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Esophagus Blockage


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#1 Peggy

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Posted 29 August 2013 - 12:25 PM

First of all, I have to apologize for not checking in for a long time.  But to be brutally honest this disease has been awful for me.  I have Systemic Scleroderma and 9 other autoimmune diseases.  The last year it has totally wiped out my digestive system; I had a spinal stimulator put in for the horrible pain in my legs and lower back, which even with that in I deal with pain that is so constant and debilitating; I had a really bad cardiac issue that resulted in an ablation of the lower part of my heart;  with regard to my digestive system I had gastric bypass as a new trial procedure for my extreme reflux.  It was thought to be the answer and it was for 10 months and then the reflux returned.  Now I have a feeding tube in because of what has been damaged and continues to be affected.

 

My reflux is one of the worst cases the University of Minnesota doctors have seen.  I am on every prescription for it there is and still have heartburn every day multiple times a day.  My stomach has been completely been reworked and moved around to where my stomach is the size of a plum.  The other portion of my stomach is still there and this is where my feeding infusions go into.  So how it is possible that reflux is able to even happen the doctors can't explain.  When they did the test to see what is happening the barium went down my esophagus and entered my stomach and immediately backed up the esophagus.  No one in the room could believe it.  I was like a circus sideshow with all of the medical people watching this.  When the reflux gets to where it is so painful and feels like I am being burned alive then I have to take this GI cocktail that is so horrible.  If I have to take 3 of them and it still is burning then I have to go to the ER for IV' s.  

 

The reason for my post is last night I was awakened at 2:20am with pain and discomfort in my chest / esophagus.  It feels like something is stuck in there and it isn't going away.  When I swallow even my saliva it feels like it's getting stuck and won't go down.  I haven't called my doctor about it as I thought maybe someone else has this.  I have no motility in my esophagus or my stomach.  I have been told it is continuing to work its way down through my intestines.  

 

Is this blocked feeling in my chest a further escalation of the damage to my esophagus?  I am concerned that food I eat will become stuck.  I really can't go into our local clinic because they aren't equipped to know about this.  The team of doctors I have are 3 1/2 hours away so going to see them isn't an easy thing to do.  My infusions or feedings aren't going well as I get such terrible nausea.  I also forgot to mention that I am malnourished.  I am supposed to be doing 2-3 a day but with how I feel after makes it hard.  The nausea is so bad that I am laying in a fetal position.   They take well over an hour and I have to wait 4 hours in between them.

 

If anyone else can relate to this and can share and give some insight I would so appreciate it.  This 

disease is relentless.  I am constantly being told how I am wasting away;  It's painful on the number of people don't recognize me; I also get told the phrase we all get to hear......."but you look so good" which so minimizes me in that they may think I'm not really sick .  My standard response is "I wish that I felt as good as you say I look".

 

My mantra that I have adopted and live by and wear a bracelet that says..."IT IS WHAT IT IS".

 

Any input will be so appreciated!



#2 miocean

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Posted 29 August 2013 - 05:30 PM

Peggy,

I am so sorry you are going through all of this. Just the other day I was reading a post from a couple of years ago that you had commented on and wondered how you were doing...

 

I think you should call your team of doctors and make them aware of what is going on. Please let us know how you make out

 

Sending healing thoughts your way

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#3 judyt

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Posted 29 August 2013 - 07:15 PM

Hi Peggy,

 

So good to hear from you, I often think of you and wonder how you are getting on.   Sorry to hear that you are still having such a horrible time, wouldn't it be nice if some of the things they do to us would be more satisfactory than they seem to be.

 

I think I agree with miocean that you should call the team of doctors who have been looking after you tell them what is happening.   It may be that they can't help much but at least they would know how you are feeling.   I sometimes think that there's not much point in passing on every little thing that happens but my Doc said to me that if I don't tell her how does she know?

 

Although I have had part of my stomach removed and still have very poor motility I am fortunate that the meds they give me seem to work so I can't help you much I'm sorry.

 

Just remember that we are here to listen to your woes, and even if we can't help you know we understand.

