Gastroparesis

[Rachel]

I went to see a GI doctor a few weeks ago to get some help in managing my gastroparesis. I've been getting by okay on my own by doing some diet changes, but I wanted some help with the diet stuff, and wanted to make sure I was doing things right. The doctors appointment ended up being one of the worst ones I've ever had. The doctor was so rude that I kept thinking, "Are you for real??! Is this really happening?" I've had my share of bad doctors, but this was so over the top that it was shocking. I felt pretty hurt at first, but I've just learned to laugh about it. It was that crazy and unreal.

Anyway, I ended up leaving with even more questions than when I arrived. The doctor wasn't too interested in treating gastroparesis, and she just wanted to give me Reglan and send me on my way. I've heard enough about Reglan to know that isn't a med I want to try unless absolutely necessary. The other med the doctor wanted me to try was Prevacid. She said that since I have gastroparesis, I most likely have reflux too. I know I have reflux occasionally, but it isn't a daily problem. However, the doctor said that I could have reflux even if I don't feel the burning, and that reflux can cause some fatigue. She said to try Prevacid for a month to see if it helps me to feel less fatigued. If I feel less fatigued, it would then be because the Prevacid had helped with reflux, and thus decreased my fatigue.

I didn't ask any questions because, as I said before, the doctor was not nice. I just wanted to get out of there, so I nodded along. I'll talk with my pcp when I see her next week, but I also wanted to get the thoughts of people here. Have any of you had reflux, but not felt it? Has it caused fatigue at all?

I don't want my esophagus damaged from reflux, but neither do I want to take a medicine if I don't need it. We have stomach acids for a reason. They help to break down foods for digestion. If I don't actually have reflux then it would be counter intuititive to reduce the acid. Even if I were to do a trial of Prevacid, I can't imagine that it would reduce my fatigue enough to even notice because my level of fatigue is so extreme to begin with. So I'm thinking that doing a month trial wouldn't tell me anything, and I certainly don't want to add another med to the mix if it isn't necessary.

I'll run all this by my doctor next week. Until then, any thoughts on reflux without pain and fatigue resulting from that?

Rachel

[MightyMouse]

Hey there Rachel, sorry your doctor acted like such a dork. I'm at a point in my life where I just say it right then and there--like I did with the geneticist last year. Well, actually he was so rude he came and went in less than 5 minutes, so I said it to the other 3 members of the team that had been with me all day. Funny thing was that they all appeared to be a startled as I was about how I was treated, but they could not be as "expressive" about it as I could. Sorry you didn't get to air out your thoughts then, but glad you can at least do so here.

Me, I have gastroparesis and reflux. The reflux was diagnosed many years before the paresis by upper endoscopy. I take nexium 2x a day... and before nexium was on the market, I took prilosec a few times a day. Reglan and I don't play well together. Aciphex did nothing for me. Previcid worked, but I'm allergic to it (hives, asthma, etc.). Zantac didn't control the symptoms effectively enough...and neither did Tagamet.

that about covers it!

and again, sorry your doc was such an idiot.

Nina

[juliegee]

Hi Rachel,

I'm sorry the doc acted like a jerk. You are loved and believed here. If that GI could spend one day in your body to experience what you go through.....

My son and I both deal with delayed motility and I've spent lots of time on the Yahoo gastroparesis site when he was first diagnosed. Reflux certainly seems to be part and parcel of delayed motility, especially gastroparesis. I'd be very surprised if you weren't dealing with it to some degree. When the food doesn't digest properly and just sits in the tum, it often refluxes back up the esophagus.

At first I really wasn't aware it was happening to me. I have a high pain threshhold and it snuck up slowly on me.... until one day I ended up in the ER in severe pain. Unlike Nina, an upper GI X-ray (not endoscopy) reavealed my scarring. Ranitidine/zantac does the trick for me and helps hold my mast cell issues at bay. Maybe it wouldn't hurt to try something for a week or so to see if you feel better. I remember feeling much less nauseous once I began my treatment (and I wasn't aware I'd been nauseous- if that makes sense.) I have heard that chronic, mild reflux does contribute to general overall fatigue. I know it sounds weird.

Like you, I'm opposed to taking unnecessary meds. Every few months I try to go off of (or lower the dose) of one or another of mine. I usually end up feeling terrible and it reminds me of WHY I behan taking it in the first place.

Let us know what you decide.

Julie

[ajw4790]

Jeez, yet another wonderful jerk of a dr. story! I have never understood drs just being out right rude to patients... If you don't want to be there, why are they there? I wish it had went better for you! It sounds beyond frustrating!

