Gastroporesis

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kimmidwife

kimmidwife

Joined
Sep 19, 2010
Messages
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Hi all,
My daughter was just given a secondary diagnosis of Gastroporesis. I was wondering if anyone else here has this and if they have any advice for dealing with it.
Thanks!
 
Hi, thanks for starting the thread. :)

How was your daughter diagnosed? Did she have a gastric emptying study?

I have gastroparesis, along with other digestive motility problems. The gastroparesis is really hard because it makes it so hard to eat and gain weight. Is that what your daughter is struggling with or is it the symptoms (pain? nausea?) that are the problem? I also have severe reflux and heartburn which no meds seem to help with. I don't get any nausea or vomiting though, which I'm glad about.

The things that have helped me are:

Eating little and often! This helps so much. I eat a very small, snack-sized meal every three hours or so. And in between I suck on sweets, have high-calorie drinks, etc.

Relying on liquids a lot for nutrition - juice, milk, and liquid food supplements that my doctors prescribe. Liquids go through the stomach quicker and more easily than solids.

Calorie dense foods - this is hard, because foods that have a lot of calories tend to be more filling than ones that don't, but there are a few things that help, e.g. I don't find full-fat milk any more filling than skimmed; adding sugar to things like breakfast cereal; cooking veg in oil or milk and adding butter. There are also some healthy high-calorie foods so you don't have to eat junk all the time - avocados, peanut butter (nuts in general, but fibre's difficult to digest, so with stomach problems, nut butters go down much easier), olive oil.

My doctors did prescribe me a medication called Motileum (domperidone) but it didn't do much good for me. It's a safe med with few side effects though, so it's worth trying.

If it really gets bad, you might want to consider feeding tubes. That's a last resort, but I had TPN when I was recovering from surgery, and it was kind of a nice change to know I was getting all my calories without having to eat!


Thanks for the article - I'll have a look at it. I didn't think gastroparesis was connected with Crohn's - I think I just thought it was coincidence I had both. It does complicate things having multiple digestive issues.

I hope your daughter's doing ok. Have you or your doctors any treatment plan in mind? You might also want to check the side effects of any meds she's taking for Crohn's or for other conditions. I know when I was on prednisone it made the reflux and heartburn worse (I thought if it caused hunger and weight gain it would be a plus, but prednisone didn't seem to give me those particular side effects). Also some pain killers can make things worse - Aspirin and Ibuprofen can irritate the stomach (and can be bad in both Crohn's and gastroparesis) and opiates like codeine can slow digestion down, though, again, codeine doesn't seem to cause that particular side effect for me. It can take a little trial and error to work out the factors influencing different symptoms.
 
Hi! I'm glad that this thread was started. I was diagnosed with Crohn's in April 2013 and, as I expected, at my last GI appointment in November my doctor agreed that I have slow motility/Crohn's-induced gastroparesis. I did not have the gastric emptying study. My doc is hoping that if we can ever get my Crohn's under control, the rest will settle down also. I am really struggling, though, because the Crohn's is in my stomach and duodenum and has been very difficult to treat. I am currently on Humira biweekly and also Azathioprine, but I know that I am going to have to go to Humira weekly because I inject Humira every other Tuesday and start flaring again that Saturday, so I am in agony for a week and a half between shots. I also take Xifaxan in cycles (on it for a week, then off it for a week--during the off week I take VSL#3 probiotic) for recurrent small intestinal bacterial overgrowth, and according to my GI this antibiotic may help with the motility issue too.

As far as managing symptoms, I too eat small portions. I eat extremely slowly and chew everything as much as possible before swallowing, and I eat mostly low residue. For the past two years I have not been able to really eat much at all, and my diet has become increasingly restricted. I am now only able to eat oatmeal, Nature Valley soft peanut butter oatmeal bars, toast, and white rice. I can't tolerate Ensure and am also lactose intolerant and have irritable bowel syndrome. My GI is making me wait until March to start weekly Humira shots, but if that doesn't enable me to expand my diet, I am going to inquire about IV nutrition or (*cringe*) an NG tube. I am 20 lbs. underweight and suffer effects of malnutrition, and I hate to think what this is doing to my body over time. :ybatty:

Wishing you both good health and few symptoms! :smile:
 
UnXmas said:
I also have severe reflux and heartburn which no meds seem to help with. I don't get any nausea or vomiting though, which I'm glad about.
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I have bile reflux with nausea, no vomiting. Not sure I would consider mine severe, but I definitely know it's there. I recently began taking OTC Omeprazole every day. It seems to help, although I still have some symptoms.
 
