Motility - Gasteoparesis - and Stomach Pain

[Annetta Giambruno]

Hi I am a Mom with a 11 year old that has severe gasteoparesis - and her delayed gastric emptying test (when last taken) was showing her stomach was almost non functioning - she has been able to get by with this disease and we have found that 1 medicine helps but at times nothing helps - she also has dismotility issues - Pseudo Obstruction - We have been dealing with this since she was 2 but she works thru her pain Biofeeback worked real well for her for a while .... classical music - etc -- visualization - meditation

The other thing that helps is when "she can feel it in her throat" she cuts out foods and liquids - for a rest - but that can be a double edged sword - because she seems when she is in an episode she dehydrates in hours .... she has a g tube in her stomach - a permanent Bard which helps with decompression - hydration and full flushing of her system when she gets a blockage .....

She also deals with what we call wrong signals - she can be in a full episode and she has the constant feeling of being starving - we explain it that her brain is giving her stomach the wrong signal -

WE have a great Pedi Gi in San Francisco who can only give direction and moral support because there is no cure and we are happy that she is able to live a normal life -Cheerleader - Volleyball Player - Snow Ski's goes to sleep over camp - for 2 weeks every summer ...

Many Many Years ago we went to Ohio to meet with Dr Colin Rudolph with not luck - Great Guy .... But waste of time ....

Our Dr thinks we should go to Kansas and see Dr Paul Hyman to see if he has any tricks - ANYTHING that can help her live with less pain

Any thoughts - Any comments

[Annie62]

Hi Annetta,

I'm sorry to read about your daughter.  I've never known of anyone that young to suffer from this.  Does she mostly experience pain and bloating or does she have nausea and vomiting as well?  Also, is her gastroparesis linked to another condition--diabetes, etc, or is the cause of her GP unknown?

It sounds like you are in good hands as far as her treatment.  I am curious what drug you referred to when you said a drug helped her (Reglan, domperidone or something else?).  Also, I am sure you have heard of the gastric pacemaker implant.  I don't know where or on whom this procedure is done, but it sounds like you are up on the different treatments for GP since your daughter has had this since she was a toddler.  Also, has her GP gotten worse over the years (since her first gastric emptying scan) and what do you mean by "episodes?"  Does she get significantly worse at times (do you know why?) or is it just a normal fluctuation of her syptoms (symptoms) dependant upon what and how much she eats, etc.?  My symptoms fluctuate (mainly pain and bloating, occasional nausea, severe reflux), but it mostly has to do with how much I eat.  Mine was also severe on gastric emptying scan.  I take domperidone for mine (was also on Zelnorm until they pulled if off the market).  Is the tube she has always present (can't remember what you wrote) or only something done on occasion?  I'm sorry that I don't have much to offer you as far as advice, but I would like to hear from someone else who knows about this condition (I have yet to compare notes with anyone who has severe GP on these boards).  I was just dxd 9 months ago, but have had the symptoms of it for years.  Mine is part of an autoimmune disease.  Thanks.

[micaela27]

i'm so sorry your family has had such a rough time dealing with her digestive issues.  i can't help you out with doctor recommendations, but i'm wondering... have you had her tested for food allergies and sensitivities?  i ask because i'm currently pursuing a gluten free diet in hopes that i might alleviate some of the issues with my own gastroparesis.  mine is much less severe than your daughter's is and i don't have pain, persay, but more the irritating feeling of fullness and the limitations that come with the low fat, low fiber diet.  and to top it off... i just was tested for celiac disease and my antibodies came back perfect...  no positive diagnosis.  still... at the urging of many people who have also had negative blood and biopsy results for Celiac but have had wonderful results going gluten free... i am considering it for myself.  soy and dairy can also be culprits.  it's something to think about, not that you don't think about this every day of your life already!  i hope my suggestion may help, though.  good luck!

[Annetta Giambruno]

Hi Thanks you two for the replys -
1st Annie - When I talk about her episodes she deals with pain all the time but at times the pain is so severe she can't get up out of bed on her own she has to be lifted out  - early am is bad and from mid afternoon to bedtime at times can be real bad - she then wont eat and needs to lay down ....
Her tube is a Bard perm g tube - the reason we had to switch to that is because her tubes - mic key and nutri had the internal balloons pop some as early as 3 days in - The bad thing is Gianna has severe pain in the g tube spot and always has (this is her 2nd placement) So they have to put her under and place the tube in the operating room so end of last year she had 6 placed .... and finally they put a perm one in but she loves it it only gets changed 1 x a year and it is really low profile .... so she has even taken to wearing a 2 pc bathing suit for the first time ,.... BIG THING TO HER ... The medicine she is on is cisapride .... they were going to try zelnorm a few years back but the FDA would not allow it for children no prior studies ... she also takes miralax 2 x day and over the counter GAS X I have to say that is probably one of the greatest things ever - it works overnight when she is sleeping a really helps - the distension is horrible before they placed this tube her stomach would get so big she would look 9 months pregnant and it would sound like a drum .... but the hile her g tube is in is a natural release valve so her distension is way better ,,,,
I too love to have someone to talk to about all of this -

