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Barrett's esophagus and Scleroderma


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#1 canon

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Posted 17 August 2008 - 02:56 PM

Hello, My name is really judy not canon. I feel like I've been blown out of a cannon several times in the past year or seven. Does anyone else have Barrett's esophagus? I was just told this a couple of days ago. They said it was pre-cancerous and I had to be careful. I can't be anymore careful than what I am now and the treatment was not changed. Still taking 2 pills every day. The GI Doctor had his nurse call me!! Do you believe that!!! The medical profession leaves alot to be desired. I have not been offered the new treatment for it and wonder if scleroderma Pts have had trouble with it or if any one has had it done. I think it is ok to ask this? Also I have nodules in my lungs and stomach and something too early to tell in my liver. I am told this is not related to my limited scleroderma and no one can tell me what it is. The ones in my stomach showed nothing with a biopsy. Does anyone have nodules that hurt and itch on their palms and fingers? I was told it might be calcinosis but they get very inflamed at times and they don't drain. My fingers are so numb sometimes I can't pick up things anymore. Also my eyes, nose and mouth are as dry as prunes which is being treated. I developed shortness of breath this year also but all lung and cardiac tests are ok and it supposedly is from reflux into my larynx. My top lip feels like it is stiff all the time. This has all happened this past year and I am exhausted. All this in addition to joints that feel battered. I work full time and love my job. I had esophageal problems and raynauds for 20 years and other things that came and went. When menapause happened everything else happened it seems. My thyroid went out, ANA was high and joints that hurt so bad, bruising for no reason and was told I probably have lupus but no lupus antibodies. I did have + anticardiolipins though. Then I was told it was scleroderma and then it was'nt. Now we are back to limited scleroderma. Any way I don't think they are going to change the diagnosis again however it is always in the back of my mind that they will. They say I have CREST. I am being treated with immuno suppressants and a medication for the numbness. My rheumatologist has never with held treatment and she is very nice. It probably looks like I can't keep it all together to make sense and stay on track and I can't. This disease is asking for alot and I was told mine is the milder form of scleroderma. Though no specific autoantibodies I know that most people on this forum have many problems but it seems like it would be nice to lighten the load even if it is just for a moment and tell it all as best I can. Thanks for listening.
A happy heart is good medicine.

#2 jefa

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Posted 17 August 2008 - 09:28 PM

Hello, Judy and welcome to the ISN Sclero Forums. Sounds like you have had quite a go of things. Thank you for filling us in your troubles. I am sure you will find that the forum is a great place for information and support. Our collection of medical pages presents a huge amount of reliable information.

I don't personally have any experience on Barrett's Esophogaus but there are a couple of forum members who do. I am sure they will share their experiences when they read your post. In the meantime, there are several articles and patient stories dealing with Barrett's on our Esophageal (Throat) Involvement page. Hugs to you and again, welcome.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 Sweet

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Posted 18 August 2008 - 12:28 PM

Hi Judy,

Welcome to the Sclero Forums. I'm so very happy you've joined us. I'm sorry to hear about all the things you are battling with. I know it can be overwhelming at times. Carrie gave you a great link that I hope will be helpful to you.

You've come to the right place for information, support and good ole friendship from people that truly care.

Again welcome!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 Cheryle

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Posted 18 August 2008 - 01:59 PM

Judy,
Welcome! Sorry to see you have so much on your plate! Wow I don't see how you can still work.

I have Crest too. I have problems with my esophagus, but no Barrett's. I have been on Reclast for my dry eyes and it is helping. I do have numbness from time to time in my fingers and lately my joint pain is awful. I have had small sand like pieces of Calcium come through the skin of my face and some in my palm. I also have Pulmonary Fibrosis. I did present with positive ANA anti-centromere.

It really does help to share our feelings and get support from one another.
Cheryle

#5 Nina

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Posted 18 August 2008 - 04:15 PM

Judy ~
This is Nina once again ~ I was ending my message and lost it some how. Sorry ~ I was saying take some time to browse around our little forum. There is lots of very valuable information and lots of good friends.
Much love,
Nina

#6 canon

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Posted 18 August 2008 - 04:23 PM

Thank you all so much. I never thought that any one could have almost identical symptoms. Guess that is why they have called it crest. Thank you Cheryle. The disease all around is just so horrible. I have not spoken to anyone with scleroderma since a friend died from it about 10 years ago. I did not know I had it back then. She was 65 and renal failure took her due to high dose prednisone. Pretty close happened to a friend I had from high school. She had lupus and died at 38 from the prednisone too. They were good people.

Well enough of those stories. The bright side is we are still blessed with living! Living the best we can and I do feel blessed that I can still work. I love my job. Hoping that my fingers, bones and skin will hold out until I can retire which is 10 more years.