Stardust_Fiddle said:
As far as managing symptoms, I too eat small portions. I eat extremely slowly and chew everything as much as possible before swallowing, and I eat mostly low residue. For the past two years I have not been able to really eat much at all, and my diet has become increasingly restricted. I am now only able to eat oatmeal, Nature Valley soft peanut butter oatmeal bars, toast, and white rice. I can't tolerate Ensure and am also lactose intolerant and have irritable bowel syndrome. My GI is making me wait until March to start weekly Humira shots, but if that doesn't enable me to expand my diet, I am going to inquire about IV nutrition or (*cringe*) an NG tube. I am 20 lbs. underweight and suffer effects of malnutrition, and I hate to think what this is doing to my body over time. :ybatty:

Wishing you both good health and few symptoms! :smile:
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How do you survive on that diet?! I am very underweight - my bmi is about 11 or 12 currently. I also eat low fibre/low residue - especially since I recently got an ileostomy. I can't stand stodgy foods that are filling, though I can eat them in small quantities. Simple sugars are easiest for me I think - I eat a lot of low fibre cereal, white bread with butter/peanut butter, a lot of puddings, yoghurts, ice cream (semi liquid so goes through the stomach easier).
 
Hi unxmas and stardust,
So glad you both responded. Caitlyn started feeling sick again in September. She was officially in Crohn's remission by colonoscopy and labs in November 2012. After ten months on Low Dose Naltrexone. It was a life saver. She always flares in September so we thought this was just her normal fall flare we did a course of entocort and usually that helps but this time it did nothing. She was having severe constipation, nausea, and abdominal pain. We ended up taking her to the hospital in October. She had an MRE, fecal calprotectin, endoscopy, and labs. All were normal. The doctor decided to do a gastric emptying scans and it was abnormal. They put her on Erythromycin. We kind of got the feeling though that the doctor was not that familiar with the whole motility thing so we decided to take her to Philadelphia for a second opinion. She had another scan done there and again it was abnormal. So now we are going to go back and meet with the GI doctor down here next week. The people in Philadelphia who specialize in motility will consult with him. Meanwhile she is really struggling. She has lost ten pounds and constantly doesn't feel well. She is nauseas all the time and gets pain after eating. She also constantly feels like she has to go but doesn't go so ends up in the toilet constantly. :(
 
UnXmas said:
How do you survive on that diet?! I am very underweight - my bmi is about 11 or 12 currently. I also eat low fibre/low residue - especially since I recently got an ileostomy. I can't stand stodgy foods that are filling, though I can eat them in small quantities. Simple sugars are easiest for me I think - I eat a lot of low fibre cereal, white bread with butter/peanut butter, a lot of puddings, yoghurts, ice cream (semi liquid so goes through the stomach easier).
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I often wonder the same thing! Surprisingly my vitals are good. I am petite to begin with, at only 5 feet tall, and my BMI is about 17 currently. When I eat anything else, and once or twice a week even eating the foods I listed, I get a horrible brick feeling in my stomach (like the food is just sitting there and rotting) and severe bloating that remains for about two days, then ends in diarrhea (sorry, TMI). It's agonizing and has been going on for a year. No obstructions, so I blame it on motility issues.
 
kimmidwife said:
Hi unxmas and stardust,
So glad you both responded. Caitlyn started feeling sick again in September. She was officially in Crohn's remission by colonoscopy and labs in November 2012. After ten months on Low Dose Naltrexone. It was a life saver. She always flares in September so we thought this was just her normal fall flare we did a course of entocort and usually that helps but this time it did nothing. She was having severe constipation, nausea, and abdominal pain. We ended up taking her to the hospital in October. She had an MRE, fecal calprotectin, endoscopy, and labs. All were normal. The doctor decided to do a gastric emptying scans and it was abnormal. They put her on Erythromycin. We kind of got the feeling though that the doctor was not that familiar with the whole motility thing so we decided to take her to Philadelphia for a second opinion. She had another scan done there and again it was abnormal. So now we are going to go back and meet with the GI doctor down here next week. The people in Philadelphia who specialize in motility will consult with him. Meanwhile she is really struggling. She has lost ten pounds and constantly doesn't feel well. She is nauseas all the time and gets pain after eating. She also constantly feels like she has to go but doesn't go so ends up in the toilet constantly. :(
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I hope that the specialists in Philadelphia are more helpful and that they can get a good action plan going for your daughter. I'm so sorry to hear that she feels so poorly. I can sympathize. It's dreadful to feel sick and be in pain all the time. :(
 
Is Children's Hospital of Philiadelphia known as CHOP? If so, that's were my son had his motility study years ago. Your doc may have been correct in trying erythemycine at a low dose. That is one of the Rx used for delayed gastric empting. My son eventually used the generic of Reglan. If your daughter uses generic Reglan, be careful. Generic Reglan has caused depression in some pediatric patients. It did for my son and still does and he is now a young adult.

