Anyone diagnosed with Gastroparesis?

Posted by jlfisher56 @jlfisher56, May 7, 2017

I have had problems similar to so many GI people. The swallowing problems (food stuck in the throat, bloating, nausea, feeling like choking, "fullness" for hours). Finally after many upper and lower scopes ( have 18 cm colon left and function 80% well when cervical neck is well), a small hiatal hernia, numerous different PPI's for stomach changes, reflux, etc. and now on Nexium, the finding out the main problem 6 years ago was gastroparesis caused by a pain medication. Instead of a pacemaker, I tried a "newly" approved drug for the pyloric muscle of the lower stomach, botox, placed in 3 places to keep the muscle open a little so food could continually be released into the small intestine. The erythromycin in a low dose is a prokinetic, making the nerves contract the stomach muscles but, wasn't working. Still use 4x/day. This way no food collected in the stomach being able to "rot" causing sepsis, and decreased daily nausea and vomiting. I still can only eat small amounts and is more liquid or soft medicine/foods. My appetite isn't the best. I often have reflux, bloating, constipation and hoarseness. But it has been 3 yrs since botox to my stomach and it is working. I take my blessing where I can. I hope this helpe others.
Also, my diet had to change to rapidly digesting foods like white bread and not the "good" eating I was doing like whole wheat or 21 grain bread ( was laying on my stomach for hours), plus many vegetables and also many raw vegetables...a no no.
My daughter is going through so much of this and is an RN. Has Barrett's esophagitis, hiatal hernia, dysplasia, leaky gut syndrome i.e. and awaiting biopsies. Constant n/v, bloating,hoarseness, food in the throat like you in the chat.She is also an RN. On many "new" meds again.
It really can get to you especially when you work and have a very busy life like she does.
My best to all. Hope I could help someone.I understand your frustrations. It is wonderful having an understanding doctor that listens!

Joan

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@ubikings

Hello @nanny23, I have same challenge, please kindly share how you have been coming with it since you were diagnosed. I am 40 years old with a family of 3 and simply passing through severe pains now that am asking how did I get here and how will I cope to work and train my young family. Kindly share please because am in dire need of assistance, please.

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I try to eat spinach and other roughage to help me pass food quickly. Sometimes nothing works. Warm prune juice works.

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Hi all - I am brand new to this group and they think I have SIBO and gastroparesis. The diets are COMPLETELY OPPOSITE of each other. How screwed can one get? Just finishing a course of antibiotics for the SIBO and then will have the eating test for the gastroparesis. Been totally healthy all my life until the last couple of years. ALL vitals are super healthy, so I have no idea what might have caused this. The bloating/distentension and constipation are the worst.

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@jfar007, hello. I hear ya about opposite diet. I have kidney disease so have eliminated meat from my diet and most animal products (including most dairy) though I do eat eggs for the protein and have to limit whole grains. But I also have Type II diabetes which does call for whole grains and good fiber and limited carbs. Yet this conflicts with my diet for gastroparesis which limits fiber (thus eliminating many vegetables as a source of protein such as beans and nuts.) It's quite a balancing act. I received very little help from local dietitians with my renal diet so designed my own and after almost no help from the GI peeps have had to design a compromise diet which balances the three diets the best I can. Fortunately my local hospital is revamping its dietary department and is hiring "real" dietitians who are experts and will be offering one-on-one consultations early 2023. But I've already discussed my "compromise diet" with one of the new dietitians and it seems I'm on the right track. I will post what I find out later on but meanwhile I hope you can find a doc or dietitian who can help you balance the opposite diets.

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@kamama94

@jfar007, hello. I hear ya about opposite diet. I have kidney disease so have eliminated meat from my diet and most animal products (including most dairy) though I do eat eggs for the protein and have to limit whole grains. But I also have Type II diabetes which does call for whole grains and good fiber and limited carbs. Yet this conflicts with my diet for gastroparesis which limits fiber (thus eliminating many vegetables as a source of protein such as beans and nuts.) It's quite a balancing act. I received very little help from local dietitians with my renal diet so designed my own and after almost no help from the GI peeps have had to design a compromise diet which balances the three diets the best I can. Fortunately my local hospital is revamping its dietary department and is hiring "real" dietitians who are experts and will be offering one-on-one consultations early 2023. But I've already discussed my "compromise diet" with one of the new dietitians and it seems I'm on the right track. I will post what I find out later on but meanwhile I hope you can find a doc or dietitian who can help you balance the opposite diets.

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Wow you definitely have more of a challenge than I do. Thank you for sharing - its just kind of depressing we have to learn to just accept it. Thanks so much for reaching out

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@kamama94

@jfar007, hello. I hear ya about opposite diet. I have kidney disease so have eliminated meat from my diet and most animal products (including most dairy) though I do eat eggs for the protein and have to limit whole grains. But I also have Type II diabetes which does call for whole grains and good fiber and limited carbs. Yet this conflicts with my diet for gastroparesis which limits fiber (thus eliminating many vegetables as a source of protein such as beans and nuts.) It's quite a balancing act. I received very little help from local dietitians with my renal diet so designed my own and after almost no help from the GI peeps have had to design a compromise diet which balances the three diets the best I can. Fortunately my local hospital is revamping its dietary department and is hiring "real" dietitians who are experts and will be offering one-on-one consultations early 2023. But I've already discussed my "compromise diet" with one of the new dietitians and it seems I'm on the right track. I will post what I find out later on but meanwhile I hope you can find a doc or dietitian who can help you balance the opposite diets.