It has not been easy not being able to talk with anyone that can truly understand and who has scleroderma. It would be nice talking with some one that has an autoimmune problem. With out a diagnosis, it makes you feel like you can't talk about what is going on so I haven't talked much about it.. Then when you get a diagnosis there is still no one to talk to. Thanks for being here. I thought face to face would be better but this is great too. I have not known how to start so for 2 months I would just pass by this site. My pulmonologist has told me she is treating 4 other scleroderma Patients. I should call them or tell my pulmonologists to give her patients this site. I hope they have found your site already. Not sure I could physically take on more right now but could probably soon if things settle down again for awhile. This has been the longest and most relentless I have experienced.

Thanks again for listening and for your support. It takes special people to hang in year after year to support other pepole so thanks for hanging in there and being here. It is trully a privilege speaking with you all. I can not thank you enough.
A happy heart is good medicine.

#7 smurfette

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Posted 19 August 2008 - 06:51 AM

Dear Canon,
Hi! Take heart. I had tested positive for Barrett's on an endoscopy and a year later after taking Nexium and a lot of other behavioor and med changes the Barrett's was gone. I have CREST - Raynaud's, esophageal spasms, small calicifications on my face, some red lines on my face, hiatial hernia, fibro, gastro paresis, exercise induced a-fib, and a laundry list of other super stuff. The bottom line is that I got rid of my Barrett's. I still have reflux, but it is so highly neutralized that it does not burn anything.
Once you find the right do and get all the right tests to zero in on your various problems so you can have them all diagnosed then a treatment plan can be put into place You can get the right meds. Some work quickly, others take months. But in any case you are on the road to feeling better. You also have us. We are here for support and information.
We are all pulling for you. The disease take many forms. Some of us can manage it for years. It is not always a death sentence. You need to speak frankly and clearly with your various doctors and get them to work as a team, but you will have to be your team manager. Read the info on the board so you can understand your various issues. Being informed is the best way to protect and preserve your health.
Good luck and welcome~
Smurfette

Chocolate, It isn't just for breakfast anymore!

#8 Peggy

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Posted 19 August 2008 - 08:21 AM

I just wanted to send a welcome and to tell you I know what you are going through. This disease has changed my life so very much and it has made me a different person. Before this disease I was the energizer bunny and did everything. Now I am always so very fatigued and so limited in what I'm able to do. I was at the top of the office where I worked and was doing so well and now I don't work at all. But what can you do, you just have to let your body dictate what you are able to do on any given day. I am getting better at just trying to get used to it. Don't get me wrong, there are a lot of days that I am depressed and wish I had my old life back. I have 6 different autoimmune diseases and my sclero doctor said I'm an autoimmune disaster. My doctor is also really monitoring for lymphoma to develop so I worry about that too.

I hope you keep coming here for questions and support. The people here are wonderful and they are so knowledgeable and caring. I don't know what I'd do without this support. If you ever need to talk I'm here. Just let me know if you would like to email or whatever.

Warm hugs,

Peggy

#9 smurfette

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Posted 19 August 2008 - 02:37 PM

Peggy,
You are always there for everyone, wishing them well and there you are with so much on your own plate! I just wanted to thank you for all of the positive thoughts and support you send out to everyone else while you are what your doctor calls an autoimmune disaster. That is a pretty selfless and wonderful thing to do. I appreciate it and I know that many of the other forum members do also. Thank you!
Smurfette

Chocolate, It isn't just for breakfast anymore!

#10 canon

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Posted 19 August 2008 - 03:20 PM

Thank you all again. Yes the behavior changes can be dramatic with esophageal problems. The list is long. I don't drink, but had to stop smoking, eating chocolate, spicey foods, and worst of all I used to be able to eat anything anytime and not gain weight. Not so anymore. I have been on the protonix for years, before that prilosec and or prevacid. So on one of those for pretty close to 15 years maybe. The loss of antral motility has been a long standing problem that does not help. Gastroparesis, I think you said is even worse so I'm sorry you have that.

How do you manage home and job? I put all remaining energy into my job but home is tough. It is really difficult to maintain a house inside and out. My extended family (kids) help out alot but it is still tough. The dogs are not any help at all especially with cleaning up after themselves :lol:

I am out of sorts today because my dermatologists took a biopsy of the nodules on my hands. A big biopsy with 2 stitches. He said they were rheumatoid nodules so lets see what happens. Now that it is done and my right hand is now more sore than before and I hope it heals ok. He took the nodule between my thumb and pointing finger where all that skin is. Not a good place but he said that was the best one. He is a good dermatologist I like him.

Does any one else have trouble with surgical procedures? It hurts more than it should and seems like it takes a long time to heal anymore and everything makes me tired.
Do you find that too?

Judy/canon
A happy heart is good medicine.