If you are using liquid drinks for nutrition, be aware that during a growth spurt, your daughter may need more than usual. My son would loose weight during a growth spurt and the veins in his face stood out. Once I realized why my son was loosing weight and his veins standing out on his face, I said something to the pediatrician. We increased his caloric intake and from that point on, it was easier to get him through each growth spurt.

If your daughter is having any kind of inflammation in the lower gut, it can cause issues for the upper gut. When there is inflammation, the muscles cannot contract properly so the gut doesn't work as efficiently as it would otherwise.

Keep us posted on how your daughter is doing.

Blessings,
Naturelover
 
Thanks naturelover,
We tried the erythromycin for a month but it did nothing. I will not let her take Reglan. I am going to push for domperidone. I know with domperidone you need to have an EKG approx every three months and that is fine with me. She has already had a baseline EKG. I think it is the best choice for her. I am trying to convince her to really watch her diet but being a teen it is not easy to convince her. I will keep working on it.
 
When she feels bad enough, she'll watch what she eats. :ybatty: Those stubborn teenagers. They have to find out for themselves that it'd be much easier for them if they listened to experience. Ha, ha! :yrolleyes:
 
kimmidwife said:
She was having severe constipation, nausea, and abdominal pain. (
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Constipation can be difficult to treat, as some laxatives are harsh and can cause a lot of stomach pain. I found that stool softeners can sometimes be enough. They draw more water into the stool making it easier to pass, but most don't actually stimulate bowel contractions like laxatives can do.


When I eat anything else, and once or twice a week even eating the foods I listed, I get a horrible brick feeling in my stomach (like the food is just sitting there and rotting) and severe bloating that remains for about two days, then ends in diarrhea (sorry, TMI).
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This describes so well some of the feelings I get too. Now that I have an ileostomy, I obviously don't have constipation but I do still get the feeling that my bowel is just getting more and more full until finally the stoma starts working. One thing I've found that helped a little both pre and post-ileostomy is drinking fizzy drinks - I drink diet coke. The bubbles help move things through. People with ileostomies are often advised to avoid fizzy drinks because of the gas they cause, but I've found it to actually be beneficial - and when I told my surgeon he said I was not the only one to have found this to be true!

I have an appointment booked with a doctor in the new year to discuss my stomach emptying problems and inability to gain weight. I'm not expecting miracles, but will let you all know if I find anything useful. My doctor has said the first step will be finding the right specialist to send me to. I don't think it's worth me seeing a regular gastroenterologist, as I've seen so many already and they've always been unhelpful. Nor am I going to see a dietician as I'm already doing all I can with diet - balancing avoiding the foods which make me worse with eating the foods that are high calorie with a diet that is balanced, which I can live with and which includes foods that I like.

Any ideas which type of doctor would best deal with this problem? My colorectal surgeon has been wonderful, and has tried more things than just surgery with me too. Maybe a gastro surgeon could help with the upper digestive system?
 
You definitely want to see a motility specialist. I heard the best one is in Ohio. I will find out his name again. I will tell my daughter about the fizzy drinks and stool softener.
 
This describes so well some of the feelings I get too. Now that I have an ileostomy, I obviously don't have constipation but I do still get the feeling that my bowel is just getting more and more full until finally the stoma starts working. One thing I've found that helped a little both pre and post-ileostomy is drinking fizzy drinks - I drink diet coke. The bubbles help move things through. People with ileostomies are often advised to avoid fizzy drinks because of the gas they cause, but I've found it to actually be beneficial - and when I told my surgeon he said I was not the only one to have found this to be true!
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Interesting. I used to drink carbonated drinks, but quit in September because I was concerned about the bloating and thought it might be contributing to the diarrhea. Maybe I should try again sometime and see what happens.

