UPDATE on Epigastric Mystery

[lindaneall]

I have continued to have discomfort in the epigastric (upper stomach) area and having difficulty eating. The biopsy results came back today and were negative for H.Pylori and Celiac. I was hoping the answer was H.pylori and I could have gotten on treatment for that and soon been well. The disheartening news is that both Shands and Mayo are booked till the END of NOVEMBER!!! The GI doc. is putting STAT on his referral, but he knows Shands is backlogged.

I have hardly been able to eat for over 2 weeks now and can't imagine what shape I'll be in if this continues!  I pray that either this crazy thing will quickly go away, or I will be able to get into Shands ASAP.  I'll keep you posted.

[Scottietottie]

Hi

That's a long time to wait to see a specialist. Could you manage to drink those kind of nutritional drinks one can get. In the UK they are called Complan but I don't know what it would be in the US. It has all the nutrients, vitamins etc in it that one needs. It's a powder to be mixed withy milk and comes in different flavours.

Take care - Scottie 

[navydad]

I have continued to have discomfort in the epigastric (upper stomach) area and having difficulty eating. The biopsy results came back today and were negative for H.Pylori and Celiac. I was hoping the answer was H.pylori and I could have gotten on treatment for that and soon been well. The disheartening news is that both Shands and Mayo are booked till the END of NOVEMBER!!! The GI doc. is putting STAT on his referral, but he knows Shands is backlogged.

I have hardly been able to eat for over 2 weeks now and can't imagine what shape I'll be in if this continues!  I pray that either this crazy thing will quickly go away, or I will be able to get into Shands ASAP.  I'll keep you posted.

You tell that Gastro you cant wait that long,, ask him if he wold like to not be able to eat,, if yo uhave to ,, show up at the ER every dam day

[Daisy1234]

Hi Linda:

Oh this is awful!  Please get yourself some Ensure or some other liquid meal replacement to get you over this hump.  Also look at a pureed food diet if you can keep any of that down.  As a last resort you can always try some baby food.  A speech therapist or dietician can both help in this area as you need to keep up your strength.   I would also suggest that you please call both of these places and and see if there is a cancellation list that you can get on. 

Thinking of you,
Daisy

[lindaneall]

Thanks for your ideas. Yes, I do drink an Ensure occasionally and when I have a reprieve from the "Pit" feeling, I can eat a few bites of food here and there. The thing I don't like about Ensure or Boost is how sweet they are. When my stomach is hurting, I can't tolerate more than a couple bites of soup or anything. It is strange, it just makes it hurt worse.

There is always that annoying burping:(  I have 4 more days to go on the antibiotic for SIBO (Small Intestinal Bacterial Overgrowth) in case that is it. Hopefully this will pass soon. I appreciate you all SO very much!! I'll keep you posted.

Linda

[irish]

Linda, I am really sorry to hear that you are suffering this way. Most of us want to stop eating so much and here you can't. Hope you can get in ASAP.

Good idea to drink the ensure--there are many different products out there and some are not as rich and sweet as others. Also, some don't have much milk in them. You will have to read labels and check with the pharmacist. Have you tried putting a little yogurt or ice cream in them. This adds a few more calories.

Something else that will help you feel a little better energy wise is to eat jello. Try the peach that is quite mild---it is very good right after it is made when it is hot or warm. You might even want to water it down to make it easier for your stomach to accept. Have you been getting your potassium, sodium, electrolyes checked since this has happened. WHen we don't eat or drink the appropriate diet we can get low and this can cause serious problems. I would assume your doc is doing this. If you need electrolytes ask him about gatorade or Pedialyte which is used for babies with diarrhea and works well with all of us.

If you can't take lots of fluids at once maybe try making ice cubes out of the gatorade or jello. The jello freezes up sort of mushy if you don't put as much water in it. Have you had to measure the amount of fluid that you are taking in??? Just curious about this. I have also wondered if you have a drug that is causing this. Sometimes a drug can give a really weird side effect. People who take digitech can get a really funny tummy sometimes. I will be thinking of you. Good luck and keep us posted. Irish

[Seeker]

Howdy lindaneall, are you having the following symptoms? :

heartburn
pain in the upper abdomen
nausea
vomiting of undigested food?sometimes several hours after a meal
early feeling of fullness after only a few bites of food
weight loss due to poor absorption of nutrients or low calorie intake
abdominal bloating
high and low blood glucose levels
lack of appetite
gastroesophageal reflux
spasms in the stomach area

If you do, you really need to push to see a specialist. 

Also dehydration can become an issue.  If you can, sip on some Gatorade.  That will help you keep hydrated and give you the electrolytes you need. 

Seeker

[malditogrillo]

I have similar symptoms and my biopsies came back completely normal even though visually I had abnormalities.    IT was really hard for me to eat until I was put on meds to help with the ulcers and gastritis that I was suffering from.

[Gerty]

oh my lindaneall this is awful the wait to see a specialist is unbelievable can you get on a cancellation list at all I would ring and ask them if you have not done so already hugs

[lindaneall]

IRISH, Thanks so much for the tips. My blood work 1 week ago showed the electrolytes were OK, but that is such a good point. I had my husband pick up some Gatorade today.

MALDITOGRILLO, That is amazing. Did your endoscopy show an ulcer, yet the biopsy still came back NEGATIVE for H.pylori (which causes ulcers)?  The GI doc. didn't see any ulcers, but I did have some very mild surface gastritis that I also had 22 months ago during my last endoscopy. I'm sure that has never bothered me.  After your story, I wonder if I might still have an H.Pylori infection. I'm wondering if the spot where he biopsied might have been clear, yet there is still an infection around in part of the stomach. Maybe I'll ask for an H.pylori blood test to further confirm his biopsy results. Thanks for sharing.

GERTY, When the center calls to schedule, I'll ask to be put on a cancellation list. That is a GREAT idea. I hadn't even thought of that. Thanks.

[Seeker]

When you finally get to see a specialist, ask them about doing a gastric-emptying study.   If you can get that done, it could save you a lot of time and money.   The test will rule out a lot of bad things that could be happening to you. 

Seeker

[lindaneall]

Thanks Seeker. I did have a Gastric Emptying study done 4 days ago. The results said, "Gastric emptying is slightly longer than average for our procedure. Otherwise normal study."  I really don't think I have gastroparesis, since this achy "pit" feeling started at 4 a.m. 16 days ago. I have been having the annoying burping for 4-5 months now (whether I eat or not, although it is worse after I eat). Also, I don't have nausea or vomiting after I eat.  I hope to be able to see the GI Motility specialist at Shands to make double sure that Gastroparesis isn't the issue.  Thanks.

Linda