Does anyone get a sore stomach? - Hughes Syndrome A...

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Does anyone get a sore stomach?

ciaronsmum profile image
14 Replies

I often get a sore stomach. Sometimes it is mild, sometimes a bit stronger and even put me in hospital for a few hours once! There is no ulcer or anything like that, so i wonder if it is the hughes causing it, or perhaps medication?

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ciaronsmum profile image
ciaronsmum
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14 Replies
Suzypawz profile image
Suzypawz

Hi hun,

I get a lot of problems with my tum :(

I take lansoprazole for mine, as they say it's wise when your on Warfarin.

But I have had quite a few problems with the stomach area & eating for a few years now.

Still havn't got to te bottom of it, it's more of a twisting, cramping I get in the middle of the area & a horrid pain in my 'ex gall bladder' area which I can only describe as a rough 'marble' turning & moving which worsens when I eat, (like the other does too,) had scans & x rays & still not sure whats going on.......still being looked over now!! :)

Are you on lansoprazole?

I havn't heard or seen you for a while.......would love to meet up again :)

Hope you are ok apart from stomach probs? x

ciaronsmum profile image
ciaronsmum in reply to Suzypawz

Thanks Suzy. Mine is sore at the moment, but sometimes it cramps and is absolute agony. I don't take anything for it though. Perhaps i need to mention it to the doctor.

I don't work in Burton much anymore, but when i am in the area, i will let you know so we can meet up again. x

Suzypawz profile image
Suzypawz

Aaaahhhhh it would be nice to see you again :)

Docs once said it may have been IBS...but they've crossed that one off too?

It has been so bad it's even put me off eating a proper meal for days!!

I hope you improve soon, Sue x

Suzypawz profile image
Suzypawz

Hi hun, yep I've mentioned this & they dont go for it? they also checked me for celiac disease recently & that came back negative?

I reckon I'm going to bring it up again myself next time I see doc' & try to see what happens without it too? but its the gall bladder area thats stumping everyone mainly with me? x

Helene profile image
Helene in reply to Suzypawz

Suzy, does your pain feel like the pain you had before you removed your gall bladder? On your right side, just under your lowest rib, spreading out perhaps, but mainly where your gall bladder used to be? You might have Sphincter of Oddi dysfunction, a complication from your gall bladder operation. I had pain almost every day, usually many times every day, especially at meal times, for 14 years and now my pain is gone! To diagnose Sphincter of Oddi dysfunction (SOD) I had Botox injections into this sphincter and as Botox only lasts for about 3 months the pain then came back, a clear sign that SOD was the reason for my pain. A small operation to widen the sphincter have solved the problem. Unfortunately I contracted mild pancreatitis as a result of that operation, but that was a small price to pay for stopping 14 years of pain! I had my operation in May and have been pain free – in that area, since then. I hope it won’t return :-)

It would be worth asking your gastroenterologist about SOD and if you could try an injection of Botox just to see if it is of help to you. SOD is a very specific problem that in some cases occurs after removal of gall bladders, and will give pain just like gall bladder pain – not to be confused with more general pain from the upper or lower stomach if you have acid problems or IBS. You can Google ‘Sphincter of Oddi dysfunction’ for more information.

Take care, Helene

Suzypawz profile image
Suzypawz in reply to Helene

Really? & yes...it feels just like it did when I had my gall stone there before they took the gall bladder away?

I am awaiting an appointment to see a surgeon to see if he can shed some light on it....I am going to mention this to my gp or him if the appointment comes soon.....it has been going on too long now & sometimes I feel they think its all in my mind :( but yes it is worse at meal times.

I will look into it, thank you, Sue x

Suzypawz profile image
Suzypawz in reply to Helene

I have read the google links & it certainly sounds like a huge possibility that it could be SOD!!! why cant docs / specialist ever come up with the possibilities? why do we have to do our own research or advice off others to find out whats going on?

Thanks again for this, it does state it could cause other complications if it is it & its operated on.....but there are the other optionsto try first too..............

I am chatting with doc' tomorrow so I shall mention it to her & see what she thinks?

Thanks again, hope your ok x

Helene profile image
Helene in reply to Suzypawz

Hi again Sue, SOD is a complication not well know by doctors, I am very lucky to have a gastroenterologist specially interested in this topic and I was referred to UCHL to a gastroenterologist specialising in this field. If you are ever going to have the operation you would want to have a surgeon who has done many of these operations before, not one that does the occasional one.

On my VERY long list of medical issues, SOD was more of a minor one (I have just dislocated my hip replacement and had another DVT whilst on Fragmin, just to mention the last 6 weeks events), but for every issue that can be resolved and ticked off the list – or at least explained and I can get a name for it, I get a bit of peace. It does matter on the grand scheme of things :-)

Hope you can get an explanation to your pain, good luck!

Suzypawz profile image
Suzypawz in reply to Helene

Thanks again, all the best with your issues too......we all seem to be getting them :(

Take care x

cami profile image
cami

Hi Yes I have stomach problems and take inexium for it. In France you are always given a stomach protector when given drugs. My doctor said with aps its the blood supply or lack of it causes problems. I have had the camera down the stomach and it just showed inflammation. There is stuff about it if you Google. Certainly some foods make it worse...bread and potatoes I find difficult. x

ciaronsmum profile image
ciaronsmum in reply to cami

Thank you for your thoughts. I will ask about a protector as i think the soreness is probably due to the meds. it seems to flare up and then calm again for a while. x

ciaronsmum profile image
ciaronsmum

Hi. I have always had IBS since being a small child. Gluten has never been mentioned, but i always thought that sort of pain would be lower in the bowel? I will ask next time i go thank you

olleberj profile image
olleberj

I recently had abdominal pain that I thought was perhaps due to constipation. I finally went to the emergency room and found that a normal ovulation caused a bit of bleeding that didn't stop because my blood was so thin. I was bleeding into my abdomen for about ten days and didn't feel it until that tenth day when the pain got so bad I decided to go to the emergency room. I had emergency surgery, and they removed over two liters of blood, and one ovary. My body ended up losing nearly half of it's entire blood supply, which had to be replaced by several blood transfusions. In other times past, when my INR was too high, I felt like I had stomach cramps.

My recommendation is that you take persistent abdominal pain seriously, especially if your INR is high...it could be a sign of internal bleeding.

LucyLocket profile image
LucyLocket

This is such an interesting thread to read as I'm in the middle of trying to find out what's causing terrible IBS-type pain, wind and diarrhea. I'm due to have a blood test for coeliac on Friday but am sure this will come back negative again as it did a few years ago. I didn't realise that Professor Hughes has already found a link between APS and a problem with gluten. After my test on Friday, I am going to start on an elimination diet for gluten for 6 weeks to see if this makes a difference. I suppose what is really annoying is that if you get a positive test for coeliac then you can get gluten free foods on prescription whereas I guess that if you only find this out yourself, you get zilch!

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