I agree that a motility specialist would be your best bet. One of my friends has idiopathic gastroparesis and she goes to a motility specialist and clinic in Pittsburgh, Pennsylvania. If you're interested, I can ask her about the name of the place and the doctor/doctors.
 
kimmidwife said:
I am trying to convince her to really watch her diet but being a teen it is not easy to convince her. I will keep working on it.
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It's hard having a restrictive diet, especially being a teenager. You just want to eat what your friends do and not be different. I was lactose free at various times during my school years, and strictly gluten free in college, which was really tough. Thankfully I can eat gluten again now.
 
kimmidwife said:
I agree going gluten free is really hard.I wanted Caitlyn to try it but she won't do it.
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It is hard, but nowadays there are so many more options both in stores and in restaurants--much more so than when I was on that diet several years ago. Just about anything can be made gluten free now, although it is still hard to have to do it. I hope that your daughter is able to find food that works for her!
 
kimmidwife said:
You definitely want to see a motility specialist. I heard the best one is in Ohio. I will find out his name again. I will tell my daughter about the fizzy drinks and stool softener.
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I'm in the UK. I used to have to go to London to see specialists, but even that seems like way too much effort these days (for too little in the way of results) so I stick to local doctors these days. I'm not sure motility would count as a distinct medical category, so I guess I'd be looking for a gastroenterologist who specialises in motility disorders. Which is kind of disappointing because I really don't want to see another gastroenterologist - I've seen so many unsuccessfully already.

I agree going gluten free is really hard.I wanted Caitlyn to try it but she won't do it.
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This isn't necessarily a bad thing. I tried going gluten and lactose free (along with various other diets) in my teens, and it had no physical benefits whatsoever and really interfered with my social life and my mental attitude towards food. Everything I read, every nutritionist I spoke to, got me convinced more and more foods were harming me and made me scared of eating. If I could repeat that stage again, I'd have stuck with getting a lactose intolerance test and the tests for coeliac done. At most try giving up a food type for two weeks. If there aren't clear and consistent improvements, don't continue a restrictive diet.
 
Right now I have decided to just try and encourage her to eat foods that are liquidey. Everything she eats makes her not feel good. I really hope the doctor has something positive to say tomorrow. I am not very hopeful. :(
 
Liquids and semi-liquid food will definitely help. Food supplements like Ensure are good - they go down easily and provide all the nutrients you need, which saves you having to fill up on low-calorie, hard-to-digest vegetables.

I hope her appointment goes well. :ghug:
 
We met with the doctor today. They will do a colonoscopy on Thursday to confirm the Crohn's remains in remission. He is not willing to do domperidone. I am not willing to let her try Reglan. She has already failed the erythromycin. So we are kind of at an impasse. I am not sure what we are going to do. Meanwhile he wants her to start carafate and Prilosec.
 
kimmidwife said:
We met with the doctor today. They will do a colonoscopy on Thursday to confirm the Crohn's remains in remission. He is not willing to do domperidone. I am not willing to let her try Reglan. She has already failed the erythromycin. So we are kind of at an impasse. I am not sure what we are going to do. Meanwhile he wants her to start carafate and Prilosec.
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Has she had an upper endoscopy? Gastroparesis can lead to inflammation in the stomach and oesophagus from bile reflux so you might want to check for that.

What's the problem with domperidone? When I was prescribed I was told it was very safe. The only side effect I got was raised prolactin levels, which can be a risk long term, but not a big one. I don't blame you about the Reglan though. No doctor's ever recommended that to me but I've read about it and it seems a risky drug to take.
 
UnXmas said:
Has she had an upper endoscopy? Gastroparesis can lead to inflammation in the stomach and oesophagus from bile reflux so you might want to check for that.
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I was wondering if that was why I had bile reflux! I assumed it was due to Crohn's, but maybe it's a combination of things, with the Crohn's causing the gastroparesis and the gastroparesis leading to bile reflux. I know that everyone is different, but do you think that once the Crohn's is under control, the gastroparesis and other issues resolve or settle down? That's what I'm praying for!
 
Stardust,
It depends on if the crohns is causing your gastroparesis or not. if yes then hopefully once in remission it will settle down. Caitlyns did not start until she was in remission.
Unxmas,
she had and endoscopy about six weeks ago. at that time they did not do a colonoscopy because her MRE was normal but now they decided to double check.