2nd Michaela - Hello well re the food - we tried veg diet and that didnt help - we tried no dairy and that didnt help ... we even tried a chinese herbalist with concoctions ... didnt help and when she was little she was ng tube fed predigested elemental formula and believe it or not that didnt help ... It is funny because gianna could be in a bad episode and crave pickles .... thats a big one for her and she also feels like she is starving - you know something that does help is an apple .... at times when she is not feeling well and she feels like she is topped off full and apple helps her stomach I dont know if it is the acids in it or what but it may be worth a try .....
My daughter does not have any other diseases that are noted at this time to contribute to this but you mentioned autoumine ????
Can you elaboriate - the reason I say that is I have discoid lupus - my x mother in law has rhumentoid authritis (sp sorry) and Gianna may develop something because she is getting funny whitening of the elbows and knees they are keeping a watch on her - and When I was pregnant with both of my girls I have horrible motility issues the first pregnancy blamed my gall bladder and I was on a liquid diet for the last trimester - and after she was born they operated and the gall bladder was fine .... then I got pregnant with Gianna and all heck broke loose - I couldnt eat anything - I would have to go to the emergancy room to have my stomach pumped because it would not empty - I also was on an erithomeycen iv pump that I wore on a fanny pack and cisapride and I would have to go into the hospital 3-4 x a week for a full bag of hydration ... because I would dehydrate within a few hours -=
Now I have a bout here and there and I can tell when stuff is not leaving my stomach but nothing really to complain about -

[micaela27]

well lupus and rheumatoid arthritis are both autoimmune diseases and IA diseases tend to be hereditary and run in groups....  i.e. someone who has one autoimmune disease has a higher propensity to develop another autoimmune disease as a piggyback to the first one..... and has a higher chance of having a child with an AI disease too.

so...  i'd absolutely talk to your doctor about celiac and other food allergies.  i don't think a vegetarian diet would do the trick, as there's nothing particularly allergy-inducing about meats.  the dairy was a good idea, but sometimes you need to be allergen-free for up to 6 months before you notice  change.  my bet is that she may benefit from a soy- or gluten-free diet, but that's just a thought.  celiac is also an autoimmune disease and is often paired with Hashimoto's thyroditis, which is ANOTHER autoimmune condition and is what i have recently been diagnosed with (in addition to the gastroparesis, which is also associated with celiac disease).  this is why i had my gluten sensitivity tested.  but... as i have learned, the tests don't always show a sensitivity to food, and/or an intolerance in its beginning stages.  

my very best suggestion is to go to www.celiac.com and go to their forums and chat boards.  you'll see my name there under the board "pre-diagnosis, testing and results" because i'm still new to this and am asking a lot of questions myself.

best of luck and let me know if i can answer any other questions!

[Annie62]

Hi again Annetta,

It's interesting that you mentioned you also had problems with slow gastric emptying during your pregnancies.  I had never heard of that.  Have you ever had a gastric emptying scan done and do the doctors think that you also have gastroparesis (or had it during your pregnancies)?  I've never heard of this being hereditary, and I have read extensively on it, but I don't know all there is to know about it and wonder what your doctors have to say about that possibility.  

You mentioned you have discoid lupus and that your daughter's grandmother had RA--both autoimmune diseases.  I do know that sometimes gastroparesis is seen with systemic lupus-which apparently can cause some autonomic neuropathy (not sure about the discoid type).  The reason i asked about autoimmune diseases is because I was just diagnosed with something called autoimmune autonomic neuropathy, and my gastroparesis, which is also severe, is only one part of the more widespread autonomic dysfunction I have.  They do not know what is causing my autoimmune autonomic neuropathy (just as they don't know what causes a lot of autoimmune diseases), and aren't sure if it is a primary phenomenon or secondary to another autoimmune disease (MS, etc.).  I do know that gastroparesis is seen with diabetes (especially type 1), Parkinson's, amyloidosis, MS, scleroderma, systemic lupus, due to damage to the vagus nerve during gastric surgery, hypothyroidism, etc., but sometimes it apparently is idiopathic and not connected to any other condition and/or has onset after a viral or bacterial infection and just doesn't resolve.  I think my GP started after a bad bacterial intestinal infection in '99.

