Stomach issues with APS?: Does anyone... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Stomach issues with APS?

Nanny23 profile image

Does anyone on here have stomach issues digestive issues with APS? I have severe constipation blood in stools bloating nausea and gas. Pain in upper right quadrant and lower right abdomen. Any help would be much appreciated. Thankyou

47 Replies

Yes I have these symptoms from time to time. If you have blood in your stools you need to seek medical attention, urgently. What medication are you on for APS? I had bowel bleeds on Warfarin.

Nanny23 profile image
Nanny23 in reply to Manofmendip

Only on aspirin no clotting problems. Tested twice for APS and both time anti cardiolipin came positive. My sister Debbie has this too. Unfortunately she has had numerous clots. She lost her leg January 2015 due to clots. She didn't know at time it was APS. I have had extensive tests for stomach issues. Colonoscopy showed diverticulosis and polyps. Nothing seems to help my stomach. I do also have hypothyroidism. THANKYOU so much for your response.

Manofmendip profile image
Manofmendip in reply to Nanny23

You are most welcome.

I was on Warfarin and 75mg Aspirin but I still had clots and other symptoms, including needing cardiac bypass surgery.

Prof Hughes put me on Fragmin instead of Warfarin and still the Aspirin too and I am very much better on that.

My colleague MaryF is away at the moment but she is very knowledgeable on thyroid issues and APS.

I'm sure that other members on here will reply to you soon.

Dave

Nanny23 profile image
Nanny23 in reply to Manofmendip

THANKYOU Dave. I do go to health unlocked thyroid and Mary has advised me on thyroid. Every one on site is so nice and knowledgeable. I wouldn't know anything if it wasn't for all of you. THANKYOU so much

Manofmendip profile image
Manofmendip in reply to Nanny23

It's a pleasure, I'm glad that my colleagues and I are able to help you.

Dave

THANKYOU so much for your reply. I was tested for celiac and I was negative. I have been on gluten free died for about 4 months. I lost 13 lbs. but still have stomach issues. Been tested for everything h pylori gall bladder colonoscopy endoscopy you name it I've had it. All it showed was diverticulosis and polyps which were removed. Unfortunately I still have persistent constipation bloody stools. I'm at wits end what to do. THANKYOU so much for your response. The people on this site have helped me more than my own doctors.

Yes I do.I have diverticulitis and always put this pain down to that.Recently had another colonoscopy and have polyp and diverticulitis is left side whereas pain is right.had check years ago n gall bladder ok.waiting for recall as on warfarin. I am seeing woman doctor tomorrow at my GPS as pain is sore n burning and as you describe.I have to take fybogel morning and evening else I wouldn't have a bowel movement next day.Still have haemorrhoids and these bled alot that's why colonoscopy was requested in first place.It's all doctors appointments and hospital visits that are continuous for us.

I have APS and pain on the right side of my upper abdomen. I've been in hospital and had a CT scan as the initially thought it was stones in my bike duct. It isn't that and they're know saying it's my liver. I'm due to see a liver specialist in 2-3 weeks. My liver function test was very deranged when it was tested a week ago and I was having other symptoms. I hope that they can diagnose what the problem is soon xx

Nanny23 profile image
Nanny23 in reply to Groovy

I hope your liver is ok. I too have had gall bladder tests and they are negative. Just had yearly physical and my liver function tests were normal. The pain on right side is where my liver is. I was wondering if it could be my liver but my blood for liver is ok. I too have constipation and bloody stools. Someone told me to try CALM MAGNESIUM CITRATE. it's on Amazon and supposed to help constipation. I just ordered it and will try anything at this point. Hope you stay well.

Groovy profile image
Groovy in reply to Nanny23

Thank you- I'm having pain right now so there must be something wrong. I get hot and sweaty before it starts- fortunately it's not too bad yet. I had my gallbladder removed so I know it's not that and the CT scan came back normal. I hope the tablets work for you xx

Nanny23 profile image
Nanny23 in reply to Groovy

Actually it's a powder. Sorry your in pain. It seems Drs should figure it all out but they don't. I know what your going through. I do hope it isn't your liver. But if it is I'm sure they have meds that will help you. I feel so bad for you hope you get to the bottom of this. I feel the chronic constipation I have complicates everything else. Who knows? Please take care and keep in touch.

Groovy profile image
Groovy in reply to Nanny23

Thank you. I've taken a pain killer and its eased it a little. Yes it would be good for them to have the answers and maybe one day I'll find out what it is x

Nanny23 profile image
Nanny23 in reply to Groovy

Hope you do me too. God bless and feel better.

Yes I've had lots of issues of this ilk, but don't know if it ties into the APS at all. Was diagnosed with IBS - I've gone on the low fodmap diet which has helped my symptoms massively, it might be worth you looking into this as an option?