This is about reglan and tardive dyskinesia. I read a bunch of studies a few even quoted a risk of up to 20%
http://www.tardivedyskinesia.com

Domperidone under current review:

http://www.ema.europa.eu/ema/index....ferral_prac_000021.jsp&mid=WC0b01ac05805c516f

Bottom line discuss with your doctor if you are taking domperidone and ask if you can get a baseline EKG done.
 
Thanks for the articles. It's been some years since I took domperidone - I came off it because it stopped working. I never knew about these risks.
 
No problem.Caitlyn had her scope today.looked perfect from the naked eye.now e have to wait for the biopsies.doctor thinks her symptoms are from the GP. He is going to look into the protocol for domperidone prescribing. We discussed the different treatment options.he is going to try to get a hold off the people we see in Philly and talk with them.
 
I have gastroparesis also. For me, taking an enzyme with meals helped a lot - and to eat small portions. It hasn't really been a problem for me lately the way it was awhile back. I initially took Doctor's Best Betaine HcL with Gentian Bitters. I only needed it for a few weeks - you would have to google it, but there is a certain way to go about using it and when it starts to feel uncomfortable when you take it, it means you don't need it anymore.
I did this a few years back. Since then, and whenever I have a problem, I take Swanson papaya enzyme with chlorophyll and it seems to be enough. When it was at its worst I used to wake up in the morning and throw up almost all the food I ate the day before. I still get nausea really bad at times unfortunately... Not the throwing up. I actually should go for another gastric emptying test to see how that's doing because it's been awhile. My doctor realized this when he gave me an endoscopy after I had fasted for 12 hours and my stomach still had undigested food in it :(
 
kimmidwife said:
Thanks Nims22. I am doing some research into homeopathy currently and will let you all know what we find.
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There is no scientific evidence that homeopathy works. I tried it, and it did no good at all. I know how it feels when you're sick (or someone you love is sick) and you feel like you want to try anything, and, especially when conventional medicine isn't able to help, you start wanting to try other things, but I would really discourage you from trying homeopathy.
 
UnXmas,
We have had some really good experiences with homeopathy and herbs for other things. I have used it personally in my profession as well. I am consulting with a top expert in homeopathy. We of course will be careful but it is something I am very familiar and comfortable with. At this time for every treatment they have offered us the risks vs benefits are so mixed that I am willing to give this a try. I will keep everyone posted on our journey.
 
Just got the official radiology report with Caitlyn's motility study results. It is really bad. Very decreased. :( It is funny that she was actually feeling a little better the past few days after she did the clean out for the colonoscopy. Today is the first day she is feeling really yucky again.
 
Sorry to hear that :( I always feel good the next few days after that clean out too! Hopefully you figure something out to help. It is an awful feeling. I used to feel like I had a rock in my stomach all day until I threw everything up the next day. I also had a very hard time gaining weight as you can imagine.
 
Results Total no of patients 21, Male 06, Female 15 (M:F 2:5). Age range 23–76 years. Mean age 47.8 years. Median and mean follow-up 2 years.81% (17) of them were diabetic, others were idiopathic cases. All of them had vomiting, 60% of them had bloating and early satiety as their presenting symptoms. All had antiemetics and prokinetics, 65% had erythromycin and 20% had amitriptyline. All of them had intrapyloric Botox (200 units) using 23G, 8 mm needle. Treatment repeated when symptoms recur. 61.8% showed good response to botox, 19% showed no response. Mean duration of response was 4.2 months.72% of diabetic gastroparesis showed good response. Significant improvement in GCIS (Gastroparesis Cardinal Symptom Index) noted in diabetic group (p < 0.05).62% of diabetic gained weight and 50% insulin requirements increased post-treatment.
Conclusion This is probably the first published study with longer follow-up period from UK (mean 2 years, maximum 3.8 years). More beneficial in diabetic gastroparesis. Less effective in idiopathic group. Failures may respond to gastric pacing.
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From:

http://m.gut.bmj.com/content/60/Suppl_1/A105.2.abstract


Gut 2011;60:A105-A106 doi:10.1136/gut.2011.239301.221
Posters
Gastroduodenal
Gastroparesis and botulinum toxin


 
MLP,
It was one of the things mentioned. we will discuss all the conventional treatment options when we meet with the doctor in two weeks.
 
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Zofran is great for nausea. Maybe try to have her use a very mild digestive enzyme like the papaya one and chew a few after eating a little... See if there's any relief. They are cheap and can be found in most supermarket vitamin areas/ drug stores or vitamin stores.
 