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Can you please share some of the foods that you can eat? I have SIBO, GP, and Kidney disease, with diabetes and IBS-D. It sure is a balancing act. Never know what will agree with me and also be healthy. I eat a lot of cold wild salmon, shredded chicken and egg salads, tuna fish, shrimp, scallops, cod, rockfish, oysters, lots of fish. Butter lettuce and berries. I just discovered sugar free apple pie, which has NO potassium!! Tried kale last night and I was in the bathroom all night. Argh...

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@mrssdr

Can you please share some of the foods that you can eat? I have SIBO, GP, and Kidney disease, with diabetes and IBS-D. It sure is a balancing act. Never know what will agree with me and also be healthy. I eat a lot of cold wild salmon, shredded chicken and egg salads, tuna fish, shrimp, scallops, cod, rockfish, oysters, lots of fish. Butter lettuce and berries. I just discovered sugar free apple pie, which has NO potassium!! Tried kale last night and I was in the bathroom all night. Argh...

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@mrssddr, sorry I am so late answering your question about some of the foods I can eat.

Please remember I also am type 2 diabetic and have stage 4 CKD so I have had to compromise a lot since diets for those chronic diseases conflict with each other.

At the height of my 1st gastroparesis flare-up I was in the hospital on clear liquids for 2 days then on the 3rd day a light meal of radioactive scrambled eggs and strawberry jam on toast for a gastric emptying study (I couldn't eat it all.) I also had an endoscopy and a colonoscopy the 4th day after being NPO the day before except for the bowel prep.

After I was discharged I could eat nothing for several days but drank Boost, clear juices, popsicles, clean jelly (like apple jelly,) clear vegetable broth (I'm a vegetarian except for free-range eggs and a minimal amount of dairy cooked in certain breads, etc.) and other liquids. I was already nutritionally challenged and not being able to eat had a very negative impact on my stamina/energy as well as cognition and mood.

A week later I was able to add a very few soft foods such as soft-scrambled or soft-boiled egg, reduced fat peanut butter, vegan ice cream, soft breads, small amounts of mashed potatoes, vegan yogurt, etc., along with Boost and the other foods mentioned above.

It took nearly a year of very slowly re-introducing GI-friendly foods and some backing off from those that didn't agree with me but today I am able to eat much better.

I generally have 1/2 serving of Boost for breakfast and 1/2 serving of yogurt or 1/2 Boost and 1 tbsp peanut butter plus 1/2 banana.

Mid-morning meal is 1/2 serving of reduced sodium V8 and 1/3 to 1/2 pkg Lance peanut butter crackers.

Lunch is peanut butter and jelly on a soft slider bun or 50 grams of ripe avocado and 1/2 tbsp lite mayo on a soft slider bun or sometimes egg salad (boiled egg mashed, pinch onion powder, 1 tbsp lite mayo) on soft slider bun.

Afternoon meal is 1/2 serving mango juice (no pulp) and 1/3 to 1/2 pkg PB crackers.

Dinner is another 1/2 Boost, 1/2 serving mashed potatoes or 61 grams baked potato without skin, 1/2 serving well-cooked carrots or well-cooked pureed beets. (Next week I will add a very small amount of potato salad I make with 61 grams of cubed baked potato and lite mayo plus a pinch of onion powder and 1 low-sodium no sugar added pickle slice-skin removed-chopped up to see if I can tolerate it; also will try a half-serving of cooked-to-mush spinach-since I need iron and B12-to see if I can tolerate that.)

HS diabetic snack is 1/3 to 1/2 pkg PB crackers and a popsicle, sometimes extra if blood sugar is too low before taking bedtime insulin.

Please know, I am not recommending any of the above for anyone else, it's just what has worked for me so far.

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Can anyone tell me if minute amounts of celery seed occasionally are ok on a gastroparesis diet? I know the recommendation is to avoid seeds but I'm talking about a very small pinch of something extremely tiny.

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Hi, I’m brand new here— looking to connect/ find support with others dealing with GASTROPARESIS. I’ve just been diagnosed. 😖I also have Rheumatoid Arthritis, & Panic / Anxiety Disorder. I’ve been researching and feel overwhelmed with all the information and potential severity of this unforeseen condition. If you have insights you are willing to share, I would be grateful! Thank you!

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@lisawn215

Hi, I’m brand new here— looking to connect/ find support with others dealing with GASTROPARESIS. I’ve just been diagnosed. 😖I also have Rheumatoid Arthritis, & Panic / Anxiety Disorder. I’ve been researching and feel overwhelmed with all the information and potential severity of this unforeseen condition. If you have insights you are willing to share, I would be grateful! Thank you!

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I was diagnosed in Dec and I also have anxiety. Each one makes the othet worse.

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@lisawn215

Hi, I’m brand new here— looking to connect/ find support with others dealing with GASTROPARESIS. I’ve just been diagnosed. 😖I also have Rheumatoid Arthritis, & Panic / Anxiety Disorder. I’ve been researching and feel overwhelmed with all the information and potential severity of this unforeseen condition. If you have insights you are willing to share, I would be grateful! Thank you!

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I suffered with Gastroparesis for over 3 years. The diet helped a little. Then the physical therapy helped more with taking the mixture for my constipation before bed. But I was still hurting most days.
Then I found a surgeon who did a procedure on me called a Pyloroplasty. I have a different life now. I still watch what I eat but rarely have pain.

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