:emoticon-hug: :emoticon-hug: :emoticon-hug: :emoticon-hug: more hugs

 

Judyt



#4 Shelley Ensz

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Posted 29 August 2013 - 07:51 PM

Hi Peggy,

 

Oh my goodness gracious. I am terribly sorry you are suffering so many severe complications of scleroderma. I don't even recall hearing from anyone with such very complex g.i. issues.  You absolutely must contact your scleroderma doctor about this latest turn of events. With your predicament, you never know what could be a sign that something needs to be fixed or resituated.

 

In your situation, it would probably be helpful if you could make a resolve to always call when you have a change in symptoms. If you aren't sure exactly who to call -- which many times we don't as we can't tell if a symptom is something serious enough to need immediate attention or not, or even which way to turn -- then call the Nurse Line number provided by your health insurance company.  You can turn to them and they will help you figure out how to navigate the healthcare system.  And, they are typically available 24 hours a day.

 

I have found the Nurse Line number absolutely priceless!  Over busy holidays they have provided us with enough assistance to avoid an emergency room visit. Sometimes we were shocked to discover from them that something we thought could wait was actually an emergency and they faxed ahead admissions info to our nearest hospital so they would be prepared for our arrival. Sometimes they provided us with plain old common sense nursing advice that got us through an otherwise tense situation with no need for a doctor visit.  Please do not overlook or dismiss them as a possible resource. They are very likely to know how to deal with many issues, especially with TPN and they can always escalate a call, too.

 

Also ask your scleroderma expert who you are supposed to call about what, and when. They can probably tie you in to specialists that are on call at night from the hospital.

 

And will you please try to keep in closer contact with us?  I know it must be incredibly difficult. But we miss you whole bunches and want to always be here for you.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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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.

#5 Joelf

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Posted 30 August 2013 - 04:33 AM

Hi Peggy,

 

Goodness me, I am sorry to hear about all the G.I. problems you've been having. It must be almost unbearable for you.

 

I'm in the UK, so we don't have quite the same system as Shelley has outlined for contacting our general practitioner or consultant (although The Royal Free do have a team of trained Scleroderma nurses at the end of the telephone for advice) but I do agree with the others that you should report your latest problems to your Scleroderma specialist, as any change with a severe gastroinvolvement like you're experiencing should be noted and monitored, at the very least.

 

Please do post again as soon as you feel able and let us know how you get on.

 

:emoticons-group-hug:

 

Kind regards,


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#6 Sweet

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Posted 30 August 2013 - 01:26 PM

Hello Peggy my Love...

 

As you know my heart goes out to you. I don't have any great advice. I also think you need to let your doctors know. My heart breaks for you, wishing you'd get some sort of relief. 


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#7 Shelley Ensz

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Posted 01 September 2013 - 06:51 AM

Peggy, what have you found out about this?  Has it gone away, or did it require further treatment?

 

:emoticons-group-hug:


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

#8 Peggy

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Posted 02 September 2013 - 06:12 PM

I can't thank everyone enough for your advice.  I am humbled that I was remembered.  The feeling of blockage isn't as constant as it was before.  I am going to call the GI team tomorrow and the infusion nurse tomorrow as I agree with you that they should know what is going on and hopefully can give some insight.

 

This holiday weekend was a complete washout for me as I am in so much pain and I am so tired.  I have no strength.  I still do what I have to but can hardly wait to finish so I can lay down.  I continue to battle this part of the disease in my head and in my heart.

 

This forum was my saving grace when I was diagnosed.  I have to confess and apologize how needy and constant I was on here with my issues.  It has been a very long 6 years and I have learned so much and gone thru so much. I have lost so many friends thru this disease some were expected, but too many were so sudden.  This disease can sneak up on you and that revelation has not only opened up my eyes but it also scares me.  One thing I have learned is just how similar what this disease involves for us but also how different it can be.  The constant theme for a lot of us is the bind or connection we have and how we truly understand and can relate and be there for each other.  I am so lucky to have 2 people with this disease only a half hour away.  So we talk a lot and meet for lunch every now and then.