I've taken bitters -- either Iberogast or just something like Angostura or what you can buy in a liquor store (all bitters have alcohol; very low content and you won't be using much anyway). I'm sure Swedish bitters are similar. I don't think it would hurt to try a few of these things to see if they ease her discomfort for now.
 
I'm usually happy to try anything natural to see if it helps before I take another pill. Sometimes when I feel very nauseous, the bitters or enzymes help. Sometimes they aren't enough and I need zofran.
 
I eat fresh ginger regularly in my food and make ginger tea. It can help with nausea and to settle the stomach also, but I feel like it may not be quite strong enough for the type of nausea that comes with the GP. My mother used to always make me chew fresh ginger when I was nauseous in the mornings and I would end up puking most of the time anyway.
 
My son tried Iberogast for a while. I don't think it helped him but it was certainly worth a try. He hated the taste of it and called it Gagamieister, after I told him I thought it tasted like Jagermeister. It really isn't too bad in a cup of hot water, just tastes like a herbal tea.
 
I would do some research on hypochlorhydria and gastroparesis. It may not be the issue here, but it is worth exploring. I feel like supplementing with the Betaine HcL helped me and very quickly when I was at my worst with it.

I'm not doing fantastic now -- which is probably more Crohn's related, but the feelings of constant pain and heaviness in my upper stomach and constantly throwing up food I had eaten many hours before or even the day before are gone.
 
Nims22
Sorry to hear you are not doing well. This is so difficult. I am really worried that Caitlyn's normal GI doctor down here is not going to be of much help. I spoke with chop they will not take her on as a regular patient because we live more than two hours away even if we are willing to fly back and forth. I have been calling all over to try to find another motility specialist and there is no one nearby. There is a small group up in Orlando but I only found one review on them and it wasn't a good one. I am at my wits end here. Her doctor here won't even test for SIBO because they say they don't have the equipment for it. :(
 
I'm sorry to hear you're having such a hard time with that. I hope you find someone good. I live in NYC and it still took multiple careless, clueless doctors and years of being sick before I was diagnosed with crohns. I don't have the greatest insurance though... Guess that complicated things.
 
Kim, Mayo was willing to take Grace as a patient. There over 13 hrs away from us.
Maybe an option???
 
kimmidwife said:
Nims22
Sorry to hear you are not doing well. This is so difficult. I am really worried that Caitlyn's normal GI doctor down here is not going to be of much help. I spoke with chop they will not take her on as a regular patient because we live more than two hours away even if we are willing to fly back and forth. I have been calling all over to try to find another motility specialist and there is no one nearby. There is a small group up in Orlando but I only found one review on them and it wasn't a good one. I am at my wits end here. Her doctor here won't even test for SIBO because they say they don't have the equipment for it. :(
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Have you looked at John's Hopkin's Children's Center? Dr. Oliva Hempker is the head of the Pediatric GI. She's great. She saw my son as an infant and followed him for a number of years. At that time she was a resident. My daughter has now seen Dr. Oliva Hemker. There is a Believe in Tomorrw house that you can stay in or the Ronald McDonald house. You just have to co-ordinate housing with the child life specialist.

http://www.hopkinschildrens.org/pediatricGI/

http://www.hopkinschildrens.org/Maria-Oliva-Hemker-MD.aspx
 
FW,
We thought about Mayo and now I wish we had gone there instead of Philadelphia but mayo is not on our insurance. If we end up going somewhere else I think it will be OHio. The top guy for gastroparesis is there. A number of people recommended him including the people in Philadelphia
 
Today's visit was so so.he really thinks that this will pass and is temporary.Glad he is being positive although I don't agree with him.
Anyway he wants to try erythromycin again and add periactin
 
Just wanted to share something with you -- I'm having a bad flare since Wednesday and a friend of mine brought me a bottle of stuff called DigestZen... I took a drop in water and rubbed some on my stomach and it really helped with nausea and cramping. I think it's pretty mild, especially for a child because just doing it externally feels good and the smell is pleasant. Maybe something you want to look into?
 
Thanks Nims22,
I will look into it. I also wanted to know if anyone has tried domperidone and what their response was to it? How long until you saw an effect?
 
kimmidwife said:
Thanks Nims22,
I will look into it. I also wanted to know if anyone has tried domperidone and what their response was to it? How long until you saw an effect?
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I was on it, it seemed to help a little at first, but soon stopped doing anything much at all. I think it's effects are supposed to be felt pretty quickly (possibly immediately, but it's some years since I was on it, so I may have misremembered).
 
