sjogren's is serious!

[Markergw]

When I was first was diagnosed with Sjogren's, it seemed just a 'nuisance' disease...you know, dry eyes, dry mouth etc. I had no idea it could have so many repercussions!!

Three years ago, I experienced a perforation during a colonoscopy and was rushed into emergency surgery. The fascia wouldn't stay closed and I ended up having a second surgery 10 days later. I ended up with a 12" long incision and 5 retention sutures going almost all the way across my belly. Even then it didn't want to close. 32 days in Hospital and daily nursing care at home for almost a year; and then it still just wouldn't heal. Almost a year later, I required a plastic surgeon to close it. I am all scar tissue inside now and still have issues to this day.

Sjogren's is not just about eyes and mouth. It is a serious disease that can easily turn deadly. Most hospital doctors (and wound nurses) did not even realize this. I looked 'normal' on the outside but inside it has caused so much damage. Not sure doctors are fully educated on this syndrome. It has progressed in other areas too, but this was the scariest so far.

Just a warning to be very careful with it.

[honeybug]

Hi Markergw

My heart goes out to you for the horrific ordeal you have been through.

I have had abdominal surgery and the surgeon found massive adhesions when I was first opened up. It took him over an hour to remove which can make them return post surgery. Still have problems with my GI tract. I had problems with healing both cuts in and outside. I accidentally chopped off the tip of my thumb with a chefs knife which took 9 months to heal. After hearing your story I wonder if my problems were related to my Sjogrens too.

I agree with you about Doctors unfamiliarity with this condition and the full scope of complications it can cause. It is up to us to teach them about it.

I have made a home charts with my test op and pathology reports plus meds list including meds allergy notes personal observation notes and shot records. I take it wherever I go so this info is with me if

needed.

I hope and pray that your future will not be filled with similar scenarios. Thank you for sharing this with us.

Sending you cyber hugs and love.

😊🌸

[Markergw in reply to honeybug]

Thank you, honeybug.. I just wanted those with Sjogren's to be aware of the possible serious implications of this disease. I wasn't and almost died from it. Make sure your doctors know what Sjogren's can really do to you...so many don't!

[honeybug in reply to Markergw]

Thanks to you all of us have learned a life saving lesson.

The more we share and care the more we all can benefit.

Thanks again and best wishes.

😊🌸

[Hidden]

Hi Markergw - I agree with you - It is much more serious than most people realize. Like you, when I was diagnosed, it was kind of "hey - you have Sjogren's" (this from my rheumatologist) and "take this pill" (Pilocarpine). No sense of drama or seriousness about the exchange. Kind like "Hey there, you have a zit...)

Oh my dear, that is a lot (correction LOTLOTLOT) to deal with. I am so sorry that you have had such a hard time.

You know, even eyes, nose and mouth are pretty serious. I have been so dry eyed for so many years that I continually scratch my corneas, and it can lead to blindness if I can't keep the moisture in. In the nose area, I had sores that would scab over and bleed constantly, and my dentist told me how bad some people's mouths are (physically, not language ha ha), so even those are pretty bad.

But it can cause heart problems, digestive, etc. Anything with a mucous membrane can be at risk.

Here's hoping that you are feeling better. Have a great weekend!

[Markergw in reply to Hidden]

Thank you! Note to all: Although some medical personnel are aware of the various very serious potential issues with Sjogrens, so many of them are not. If you suffer with this, make sure your doctor up to date on Sjogrens.

[Hidden]

I couldn’t agree more. I was initially diagnosed with RA and then this was changed to seronegative Sjögren’s due to the severity of my neuropathy and a highly positive lip biopsy result. Basically in my case it’s very like MS and quite like Parkinson’s - and this is a more common presentation if you are seronegative/ lip biopsy positive.

It’s also a very underrepresented presentation of Sjögren’s because, despite definitively having this disease, we aren’t included in clinical trials as you have to be Ro / SSA positive to take part.

It’s so hard getting this across to GPs and other doctors but harder still to friends and family. Presumably they go online and see what most info tells them - that it’s dry eyes and mouth and in most cases these are managed with topical meds - very little mention of it being a severe systemic disease affecting every part of us?

My late mother had very similar problems to those you describe. It’s my belief that she had Ehlers Danlos Syndrome (EDS)and that I have it too. Basically a skin was very stretchy and this affected her intestines so kinks formed and eventually this turned into a large knot which completely obstructed her colon and stomach and she almost died. They removed a lot of gut and she had awful pain and fecal incontinence. She had previously been told that the scar tissue from an episiotomy has stretched across her and right up her colonic passage. A classic form of hereditary EDS I believe.

I have similar scarring vaginally and suffered sepsis following keyhole gallbladder surgery - when the surgeon discovered that my gallbladder had become attached to my liver. I’m hypermobile so I’m guessing I have EDS too - secondary to Sjögren’s perhaps. Anyway I too blame Sjögren’s because i am told it makes my blood very viscose (thick) and my feeling is that viscose blood can’t be anything but harmful to me. It’s not only affected my nervous system but also my autonomic nervous system and kidneys. The dry eyes are just the tip of the iceberg. I know EDS is often under diagnosed and equally underrated and can go hand in hand with rheumatic diseases. I also have longstanding Hashimoto’s.

I’m in UK and got a Sjögren’s alert card from the BSSA which I carry in my wallet. Since being registered in my new GP practice I’ve had 2 GPs revise their previously held misconceptions that Sjögren’s is a relative nuisance of a rheumatic disease. They now tell me that it’s very complex indeed and medical knowledge is still at basecamp.

[honeybug in reply to Hidden]

Wow Twitchy

I learned so much once again from your post Thank you for sharing. So sorry you have gone and continue to go through so much. I sure hope you find answers to all of your problems.

Gentle hugs

😊🌸

[evie99]

Wow, I have had SS for 20 years, diagnosed early age 20, (Anti Ro/La, RA) but still don't get the dry eyes/mouth, however now age it is 40 symptoms starting now. I had a bowel/hernia operation this year, however it didnt heal after 3 months, and had to have it done again - now 6 months later the 2nd operation hasnt healed - I had no idea this could be part of SS. It makes sense! What is about SS that makes skin/operations not heal...??/?

[Polly91]

Hello Markergw

I have just read this- what a horrible thing to happen.

I too think I have sjogrens as a result of recently being diagnosed with Lyme disease so am on treatment with doxycycline but due to significant weight loss my GP has suggested I get a colonoscopy done on Friday. I have not been formally diagnosed with sjogrens but I have very dry mouth, eyes, Genitourinary area & struggle to swallow large pills these days.

What would you advise? Is it dangerous to have a colonoscopy if I might have sjogrens?

Thank you

Polly