Has your daughter ever been tried on domperidone?  I get mine from Canada and I think it helps some, but not enough.  I have found that the biggest factor in causing my symptoms to worsen/fluctuate (pain and bloating) is how much I eat and what I eat, especially in any one sitting.  I really need to work on this--not overeating in a short period of time and cutting out hard to digest foods.   Unlike your daughter, though, my symptoms get worse as the day goes on and as my stomach fills up with food.  Bedtime is the worst time for me.  I am in pain and have a feeling like my stomach is shoved up into my chest-making it hard for me to breathe, especially when I lie down.  I'm curious, does your daughter (or did you when you had this) ever feel as though she can't breathe well due to her stomach being full, or feel as though her stomach is pushed up into her diaphragm/breathing muscles?  Also, does she have bad acid reflux problems?  

So she keeps the tube in her stomach all the time in order to flush it out in case of blockage?  Does she also receive food through the tube or does she eat regular food?  Wouldn't she need that to go directly into her small intestine and bypass the stomach since the stomach is the problem in the first place?  I thought I had read that in the past regarding tube feedings.  How did they decide to put her on the G-tube?  Was it due to unbearable pain, getting bezoars/blockage problems, or both?  Also, has she ever vomitted from her GP?  I thankfully have never vomitted from it (get mildly nauseated once in a while), but I have read that some people, especially with severe GP, throw up all the time and thus become malnourished/anorexic and have to go on liquid supplements or tube feedings, so I was curious as to why and how your daughter ended up on the G-tube, and if any of these things were the case with her.  It sounds as though she has adjusted pretty well to it though, and that is a good thing.  I assume she is otherwise healthy and hopefully she stays that way and never develops any other new problems.  Severe gastroparesis is enough for anyone to deal with, especially for a child, and especially for one that requires a G-tube.  I'm looking forward to hearing from you.  My gastroent. doesn't tell me much of anything, and most of my info I have gotten off the internet.  At the moment I have neither a PCP or a neurologist (due to circumstances I won't get into), so I have a lot of questions about GP that I haven't gotten answered, and it's good to actually hear from someone who knows about it (although I am sorry your child has this to deal with at such a young age).  Sorry for all the questions, but I don't really know anyone with this to compare notes as to what they are going through symptom-wise.  

[dustyb]

My son is 8 and also has huge issues with,  bloating, problems with gut dysmotility, nausea and pain and reflux. We are getting nowhere with finding out what is happening, other than it started when he was 6. He has been recently started on Propanalol as a trial and it does seem to have helped with the bloating. However he is rarely well at night or in the mornings, usually rallying around about 3pm in the afternoon. He is on so many medications and we are really stumped as to what to do next. They did talk about electrical pacing of the stomach in the past, but not really sure what this means.

Good luck with finding answers.

Mum to 8 year old.

[JJ0430]

My husband has been battling an unknown disease for the  past  8 yrs.  We have been from doctor to doctor and no one can figure out what is wrong w/ him.
Just recently, we found that he has a problem w/ the mobility of his intestines.  He has lost so much weight over the years and has become very malnourished.
He was recently put on a PIC line (feeding tube) to help him gain his weight and keep him nourished.  He has been through numerous tests and exploratory surgeries that have left us hopeless.  His symptoms include:  bloating, nausea, vomiting, diahrea, weight loss, dehydration, pain in the lower back.  He got to a point where he didnt want to eat and was eating maybe once a day. He has done tests which include: Upper and Lower GI, Barium tests, smart pill, ultrasounds, mri's, ct scans, blood tests and has had to re-do these tests over and over etc....Doctors have put him on Reglan, Erythomycin, All kinds of pills to try to stimulate movement of his intestines and nothing.  We went to see a new doctor which gave us hope of finding the problem. He ended up having a surgery to remove a blockage in his intestines-but the symptoms are still there.  They removed a piece of his small intestine and reconnected them.  Sending a biopsy for further testing. Tests came back w/ no signs of cancer.  Doctors have ruled out scleraderma, IBS, IBD, Ulcerative colitis, crohns disease,  Celiac disease, Chronic Psuedo-Obstruction, and has now been diagnosed w/ Visceral Myopathy.  We have been informed of a gastric pacemaker or GES-gastric electrical stimulation that may help.  If anyone can help us with a cure, doctor or can help us narrow down an answer to his problem - we are willing to travel ouside of Houston,Texas.  We just want to find answers to his situation.
Any help is much appreciated.