Thanks for getting back to me Unxmas. Nothing seems to be helping Caitlyn and she seems to be getting worse. Her nausea is getting more and more severe and now she keeps feeling like she is going to vomit as soon as she eats anything. She has vomited a little bit. She also continues to have pain when she eats. She eats about two bites before getting severely ill. :(
 
Couldn't find the digest zen but got some other digestive enzymes that the woman at whole foods said is the best. She will try it tonight with dinner. Will let you know how it goes.
 
Thanks! We are going to look into going to Ohio to the pediatric motility clinic there and see what they can offer.
 
kimmidwife said:
Still no improvement. :(
Has anyone tried a gastric pacemaker?
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I've heard of this, I really want to try it! I just haven't found the right doctor or surgeon to discuss this with yet, and have been a bit overwhelmed dealing with surgeries at the other end of my digestive tract (I have a new permanent ileostomy). From what I've read, a gastric pacemaker has sounded like one thing that I feel could really help me.

I'd be really interested to know if you discover anymore about this!
 
kimmidwife said:
Quick question, do any of you experience facial flushing after eating?
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I do sometimes get hot flushes after or during eating. I don't go red - I've never blushed much in any circumstances - but I definitely feel my temperature goes up. I've thought it may be due to taking amitriptyline, as it's listed as a side effect of that, but I do find I get warmer from eating than from any other activity.

I also get absolutely exhausted after eating. When I'm actually in the middle of eating it wakes me up a bit and I feel like I get more energy, then as soon as I finish I get desperately tired. In fact I took to eating last thing at night because it was so guaranteed to send me off to sleep, and I almost always need at least one nap a day, either directly after breakfast or after lunch. This generally isn't recommended with gastroparesis, especially if you have reflux, because lying down allows food to come up easier, but I get so desperately tired it's unavoidable, and I seem to get reflux even when I'm upright anyway. I know it's fairly common among healthy people to sometimes feel like napping after a big meal - the classic example being falling asleep after Christmas dinner or after a Sunday roast (apparently turkey has some sleep-inducing properties) - but for me it's like the energy required for digestion is just enormous.
 
UnXmas said:
I do sometimes get hot flushes after or during eating. I don't go red - I've never blushed much in any circumstances - but I definitely feel my temperature goes up. I've thought it may be due to taking amitriptyline, as it's listed as a side effect of that, but I do find I get warmer from eating than from any other activity.

I also get absolutely exhausted after eating. When I'm actually in the middle of eating it wakes me up a bit and I feel like I get more energy, then as soon as I finish I get desperately tired. In fact I took to eating last thing at night because it was so guaranteed to send me off to sleep, and I almost always need at least one nap a day, either directly after breakfast or after lunch. This generally isn't recommended with gastroparesis, especially if you have reflux, because lying down allows food to come up easier, but I get so desperately tired it's unavoidable, and I seem to get reflux even when I'm upright anyway. I know it's fairly common among healthy people to sometimes feel like napping after a big meal - the classic example being falling asleep after Christmas dinner or after a Sunday roast (apparently turkey has some sleep-inducing properties) - but for me it's like the energy required for digestion is just enormous.
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I'm much the same. Eating tends to raise my body temperature, and it makes me so exhausted. That, combined with the pain after eating, makes me nap or at least try to do so. I sometimes get a jolt of energy mid-way through a "meal" too, but afterward I feel absolutely drained. I figure that my body is using all its energy to try to digest what I've eaten, and since the digestive process is so messed up with my body, it expends even more energy.
 
Stardust_Fiddle said:
I'm much the same. Eating tends to raise my body temperature, and it makes me so exhausted. That, combined with the pain after eating, makes me nap or at least try to do so. I sometimes get a jolt of energy mid-way through a "meal" too, but afterward I feel absolutely drained. I figure that my body is using all its energy to try to digest what I've eaten, and since the digestive process is so messed up with my body, it expends even more energy.
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Exactly! I've never found anyone else who understands what it's like for eating to be the most exhausting activity!

Doing exercise (which I barely can do - "exercise" for me is pottering round the garden or farm with my dog) and getting out and going places often wakes me up - I'll dread going because I'm so tired, but once I get going, I usually wake up. But eating! I wake up and warm up as I'm eating and then completely crash.

I don't tend to get headaches though.
 
