Are gut issues and hiatus hernia common to HS?

[MrsMouseSJ]

Are gut and bowel problems common with HS? I have had on-off gut/bowel issues for years (although only HS diagnosed last year) - some days when I have a lot of pain - sharp usually - in the bowel area; others when I have a sensation of a very great pressure under my sternum and down the right side of the front of my rib cage, often later succeeded by difficulties breathing and then relieved by the most incredible belching; and some days with acid reflux. Then nothing for days or even (bliss!) weeks. I have now also been diagnosed with a hiatus hernia. Does any of this resonate with others with HS? And any advice? I am loathe to take Omeprazole (a PPI) every day ad infinitum - stomach acid serves a useful purpose when not causing me horrid symptoms. I have considered a low GI diet; I already cut out dairy and gluten. Are there any other drugs or even doctors I should be considering? I am in the west of Scotland so don't have access to the London-based specialists although my rheumatologist is very supportive. Many thanks in advance! (have posted similar on Lupus forum, by the way)

[MaryF Administrator]

Hi, others on here have had similar issues, but I did find this paper for you: ncbi.nlm.nih.gov/pmc/articl... With gluten intolerance it does take a while to toally leave the system. For myself, although not have your specific problem, it has taken a whole layer of irritation out of my body, also lost me my water retention and endless sneezing and itching. I have yet to find somebody who had not improved, if they have stuck to it! Also.... there are consultants on our charity website in Scotland if this would be of interest to you: hughes-syndrome.org/self-he...

I am sure other members will answer you with more detail as the peer support and swapping of information on here is very useful, and lots are on similar diets to you, and may have tried some of the same things.

MaryF

[MrsMouseSJ in reply to MaryF]

Hi Mary. Many thanks, as always, for your advice. And for the paper - I had come across it via a Google search but it just wouldn't open, so it's great to get your link - which works!

[MaryF Administrator in reply to MrsMouseSJ]

Good, I do try and load up the ones which will open, or if in a shortened version at least carry some readable advice or info. MaryF

[donnabrain]

I have all of the above,gut problems, hiatus hernia etc, and do take omeprazole daily,it I miss a dose the acid reflux comes back within an afternoon.

I am having a scan next week as I complained of pressure under ribs and gp suspects gallstones

I am looking into going gluten free soon

[MrsMouseSJ in reply to donnabrain]

I would like to say it's nice to find a fellow sufferer but, really, it isn't, if you see what I mean. I'm sorry for you but glad the Omeprazole seems to work, at least for some of the symptoms.

[donnabrain]

lol, know what you mean mrsMouse, think I,ll take a look at that paper too now that I have coffee

[GinaD]

Hietial hernia becomes a structural problem. My Mom had a horrid one which caused years of misery before she finally had surgery to repair it. By then she was well into her dementia and only had a few years left. Sigh.

She never listened to me when I urged her to try a GF diet. Of course, my physician Father and his partner tried to convince her when I was 4 that I had Celiac but she refused to believe them. The marriage was already in trouble and she just knew that this " impossible" diagnosis of Celiac was just part of a plan to make her life ( as family cook) more miserable. So for me as an adult to find out that I do have Celiac, that eating gluten for years is the probable cause for a sickly childhood and adolescence, and that Father tried to put me on a gluten free diet when I was 4; given all this, ( AND her dementia!) it was no surprise that she ignored my pleas that she try a gluten free diet.

But boy! If I was right and she too had gluten sensitivity, did she ever suffer the karmic consequences! Hietial hernia, many gastric and duodenal ulcers. Irritable bowel syndrome. Pancreatitis ( that was awful!). Gallbladder removal. An ever diminishing list of foods she could not eat -rice, oats, chocolate, fatty foods, raw veggies, basil, oregano, milk products, . . . ( gluten free would have been so much simpler! But by that time her gut was so damaged it would have taken more time then she had left to see any improvement.)

I certainly hope you are not headed down that road! But I do know that there are some hietial hernia tricks that Mom found did help. and boy! Did she have experience living with it! If you esophogus goes into spasm try taking a series of small sips of room temperature water in rapid succession. Avoid colas. Drink water instead. Avoid foods that will easily get caught in the hernia --like rice and corn. But do try to keep other raw veggies in your diet.

And the success rate of the repair surgeries is much better now then it once was. If things get worse do research that option. If West Virginia has surgeons who can preform repair surgery well , I'm sure Scotland does too!

Good luck.

[MrsMouseSJ in reply to GinaD]

Hi GinaD. I always enjoy reading your posts on this forum; equally so with your reply which has given me much needed laughs! And your poor old mum! Although, perhaps I, too, am suffering some karmic consequences - I think I must have done something dreadful in a past life..... I have been tested for celiac on two or three occasions - but I'm not sure how reliable the blood tests are (all that is available on the National Health Service for most people). A former colleague was told for years that she didn't have celiac, which she went along with - despite on-off dreadful gut symptoms and generally feeling more and more unwell. Anyhow, she eventually thought 'stuff it' and went GF - well, within 5 days she felt better than she had in years and within 2 months she discovered she was pregnant (she'd been trying for 15 years!). When she spoke to her doctor he pronounced 'happy coincidence'. Yeah, right..... In any case, I've been GF for almost 10 years now. But I do wonder if I have had the hiatus hernia all this time without it being diagnosed - I had a gastroscopy back in 2004 which found no abnormalities, but have now read that other people have only been diagnosed on their second or third gastroscopy, despite having had the same symptoms for ages. I'm sure we have some very capable surgeons up here - but it's finding the right one and then getting them on the 'good old' NHS; which can be a bit of a lottery. Best to you.

[GinaD]

Sounds like you are keeping an open mind vis a vis causes and diagnosis --and Mom surely did not!

There is classis Celiac and also " gluten sensitivity.". And I do not know if there is a test for gluten sensitivity.

Have you explored posture issues? I discovered the Alexander Therapy stuff which attributes a large number if problems to bad posture. I do not live close to any Alexander Technique therapist but I have benefited from website tips, etc. I have no idea if that is relavant to anybody's ,much less your's, hernia issues, but it might be worth a web search. I have certainly become much more aware of how I hold my head and the number of late day neck aches I get has diminished.

Good luck!

Gina

( and thanks for the kind words. My BFF predicts(. Hope not!) that if I am ever diagnosed with cancer or some such that I will only tell her if I can frame it as a joke or humerous story which will make her laugh. Which sounds like a good plan to me.)