 

I began to share my journey on Facebook a while back.  I have been so amazed by the outpouring of support.   That has been my saving grace in getting thru some very tough times.  But what I have been touched by is how many people have asked me to continue. For a lot of them to say I am an inspiration floors me, but I appreciate them saying saying that.  I think anyone dealing with long-term health issues has to learn to cope.  What is the alternative?  Give up?!  I don't think so.  However it isn't lost on me that I have used up all of my currency so to speak.  What I mean by that is I have used every drug there is to use against this disease, except for a stem cell transplant, which isn't an option for me according to my rheumatologist.  Once the Cellcept  to quits working then the disease will do what it will do.  My pulmonary fibrosis is getting worse little by little but there are so many sclero saints who have it so very bad that I know that I have nothing to complain about.  

 

Like my mantra says.....   IT IS WHAT IT IS



#9 judyt

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Posted 02 September 2013 - 07:24 PM

Hi Peggy

 

Of course we remember you, we all have the same sort of difficulties as you have said and it is easy to think I wonder how so-and-so is coping with this.

 

That is what is so good about this forum, we each have somebody who can relate to what is happening in our life and can take strength from each other.

 

Yes It is what it is and we are each who we are, and life goes on for each of us.

 

Best wishes,  hoping you get some helpful advice from your medical team.

 

Judyt



#10 Amanda Thorpe

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Posted 04 September 2013 - 06:03 AM

Hello Peggy

 

I have a friend who has complete gastric failure, nothing works and she is fed through TPN (total parenteral nutrition) she has a line in her chest that feeds directly to her heart. This is how she gets all her nutrition as anything she eats is vomited back up (can be days later during which time it's just sat in her stomach causing pain and bloating up to 46 inches, she's a UK size 10) nothing is absorbed from anything she eats and she has both slow and fast motility issues.

 

This may sound bizarre and I don't even know if it's possible but can't you have your stomach surgically removed and be fed through TPN? Really your stomach causes you nothing but pain, literally. I don't know if this is something that can be considered but I just thought of it as you can live without being fed through your stomach.

 

By the way Peggy, I happen to think you have plenty to complain about and the fact that you don't is testament to your tremendous character, this forum is glad to have you.

 

I hope you find some sort of relief and take care.


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#11 Peggy

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Posted 07 September 2013 - 03:32 PM

Amanda,

 

Thank You for the wonderful compliment.  My Pastor was over one day for a visit.  She asked me if I ever ask "why me"?.  I sat there and after some thought I answered her and told her that I had never once thought that.  I told her now that she asked this I believe everyone has some burden to bear and this is mine.  

 

Thank you for the information on the stomach issue.  This is what is so hard for me.  Anything I eat orally or with the infusion it is followed by horrible stomach pain, discomfort and nausea.  As horrible as this solution sounds at least I now know there is an alternative.  Thank you for that information!



#12 Shelley Ensz

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Posted 08 September 2013 - 06:59 PM

Hi Peggy,

 

Yes, I second Amanda's compliment, Peggy.  Seriously, I marvel at how well you keep your attitude straight while juggling so many very serious health issues.

 

Just out of curiosity, do you have to eat anything orally, since you are getting the infusions?  One of our relatives was on TPN, and the most he would ever "eat" was to lick on lollipops or hard candies, just a tiny bit, for the flavor (not to actually eat them), because his stomach just could not process food.  Are you getting enough calories and nutrition through TPN to try it for a day, to see if it reduces or stops the stomach pain, discomfort and nausea?

 

:emoticons-group-hug:


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Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#13 Amanda Thorpe

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Posted 11 September 2013 - 02:31 AM

Ditto Peggy, I have never asked "why me?" for the same reason as you. I try to make the most of it and as much as that may help others, and I really hope it does, it also helps me and let's face it without a payoff for me I am sure I'd do very little being a selfish and lazy creature at heart.

 

As radical as not eating sounds many, many people do it and their lives are better for it. There are TPN forums around, maybe have a read of one just to get the flavour (sorry couldn't resist!) of it. I don't know if TPN is something you and your medical team could discuss and of course I have no idea whether it would help?

 

Take care.


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#14 Shelley Ensz

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Posted 23 September 2013 - 12:42 PM

Hi Amanda and Peggy,

 

Ah, I wish I could join your crowd!  I confess to asking "Why me?" from time to time. 

 

Unfortunately, then I see a break through the dark clouds, a strike of lightning to get my attention, and a deep, booming voice yells back, "Why NOT you?!"

 

Guess that tells me a thing or two!

 

:emoticons-group-hug:


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.