Motility/gastro Problems -- Again

[MightyMouse]

Well folks, thought this would pass (ha, no pun intended...) but I've been having increasing pain/upper abdominal issues for weeks now. One visit with the covering doc at the GI's office and he thought it was time to do yet another scope, even though he feels it's probably autonomic dysfunction related motility issues.

I suppose I understand their need to actually look at what's going on (or not) but it gets tiresome. I hate the idea of being back at work for less than a full week and I have to already burn my first sick day. I feel like I have heartburn nonstop even though I take Nexium 2x a day... maybe they'll see why? anyway, they also want to do a gastric emptying study too b/c it's been 10 years or more since the last one. Have yet to schedule that... mmm radioactive eggs, toast and juice and a half day at the hospital for them to watch how far my food makes it in the allotted time. Okay, 'nuf of me being sarcastic and cranky--I'll be cranky enough for ALL of US tomorrow morning without my coffee as my test isn't until nearly noon. I'll be having Teri keep a coffee waiting for me for when I wake up.

Anyone else here on more than 2 Nexium daily? I know my pharmacist has a few patients on more than that, but not too many. I'm allergic to Prevacid, so that's off the list of possibilities... I've tried most of the other stuff on the market and Nexium still outperformed all of it for me until recently (about a month ago).

Nina

[juliegee]

Sorry Nina-

Mack takes two Nexium a day at times. It's episodic for him. He's better now that he's taking a large dose of ERY-Ped twice a day. What are you using as a prokinetic now?

Since you're facing an endoscopy anyways, I wonder if your GI can test for eosenphenils/mast cells? Sometimes increased/or misbehaving mast cells can contribute to GI symptoms. Have you ever tried ranitidine/zantac with your nexium? If it's mast cells/allergy related; the ranitidine may turn things around for you. Sometimes a high level of eosenphenils (sp?) can indicate a hidden food allergy or sensitivity that's behind symptoms.

Lastly, I have tons of acid too. I take several tums daily for calcium. Regular calcium supplements give me horrible heartburn. I time the tums for late afternoon when I have breakthrough acid.

I sort of know how you feel (just a tiny bit) I just found out today I'm due for my next colonoscopy- DREAD!

Julie

[MightyMouse]

I take an herbal supplement that has fibre as well as some herbal stimulant properties. I have glycolax (aka Miralax) which doesn't always help. They haven't given me anything else to help with motility. From what I gather, Motilium aka Domperidone isn't available in the US unless ordered via Canada.

I can ask about testing for mast cell issues--we'll see what happens. I take benedryl EVERY day --and sometimes add Zantac too. What is Ery-ped? Is that pediatric erythromycin?? If so, I'm allergic to it...

I've been feeling pretty terrible--the only thing I can think is different is that we're entering my ragweed allergy season and I no longer have Singulair b/c my insurance refused to approve it. We'll see what happens tomorrow but I'm feeling lousy at present.

Nina

[MightyMouse]

Oh and good luck with your scopy... yuck. The prep for that is way worse than for an upper version... I dread those colonoscopies... ewe!

[juliegee]

Hi Nina,

Yeah, Ery-Ped is liquid eyrthromycin. I'm allergic too, which is quite frustrating, because it works great as a GI prokinetic for me. When Mack first became sick, I learned a lot about GI motility issues via a Yahoo Gastroparesis Support Group. Many (most) of the folks there take domperidone. It is easily obtainable via mail & very often suggested by US GI's as we are left with almost NO motility drugs here in the US. Reglan has finally been recognized by most as having too many negative neurological side effects. Zelnorm was taken off the market (although compassionate exception requests are available-I think) And liquid "E" doesn't work for everyone & many are allergic.

I'm surprised that you're taking fiber. It doesn't seem to work very well in many with motility issues caused by damaged nerves (most likely with dysautonomia.) Many GI's tell us to avoid it as it can make us dangerously swell (and even potentially cause a lockage) without the sweeping out effect that our damaged nerves can't provide. Miralax only works for me if I take it religiously. Even if I skip a day, my symptoms (nausea/bloating) come back full force. Is constipation one of your chronic issues? If so, I might re-consider it & take it daily- maybe at a higher dose than you were taking before. (About 40 grams works for me.)

Did the zantac help? If so, I'd ask your GI about adding that to your Nexium. From what I understand, those 2 can be safely mixed as they work in different ways. I only mentioned looking for mast cell/allergy issues because I know you are dependent on your allergy meds. It might be worth looking at that more closely. Staining for mast cells is tricky business & not every hospital can do it. You'd have to be sure the protocol was researched before your endoscopy. I think checking for eonsephenils(sp?) is pretty standard.

Keep in mind that a food allergy or sensitivity might be behind things. We found out at age 12 that Mack was highly sensitive to milk proteins. Avoiding that has been helpful not only to his GI health, but to his dysautonomia too. EVERY tradition test, RAST & even a biopsy, found him to have NO problem with dairy, BUT a careful health history by Dr. Rowe told a different story. Have you ever tried avoiding dairy, wheat, etc for a few weeks to see if that makes a difference?

