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Hils

Is CREST linked to Hiatal Hernia?

10 posts in this topic

Hi, I've just found this site. I've had CREST for years and luckily its mild. Last week I had an endoscopy and found a large Hiatal Hernia and the majority of my Oesophagus has Barrett's Epithelium. I also have a lump under my right rib cage which is being scanned next month.

 

Is the CREST and Hernia linked and has anyone else experienced this?

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Hello Hils,

 

Welcome to Sclero Forums! I'm sorry it's because you have CREST, but I'm glad you found us.

 

I may be wrong (I often am) but I think hiatal hernias are probably fairly common both in scleroderma and in the general population, and it is a contributing factor to acid reflux. I have a hiatal hernia, but so did my husband (he had surgery to fix his) and he doesn't have scleroderma at all.

 

It is the Barrett's Esophagus that is more serious and more unusual, and tied more closely to scleroderma.

 

Luckily there are many benign things that can cause lumps, so I hope that your scan next month goes fine, and that the matter is treatable. If it were me, though, I'd sure wish that scan was about 5 minutes after the lump was found. It is such a challenge to learn how to take such things in stride, and not be consumed by worry in the meantime.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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I did mention my lump to a very young houseman a couple of years ago, and he said he thought it was a hernia of some sort, but could only be felt when I stood up. He obviously didn't put it on my notes because it wasn't mentioned again until I did a month ago, as I can now feel it when I lie down too. Am I falling apart?

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Hi Hils,

 

Yes, you are definitely Falling Apart! :wacko:

 

It reminds me of the old story, that the secretary walked into her bosses' office and started falling apart.

 

"Yup," he soberly reported, "Her arms fell off, her legs fell off..."


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Hils,

 

Welcome to the Forum!

 

I tried to find some statistics for you about the number of people with hiatal hernia. I knew it was common - apparently 60% of people over 50 have a hiatal hernia and many don't have any symptoms or are even aware they have one, according to Wikipedia, anyhow. Here's their info on the subject.

 

I also have a hiatal hernia and had it repaired during a Nissen fundoplication surgery to treat my GERD. Some of the risk factors are age (yep), over-weight (yep), pregnancy (huh, more than just gray hairs to blame the kids for~), smoking (missed out on that one), coughing, heavy lifting, and constipation that causes straining during bowel movements.

 

y'know, I never considered that 'hiatial' came from 'hiatus' - an interruption or break, I just thought it was an anatomical feature. Sigh, there goes my passing grade in both Anatomy 101 and English for the Vocabulary Challenged~

 

Falling apart? Could be.... Better than 'falling out', if you know that expression!

 

Keep posting! We're a good bunch. If your leg doesn't fall off of its own accord, we're likely to pull it until it does! :lol:


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Thank you for your warm welcome. Are you all in the USA. I'm in England not far from Stratford Upon Avon and deep into Shakespeare country.

 

I'm waiting for biopsy results and getting myself, quietly, in a state. My husband can't and won't talk about it, never has, never will... so I'm feeling a little isolated.

 

What if the biopsy comes back and shows cancerous changes, what treatment choices do I have, if any?

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Hi Hils,

 

We come from all over the place. We have quite a lot of active members from the UK, NZ, Canada, Australia, and scatterings from non-English speaking countries. We even host a Forum for the UK's Scleroderma Society. You might want to check that out because sometimes we have notices of their meetings, etc.

 

We' have a section on Barrett's esophagus, but for now we're going to concentrate on you not having cancerous changes for the moment, OK? I know you must be scared to death, but it's pretty hard to predict what your doctors will recommend if there are cancerous cells. A lot would depend on the number and location, as well as what standard practice is where you are being seen. So for now, please try not to worry too much. Think positively, eh? With all of us on the job, that's a lot of positive thinking!

 

I think husbands in general don't like to think about or talk about anyone's illness, much less their wife's. Mine is from Yorkshire and although he is a big strong lad with a very stiff upper lip, he is just like your hubby. Come to think about it, both my sons and my son-in-law are the same. My two girls want to know every gory detail and possibility. It makes it hard sometimes, because we need to verbalize our fears and face them in order to move on to whatever comes next. And then, of course, we women tend to want to be the protective ones and this role reversal comes hard.

 

Warm hugs and the very best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hello Hils

 

Welcome to the forum! The falling apart thing could run and run so I won't add anything to it, mainly because I can't think of anything witty to say!

 

My youngest step son has a hiatal hernia and doesn't have scleroderma, that's my speciality.

 

Like yourself I'm in the UK, in Essex and I host a local group for the Scleroderma Society, the Society has other groups around the country that meet periodically that may be of interest to you.

 

Let us know the result of your scan and take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Hils

 

A warm welcome to this forum to you from yet another UK sufferer. I'm in West Sussex & also host a local group for The Scleroderma Society. :bye:

 

Thankfully I've never had a Hiatal Hernia; although my husband had an inigual (sp?) hernia which was operated on very successfully.

 

I look forward to reading your posts. :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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