Help! Morning nausea and diarrhea.

[Advocate2286]

Every morning I suffer a four hour bout of diarrhea, nausea and stomach pain. Diagnosed APS, am on Apixaban and Clopidigrel (unstable INR from warfarin). Does anyone else with an APS diagnosis have this issue? It’s becoming debilitating … thank you’

[lupus-support1 Administrator]

I am very sorry to read this and appreciate how worrying and distressing for you.

IMHO, you need to see your primary care doctor. You shouldn't just assume this is APS; it needs to be investigated by a gastroenterologist.

You say this happens every morning. How long has this been happening. Is this associated with any foods?

I would keep a diary showing what you eat and when as this may help your doctor.

Please do not leave this - go to your doctor asap.

With good wishes,

Ros

[Advocate2286 in reply to lupus-support1]

Thank you, Ros. I’ve got a gastro referral …. Sadly they are booked 6 months out, but I will work the system 😆 … it is helpful to hear you suggest this isn’t standard APS - I will continue to track food and activity and follow the FODMAT diet - the concern is that it is vestibular damage / migraine from the APS-related stroke I suffered resulting in a stent placement surgery in January, which means there aren’t medicines to help alleviate daily symptoms. Though, overtime the vestibular should heal, which is hopeful. I greatly appreciate your support and response. Vicki

[lupus-support1 Administrator in reply to Advocate2286]

Just to clarify, I don’t know whether this is APS related, rather that you should see a gastroenterologist.

It’s outrageous you have to wait 6 months on the NHS.

There is an anti-nausea drug that’s effective. Please ask your GP.

Wishing you well.

Ros

[Advocate2286 in reply to lupus-support1]

I’m in the US - sadly neuro and GI appts. are difficult to get. I’ll work with my GP in the meantime. Thank you for caring. 💞

[Advocate2286 in reply to lupus-support1]

Ros, Wanted to follow-up thanks for your concern. Have completed GI assessment, symptoms have been determined to be from Vestibular damage / inflammation from my APS related stroke. SPG and accupuncturist are the things that seem to be helping me feel better. Relieved when APS doctor felt it was NOT a primary APS symptom! Hope you are well.

[lupus-support1 Administrator in reply to Advocate2286]

Thank you for letting me know. I am sorry this happened to you.

I hope the SPG & acupuncture continues to help you.

Be well!

Ros

[GinaD]

So sorry to read this. All I have to offer are thoughts and my own discovery that going gluten free back in 2004 coincided with my APS tests turning from high positives to what one hematologist calls " boring"-ly normal. No nausea and diarhea unless I inadvertently consume hidden gluten. ( I can make sure the waiters check with the chef if I explain that eating gluten results in no-warning vomiting,( ( Which it does.)

[Advocate2286 in reply to GinaD]

Very helpful … I’m hearing more about APS and gluten - time for a gluten-free test it seems. Thanks!

[KellyInTexas Administrator]

hello, also to add, if you are prescribed hydroxychloroquine, ( which ApS patients should be unless adverse medical issues unique to them, certain manufacturers of this medication can cause these these GI symptoms. It’s not terribly uncommon.

Your rheumatologist / rheum nurse might be a good person to ask about this in the meantime while you wait for gastro appointment.

[Advocate2286 in reply to KellyInTexas]

Good to know as I am on hydroxy and they just increased my dose from 100 to 300 … could be relevant. Thank you!

[MaryF Administrator]

Hi, hope your GP sends you for some tests and makes a referral to a specialist, I had a very bad stomach and IBS with nasty pains for a long time, having read a lot of things including by Professor Hughes, I ditched gluten and it all cleared up, I have not touched it in over ten years, it might be a good idea to ask about this. MaryF

[Advocate2286]

Thank you, Mary! I’ve been gluten and sugar free since working with Dr. Schofield (Denver, exceptional colleague of Dr. Hughes). It’s looking like it’s Eliquis that my intestines struggle with, sadly my body did not metabolize Warfarin after 9 months of trial - tricky figuring out the balance of health risk / quality of life with debilitating medicinal side effects - still I know there is a balance and with this community’s help I know I can get there! Thanks again.

[Jianna35]

I also have problems with Rapeseed oil, Canola. Which causes an immediate bowl evacuation. This is becoming more common.

[Advocate2286]

I’m hearing from my doctors that as my body fights APS the intestines become more poorly functioning, or there can be clots, so I’m getting the full work-up due to their concerns that I’m not absorbing the nutrients necessary - I’ll keep you updated.

[BeachHaven123]

Hi

I don’t know if this will help. But someone recommended only rice and peppermint tea for several days (3) and it worked. So sorry this happened to you too!

Feel better.!

💐

[Advocate2286]

Great to know, certainly easy to give it a try! Thank you!

[shinyeyes]

i suffered from severe gi problems for the last 23 years, eventually noticing pain leading into my gallbladder. i had tests done for it, but they came back normal or borderline hyperactive. 4 years later i was still having issues and they were worse. i work in healthcare and i was in the bathroom shitting water twice an hour all night. do you know how hard it is to bear someone else's body weight while you have to urgently poop?🤣 so i got a new primary care dr that had more tests ran on me and i ended up having my gallbladder removed. i barely ever have heartburn anymore, i dont have acid come up into my mouth when i bend over anymore, im not having 8 bms a day, my stomachs no longer in pain. when things are wrong with me, test results dont seem to reflect it. this is extremely frustrating as i appear as lying, yet when n they permanently fix the problem instead of just putting band aids on it, my complaints stop because my problems stop.

[Advocate2286]

great to know - helps me advocate for myself better in this system we call a healthcare system. Glad you found a resolution!