Nanny23 profile image
Nanny23 in reply to Coppergirl

THANKYOU so much. What is low food map? I tried gluten free but didn't help stomach issues. I was also told I have IBS. I'll try anything at this point because as I get older it's getting worse. Thankyou

Coppergirl profile image
Coppergirl in reply to Nanny23

As Mrs Mouse says, get in touch with a dietician who'll run yuo through it. It can be hard work, but if it helps it's totally worth it. You have to take out a lot of foods from your diet and then reintroduce one by one to test if you have symptoms. It allows you to learn what things are your triggers. Good luck.

I have also been diagnosed as having IBS as the cause of my abdominal issues and went on the FODMAPs diet - I did this with professional help via my local dietetics service (to which I self-referred) - which has been incredibly beneficial.

However, as the first reply highlights, any unexplained blood in stools needs to be looked at asap by a doctor. If it's bright red and you have been diagnosed with hemorrhoids, that might be the cause but, please, don't take any chances.

Nanny23 profile image
Nanny23 in reply to MrsMouseSJ

THANKYOU for your concern. I have had colonoscopy endoscopy h pylori sonogram gallbladder full physical. Only they found is diverticulosis and polyps in colon. Still have upper right pain in stomach and lower right pain in abdomen. I do have hemoroids but had them banded. Constipation is severe. Hopefully I'll somehow find the answer to this mess. Thanks again.

You need to be careful with this ....sudden onset would point to possible infarcted bowel ...from clotting in abdominal vessels....my wife just had this.....so get a gastro workup if you can.

Nanny23 profile image
Nanny23 in reply to bcod

How would they find that? I've never heard of that before. I hope your wife is ok. I have had endoscopy and colonoscopy found diverticulosis and colon polyps. THANKYOU so much for your reply. Stay well

Debbweb01 profile image
Debbweb01 in reply to bcod

This is very interesting as my sister is Nanny 23! I've had diverticulitis for 10 years and 6 tummy surgeries later! Three of the surgeries were emergencies! My last tummy surgery was due to blockage with twisted bowel and it caused an O eruption! Is this common with vascular issues in the intestines! Wen I went to hospital on the Sunday, they tuk one look at me and I was tubed immediately! The Friday I spoke to my tummy doc and told him I was in massive pain and thought I had a blockage! His answer( because it was Friday afternoon) was that I had a sonogram and had a small hernia! I told him to please give me something for the pain and he told me I shu not have that much pain with hernia! I told him it was a blockage! He said wait till Monday! I couldn't and wen I GIT there my intestines were dying I had 24 hrs left of life in my intestines when I got there! I'm now curious about this vascular thing ur wife has! They've told me this cud happen again! I hope your wife is doing well! I'm just curious about this now! Thx in advance for anything u may tell me and my sister as we both have APS & Stomach Issues! Godspeed

Thank you so much I'm on 50 mcg. Synthroid. It's all so complicated.my stomach has always been sensitive it's just getting worse

Lynn what u always forget to do is very important! You NEVER TOLD UR TUMMY DIC YOU HAVE APS! How can he help u with anything vascular if u keep ur head in the sand about having APS!!! You MUSTcall him to let him know this! If he don't know the disease let him research it! You must tell every doc u see!!! If u forget you must make it ur business to call back and let them know! This is a VERY IMPORTANT ASPECT OF YOUR PROPER TREATMENT! I can't impress u enough as to how very important it is! These people on this site have thyroid and some have APS too, but I'm sure they let their doc know they have it!!! Please do this for ur own good!!!

Nanny23 profile image
Nanny23 in reply to Debbweb01

I didn't tell him cause he probably never heard of it. Dr. Siegelheim knows so does dr. Donnelly.

Debbweb01 profile image
Debbweb01 in reply to Nanny23

Still no excuse for not telling him! How do u know he don't know of APS??? This cud change ur whole treatment regiment!!! C'mon u must get with the program and stop this head in sand! He may very well know and if he don't, just think you'll be educating him!!! Lol...

I had severe abdominal pain a few years back. Turned out to be my gall bladder. Had it removed and no problems (at least with that) since. Do you notice the pain is different depending on what you eat?

Nanny23 profile image
Nanny23 in reply to Holley

It just gets worse as the day goes on. All gall bladder tests negative. Don't know why continue to have problems. Thanks for your support

Holley profile image
Holley in reply to Nanny23

My tests all came back negative too. When they operated on my gall bladder they sent it to the lab and the report was not good. Totally infected. It's really annoying that some many things affect us. Not knowing what's causing something is the worst part.

