gastroparesis doc

[mcconnaughy]

A relative has been diagnosed with severe gastroparesis (also-type II diabetes, heart disease and kidney transplant)--she has not been able to get relief from medication.  She is not a canidate for the stomach "pacemaker due to infection concerns. This week she had botox injected into her stomach muscle to assist in stomach empyting but it is too early to see if this was sucessful. Can anyone suggest any specialists or current medical study programs that may be of help?????

[Annie62]

I'm sorry about your relative.  I have severe GP too (nondiabetic).  I am assuming she has tried domperidone (to be gotten overseas-Canada, etc.)?  

Please post back, if you don't mind, what effect the botox has on her GP.  I would be very interested to hear this, as I have only met a couple people on these boards with severe GP and both times they disappared after initially posting, so I never am able to ask questions/learn from someone else with it.  

There is a study going on at Mayo-Jacksonville (on a new drug)--don't know what it is called, that you might want to check into, but I think you need to be there (or make trips there) in order to participate--but I'm not positive about this, so you/your relative could contact them about it if interested.  I assume some people get placebo, some the real thing, and I know it involves blood work and gastric emptying scan to track progress.  

[mcconnaughy]

It has been 5 days since the Botox treatment was done and on day 4 she had miraculous relief---AMEN---she is hopefully coming home from the hospital in less than 24 hours!!!! We are so thankfulthat the proceuder brought relief even if it may be short term (just like when Botox is used for cosmetic reason--the results are temporary and vary w/ all patients)  She has not yet tried Domperidone which we hope to try soon---her current GI doc seem "mystyfied-spooked" about delaing w/ Canadian Rx issues-fortunately my step-mom will soon visit her endocrinologist who is familiar w/ trhe use of Domperidone w/ other patients.

[sunny12]

How is the botox treatment going I know it' s only been a few days.  On 8/10 I developped this terrible illness(gastroparesis).  Cause-? to be determined I had my GB out in June-fine for 3 weeks and now this-I'm so frustrated.  Any one know how the GB (no stones) taken out could cause this.  I'm not diabetic.  Does anyone think it could be related to sphincter of oddi.  I had elevated pancreatic enzymes before gallbladder surgery and  a couple times since the GB surgery but return to normal.  Thanks. I'm on Reglan now and it doesn't work. I'm not really naseauted nor do I vomit.   I mostly am unable to eat and have lost 20 LBS since mid July.   My symptoms are extreme bloating where the food (minimal) even liquids just sit there.

[sunny12]

How did your GP develop?  Any clues?  This is such a frustrating thing-have you inquired about the pacemaker?

[Annie62]

I'm glad she is getting some relief with the botox injections.  I hope it continues for her.  I'm not aware if it is something that can be indefinitely repeated after it wears off-I'll have to read more on that.

Regarding the domperidone, my gastroenterologist wrote me an Rx for it and I did what I wanted with it, which was to research Canadian pharmacies and then pick the one with the best price for the amount I get.  I think my gastroent. also is "nervous" about my having done this, as he mentioned last time about going through the local compounding pharmacy, but I cannot afford that as they charge about four times the amount, so I continue to get it from Canada where it's much cheaper.  I don't know why it hasn't been passed by the FDA in this country--probably something political and regarding profits/money, as that is usually the case.  I don't know what the concern would be health-wise.  It has far fewer side effects than Reglan and people have been using it for years in other countries.  The first time I went to the Canadian website, I just filled out their online form with all my info and sent it to them and then called their 800 number to see if I was supposed to mail them through the post the actual Rx, which I did.  The first time was a little complicated and time-consuming, but now all I have to do is call the 800 # for the refill each time.  Your relative might want to ask her gastro to write her a Rx for it so she can try it.  I think I read that it was supposed to be considered a good choice for people with diabetic gastroparesis in particular (not sure why).  Good luck--hope the botox keeps working for her.

[Annie62]

I'm sorry you just developed gastroparesis.  Since you have only had it for a few weeks, do your doctors think it is going to go away or that it might become a permanent condition?  I guess they probably don't know yet and time will tell, especially if they don't even know the cause of it.  Has anyone said that it might be from the gall bladder removal?  Even if they think it is, it's unlikely they would tell you that, so it might be something you would want to read up on.  I know there can be a link between the gall bladder and gastroparesis, but not sure exactly what it is.  Did you have a gastric emptying scan done or were you told you have GP solely based on your symptoms?  

No, I have not checked into the pacemaker (have read about it some).  As long as I do not vomit from my GP I don't think the pacemaker would be a consideration, although I am not positive about that.  I am grateful for that much--that I can keep my food down unlike a lot of people with severe GP.  

