Author Topic: Esophagus issues  (Read 559 times)

kc2015

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Esophagus issues
« on: September 26, 2021, 11:25:46 AM »
Hi, I'm age 40 diagnosed at age 25. I had my 1st child 18 months ago after ivf. I've had a list of problems over the last 15 years mostly being puzzling/uncomfortable. My wbc is almost always slighly elevated but I've been told by hematologist its likely just persistent inflammation. I've had bilateral hearing loss (most likely autoimmune) unexplained infertility, and ofcourse dryness. For many years I was on Evoxac but went off of it when I did ivf/pregnant. Since then I've been suffering from what I can only think is esophageal spasms when I eat. Meat is the worst. I know I have gerd and try to cut back on triggers but the spasms are horrible. I literally feel like I'm having a heart attack and either have to wait for the food to move down or I throw up. I've been reading about nutcracker esophagus and its association to sjogrens. I know I need to get an endoscopy but I am also super fearful of esophageal cancer especially with having a little one. I am non smoker, nondrinkers but have had sjogrens dryness for 15 years and the dryness defintely seems worse off the meds. Anyone have any experience to share
« Last Edit: September 26, 2021, 11:27:25 AM by kc2015 »

meirish

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Re: Esophagus issues
« Reply #1 on: September 27, 2021, 03:37:37 AM »
Well, I am sorry that you have been dealing with this for so long. I was a little younger than you when I started have symptoms and of course being 78 years old now you can see that the docs really didn't have a lot of info on autoimmune diseases back in the 60's. I plugged along and had 3 children and worked part time as a nurse and all the wife and mother stuff and was exhausted all the time. I had so many different symptoms and one of them was dry mouth and aching in muscles and joints plus fatigue and then there was the Gerd or reflux that started early on. I have been on a whole lot of different meds for it.  I am in the midst of bad reflux and burning right now and scheduled for colonoscopy and esophagoscope in a few weeks.

I have had 2 procedures to dilate the esophagus with is well worth is. You need to have this done to see what your esophagus looks like and then the docs can give you the right medications. It is also fairly common to have spasms in the esophagus and the stomach and intestines and this makes it miserable to eat. It can also make it hard to swallow and you don't want to choke when you are responsible for a child. The scoping of colon and esophagus is not that hard. The prep is not even as hard as it was years ago. It takes some time and you will need a ride to the hospital and home because they put you in a light sleep so you don't feel a thing and can't drive for 24 hours or so. Once you have this done you will feel a sense of relief as then the docs can treat you and your life will get better.

It takes awhile to get medications on board that will help you feel better and it is better to go through the procedure than to sit and worry about cancer only to put the procedure off so long that you develop cancer while you are fretting.

I lost the hearing in my right ear totally in 1997 and the left ear is on the way out so I will be totally deaf if I live long enough. There are blood tests that a doctor can do to check for autoimmune hearing loss. An ear, nose and throat specialist is the doctor I would go to as they should be able to do these tests. I had 2 antibodies that were attaching my hearing. I have lost all my teeth due to many cavities and infections and have had dentures for 17 years.

WE get sick of being sick but we have to pull ourselves up by the bootstraps and make the effort to get ourselves to the doctor and tested. I can preach this but I have just as much trouble as the next person getting this done at times. All I can say is better now then later and good luck. Let us know how things go. meirish

Carolina

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Re: Esophagus issues
« Reply #2 on: September 27, 2021, 08:18:26 AM »
Hi kc,

Congratulations on your child! 

My diagnosis was at age 60.....and my Immune Disorder isn't autoimmune with autoantibodies doing the damage.  My Immune system attacks my body with cytokines, not autoantibodies, but the result is the same, alas.

Most of the damage is to my peripheral nerves (not CNS, like brain and spine)

I have several gastrointestinal problems related to nerve damage from my Immune System attacks.

These are my problems of my esophagus.

1.  Esophageal motility disorder:  My esophagus stops moving food down, and there is a spasm that is very painful.  I have to wait until it passes, and sometimes I force food back up into my mouth, to spit it out and relieve the pain.   This is a very unpleasant process. There isn't any true treatment.

2. Achalasia:  The sphincter at the bottom of the esophagus contracts and food stops moving into my stomach.  This usually isn't painful, and there often isn't a sense of pressure, so I don't know this is happening until the last bite of food cannot be swallowed because my entire esophagus is full.

I can go to the bathroom and force the food out of my esophagus.  This takes a great deal of effort and is exhausting.  The food has not entered my stomach so is only chewed, and there is a lot of saliva with it, so it is messy.

There is a treatment which involves dilation of the sphincter and injection of Botox to relax the muscles which contract and cause the problem.

My first treatment for achalasia has lasted 3 years, but now the problem is returning, so I will need another treatment.

