Gastroparesis

[Kira]

I had a gastric emptying scan on Monday and it came back that I have gastroparesis (stomach not emptying normally). This could certainly be contributing to my nausea and vomiting.

The problem is that I have a few things going on that could cause it. First of all, GI motility problems are common with mitochondrial disease, which is most likely what I have. So it could be from my disease. But, you can certainly have GI motility problems from the opiates, too, so maybe it is from that. Or maybe it is from both... maybe I had an underlying problem with it that was made worse by taking the opiates.

My primary care doc talked about putting me on reglan to try to improve that motility, but said that it is a drug with a lot of side effects and that it can interact with my effexor. I am not sure that I want to try going off of the effexor just to try the reglan, and I am not sure if I want to take the two drugs together because of the possibility for interactions.

I am wondering about tapering off of my pain meds and seeing if the GI stuff improves. I am still having pain anyway, ever since my last hospitalization, even with the meds. So I really feel like it can't be much worse than it is now, even if I taper off of the meds. And maybe then at least I wouldn't be puking (maybe, maybe, maybe).

I am going to try to see a GI doc instead of just my primary about this. That is one decision I have made. Also, I am going to talk to my pain doc before I try to go off of the pain meds... I have an appt with her in a couple of weeks.

It just sucks because I feel like I am stuck here: I can choose between nausea, pain, and depression, but not treat all three.

[Mark N]

Good luck with the tapering. I hope it works for you. When I got disgusted with my meds and decided I could tough the pain out like I used to I got a big suprise - the pain was worse than I thought.

I hope you can work around the meds to improve the motility problem.

[Kathi49]

Kira,

The only thing I can add is that it sounds like you have a good plan in place. :) I only know of one other person, a friend of mine, who takes Reglan and he told me he has not had any side effects. Then again, he is not a CP patient either. But I know what you mean by trying to find the right "cocktail". It always seems one thing affects another. :(

[BrokenBladder]

Kira I have to agree with what Mark and Kathi said.

It's so difficult to get it "right" with a CP patient and then for you to be having a GI problem only makes matters worse.

I do want to say that I agree with your decision to deal with your GI doctor and your pain magmt. doctor on this. I know what it feels like to be willing to do anything to get rid of the nausea and vomiting BUT at the same time you don't want your CP to spike through the roof!!

Good luck hon and keep us posted!!

[Kira]

Thanks, guys. I just feel stuck.

I am sick of having something new wrong with me every time I get a test. I am sick of throwing up. I am sick of hurting. I am sick of being exhausted all of the time.

And I am sick of being smacked in the face all the time with the reality that I can't do any of the things I worked so hard for.

I am scared about how fast things are progressing and I am scared by what I am watching handful of friends go through who have this crappy disease, too.

I want my life back and that can never happen. I have to build a whole new life, but the future is so damned unpredictable with this stupid illness that there is no way to know what I will be able to do in one year, five years, ten years...

[BrokenBladder]

Kira I understand what you're saying and I decided to live life for just today. Planning for the future is just not possible when we have CP and I was making myself crazy trying to make a future under those circumstances.
I know you're younger than I and have worked hard for your future as a doctor. I'm not saying that will never happen, but just for today, live for today.
You never know the future may hold a cure for you and me.

[BrokenBladder]

BTW, I truly hope the future holds a cure for all of us!!

[Lea]

Kira,

I also have gastorparesis.

As far as I can tell, my GP has not been affected much by opiates although it certainly is a possiblity. I had GP years before I started pain meds. There is alot they can do right now. I am a moderator for a GP group on yahoo, but haven't been very active on that board for awhile as my GP is pretty much under control.

I couldn't take the Reglan because of the EPS side effects. It drove me nuts, literally. A trial of Zelnorm would be a good thing. Ask your GI about it. I was initially going to be given a gastric pacemaker, but thank God my insurance denied it. I had a pyloroplasty and a Nissan fundoplication 5 years ago, and it really worked for me. I still have occassional problems and really have to watch what I eat and how much.

A small percentage of people can't eat at all with GP, but let me stress it is a very small percentage. So if you check out the GP group, keep that in mind as alot of those who frequent that forum are in that small group.

Let me know if I can help you in anyway. I dare say I've become quite the lay expert in all things involving gastroparesis.:rolleyes: