gastroparesis

[Lizzieb48]

Other than the stomach not emptying, how do you know if you have gastroparesis when you don't have a doctor?


This discussion is related to delayed gastric emptying.

[Heiferly]

Sorry you've had such problems with med reactions.  I've had increasing problems with medication reactions (as well as sensitization reactions) as my illness has progressed.  My list of drug allergies is growing, though it's almost all antibiotics.  That has its own perils because my options in that department are getting narrower and narrower.  I had a really hard time getting onto the Provigil; it caused me some pretty bad respiratory difficulties and we had to back of the dosage and wean me on **really** slowly to see if I could tolerate it if my body adjusted to it more slowly.  I do okay with it now, but I don't think I could ever handle a higher dose, even though it might be beneficial for the narcolepsy—it's just too much for the dysautonomia.  The medicine I take for the cataplexy (paralysis attacks from the narcolepsy) is also not very good for the dysautonomia ... but we haven't really figured out a solution to that yet.

For my GI symptoms I'm on these meds: Nexium (1x/day), Prilosec (2x/day), Glycolax (1x/day), Bisacodyl (as needed), Zofran (every 8 hours, i.e. 3x/day).  I don't have the horrible stomach pain I used to, and the nausea/vomiting is reduced a lot (though not eliminated).  I think my bowel issues are about as good as they're going to be, considering the nature of my dysautonomia.

Yeah, I pushed a lot to get different tests run, especially in the beginning.  I still push for things now if I think there's something I need checked out.  I think if you don't advocate for yourself (with rare diseases), you're in for a really rough time.  Getting to Cleveland Clinic was a huge breakthrough for me because they have a specialty clinic for dysautonomia and were able to run some important tests that were "proof" to any doctors that might have been doubting my condition or my assertions about how sick I was/am.

Good luck with everything!!

[Sherah1]

Hello! Wow, just googled your conditions (YIKES!) You have your hands full too!!!  A lot of the meds used to treat them, docs have tried on me. Nuvigil for narcolepsy but had sleep study done and was neg, plus I ended up having such a severe reaction that I fell and bashed my face on the counter. Had to have CT scan for facial fractures, was really lucky. SSRI's caused serotonin syndrome, the last benzodiazipine I was on is thought to have caused my liver disease (which exasperated my autoimmunity due to the damage and my high histamine). I can still take dycyclomine for the spasms in my stomach but baclofen caused more severe reactions. Why I'm such a natural med nut, I have to be, lol. Can not tolerate most pres. meds, synthetic hormones, chemicals, etc anymore, severe reactions. I was offered the oophorectomy and lupron but was seriously warned about both causing further medical complications. I'm also allergic to my own sweat and tears so what to do about that? Would surgery even help and I couldn't have any prescription hormone replacement therapy. Lupron could have caused a severe reaction that they possibly couldn't stop. Worse comes to worse and I'll go thru with the oophorectomy but my treatment is much safer and just fine right now. I just need to be able to take it, lol. I have gone from 2 weeks of the worst stomach pain ever for yrs down to 4 days a month but this month is horrible. I'm either 2 weeks of pain/others due to no estrogen or 4 days of stomach pain from my gall bladder on the estrogen. Hopefully they'll get it straightened out but I've lost faith in docs, I just can't perform the surgery on myself yet :) I use Triphala for spasms and motility from the "gastroparesis" and Iberogast they work great but I still sometimes break through. My immuno knew what the triphala was and advised continuing to take it. Did you have to demand testing for such rare conditions??? I had to demand all my testing or never would have been diagnosed to this day. They just thought I was a mental case until I finally had positive tests come back. Never heard of the dysautonomia and I have a friend who's son has Marfan, I'll have to mention it to her. I looked into the mastocytosis and I don't get the hives anymore, just the organ involvement, was more during childhood with hives and swelling at puberty. Another reason I was so hard to diagnose, no physical symptoms most of the time. You're certainly on the right track as far as the whole mast cell and histamine involvement!!! Think the source has more to do with my liver and it's conversion of methyl groups (undermethylation), so many possiblilities. I'll have to look into Dr. Castells but I'm afraid I don't have the means to see her. Hope your feeling well today!!! Thanks again and nice to meet you!

[Heiferly]

Hello fellow rare disease sufferer!

I have two rare diseases also:  dysautonomia and narcolepsy with cataplexy.  Dysautonomia is frequently associated with gastroparesis, which is how I happened to reply to you.  (I'm usually hanging out over in the Dysautonomia Community.)