So you don't vomit, either, and have no or little nausea.  That is interesting.  From everything I have read, it sounds like most people with severe GP (don't know if yours is severe or not) have significant nausea and many vomit and thus lose weight.  Unfortunately, my discomfort after eating/bloating and even trouble breathing has never (or rarely) prevented me from eating (it sounds like you don't eat to minimize symptoms), so I have lost no weight from mine.  I have chronic stomach and chest discomfort whether I eat or not (partly due to chronic gastritis/esophagitis) and have some pain every single day.  I think I would have to go a long time without eating for my bloating and symptoms to go away, as even in the a.m. after not eating for 14 hours, I still have symptoms.  I have occasional nausea from it, usually in the morning and about 2 hours after eating breakfast, and I have had dry heaves, but I have only had a handful of times in the past that I have had severe nausea (never knew what it was from, but now think it was due to my as yet undiagnosed GP) and I have had dry heaves.  

Regarding how my GP started, it was after a really bad GI infection that I had 8 1/2 years ago.  I also have other autonomic dysfunction but still don't have a dx, so don't know what's causing it all.  If you have read up on GP then you know the causes can be many.  

I'm sorry the Reglan isn't helping.  Is your doctor going to try you on anything else--erythromycin or has he mentioned domperidone?  You might want to ask him about it.  I think it helps me some (although I am not sure any more).  Hopefully your GP will resolve on its own.  That can happen-- depending on the cause.  

[sunny12]

Yes, I think it's from the GB-had gastric emptying test after a EGD showed some signs of food in the stomach.  If it's from the gallbladder removal which was completed based on hida showing 11% Ejection fraction.  I can't eat because I'm in so much misery from food.  I've not tried Domperidone because I guess because it's not approved here in the US.  I have an apt., with new GI tomorrow.  I can't really find anything on gallbladder directly related to Gastroparesis-if that's it do you think it will go away?  I'm sorry for you symptoms and will pray for you Annie I can't imagine people living years with this and I've only had it for a few weeks.   REglan is terrible I'm taking it but it makes me anxious and nervous.  If my stomach didn't hurt from eating I wouldn't care that it bloats.  AS for the pacemaker I read about a woman (type in Patricia Sexton Edwards ) who didn't reallly have naseau or vomiting who got one and it must have worked.

[Annie62]

Hi Sunny, I'm sorry you are feeling so miserable!  I hope your new gastroenterologist will answer all your questions at your appnt. tomorrow.  I tried to find some articles on the connection between gastroparesis and cholecystectomy but mostly found some vague stuff.  It does sound to me, though, that you can get GP as a result of a cholecystectomy.  Whether it is chronic or short-lived I don't know.  You might want to search the MedHelp forum--there were some people on there who developed GP after cholecystectomy as well.  I did read one article from Johns Hopkins that said 8% of people with GP developed it after cholecystectomy, but it didn't say whether they thought there was a link (I would imagine there is, though--that's a pretty high number).  I don't know anything about the sphincter of oddi and the pancreas; did your doctors tell you that your elevated pancreatic enzymes had to do with a post-chole syndrome or that, the opposite, your enzymes returned to normal due to the gall bladder being removed, or what?   I would ask your new doctor all this.  Hopefully, there is still hope that your GP will resolve, as you haven't had it that long yet.  I know that sometimes damage to the vagus nerve can occcur after gastric surgery and thus cause gastroparesis, but I don't know if that would be an issue in a cholecystectomy with the gall bladder being removed.  I read that sometimes post-surgery syndromes resolve and hopefuly yours does too.  

I've never been on Reglan and don't want to be.  I was on Zelnorm with the domperidone but they took it off the market recently.  I'm sorry it's not helping you and that you have bad side effects from it  Maybe this new doctor will write you a script for domperidone and you can try that and it will help.  If you have any questions about how to get it, I can tell you how to go about it.  

Also, I am sorry you have lost so much weight due to food causing you to bloat so much and be in so much pain/discomfort.  I know this can be a real problem with GP.  When I said that I, unfortunately, haven't lost any weight in spite of food causing me pain, bloating and discomfort, I only said that because I need to lose weight (in the last year I have gained 30 pounds in spite of my GP!).  I didn't mean to imply that it was fortunate that you have lost weight due to your symptoms (when I went back and re-read what I wrote it kind of sounded that way (:  I seem to have symptoms even when I go a long time w/o eating, so I am not sure that not eating would make a difference in my case.  However, I definitely cause my bloating and pressure-feeling of my stomach going into my chest to be worse when I overeat, and need to lose the weight I have gained in the last year.  

I will look up Patricia Sexton and the pacemaker w/o the vomiting.  Thanks for that info.  Let me know what your new gastro has to say about your GP, and thank you for your prayers.  I am not particularly religious, but I will say a prayer for you too.