It wasn't just GERD and acid reflux . . .

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somedaysarediamonds
Regular Member


Date Joined Jul 2011
Total Posts : 363
   Posted 3/22/2012 11:15 AM (GMT -6)   
Greetings to all the GERD and reflux patients and a special hello to those of you who remember me.

I haven't been around for a very long time because I needed time with good doctors who knew what they were doing and time to be properly diagnosed as well. I'm not there completely yet but am almost there.

I want to keep this brief but I do hear from several of you from time to time so I thought I'd drop by and fill you in a bit about what the last 7+ months have been like for me. Again, it will be brief and maybe what I've experienced will/could help someone else.

For me, GERD was simpley a by-product of a completely different illness which I've evidently had for many, many years. It is an auto-immune condition and there is probably more than just the single one I've already been diagnosed with and have begun treatment for.

Most all of the symptoms which appeared to be separate issues were actually part and parcel of the auto-immune problem so the reason there still appeared to be "issues" after my own NF surgery was because the auto-immune condition(s) had not been addressed or even diagnosed.

I hope to know more after an upcoming appointment with a major research specialist in the area of auto-immunity and at least be able to deal logically and in an informed manner with my condition after more testing is done.

I attend an auto-immune support group where I live and it helps. And I've said all this to say, sometimes, just sometimes, if you have the surgery and you don't completely recover as you should, you might ask your doctor to consider other possibilities.

Last thing: I knew nothing about auto-immune problems until my husband came across a thread about dealing with difficulties wearing a CPAP machine for sleep apnea. I'd never been able to wear mine and I was unable to sleep with or without it

This is where he picked up on the possibility of some of our concerns being connected to auto-immunity and I'm very glad he did. At least the last 20 years of my life are finally making some sense. You can't address a health problem when your doctors don't recognize it and when you've never even heard of it.

Once I have the rest of the tests done I'll be posting in a relevant forum somewhere. Just wanted to let those of you who remember me know that I hadn't fallen off the face of the planet.

Peace from Oklahoma . . .
Rita

Post Edited (halloweenbaby) : 3/22/2012 3:13:52 PM (GMT-6)


mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 3/22/2012 12:30 PM (GMT -6)   
Wow Rita, it's great to hear from you. I'm glad you're making progress and I hope your GERD or pseudo-GERD issues have settled down. Do give us an update.

MMM
New stuff: GERD, Recurrent cystitis/Overactive bladder
Lifelong stuff: Food allergies/intolerance, eczema, asthma

theacidrefluxman
Veteran Member


Date Joined Oct 2009
Total Posts : 739
   Posted 3/22/2012 1:05 PM (GMT -6)   
babygirl,

Happy to see you here as well! Its been a while...

I am curious to know what types of autoimmune diseases can cause GERD, and am going to look into it. I hope things are going well!

efit
Regular Member


Date Joined May 2011
Total Posts : 127
   Posted 3/22/2012 1:53 PM (GMT -6)   
Hi Rita,

It's been a long time since we've heard from you and I had wondered how everything had panned out? Are you reflux-free yet? I am curious to know what autoimmune disease can cause reflux??? Please let us know more if you can.

Thanks and take care,
Liz

somedaysarediamonds
Regular Member


Date Joined Jul 2011
Total Posts : 363
   Posted 3/22/2012 3:10 PM (GMT -6)   
Hindsight is 20/20 and it's obvious now looking back on the last 25 or so years that all the mini-symptoms and conditions I've had to deal with separately were auto-immune related.

I only have one official diagnosis of Sjogren's Syndrome but the condition is sometimes secondary to another auto-immune disease and that's what the specialist in Texas will be testing for. My preliminary diagnosis came from a rheumatologist here in Oklahoma who is medicating me till I see the specialist.

When I look back I can see that after each surgery I've had in my life my general health has gone down. Surgery can sometimes lead to worsening of Sjogren's symptoms and in my case it has. The surgeries have always fixed the problem I had them for but my general well-being went downhill.

I no longer have acid reflux or any kind of GERD and probably didn't have any at all after the NF surgery. What I did experience was a worsening of the auto-immune symptoms. I had very good doctors but because I'd had a lot of symptoms most of my adult life they were never able to tie them together to see that their might be more than just individual symptoms.

You can just type Sjogren's Syndrome and GERD and read forever but I don't read much anymore about either of them. The GERD is fixed and there is no cure for the auto-immune conditions including Sjogren's; only treatment of the symptoms, support and a good helping of attitude adjustment.

Nice to hear back from you!
Rita
Lap Nissen Fundoplication August 1, 2011

A slow and most unpleasant but consistent recovery but not a classic one for sure.

elsiem
Regular Member


Date Joined Jul 2011
Total Posts : 131
   Posted 3/22/2012 3:22 PM (GMT -6)   
Hi Rita

Welcome back. It's good to hear from you. Im pleased to hear that the doctors are taking your issues seriously. Good on you for advocating for yourself and pushing them for answers. Good luck with the rest of your tests, I hope it is not too long before all the pieces of the puzzle are in place and you can start a successful treatment plan to get your health/life back on track again.

