My Stomach

[puppylove]

I just don't know what to do any more. My stomach problems never end. Normally there is no pain, just nausea, GERD, and diarrhea but today it starting hurting so bad. I have had so many tests done, they all came back fine. My GI doctor really doesn't know anything else to do besides giving me phenergan, which isn't working anymore. I have gone to the ER several times over the past year when I feel like I do today, but as you guys know they can't do anything. I have tried herbs, Ginger, liquid diets, eliminating foods and nothing has helped in the long run. I'm just fed up and needed to whine. I really thought it was gastroparesis because I had so many symptoms of that but the test came back negative. Are there ever false negatives or something with that test?

[songcanary]

Puppylove,

I don't know what meds you are on, but I had the same symptoms until I started doxepin. Plus, I was on PPIs until recently but have been able to stop them after starting digestive enzymes. They seem to help. I so feel your pain. I've gone the phenergan route too, and it was hit or miss, plus I hated being sedated. I'm sorry, I can't answer your actual question because I've never been tested for gastroparesis. I just wanted to support you. I do hope your doc can suggest something else, but I'm not sure if the GIs think of much else besides the usual meds. (((hugs))) Hopefully someone else will post with good suggestions, I sorry I'm not much help right now .

[Christy_D]

Doxepin helped my son as well, but it was short lived. He felt great for about 6 weeks(this was 1.5 years ago) then it abruptly stopped working. So, maybe give doxepin a try. It still helps with some of his other symptoms, just not the nausea or GI stuff any more.

Also, the higher the dose he was on, the more effective it became. But from what I've read, he is on an unusually high dose.

Christy

[bellgirl]

Puppy, you could be having spasms in your colon. I had such horrible pain with that last year about this time for a whole month, that I thought I had colon cancer, but I didn't . I had it on and off every year in the Spring for the last 4 years. I had some medication for bladder spasms, that my doctor prescribed, Urogesic blue, and since the colon is also a smooth muscle, it worked wonders after about 24 hours. Also getting a colonoscopy cleaned me out...talk about major diarrhea...but that helped, too! Just ended up with one polyp. I've had major gastritis, and GERD, too, so I feel your pain. Talk to your doctor to possibly get something for spasms. Prayers for you!!

[christinal]

I got a false negative the first time I took the gastric emptying test, a few months later the test came back positive with significant slowed motility so it is possible. I am at a really bad stomach place right now so I feel your pain. I HAVE to consume more food which has been so hard because of all of the pain. I really hope things get better

[puppylove]

Thanks everyone. My gastro doctor actually called after I posted this and said he was going to try me on a low dose of Reglan. My parents got kind of worried when they saw the side effects... Has anyone been on it?

[Christy_D]

My son was on Reglan. It didn't help him. I think you might not want to stay on it long term, some of the side effects can be permanent. It is not a drug I would ever put my son back on. I believe there have been law suits against the makers of the drug because of the side effects.

Edited March 29, 2012 by corina
medical advice

[puppylove]

Thanks for the warning. Were not going to risk it.

[PetuniasMom]

My daughter tried domperidone and metoclopramide (is that reglan?), with no success.

The only thing that helped her tummy was when she started Florinef. She had lots of pain and bloating, constant nausea, and a very full feeling after only a few bites of food alot of the time. I think its because the florinef increased her blood volume, and your digestive system requires alot of blood to function properly. I also encourage her to stick with easy to digest foods - LOW fibre including white bread and white rice - not brown, low fat, minimal dairy, cooked not raw veggies, lean meat... all while trying to maintain high sodium intake

[Lenna]

Domperidone has helped my son A LOT. I wouldn't consider taking Reglan. The side effects are not worth it.

Edited March 29, 2012 by corina
medical advice

[JenLR]

I've had severe stomach problems for the past six months. I lost 25 pounds in a couple of months and was hospitalized three times due to severe POTS symptoms. I ended up having to get a PICC line so that I could receive TPN for about ten weeks. My doctor really wanted me to get a feeding tube, but I asked her if I could try domperidone first. I started the domperidone about six weeks ago, and so far it has helped me SO much. I wasn't able to eat anything more than baby food, white rice, and liquids for about six months until the domperidone. Tonight I actually ate fried oysters and a baked potato. My nausea was terrible before, and now it is about 90% improved. I didn't really think that I had gastroparesis before I started taking this drug because two years ago I was tested for it and the result was negative. But now it seems that I do probably have it. So, you may want to ask your doctor about trying domperidone just to see if it will help. I know that I am very thankful that I learned of this drug from others on this forum. It has definitely saved me from getting a feeding tube and has greatly improved my quality of life.

