Floating stool, unintended weight loss, feel full relatively quickly

Posted by Lissa @sonic997, Jan 16, 2023

Hi. I have the above referenced issues, but feel relatively good…albeit losing 15 pounds in 4 months without trying. Have good appetite, but get full relatively quickly. Colonoscopy all good. Endoscopy just shows erosions, waiting for biopsy results. Gastro says it’s GERD, but I don’t have much more than mild stomach discomfort. Have CT with dye of chest, pelvis/abdomen scheduled, but thinking it’s aggressive and maybe should wait for endoscopic pathology. Stool always floats, but fecal fat stool test was negative. Blood work CBC normal. Any suggestions or thoughts would be greatly appreciated

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susanh824 | @susanh824 | Jan 25, 2023

In reply to @sonic997 "Thank you I will keep posting after test results of ct scans and pathology from endoscopy...." + (show)

Make sure they do an endoscopy with ultrasound (EUS) to rule out problems with the pancreas. I have similar symptoms and already had a regular EGD. Now I have to have another one with US. I am literally typing this from my pre-op bed.

Lissa | @sonic997 | Jan 25, 2023

In reply to @susanh824 "Make sure they do an endoscopy with ultrasound (EUS) to rule out problems with the pancreas...." + (show)

Oh. Does the regular cat scan and endoscopy not show the pancreas?
Good luck today at your test

lovelydaisy47 | @lovelydaisy47 | Jan 25, 2023

I am the same way. except stool doesn't always float. had all test also. but I also had to have my esophagus tighen, through surgery. if you can fine out , whats what..please let me know and I will do the same. most grateful...

lovelydaisy47 | @lovelydaisy47 | Jan 25, 2023

In reply to @lovelydaisy47 "I am the same way. except stool doesn't always float. had all test also. but I..." + (show)

I have Crohns for 45 yrs. do you have the same?

susanh824 | @susanh824 | Jan 25, 2023

In reply to @sonic997 "Oh. Does the regular cat scan and endoscopy not show the pancreas? Good luck today at..." + (show)

The CT shows them, but my understanding is that they get a better look with the endoscopy. Mine looked normal today, so I’m back to square one trying to figure out what is the cause of my weight loss and pain.

Lissa | @sonic997 | Jan 25, 2023

In reply to @susanh824 "The CT shows them, but my understanding is that they get a better look with the..." + (show)

What are your symptoms?

susanh824 | @susanh824 | Jan 25, 2023

In reply to @sonic997 "What are your symptoms?" + (show)

I’ve lost 60 lbs in nine months without trying. I have very little sense of hunger, and just forget to eat.

I had a strange rash on both of my lower legs that appeared at about the same time all this started. After trying steroids, my dermatologist prescribed Naltrexone, which did clear the rash up. Unfortunately, I never had it Biopsied, and it has not come back.

I’ve recently developed pain in my left upper to middle quadrant that goes through to my back.

A CT scan of abdomen last July (done in ER because of pain) was normal. They are doing a repeat CT on Monday. I also am having an iron infusion soon (anemia) and an ultrasound of my thyroid.

I feel like my doctors are trying, but they are missing something. Meanwhile, the pain gets worse, and I am continuing to lose weight.

susanh824 | @susanh824 | Jan 26, 2023

In reply to @grannydee "Have you been tested for Exocrine Pancreatic Insufficiency??? Please review my profile for my experience if..." + (show)

Hi Geannydee,
My pancreas looked fine on ultrasound. After doing some intense research on my own, I do believe I have EPI. My doctor sent home the stool fat testing kit, and I am awaiting clarification from his nurse on how exactly to test. I was a bit overwhelmed by the need to eat 100-150 fats a day, and I used to love sweets!

How long have you been diagnosed? I’m a bit scared by you comments on the cost of the medication. I am already disabled by other causes and live on Social Security and a small pension. Am hoping that, if I do have EPI, that I qualify for help from the drug company, as well.

Wishing you the best of health’
Susan

Lissa | @sonic997 | Jan 26, 2023

In reply to @susanh824 "I’ve lost 60 lbs in nine months without trying. I have very little sense of hunger,..." + (show)

Now I remember reading this. Our symptoms are different and it sounds like you’ve had such a tough journey. I’m so sorry.

grannydee | @grannydee | Jan 26, 2023

In reply to @susanh824 "Hi Geannydee, My pancreas looked fine on ultrasound. After doing some intense research on my own,..." + (show)

Oh Susan! I’m so sorry, I was hoping that I was wrong.
But PLEASE contact the company:
Prescription Assistance
I’ll get you the phone number to call.
You will need to send them proof of income and tax return along with a prescription from your gastroenterologist
There are also forms to complete and they can be faxed or mailed. I strongly encourage you to also contact the National Pancreatic Foundation. They have been a wonderful source of information. Please go to their website and you will see my story. Please mention me and tell them that I want you to have my email address! I will then give you my phone number.
It will take a few weeks for you and your gastroenterologist to determine your medication schedule and your nutrition is your biggest priority!!!
Maybe your insurance will cover a consultation with a registered dietitian. They are the best source for nutrition advice as they have the most education and are properly trained and licensed.
I am here and want to encourage you and congratulate you for advocating for yourself!!!
It’s a confusing and seldom heard of disorder.
But NOW you have a plan and HOPE!!!
🫶🏽