Nanny23 profile image
Nanny23 in reply to Holley

You are so right. Wish I could figure my problem out. Thanks for your response

I also had stomach issues , in fact my APS started as ischemic collitis and two other superficial clots before being diagnosed 6 months later. I am also anemic and was put on iron supplements, so I thought diarrhea was from that, so changed the brand I was taking and it was better for awhile. I have had colonoscopy endoscopy , and ct with dye and they found no reason for bleeding, later a dr looked at hospital records and said I had internal hemorrhoid that probably acted up when warfarin levels got higher but they never had me go in, just treated my anemia with iron supplements and Venefer. I have since done a lot of reading on nutrition and have eliminated dairy, (I believe I was allergic to lactose) wheat, and sugar. I had bought a b12 that had lactose in it, and started issues all over again. I would start an elimination diet to see if symptoms improve. Healthy foods have become my medicine.

Nanny23 profile image
Nanny23 in reply to Aktop

THANKYOU so much for replying. I am gluten free eliminated dairy for a month and got no relief. Don't know what else to do

Aktop profile image
Aktop in reply to Nanny23

I want to recommend a book that might be helpful. It's called Medical Medium, secrets behind chronic and mystery illnesses and how to finally heal, by Anthony Williams. This book is an eye opening book, it's about healing with foods and supplements. He knows how to heal just about everything, this book is my bible. He described my shingles before I got my clots to a tee, and my frozen shoulder that I got after as being shingles. My dr had told me it was tendinitis . I ate foods in this chapter and it went away just like that, no physical therapy. This book might be conterversial to some but he has helped so many people, you have to have an open mind, and remember it's just food. You can also look up his free videos on you tube, Facebook and sound cloud . He also has radio show on Hayhouse on Mondays at 2:00 pacific time, also free. He does a show on gut issues on a radio show and has chapter in book. Hope you at least check it out.

Nanny23 profile image
Nanny23 in reply to Aktop

I will buy it on my nook if I can find it will try anything. THANKYOU do much

Nanny23 profile image
Nanny23 in reply to Aktop

Just found it on my nook downloaded it. It has rave reviews. Maybe I'll find some answers. THANKYOU so much

I have the opposite. Diahrea for 3 weeks now. Losing weight and not absorbing vitamins well. Low B12 and D3. Allergies to dairy and egg but stay away from it. Do t want a belly ache. Tested for gluten , that's not a problem. Allergies do have so much to do with our guts. Did stop Lyrica 3 weeks ago slowly.

Nanny23 profile image
Nanny23 in reply to Karen56

THANKYOU for replying I have allergies pollen dust mold but no food allergies o can find. I am gluten free but it hasn't helped my stomach. One day I'll figure it out. I hope lol

Why do we all have such bad Allergies! I find that with APS we all have terrible allergies! Is allergies autoimmune too???

MaryF profile image
MaryFAdministrator

The first thing I will ask is are you ok to eat gluten, as many find it difficult, my second is are you drinking enough water? and my third is have you had extensive thyroid testing, as constipation can be associated with a slow thyroid. MaryF

Nanny23 profile image
Nanny23 in reply to MaryF

Hi Mary went glute free 6 months ago didn't help with stomach issues it still don't eat it. I am hypothyroid on meds and drink loads of water. Don't know what else to do. Thanks for replying

MaryF profile image
MaryFAdministrator in reply to Nanny23

Unfortunately the state of thyroid care particularly in the UK is diabolical, one medication and usually only one test. Most GP's and even the labs will not entertain these tests below. I do them all regularly and pay for them as they show an accurate picture of what is going on, I also pay for my own natural desiccated thyroid medication which is far superior in the way it works, however some manage to get it via the NHS on a named patient basis only. There is also a DC102 genetic blood test which shows who can and can't convert the synthetic T4 (levo) to T3.... which helps with the battle. Do join TUK on this platform who are working hard for change and give great advice. thyroiduk.org.uk/tuk/testin...

MaryF

Nanny23 profile image
Nanny23 in reply to MaryF

I have joined TUK I go on thyroid health unlocked too. Amazing forum. I live inUSA. Drs do same here I'm afraid. Thanks for your response

MaryF profile image
MaryFAdministrator in reply to Nanny23

If it is good enough for her it is good enough for you: hypothyroidmom.com/presiden...

MaryF

Yes it was negative. I am gluten free but hasn't helped with stomach issues unfortunately. Thankyou

Yes I had same blood in my stool been sick and bad pains in my tummy bloating had to go have camera down and up my bottom iv got celack disease can not spell it hope that helps x

This happened to me and I was going to tolet as soon as I sterner eating was sick and blood in my poo whent to doctors and was sent to hospital iv got celiac disease too now just put my on gluten free diet I still ok when iv eaten normal food so was confused but good luck you need to see a doctor

Nanny23 profile image
Nanny23 in reply to Lesley61

Thanks so much. I'm already gluten free but it didn't help me. Still am cause I don't miss it and better with thyroid issues which I have. Hope you're doing better

Yes negative for celiac.

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