I also have a hiatal hernia and GERD.

Here is a link to a very scientific discussion of problems of the esophagus: 

https://www.nature.com/gimo/contents/pt1/full/gimo20.html

Keep us posted, kc.

Elaine
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Cys-PN-CAD-Osteoarth-SFN-Oral Lichen Planus-SIBO-Act.Purpura-Tinitus-Meniere's-Hearing Loss-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamx-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Om.3-Methotrexate-Esome

Kathy57

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Re: Esophagus issues
« Reply #3 on: October 07, 2021, 09:05:00 PM »
Dear KC,

I?m sorry to hear of your difficulties.  I have had my esophagus dilated and I thought it was painful.  The biggest thing that helps me is my Evoxac.  Is there some way you can have it prescribed for you once again?

I also have Barrett?s esophagus which I think has been caused by my Sjogrens.  I also take pantoprazole 40 mg twice daily.  I have pretty bad GERD and esophageal reflux. 

I hope you get answers and proactive treatment soon.  You are going to be okay and around for many many years to come.  It is natural to worry when you have a child.  You can do this!

Kathy
62 yr old female - Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.

jazzlover

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Re: Esophagus issues
« Reply #4 on: October 08, 2021, 07:50:07 PM »
I feel your pain! Literally!

I am having really bad acid reflux right now. It just suddenly got worse. (probably from weight gain)

I am on more meds and will talk to my doctor again next week.

I have had those spasms and they are SO PAINFUL!! Mine got better but I'm not sure why. I usually get them while taking meds. I take quite a few one grouping after another.

If I don't go slowly enough, I will get a spasm.

Have you tried LDN? It might help reduce the inflammation.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

shaycoe3

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Re: Esophagus issues
« Reply #5 on: October 11, 2021, 12:52:32 PM »
Sorry to hear but happy to know that I don?t have something no one else knows about. I tried telling my dr that it was spasms of the esophagus but he just put it off I?ve tried all meds with only one being successful dexilant which doesn?t have insurance coverage. So I tried other things I use herbs at night this seems to help quite a bit.  I don?t drink water with my food because it seems to make the spasms worse with food after a meal not so bad eating slower and tuning into your esophagus so that when it gets full you can rest it then the food seems to go down if you move around a little I only learned this after none of my friends would go out to eat with me anymore because my spasms were so severe that the food would shoot out on them smh it?s to bad that we have this disease but we do have to find ways to live with it so as not to be overly depressed.

meirish

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Re: Esophagus issues
« Reply #6 on: October 11, 2021, 10:06:11 PM »
I am wondering if you need to find another doctor who will listen to you better. We Sjoggies seem to have problems with doctors at times. We usually look healthy so they don't always think we are sick. Don't seem to realize that the kind of ailments we have frequently don't show up on our face. It does get to be a burden doesn't it and does sometimes affect the kind of treatment we get.

I hope that you can get this solved. Neuropathy is often associated with some these spasming GI issues. Good luck and hope you get feeling better. meirish

jazzlover

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Re: Esophagus issues
« Reply #7 on: October 16, 2021, 01:13:11 PM »
Amen, Irish!!

Kc .. that is how I manage taking my pills. I have to go slowly. I don't usually have trouble eating, thank goodness.

I have found over the past year or two that I can choke on absolutely nothing.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

meirish

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Re: Esophagus issues
« Reply #8 on: October 16, 2021, 11:00:58 PM »
Jazzover, choking on nothing!!! I choke on the humble lettuce leaf at times. The less substance or body something has that I have eaten the more chance there is of choking. Our throats seem to be better equipped to handle solids in small amounts. I think the tissues of our throat can identify the solid easier. Puddings and applesauce were my product to take always with my pills for years. My myasthenia gravis has improved with all the years of IVIG and the swallowing has gotten so much better. Take care all. meirish

Scottietottie

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Re: Esophagus issues
« Reply #9 on: October 19, 2021, 04:34:27 PM »
Hi  :)

I had years of bad heartburn, took Omeprazole - dose went up from one to two and I was still getting acid in my mouth. They decided to do a fundiplication ( a stomach wrap). They couldn't do a whole one because the motility in my esophagus was not sufficient. Apparently it's OK in the middle but crap at both ends. What they did worked which was great. I appreciate not having reflux.

I get the occasional esophageal spasm though. (Nothing to do with the op). I spent a night in hospital thinking I was having a heart attack - but it wasn't. The spasms, when they happen can have quite a long duration. I've been prescribed Buscopam (it might be called something different in the US)

It works really fast. I take one when a spasm starts and it makes it wear off really quickly. I have no idea whether it is SjS related or not. No-one has ever said.

Take care -  Scottie  :)

Take care - Scottie  :)
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