I've actually heard of your condition before, though the case I knew of was one where the woman (if I recall correctly) ended up having her ovaries removed to resolve her symptoms; it's wonderful that you've found a less invasive treatment.  Am I correct that this is a form of mastocytosis or is somehow related to masto?  If so, have you seen (or considered seeing) Dr. Castells?  There's a type of mastocytosis that some dysautonomia patients tend to have, and she seems to be the go-to doctor for masto in the US (for patients who have the means to see her).

Sorry to hear about all your struggles.  Although your problem is quite different from my disorders, it's similar in the way that you've got all these problems sort of compounded on top of each other and interrelated and it's difficult to tease apart what's what.  It's so frustrating when you have a medicine that helps one thing and worsens another!  I hope you get answers soon and they can get you feeling better!!!

[Sherah1]

Hello! Thanks for your concern and advice! Actually I suffer a very rare autoimmune disorder called Autoimmune Progesterone Anaphylaxis. I'm only the 10th tested, diagnosed, and documented case. I suffered and survived 24 years of misdiagnosis by researching almost every known condition on the planet, lol. Seems like I did anyway.I was forced to research and use natural treatments to stabilize almost every organ in my body, I have been to over 25 specialists, 16 within the last 3 yrs. and survived over 15 full blown anaphylactic shock episodes. I was never treated in ER or by any doctor for anaphylaxis, just given pain meds, antidepressants, antianxiety meds, prescription stomach meds, and they stabilized me, you name it and I've probably been on it.  It was originally thought that all my stomach problems were caused by the increase in progesterone and anphylaxis before my menstrual cycle. The symptoms subsided about 2 days after starting my period. My immunologist diagnosed the gastroparesis as a symptom caused by the anaphylaxis. Now that I've been in remission for 10 months using an all natural estrogen treatment that I developed and had approved by my immuno and Ob/gyn, my stomach symptoms have greatly reduced but I still have bouts that are more like gall bladder attacks. Cause could be my high histamine causing a build up and release of too much bile or the estrogen could be irritating a gall bladder issue that I've had all along. I had so many symptoms, it was hard to tell which was causing what. Now that my autoimmune disorder is mostly under control, it has been easier to determine where pain is, what triggers the pain (like fatty foods, etc.) Yes, I've had the sonogram, blood work (including pancreas), HIDA scan (52% ejection rate) severely cramped during cck injection, and am scheduled for an endoscopy. Immunology just sent me to a new GI doc, they're going to rule out a few things and then send me to surgery due to my rare and complicated circumstances. I haven't been able to take the estrogen for the last 3 weeks due to it causing inflammation in my gall bladder (feels like I have a soft ball lodged in my bottom right ribs), it's life threatening if I can not have the estrogen but I can live with out my gall bladder. The doctors are working quickly to get the gall bladder issue resolved so that I can start using the estrogen again ASAP. I also have injections of Epinephrine, Albuterol inhalers, and prescription stomach meds to help control the anaphylaxis in the meantime. Although tests are not showing anything, my new GI says gall bladder tests are flawed and some things are not found until they actually remove it. It's rare that they do this without tests showing anything but what can I say, I'm unique ;)

[Heiferly]

If you have been vomiting up blood and your doctor isn't running tests to find out why, it's time to change doctors.  There's no excuse for diagnosing gastroparesis on a "hunch."  I hope that now that they are suspicious of gall bladder issues that they have scheduled you for a HIDA scan.  If not, you need to find a doctor who will take that concern seriously and do so.  Also, considering the vomiting of blood, if you haven't already had an upper endoscopy with biopsy, you should be asking about that as well.  

[Heiferly]

It's not something you can self-diagnose, and even if you could, the treatments aren't over the counter.  Your profile says you are in Ontario, Canada, though—right?  Am I incorrect that you folks up there have healthcare coverage?

If you are able to see a doctor, that's really what you need to do to correctly assess a possible case of gastroparesis.  The test that needs to be done is a gastric emptying study; it's done through radiology and usually ordered by a gastroenterologist (at least it is in the States ... I'm not certain if that differs in Canada).

[Sherah1]

I was misdiagnosed with gastroparesis about a year ago. No test, doc just thought that's what it was due to severe stomach spasming. My stomach spasms so badly that you can feel the bulge from knotting up. I also was vomiting blood and bile on occasion. Now they suspect gall bladder issues instead. A few good supplements you may want to try are  Iberogast (found on amazon) and Triphala. Helps a lot with either condition. You might also look into some good digestive enzymes and definitely probiotics.