Gastro info & support

[EOLHPC]

Hello all

Following on from my current saga of investigations into the flare of my chronic lower GI symptoms which began last October....I've just finished the first week of putting into practice my new gastro/uro/gyn physio's instructions...which has been interesting...am doing ok, I think🤔😉

Meanwhile, now that we've done enough investigations to have a shrewd idea of what's been going on inside down there all these decades (haha), I've let myself seek out a good gastro website...and I think I've found a real 🌟!

See what you think...the link is below. Most important: SLE & other connective tissue disorders are mentioned several times in this website's sections on various gastro topics! because my chronic upper GI probs were all thoroughly investigated & diagnosed (with effective treatment plans set up) many years ago, i feel i can say this org's info on upper GI matters is pretty good...and the info it gives about lower GI matters seems just as sound to me

I'd love to know what you think of this website!

i felt slightly irritated & skeptical at first re the 'FUNCTIONAL' part of this org's name, but, having read through their info, i think this term doesn't actually mean the org is discounting the serious implications of 'functional' gastro conditions: quite the opposite...

International Foundation for Functional Gastrointestinal Disorders Website:

iffgd.org

[Purpletop]

Looks really thorough, thank you for sharing x

[EOLHPC in reply to Purpletop]

👍😘🍀

[noonoo52]

Hi coco, thanks for the info I have just looked at it quickly and I think it's the first real explanation for two of my problems, good spot finding this site coco, do you feel more informed now. I am going to have a good read tomorrow all of it as having a day of catching up and relaxing as had three busy days this week and need a bit of a rest. I will speak tomorrow. Take care Nx

[EOLHPC in reply to noonoo52]

Hello Noonoo...oh good: it's an incredible site...really solid bang up to date honest info communicated in doctor-speak without being impossible to understand...I cannot believe I found it, just when I really need it...hope it helps you too. Glad you're relaxing 🤗😘🍀

[grannyjogger]

Thank you Barnclown, I'm going on here now. I had an appointment this week and am now on the list to have my gall bladder removed. I've spent years on high doses of PPIs for excessive reflux (hiatus hernia), I've had Helicobactor Pylori which caused gastric ulcers, am possibly gluten intolerant........and so it goes on. Have not yet got a diagnosis of Lupus although have many of the symptoms including the malar rash. I've been diagnosed with undifferentiated autoimmune disease, Sjorgens, RA, sub-acromial impingement, COPD and more. But of all the symptoms it's the GI problems that cause me most grief.

Thanks for sharing.

[EOLHPC in reply to grannyjogger]

Wishing you good luck with everything grannyjogger (great name): you've been through such a lot...sounds like you've got great coping skills...you're vvvv experienced: when you've had a good read, I would love to know what you think of this site's info! 🤔😘🍀

[knitsandie]

Well done Barnclown for finding a very informative and straightforward set of articles. I read the majority of the sections and would recommend anyone who needs to know how their gastrointestinal parts work to read it too.

I haven't got problems in that area luckily. I do have a couple of non lupus friends with GI issues so will forward the article on to them.

Thanks!

[EOLHPC in reply to knitsandie]

I'm so glad of your enthusiasm! 👏👏👏👏 Makes me more confident in mine. This site is so 'reasonable', thorough, humane and so clearly authoritative...that i find it absolutely dreamy! And I did end up spending ages on this site, because I kept discovering further info just when I thought I'd clicked on every subject tab: I'd recommend perseverance & ingenuity to anyone hunting info on here! There is literally LOADS of info about virtually all aspects of gastro function, dysfunction, observation, investigation, testing, diagnosis & treatment

This week, just when I needed help processing theinvestigating, diagnosing & treating of my chronic uro/gyn/GI stuff, this site has got me feeling much more informed & empowered about engaging ongoing with my medics at all my clinics: HURRAH

Thanks so much for your thoughful, encouragement

👍🌟🍀

[molly19]

Your are amazing in researching things.

[EOLHPC in reply to molly19]

I try Molly...legit, quality sites like this one help me cope much better...it's just my way of coping. And positive feedback re my links from others here helps me feel more confident. And if any of my links help anyone here, I feel v happy 😉🍀

[molly19]

Pleased for you. 😊 x

[Hidden]

Thanks and good timing. My son has just been told he's not absorbing vitamins and minerals including vitamin d, he has IBS. This site gave some good info for him to read. I hope he's not following in my footsteps.

[EOLHPC in reply to Hidden]

Jackpot! Am sorry your son has this to manage...and I do vvvv much hope things improve for him. I feel so so happy that this website can help....thanks vvvvv much for letting me know! 👏👏👏👏Take care johare 🍀😘

[Bebe76 in reply to Hidden]

Has he been teates for Coeliac disease? I don't think IBS normally leads to absorption issues

[EOLHPC in reply to Bebe76]

My husband has IBD in the form of Crohn's disease, and does have absorption issues. As I understand it, any chronic inflammation of our GI system can lead to some degree of absorption issues

[Bebe76 in reply to EOLHPC]

Hi Barnclown. I thought IBS= irritable bowel syndrome and IBD=inflammatory bowel disease?

[EOLHPC in reply to Bebe76]

Correct. And this brill website gives me the impression that the inflammation involved in both IBS & IBD & any other type of gastro inflammation can cause absorption issues, each in its own way

[Bebe76 in reply to EOLHPC]

Thanks Barnclown. I suppose I am always wary of an IBS diagnosis because I was initially told I had IBS but due to the severity of my symptoms I pursued the matter further and was eventually diagnosed with Coeliac disease!

[EOLHPC in reply to Bebe76]

There it is: am sorry you've got coeliac, but I so respect that you pressed for the accurate diagnosis of an underlying cause....I've spent a lifetime coping with my lower GI probs while Drs led me to believe they were "only mild"...I haven't pressed for a more convincing diagnosis until now...partly because my lower GI probs seemed like nothing compared to my husband's crohns (and his sister's crohns...which is even worse)

[Bebe76 in reply to EOLHPC]

Yes, GI problems can be tricky...symptoms can sometimes be vague and I found the GI docs often played down the severity of my symptoms. (Kind of like the treatment some of us get prior to our lupus diagnosis!)

Glad you are finally on the road to getting some answers!

[Bebe76 in reply to Bebe76]

Sorry I mean TESTED! Can't type today

[Hidden in reply to Bebe76]

The gp said bloods were clear of other inflammatory problems(heard that before) but he has had a colonoscopy prior to haemarrhoidectomy. Bowel inflamed but other causes discounted.

[Hidden]

Yep his IBS has been since he was 13, then piles as a result. Couldn't play football, devastated........But he was never monitored and they don't seem to take IBS seriously. Presently he has been so tired, pale, achy, yep you are starting recognise our problem, only 23. So sent him for blood tests. Hoping its just his bowel not taking fat soluble vitamins. Thankyou

[EOLHPC in reply to Hidden]

Oh gosh...poor lad....early onset piles was one of my awful probs - apparently due mainly to my ehlers danlos hypermobility, but definitely linked with my infant onset lupus. You will be making all the diff for him now, I'm sure! 🍀🍀🍀🍀🍀😘