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12-13-2013, 04:30 PM   #1
kimmidwife
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Gastroporesis

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!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
12-14-2013, 10:28 PM   #2
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Article on Crohn's and gastroparesis

http://www.biomedcentral.com/1471-230X/7/11
12-15-2013, 06:20 AM   #3
UnXmas
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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.
12-15-2013, 08:37 AM   #4
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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.

Wishing you both good health and few symptoms!
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Conditions: gastroduodenal Crohn's disease; chronic SIBO; bile reflux; gastroparesis; intestinal dysmotility; hiatal hernia; hypogammaglobulinemia; IBS; chronic migraine; fibromyalgia; sensory processing sensitivity; Raynaud's; congenital cataracts
Current treatments: Humira biweekly, Azathioprine 50 mg once daily, Xifaxan 550 mg daily on alternating weeks, Omeprazole 20 mg, Cymbalta (for pain), VSL#3 Probiotic, Iberogast, Remeron, Zofran; permanent TPN
12-15-2013, 08:50 AM   #5
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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.
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.
12-15-2013, 08:58 AM   #6
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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.

Wishing you both good health and few symptoms!
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).
12-15-2013, 12:02 PM   #7
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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.
12-15-2013, 03:46 PM   #8
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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).
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.
12-15-2013, 03:48 PM   #9
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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.
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.
12-15-2013, 06:38 PM   #10
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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,
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12-15-2013, 11:12 PM   #11
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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.
12-16-2013, 01:36 AM   #12
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When she feels bad enough, she'll watch what she eats. 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!
12-16-2013, 06:45 AM   #13
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She was having severe constipation, nausea, and abdominal pain. (
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).
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?
12-16-2013, 09:28 AM   #14
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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.
12-16-2013, 12:33 PM   #15
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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!
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.
12-16-2013, 12:35 PM   #16
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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.
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.
12-16-2013, 01:09 PM   #17
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I agree going gluten free is really hard.I wanted Caitlyn to try it but she won't do it.
12-16-2013, 01:14 PM   #18
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I agree going gluten free is really hard.I wanted Caitlyn to try it but she won't do it.
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!
12-16-2013, 03:20 PM   #19
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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.
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.
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.
12-16-2013, 05:05 PM   #20
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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.
12-17-2013, 05:58 AM   #21
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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.
12-17-2013, 08:25 PM   #22
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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.
12-18-2013, 06:05 AM   #23
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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.
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.
12-18-2013, 11:18 AM   #24
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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.
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!
12-18-2013, 04:47 PM   #25
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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.j...01ac05805c516f

Bottom line discuss with your doctor if you are taking domperidone and ask if you can get a baseline EKG done.
12-18-2013, 04:49 PM   #26
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Article about heart risk and domperidone

http://www.mhra.gov.uk/Safetyinforma...date/CON152725
12-19-2013, 09:00 AM   #27
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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.
12-19-2013, 04:26 PM   #28
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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.
12-20-2013, 06:40 PM   #29
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Have any of you tried homeopathy or herbs?
12-20-2013, 11:02 PM   #30
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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
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