I think they should give her an ultrasound on her gallbladder. I know that is the first thing they did to me when I went in with my gallbladder attack. But yeah you would think it would show up on her CT scan.

Could it simply be the constipation that is causing the abdominal pains? Particularly if her diet has changed and she has less fiber . . .

That is what I am thinking. [I have adhesions in 3 areas and I can feel when my gut contents wander past one, I can feel it more if I am not getting enough fiber and am somewhat constipated.]

She should consider trying to get more dietary fiber and liquids - perhaps change things around to make lunch a hearty bowl of a high fiber vegetable based soup? One of my favorite comfort foods is actually a fairly high fiber lentil soup. Lots of fiber, plenty of liquid to keep hydrated, bold flavors.

Amount Measure Ingredient – Preparation Method -------- ------------ -------------------------------- 1 Cup Lentils – Dried Quick-Cooking 6 Cup Water 2 Bacon; Slices – Diced 1 Leek or Green Onion – * 1 Carrot;Large – Finely Chopped 1 Celery;Stalk – Finely Chopped 1 Onion – Finely Chopped 1 Tablespoon Vegetable Oil 2 Tablespoon Unbleached Flour 1 Tablespoon Vinegar 4 Frankfurters – Thickly Sliced 1 Tablespoon Catsup – Tomato 1 Teaspoon Salt 1/4 Teaspoon Black Pepper * Leek or Green Onion should be finely chopped. * Wash the lentils thoroughly. In a 2 1/2-quart saucepan bring 6 cups of water to a boil. * Add the lentils, bacon, leek or green onion, carrot and celery. Simmer, partially covered, for 30 to 40 minutes.

  • Meanwhile in a frypan, saute chopped onion in vegetable oil until soft.
  • Sprinkle flour over onion, and stir.
  • Lower heat, stir constantly, and cook until the flour turns a light brown. DO NOT burn flour.
  • Stir in 1/2 cup of hot lentil soup into the browned flour; beat with a wire whisk until well-blended. Beat in vinegar.
  • Add contents of frypan to lentil pan and stir together.
  • Cover and simmer for 30 minutes or until lentils are soft.
  • Add the frankfurters and catsup. Cook to heat frankfurters through.
  • Season with salt and pepper and serve hot.

I assume there’s been a chest X-ray, right? Lung cancer, being where it is, can cause all kind of havoc on the digestive system. A tumor pushing one or more tubes out of whack can cause pain and blockage.

FYI, the Washington Post regularly runs a feature on mystery illnesses, and a few weeks ago it was about a girl with gastrointestinal symptoms that weren’t diagnosed for years, until someone figured out that it was her gallbladder. One thing is to make sure that they look specifically at the gallbladder, and don’t just check for gallstones, but for other gallbladder issues as well

Did she have a round of antibiotics when she had the norovirus? Or any other time recently?

Frequent gas could result from a change in the bacterial flora due to a round of antibiotics. Perhaps a live culture food such as yogurt would help?

IANAD

Well when it first started she wasn’t constipated, in fact she was having diarrhea. She is having normal bowel movements, but sometimes feels constipated. The CT scan didn’t show any abnormalities. Maybe I will suggest she ask her doc if she can take a fiber supplement. Although I am sure her fear will be that it will cause gas.

Yes this has occurred to us. She had taken antibiotics for an upper respiratory infection. She can’t eat dairy right now, so she is going to take a probiotic supplement. Thanks!

Yes I read this article when it came out, it was very interesting. I am pushing them to ask about the gallbladder at her next appointment. Having myself had my gallbladder out, I am aware of the symptoms and how painful it is. They should at least be able to do an ultrasound to rule it out. Thank you for your input!

If it is the gallbladder, there are 2 treatments that are not too mainstream but that could help her.

  1. Taking a bile supplement. A supplement like ox bile or cholacolcan replace the bile that isn’t being produced and stored properly.

  2. A class of drugs used to treat high cholesterol known as bile acid sequestrants can increase the amount of bile in the intestines.

I don’t have gallbladder problems, but a family member does and while researching their condition I came across those 2 treatments.

However your aunts problem could be due to a lot of things. My first response was to think she had an issue with her intestinal flora, maybe a c diffovergrowth.

If C Diff is the problem, a probiotic like florastor could help her.