After realizing that Caitlyn turns red while eating I started making a list of all the symptoms she is currently having:
Facial flushing
Headaches
Shortness of breath
Dizziness
Bradycardia (slow heartbeat)
Nausea
Abdominal pain
Decreased GI motility (gastroparesis)
Joint pain
Back pain
I have come up with the following question, is there something deeper going on here?
The two possibilities I have found are Dysautonomia or Mast Cell disorders.
Has anyone else looked into this? If yes do you have any suggestions where to go for further diagnostic testing.
 
At one point before I was diagnosed with Crohns, I thought I might have a Mast cell disorder because many of my symptoms matched up but my doctors were very dismissive about it. Said it is rare and I didn't know what I was talking about.
 
Nims22,
That is terrible. If you have symptoms of it you should be checked out. I have been reading that it is actually on the rise and being seen more often.
 
I had my endoscopy/colonoscopy this morning, and unless something comes up with the biopsies (will know next week), my Crohn's is endoscopically in remission. I'm happy, but am still dealing with symptoms, which my Crohn's doc believes is related to gastroparesis/motility issues, so the ball is my motility specialist's court. I have an appt. with him on September 4 and am hoping for more treatment options that don't include a feeding tube. I did the colonoscopy prep two days before due to my delayed emptying, and with the food out of my system, that's the best I've felt in over a year! Too bad I had to start eating again today. :duh:
 
Caitlyn's appt went well. I highly, highly,
Recommend Nationwide Children's GI and motility team. They were fantastic. I just got off the phone with our doctor back home. She reviewed all the findings and we are going to work through a two step approach. 1. Get the pain under control, 2. Try to improve her motility. Caitlyn has a lot of pain. They think she has abnormal gut enervation. The doctor is going to start her on Neurontin for the pain.
 
I've been scheduled for a gastric emptying study. Apparently it involves eating eggs and toast. I'll be interested to know the results, since I'm generally one of those people who has all sorts of symptoms but normal test results.
 
Stardust_Fiddle said:
I had my endoscopy/colonoscopy this morning, and unless something comes up with the biopsies (will know next week), my Crohn's is endoscopically in remission. I'm happy, but am still dealing with symptoms, which my Crohn's doc believes is related to gastroparesis/motility issues, so the ball is my motility specialist's court. I have an appt. with him on September 4 and am hoping for more treatment options that don't include a feeding tube. I did the colonoscopy prep two days before due to my delayed emptying, and with the food out of my system, that's the best I've felt in over a year! Too bad I had to start eating again today. :duh:
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I'm glad to hear you're in remission, though I know what it's like when you have symptoms of a severity that doesn't correlate with objective test results. I hope your doctors will still try and be helpful with managing your symptoms despite the remission.

I also recognise the feeling of being better when there's nothing in your system! Following a day of fasting and a laxative prep my stomach is usually a lot more comfortable. I've been wondering lately how much my fullness is actually to do with the amount of food I've just eaten. I've noticed that the times when I feel most full and feel like I just don't want to force any more food down, are just before my stoma starts working. So I'll feel very full for maybe a couple of hours, then my stoma bag fills up and I feel much better - not hungry, but not so stuffed. So at least some of the full feelings are coming from my intestine rather than stomach. But either way, a system empty of food is much more comfortable!
 
UnXmas said:
I'm glad to hear you're in remission, though I know what it's like when you have symptoms of a severity that doesn't correlate with objective test results. I hope your doctors will still try and be helpful with managing your symptoms despite the remission.

I also recognise the feeling of being better when there's nothing in your system! Following a day of fasting and a laxative prep my stomach is usually a lot more comfortable. I've been wondering lately how much my fullness is actually to do with the amount of food I've just eaten. I've noticed that the times when I feel most full and feel like I just don't want to force any more food down, are just before my stoma starts working. So I'll feel very full for maybe a couple of hours, then my stoma bag fills up and I feel much better - not hungry, but not so stuffed. So at least some of the full feelings are coming from my intestine rather than stomach. But either way, a system empty of food is much more comfortable!
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I hope that your GES goes well and that you get some definitive answers! I'm very familiar with having normal test results, unfortunately; that's the story of my medical life! I suspect that I have dysmotility in my intestines as well as my stomach. I feel the same way as you're describing when my bowels move; that's what most often somewhat relieves my symptoms. I actually get a large ball-like bulge to the left of and slightly below my navel area in addition to the distension of my abdomen after eating, which goes away once my body has eliminated what I've eaten.
 

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