Gastroparesis help

This started in April of this year when I went to the ER with what I thought was a severe GI bug and severe head ache. ER doc said my potassium level was low and gave me an IV and sent me home.
Needless to say I did n't make it home and had a seizure on the way home and way admitted overnight at another area hospital were again they said my potassium level and now calcium level was severely low and admitted overnight and then released the next day.

This started the 4 month cycles of severe below the rib pain and passing out and each time, at the ER they would say my potassium levels were below 3-2.5 ... This went on approximately 15 times before my primary care DR would tell me, nothing is wrong, and I was OK and to go home and eat.
Finally I got scared because in a course of a week i lost 20 pounds and I was constipated for over two weeks!
He told me to take 3 days off work and take anti depressants!
Finally I got a new primary care and she got me in the same day and did all kinds of tests! EKGs CT ... etc and referred me to a GI DR.
The CT scan showed that my stomach was dilated and gastric diverison, and they asked me if I had had gastric bypass surgery?
Why would a 5 '4 woman weighing 100 pounds have that? Of course not.
Later that day they admitted me due to my blood pressure and a bowel obstruction. I spent a week in the hospital and they ran all kinds of tests ....
This GI DR came back and said I had a very aggrevated stomach lining ... but nothing else was seen on the upper endoscope and the colonscopy was OK. I must just be anorexic, and released me.
Went back to My primary care because I am still in pain and it hurts to eat, still having fainting spells and she gets me with another GI DR.
Finally see the other GI DR... and after all the series of tests it comes back with gastroparesis and positive antibodies for chron's.
I have been seeing him now for 3 months and the pain isnt better and I am now still losing about a pound a week!
He tells me the pain can't be that bad and when I tell him I haven't had a bowel movement in weeks he just tells me to increase the myralax. I tod him it takes the whole bottle while for a colon cleanse... he doesn't seem concerned.

He said that my GI issues are above his abilities and I would have to wait for a consult to Emory ... yet I need a referal and he wouldn't give it to me yet. He said we need to give meds time to work, and I might need a pacemaker.

I think he doesn't know much about this disorder and I am worried especially since I have been on Reglan for over 3 months! with Eythrymycin,and other meds.
Isnt three months enough time?

My husband is upset with me going to the ER because they really don't help out but temp. but I am tired of hurting all night :(
And my family doesn't get it and they harp on me all day about eatting....

It is so hard to do something that causes so much pain... Even liquids :(
Any help or suggestions??

By gpgirl5
Posted October 15, 2009 at 12:33 pm
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Hi Debbie. I am so sorry you are going through such a tough time. I do not have Chron's disease, but I know that it can be extremely painful. This web site may be useful. http://www.digestivedistress.com/main/page.php?page_id=1
If you go to "Treatment" at the top and click "Find a Doctor", you'll see one doctor in Georgia who specializes in gastric motility disorders. Maybe she can lead you in the right direction. Or, maybe the people at the web site can give you a lead.

By my4heathens
Posted October 15, 2009 at 12:34 pm
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debbie, how much reglan have you been on? and what else besides the erythromycin? this will determine whether three months is long enough for the meds to make any difference. you may need a stronger dosage or a different combo.

By debbie2027
Posted October 15, 2009 at 12:51 pm
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here is the lists of meds ...
he wouldnt give me anything for nausa or pain because he say it slows the gut.

Reglan 20 mg every 6 hours
Erythymcin 250 MG every 6 hours
Donnatal (MG not listed) every 6 hours
Omeprazole (generic for Prislec) 20 mg every 12 hrs
Klor Con M20 (potassium) twice a day
Amitza 24 MCG twice a day
Myrlax 17 grams every 6 hours

By gpgirl5
Posted October 15, 2009 at 1:08 pm
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You're taking Donnatal? I used to take that for IBS when I had it years ago. My understanding of it is that it 'paralyzes' your intestines. I used to not have a BM for a very long time after taking Donnatal - which could be the reason for your same problem. The Donnatal may be working against the Miralax. You might want to call your pharmacist and ask about Donnatal's effect on your intestines / BMs.

I know that Donnatal worked great for me in preventing cramping and diarrhea, so I'm not suggesting you stop taking it - but I just wanted to mention that it caused me to not have BMs until I stopped taking it & it wore off. (I wasn't on it daily - just as needed).

By my4heathens
Posted October 15, 2009 at 1:11 pm
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Given that, you should have seen something by now. And he did give you something that works for nausea, the Reglan. It does double duty in most people, helps with nausea and gets the gut going. As for pain, sometimes the Donnatal helps with that too, although that is more for cramping. I'm surprised he gave that one to you since it can actually slow the gut down sometimes.