I guess spring is making it's presence felt in Oklahoma now and the view from your bay windows must be very inviting. I can only imagine it even though we have had some unexpected warmer autumn days here I know that the colder weather is just around the corner and winter will be upon us before we know it.

Keep in touch when you can and know you have been missed.

take care

Lynda

somedaysarediamonds
Regular Member


Date Joined Jul 2011
Total Posts : 363
   Posted 3/22/2012 3:25 PM (GMT -6)   
Thanks, Lynda. Yes, it's springtime in Oklahoma and we're experiencing rain like you wouldn't believe but everything is in bloom outside my bay window and so far no tornadoes in our area.

Nice to hear from you too!
Rita
Lap Nissen Fundoplication August 1, 2011 with a complete recovery from GERD and Acid Reflux.

Symptoms of a pre-existing condition were mistakenly attributed to the NF surgery afterwards by almost all of my doctors and myself as well.

*It pays to keep an open mind and to be a good advocate for your personal health.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 3/22/2012 7:58 PM (GMT -6)   
Hi Rita,
I'm so glad you've stopped by to let us know how you're doing!  It sounds as if you've finally found the right doctors and on the road to recovery.  While there's no cure,proper treatment can make a very big difference in your health.  It's also great that you've found a support group to help you through it all.  Way to advocate for yourself! turn
 
You are so right that your post can be extremely helpful for others looking here for answers.  It was very thoughtful of you to stop by and share your progress.
 
Let us know how your continued testing goes.
Very best wishes!
Denise

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 3/23/2012 9:27 AM (GMT -6)   
Hi Rita,
 
Good to read your thread and to know that you continue to be your own best advocate.  I hope you have read through our Sjogren's Forum.  Lynnwood is our moderator for Sjogren's and the Lupus forums and would be a great resource person for you if you are looking for someone here in HealingWell for advice or questions. 
 
It is a good thing you have a support group - it sounds like you are feeling better now that you have Drs. that are on the right track to finding out your problem.  Do lets us know how your test results turn out.
 
Reading that you have continued to stay connected to some of our members is wonderful.  It is very often the case that to share how you feel with another can greatly help improve your overall state of mind.
 
Wishing you the very best and I will be watching for your updates.
 
Kindly,
Kitt
 

 
 
 
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.

www.healingwell.com

"Life is not about waiting for the storms to pass...
It's about learning how to dance in the rain."~ Vivian Greene

somedaysarediamonds
Regular Member


Date Joined Jul 2011
Total Posts : 363
   Posted 3/23/2012 11:25 AM (GMT -6)   
At this point it's more helpful to me to deal with things just with the doctors and my local support group. Never know what the future holds but I do thank you all for the kind welcome.

I'd never been on a forum like HW before the NF and it's really more positive for me to just go on with my life as it is now and do what I can to improve it.

I just wanted any new subscribers to know that other conditions can and do exist in the midst of GERD and NF surgery to help with it.

The symptoms of the auto-immune condition started many, many years ago and because I was young I just wrote them off or accepted them. It does pay to journal as I have done for many years and it pays to have someone close to you (in my case my husband) know exactly what's going on. Without him understanding my symptoms he would never have known there was a name for what I have.

If I can help anyone especially after my visit to Baylor in April, I'm still around through email notification. Just not on HW that much.

Peace
Rita
Lap Nissen Fundoplication August 1, 2011 with a complete recovery from GERD and Acid Reflux.

Symptoms of a pre-existing condition were mistakenly attributed to the NF surgery afterwards by almost all of my doctors and myself as well.

*It pays to keep an open mind and to be a good advocate for your personal health.

aiderbellou
New Member


Date Joined Apr 2012
Total Posts : 4
   Posted 4/23/2012 10:47 AM (GMT -6)   
Halloweenbaby, Did you use a doctor in Tulsa for your Nissen? I'm considering this and can't find any info on doctors who have done this. Thanks!

somedaysarediamonds
Regular Member


Date Joined Jul 2011
Total Posts : 363
   Posted 4/23/2012 12:29 PM (GMT -6)   
I was screened by a Tulsa GI doc to determine for sure that the surgery would benefit me and then was operated on in my home town by my surgeon who referred me to Tulsa for the screening. His clinic is the largest in Tulsa and he's affiliated with St. Francis Hospital there. My own surgeon did a very good job for me as far as GERD symptoms went but I wouldn't have hesitated to use this Tulsa doctor.

Good luck to you.
Lap Nissen Fundoplication August 1, 2011 with a complete recovery from GERD and Acid Reflux.

Symptoms of a pre-existing condition were mistakenly attributed to the NF surgery afterwards by almost all of my doctors and myself as well.

*It pays to keep an open mind and to be a good advocate for your personal health.
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