I'm so sorry about the Singulair. That's awful! And you are feeling worse since you stopped? That breaks my heart. I'm pretty dependent on that one. My chest hurts horribly if I don't take it. I just found out our insurance co will no longer pay for Nexium. Both my husband & son absolutely must have that one. For now, Bruce (hubs) buys it in India when he flies there.

I hope you get relief soon. I know how weak you can feel without adequate food intake. And, nausea is the pits. One last idea, since things are worse with ragweed season...why not try an OTC zyrtec in the AM & keep up your nightly benadryl.

All the best. Let us know what you find out.

Julie

[sue1234]

Have you given magnesium a shot? You could try a few hundred mgs., and work your way up to bowel tolerance. When you hit that dose that helps you "go", then you can maintain or drop, according to your "needs". It might be worth a try.

[MightyMouse]

thanks so much for all the great info and thoughtful comments. My GI doc's labs don't have the capacity for mast cell testing--but he did take biopsies that will be checked for eosinophil activity. On a macroscopic level, he said everything looked great so it's onward for more blood work and the emptying study.

My fibre supplement is part of a "cleanse" concotion that has more stimulant properties than the fibre that's in it. It has helped me have more regular movements--I see a big difference if I stop it.

It's funny you mention the dairy issue--we just talked about that last night here at home. I've been noticing that the pain and spasms were wicked after both dairy and eggs. I had some brie cheese for lunch yesterday and last night was just plain brutal-I couldn't sleep 'cause of the pain.

I used to take magnesium but it upsets my stomach. I will be pressuring my doc to reapply to get me the singulair b/c I think if I have that I may not have to change much else... we'll see.

Well, I'm still kind of loopy and need to get to bed. hugs to you all

[Mrs. Burschman]

Weird suggestion: I've heard that sugar-free gum gives some people the "runs." That wouldn't speed things up, would it?

My brother had gastroparesis. He ended up getting a lot of relief from really small doses of a tricyclic antidepressant. Go figure.

amy

[juliegee]

Didn't realize it was today....congrats on having it done & behind you. Yeah, the mast cell testing requires a protocol & specialized stain, etc. I hope you get some answers. Rest & relax!

Julie

[MightyMouse]

Okay, not asleep yet so here I am again--

gum: xylitol gives me stomach cramps big time

antidepressant: I think that's why a my autonomic doc put me on a low dose SSRI--tricyclics are out for me. A former doc tried that with me once and my brain just went into overdrive--I was exhausted but had racing thoughts and couldn't sleep.

My to do list right now is: cut out milk/dairy/eggs and get my Singulair back. If I have to, I'll stock up on it in Mexico in Dec, but I'd rather not b/c it's still expensive --about 100$ a bottle and I'd need several bottles. I already have some other meds that I get down there--including zyrtec--because they're much less pricey. I'd have to start saving for that NOW in order to pay for the Singulair if my insurance still denies me.

Trying for sleep a 2nd time--here's to a nice night's rest for all!

Nina

[morgan617]

Nina, Jake takes 2 nexium, but our gastro has him take 40mg pepcid at bedtime, he says the acid you release at night is different than what is released during the day and the H2 inhibitors are better for that type. he does do better when he follows that regime and the 40 is prescription strength, so it helps pay for it. You might try that.

I have had an absolutely horrible time since my chole. Everyone said the diarrhea would be the pits, but I swannee, my gut has stopped moving all together and I have to take 1-3 colace a day to get any movement. I have always had a weird gut, but this is the total pits. I have a gastro and dilation scheduled in October, but not sure I'm going to make it till then.

Anyway, you might try that. He always knows when he has missed one. good luck sweetie...morgan

[potsgirl]

Nina~

Hope you had a good night's sleep and are feeling better this morning. I have some of the same issues you do, and recently tried Activia and Magnesium so I could stop taking the Senna I've come to rely upon. Of course, I'd forgotten my touchiness to all products dairy since I was a child. Four days later and with a beach ball belly, it dawned on me. No more dairy from now on. Take care!

Cheers,

Jana

[juliegee]

Nina-

Just a heads up- I buy a really cheap generic version of zyrtec at Sam's Club. Look around for singulair on the internet. There are many reputable overseas suppliers. That's what US citizens with severe GI motility issues have to resort to for domperidone.

Hope you were able to sleep!

Julie

[juliegee]

Nina-

Forgive me. I had one last thought. Do you regularly take a probiotic? Mack & I use Culturelle daily. When motility is slow, the "bad guys" (bacteria) tend to gather & cause issues. Culturelle is a huge dose of "good guys" and really helps. Many of us with impaired motility regularly walk around with low grade bacterial overgrowths- this helps.

Julie