I have been on a similar drug, Levsin (hyoscyamine), for stomach and intestinal cramping before we found out about the GP. Now I only take it once in a blue moon, when it gets REALLY, REALLY bad. Not that I took it all that often before, I didn't like how loopy I got on it.

I hope you get over the hump.

Diana

By busyteacher
Posted October 16, 2009 at 11:19 am
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If your doctor is telling you "you can't be in that much pain", he is not listening to you. Therefore, how can he treat you well. Try a different doctor, And, yes, I know they are hard to find. I went through five (?) GI's before finding this one. And it took years to find a primary care physician. Even my dentist has to take special care of my teeth because of tartar build-up from not chewing. I would suggest "interviewing" several doctors before making any changes in treatment. I actually ended up on Cymbalta, due to misdiagnosis, the worst thing for GP--and the withdrawal is worse than a bad acid trip. Be careful out there.

By debbie2027
Posted October 16, 2009 at 12:21 pm
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I have read alot of things on the net about GP .. what kinds of things should be priority in DR knowledge of GP?

I actually have an appointment at Emory University (GP clinic) in Atlanta in 2 weeks ... my primary care actually got them to move up the appointment from April to November due to my weight loss and inability to maintain potassium levels.

Right now the DR i am seeing says they believe the GP is caused by my muscle and not my nerves... Does this make a difference with treatment?

By busyteacher
Posted October 16, 2009 at 1:52 pm
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Huh? I have never heard of that--so you are out of my realm. All I have heard is that damage to the vagus nerve causes the muscles of the stomach to contract ineffectively or not at all. Try running a search on the Mayo Clinic site.
Of course, I'm not a doctor.
Just make sure your doctor listens to you.

By debbie2027
Posted October 16, 2009 at 2:00 pm
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I have EDS (Ehler's Danlos type 3) a connective tissue disorder and they believe that the tissues are breaking down through out the GI track ... I am sluggish from the belly to the colon. So I have IBS and GP, and positive Chron's antibodies although no positive ulcers of Chrons that they have found yet.
Mayo said Emory has to see me first since I am outside the metro Atlanta area.

By busyteacher
Posted October 16, 2009 at 2:13 pm
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How GP works with connective tissue disorder, I don't know. Mine is "idiopathic", and most others that I know of are related to diabetes. Perhaps, as you gather information, you could post it on the forum? I am sure there are others who share this with you--and you might need a different course of treatment, even if you can find a diet that works for you.
I wish you well with all of this. It's so hard when more than one factor is involved.

By gaa
Posted October 16, 2009 at 2:32 pm
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From Busyteacher's post - "I actually ended up on Cymbalta, due to misdiagnosis, the worst thing for GP". I am responding to this because recently I was diagnosed with GP and I'm trying to find out more about it. I have been on Cymbalta for several years, due to to pain from permanent nerve damage. My GI doctor has not indicated any digestive side effect from Cymbalta. Can you tell me more about this?

By debbie2027
Posted October 16, 2009 at 3:14 pm
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My GP is idiopathic, with possible EDS causing it, that is what they are sending me to Emory to confirm. Both the Gastro and a Geneticist are to confirm it.
My current rheumatologist confirmed the EDS and my twin sister has been confirmed with EDS (at Emory) but hasn't had the GI complications.

We both have had numerous sugeries for dislocations and torn and ruptured tendons.

This condition (EDS) also causes IBS as well as GP in some patients...

the DR's found the information on the following website:genes review

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene

( ehler's danlos syndrome) in search engine

Searched for just Gastroparesis nothing comes up other than an illness that affects children

By macbeth719
Posted October 17, 2009 at 8:49 am
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Here is the direct reference from Micromedex (pharmacy resource)
"conditions that slow gastric emptying, such as diabetes; may affect stability of enteric coating"

By Novagrad
Posted October 17, 2009 at 7:56 pm
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I'm sorry you are going through all of this. I also have severe gastroparesis. But the weird thing is that I also test (very) positive for the Crohn's antibodies!

Mimi

By debbie2027
Posted October 18, 2009 at 8:47 pm
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That is weird .... has your DR said anything about the Chron's antibodies test? All mine said is that it could present itself later in life.
Thanks for the support and I wish you the best of luck with this too ...

I know this isn't easy.

By Novagrad
Posted October 19, 2009 at 7:17 pm
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No, the doctors have not said anything about this antibody except that it is very positive but they have not found any Crohn's yet.

Mimi

By gijen
Posted October 20, 2009 at 8:38 am
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Debbie2027-
I am sorry that you are not feeling well. I too have struggled with gastroparesis for nearly 20 years. No one knows how mine developed. I too have delt with the whole anorexic stigma. I noticed in your entry that you mentioned Emory. Do you live near Atlanta? If you do, I have an awesome GI doc in Atlanta who specializes in motility issues. Please let me know and I would be happy to share his information with you.
gijen

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