[sweetfeather]

I was tested for celiac. It was negative. When i couldn't stand the pain, bloating, and brain fog any longer I tried the SCD diet as outlined in "Breaking the Vicious Cycle" by Elaine Gottschall. See pecanbreaddot com and breakingtheviciouscycledotinfo and read the book reviews on Amazon. It was miraculous. Within four days my brain felt like a fog had lifted, my insane carb cravings vanished, and my pain and bloating stopped. I did feel like I had the flu the first couple of days.. they call that die-off.

When I tweaked the SCD to the GAPS diet (long simmering bone broths, sauerkraut, probiotic pickles etc) I unwittingly started eating a very High Histamine diet! I felt okay on it although I started having bloating and pain again occasionally. I thought I was allergic to something but I couldn't figure out what it was. I thought I was eating a really healthy diet and doing wonders for my gut flora. Well... I felt pretty good until after I came down with the swine flu! I never fully recovered and a few months later...I got really sick with POTS. I believe the high histamine diet played a big part in how bad my POTS got after the virus because the histamine coupled with MCAS/MCAD intensified the cascade of symptoms.

If MCAS/MCAD issues are a problem... anti-histamines might be helpful. It makes sense if you go to the trouble of trying to block histamine that trying to limit histamine in the first place is probably a good idea. I feel so much better on the ZZ protocol and with a low histamine version of the SCD. I do eat the 24 hour homemade low lactose yogurt which has histamines but as long as I limit them elsewhere as much as I can I feel the benefits of healing my gut and putting good bacteria back in there is worth the histamine in the yogurt. (DAO is made in the small intestine so good bacteria should help restore gut health which will help create more DAO which will help with histamine.)

I'm careful to eat fresh meat or freeze cooked meats right away and then reheat in the microwave because leftover meats keep increasing in histamine unless frozen right away. I eat a lot of just ripe bananas. The first successful celiac diets relied heavily on bananas. They can't have any green left on them so they need to at least have a few brown spots. Green bananas have too much starch which feeds bad intestinal bacteria. I don't think the latest SCD books stress how helpful bananas are for those with intestinal problems. The originator of the SCD, Dr. Haas, encouraged eating lots of ripe bananas and he did not rely as heavily on nuts like Elaine did. I found the stages as outlined on the pecanbreaddotcom site was very helpful although I found I could eat the yogurt earlier than they recommend. You can research more about histamine foods by googling histamine intolerance and HIT.

NoMoreCrohnsdot com is another good website and I get my yogurt starter from lucyskitchenshopdotcom

Best of luck to you! The diet is worth it. It is so wonderful to wake up one day and not remember the last time your stomach hurt.

Edited March 29, 2012 by corina
medical advice

[MandyBrook]

I know this is probably going to sound silly but how do you know the difference between normal nausea and gastroperesis?? I've been very nauseated for weeks now and am having a hard time eating.

Thanks

Mandy

[surfgirl14]

Hey puppylove. I am right here with you on that. I have had lots of stomach issues too. They ordered a test for gastroperisis but we don't see the point in me getting the test so were not going to do it. Almost every test I get turns out negative anyways. But I was told I had IBS which is Irratable Bowel Syndrome. Feel free to look up the symptoms and see if they match you. But what is weird is for me, I have lots of other stomach issues that don't relate to IBS. Yea it frustrating, I completely understand. Hang in there. I am on a medicne called Bentyl that works for my stoamch cramps I get. I too have been to the ER several times but for severe stomach pain. I also have bad nausea and they give me zofran and now I wear a patch behind my hear (not really sure what its called) ..... I dnt notice the patch helping me. Nothing really seems to help my nausea. Hope you get better. If you can't eat at all, and can't keep anything into your body ... I would consider letting your doctor know that. They admitted me last summer do to sever nausea and difficulty swallowing which causes me to not be abel to intake food or drink. People with POTS are more succeptable to dehydration and you do not want that to happen.

HUgs

p.s.- try not to worry so much, I know it is hard not to. I have to tell myself a lot to just breath and that POTS isn't life-threatning. Make sure to tell your doctor everything that is going on if it gets worse. Usually talking to my doctor or my mom talking to my doctor.. puts my mind at ease.

[skiberthoud]

I also used to have the horrible pain as well. Was SO sure my gastroparesis test was going to be a huge positive, but it was not. I also have GERD and a hiatal hernia (since birth ). I've worked on my digestion a lot with my naturopath. I've detoxed and changed my diet, as well as increasing my probiotics and making sure I take my digestive enzymes. From time to time I still will get some discomfort but it is much better. I hope you are able to find some permanent relief soon. Oh, if you like to read my favorite book about digestion is "Digestive Wellness" - good read with lots of info. Take care!