I understand your thinking about too many meds and their interactions, I think that is always a good concern. Have they discussed any testing to see if there is reflux? Or do you have any of the other symptoms associated with GERD other than the typical reflux feeling? I do think that many can have reflux without any obvious symptoms. Especially in those of us whose nervous systems are not working 100%, it is possible that it could be happening and you may not feel it or get the same reaction as a non-dysautonomia person.

The meds may be worth a try, or at least see if that dr. or another will do endoscopy or something to test for reflux.

I hope you get some answers!!! (and a dr. who is more helpful! )

[Guest tearose]

Once again, the Mayo clinic diagnosis helped. They found "periodic gastroparesis" with GERD/reflux. So, it is possible to have bouts of gastroparesis and not have it all the time.

My trouble was with a local doctor who didn't understand that symptoms can come and go.

Easier said than done, but don't allow a doctor make you feel badly! Do try to gather your thoughts and just say "hey, wait a minute, I need to understand more, please do not walk away!".

take care,

tearose

[flop]

Hi Rachel,

sorry you had such a frustrating experience with the GI doc, you deserve better than that.

Reflux without pain - I have never had any pain or discomfort from "heart burn" but I know I must have fairly severe reflux as I often experience "water brash" (gastric fluid coming up into my mouth). I started taking Ranitidine / Zantac 150mg twice daily to help with my allergies and it has made a big improvement.

Metoclopramide / Reglan - I don't often take anti-emetic medications but when I do metoclopramide is my favourite. It helps with nausea, reflux and improves my appetite - as the stomach empties better I don't feel full so quickly.

Flop

[P SUDIK]

I am so sorry about your horrible dr. app.,I have been there more than a few times(felt like I was in a bad dream).

I have gastroparisis and severe Gerd,I take 40mg.of protonix 2x a day and sometimes I have to add tums. My GI wants me to take Reglan,I just don't want to,so I have not. I have not heard good things about it.

Take good care and let us know what you decide,HUGS Pat

[Rachel]

Yeah, the doctors appointment was not fun, but I made it through! Will and I just laugh about it now. It comes up in jokes every once in a while!

I've just recently learned of a very good doctor for gastroparesis in the Atlanta area, one who is familiar with dysautonomia. Horray!

Thanks everyone for the information and for sharing your experiences. I'll be going to the doctor tomorrow, so I'll talk through some of these things with my pcp. I think I've had mild gastroparesis for most of my life, so perhaps I've also had relfux for quite some time, but just never knew it. Even as a kid I would often feel gastric fluid coming into my mouth, as you mentioned flop, but I never felt a burning in my esophogas. It has only been in the last few months as my gastorparesis has gotten worse that I've occasionally felt heart burn. So maybe it has been there all along, but I don't feel it unless it gets really bad.

I'm still unsure about doing a trial of Prevacid. I'm just not sure that I would be able to notice a reduction in fatigue. So maybe the medicine would be helping, but I wouldn't even know. I suppose it wouldn't hurt to try, though, just for a week or two. If I don't notice a decrease in my fatigue level, perhaps an endoscopy or a GI xray would be the next step. I certainly don't want to my esophogas to be damaged by reflux if that is a problem. But taking Prevacid long term "just in case" doesn't seem wise to me either.

I'll talk with my doctor tomorrow and let you all know what we decide.

Rachel

[helen.t]

Hi Sorry you had such a bad Doc experience!! Had many myself so can relate well. I think it would be good idea to try the stomach meds as I have chronic acid reflux and when it is bad causes my fatigue to be so much worse. When my stomach/bowel is happier then my other symptoms are easier to cope with. When my stomach is in a bad way which is often, then I'm in a very bad way!!! Good luck Helen

[morgan617]

Rachel, sorry about the horrid experience, been there done that more times than not!

You can have reflux and not realize it. My husband just thought he had hunger pangs and when they scoped him, it looked like raw hamburger in there. He realizes now how much better he feels. I have been on prevacid for years, twice a day and still have reflux and gastritis to the point of getting those darn strictures. My son has reflux too, but he and I both really feel it.

Maybe the doctor thought it could contribute to your fatigue in that, when you sleep and have reflux, it can go all the way up into your larnyx and you can have micro aspirations, which can wake you up, but not fully, so it interrupts your sleep. It makes you cough or choke. That's the only explanation of reflux causing fatigue I can come up with. If you wake up with a lot of sore or burning throat symptoms in the mornings that clear up after you are up, you may be refluxing.

I read somewhere that over half of people with severe reflux don't realize they have it. I started on reglan...hated it...went to zantac and was up to 900 mgs a day, then went to prilosec and now have taken prevacid forever. I take 2 a day. Jake takes 2 nexium and then pepcid at bedtime, since you have different mechanisms at night working and the proton pump inhibitors (prevacid, etc) don't work as well as the histamine blockers (zantac and pepcid) and Dave takes prevacid too. We all feel much better on meds.

That certainly doesn't excuse jerk doctors that blow you off, but then nothing excuses that does it? We do need acid for many reasons, but too much acid over years can cause major problems like Barrett's esophagus and stuff. And you don't want that. Good luck with whatever you decide sweetie! morgan

[DancingLight]

Rachel,

I'm sorry I am so late chiming in...as you have already been to your PCP by now. Oops.

My PCP actually ended up solving the mystery for me anyways, so maybe you can say adios to the doctor you saw anyways. My PCP sort of just figured it out by trial and discussion...I'm so tired, I'm not making much sense.

Bottom line is that I did not have traditional reflux symptoms, but had this persisten pain/discomfort, etc. in the duodenum area. My PCP thought that I probably had some damage there or some acid problems. He also explained how inter-related upper GI and lower GI problems can be and that maybe helping to solve my upper GI problems would help solve lower GI problems.

I didn't have any testing done. Instead...I just started trying the most mild of meds, Zantac at 150 mg at bedtime. It has worked really, really well for me and that pain has completely healed. So I think he was totally on the right track as to what was going on.

I went off of the Zantac recently for a few days before some allergy testing and was really miserable again...so I realized it wasn't a med I wanted to go off of.

I don't have the Gastroparesis on the level that others do, if at all...so my situation may be a bit different. But, I did feel good about getting the Zantac and trying it at least to see if it helped. It probably actually healed the damage in the upper GI area by preventing all that acid. I don't know.

Compared to all of the other meds I'm on...I feel least scared/concerned about Zantac! LOL. At least it's been around for a long time and tried and true. Although Reglan has been around for a long time and it's pretty scary...but you are smart and good at making decision so you had already ruled that one out as a drug to take long-term.

Let us know what you decide. Follow your gut (literally and figuratively! )

I hope your PCP was able to problem solve with you.

Emily

[Rachel]

Thanks for all of the information Morgan and Emily!

After discussing things with my pcp and going over symptoms, she said that she definitely thinks I need to be on Prevacid. It will be interesting to see if I notice anything different after being on the med. If I've had mild reflux for years then what I feel as "normal" may not be normal at all!!!

Thanks for the help, my friends.

Rachel

Edited to add: I just found out that I'll actually be on Omeprazole. My insurance has the "step treatment" thing. First I need to try Omeprazole. If that doesn't help, then I'll try Prevacid.

[DancingLight]

Rachel,

What's normal???!!!!!!

Sorry, I so couldn't resist.

I really hope the Prevacid helps. It took me a while to notice a difference, but I'm glad I gave the Zantac a shot.

I would be interested in the link b/w fatigue and reflux though...I don't think I noticed a change there. Although, like morgan was talking about...I did used to wake up often in the mornings with pain that would keep me awake. Thankfully I don't have that anymore!

Emily

[Rachel]

Emily, I'm not sure what normal is!!! Things that I thought were normal when I was 5 or 10 years old, I discovered were not normal many years later (like when I was 22!).

[medicalenigma]

hmmm... when I have reflux... i feel it big time and it usually comes along with other gastro problems for me (going to be tested for GP). As for fatigue... don't think my reflux causes fatigue.. never heard that before.

[medicalenigma]

also.... may i ask... my dr is considering reglan... don't know too much about it.... are there many side effects that deter people from taking it??

thanks

[Rachel]

There are a lot of very bad side effects that go along with Reglan. You can read about them here: Reglan Side Effects.

The GI doctor wanted me to try the med right now, but I don't want to consider it yet unless absolutely necessary. The doctor warned me about all of the side effects and how bad they are, and she told me to read all of the warnings that come with the prescription papers. She said that Reglan needs to be taken 4 times a day, but that hardly anyone can tolerate that dosage.

Rachel

[helen.t]

Hi, thought I would chime in again. It is Omneprazole that I am on and it works fairly good for me. My fatigue increases dramatically when I have a flare up of acid reflux which I can still get even on the meds but is due to food intolerances. I get severe heartburn which for me is the worst pain to deal with out of all the other pain I get. I suffer from much bowel pain; muscle pain; migraine and all sorts of other severe pain but the stomach acid thing really tops the lot for me as it is very bad. Hope the med helps with you, even if it helps some things to improve then that will be good. LoL Helen