#11 smurfette

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Posted 21 August 2008 - 04:52 PM

Judy,
First of all, your dogs need to learn how to flush! And when you get that figured out, sell the system and you will be able to have hot and cold running housekeepers! I have cats (they walk themselves), I have gravity feeders and a water fountain for them and my husband's job is to scoop! The toughest part of it is that my youngest cat is the most adorable trouble maker in the world. He just climbed on my desk with a very wet bushy tail - he got into the fountain again.
I do not practice law anymore, I do not work more than 3 days a week. I make my own hours - If I feel bad I just do not go in. My kids live on their own, they are 19 and 24 and I have a cleaning lady once a week. I have it pretty easy. I think that you have the harder deal as you work full time. I sleep with my boss so if I feel lousy he knows it before the workday begins and I don't even have to call in sick.
I can image surgeries hurting more. It sounds like you had quite a hard one on your hand. Hands are very sensitive. The skin is thin. We use our hands so much. You can't just stop using it for a few days. Weight gain is a combination of activity level, and age as well as our disease. Either way it just does not seem fair to add that to our list of issues!
I am so sorry to hear that you are in pain. I hope that the biopsies reveal good news and that your hand starts to feel better soon. Remember we are all here to offer support, encouragement and kind words whenever you need them. Take care and don't push yourself.
Smurfette

Chocolate, It isn't just for breakfast anymore!

#12 razz

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Posted 22 August 2008 - 04:12 AM

Hi Judy!

Welcome to the ISN family. Everyone here is so helpful, kind and encouraging. Some are really funny and will bring you out of the duldrums. I'm glad you stepped into this forum. There is so much information here that I hope you get answers to all your questions.

I've had many biopsies before, the first two had to get stitched. Ewww and ouch! My former rheumatologist wanted me to have hand surgery to straightened out my fingers. (They're completely contracted and bent.) I kept refusing because I depend so much on being able to use my hands. If I did have the surgery I'd be on my own trying to do things. Besides, I'm not in pain and they don't bother me. Maybe in the future I will reconsider. I hope the healing on your right hand goes well.

It is nice finding people to talk to who understand you and what you are going through. There is no other place for me to go to. I can wear my pajamas, hair sticking out all over, bring my coffee to my computer, log on and no one sees how great I look!

I have one college student (daughter) living at home and a dog and cat who follow me all over the house. Every day is different. I never know how much energy I'll have or when I'll run out. I just do whatever I can, mostly the important things.

I just wanted to say I'm glad you made it here!


Hugs,
Razz
Live well, Laugh often, Love much

#13 canon

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Posted 22 August 2008 - 02:25 PM

LOL. Thanks so much!

My problems are pretty minor right now compared to what I have been reading but a good pout is OK now and then. Reminds me of the time I was watching a TV show and a woman with no legs or arms was talking about how she had to improvise in taking care of her baby. A friend of mind walked in and told me how depressed she was feeling, then looked up at the TV for a couple of minutes and said wow, I don't have any problems. She was never depressed again. They might edit this part. ;)

Have you noticed any improvement with your esophageal problems? Won't it be wonderful not feeling reflux anymore!! Hope! hope! hope!

Wishing you speedy results

Judy/canon
A happy heart is good medicine.

#14 canon

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Posted 22 August 2008 - 02:43 PM

Thanks razz.

Humor is good for the heart. Thanks. It is always nice to flop around the house with no one watching except the dogs which follow me around too. They don't care what's going on.

Congrats on your new book. I believe it is you that just finished a book. My memory is pretty sluggish this time of night. Well it would be nice if you wrote a book if you haven't already.

I understand your reasons for not having surgery. What would your reasons be for having surgery? Just wondering what the pro's and con's would be. If I were to loose hand function, I would lose my job and I absolutely love my job. It would be possible to stay in my profession and use a phone but not hands on. Life would be different. Whatever decision you make is the correct one for you.

Best wishes,

Judy/canon
A happy heart is good medicine.

#15 razz

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Posted 22 August 2008 - 05:06 PM

Hi Judy!

Laughter is the best anti-depressant medication! Don't worry your memory is fine, I am the one who finished a book. It took me many years, but I finished it.

The reason I believe my doctor recommended I have the hand surgery was mostly cosmetic. My fingers in both hands are completely bent and appear clawlike. The surgery recommended is called digital sympathetomy. It is an invasive procedure where the middle joint is removed and the ligaments released to restore some mobility. I'm waiting for a procedure that is less invasive especially because with scleroderma the healing period could take a while. In answer to whether I still have esophageal problems. I can swallow food better, whereas before the food would sit at the back of my throat and I'd have to wash it down with a drink. Acid relux has calmed down quite a bit. I don't get the bitter acid fluid backing up into my throat while laying down. :blink: I also make sure I stay away from food triggers that bring it on and I don't eat late meals before bedtime.

I'm happy for you that you are still able to work!

Have a great weekend!
Razz
Live well, Laugh often, Love much

#16 canon

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Posted 22 August 2008 - 05:45 PM

Thank you. You have a great week end too.

Judy
A happy heart is good medicine.

#17 smac0719

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Posted 23 August 2008 - 07:38 AM

Hi Canon! Welcome to the forums. I too am still working and battling diffuse scero with morphea at the same time. I have 2 teen sons who are the absolute greatest through all of this, but it is hard maintaining a work and home life while dealing with an illness. I also have Raynaud's, GAVE, suspected Sjorgrens, some gastric/bowel problems (yet to be diagnosed), chronic fatigue and joint pain. I have just learned to listen to my body and when it says "I'm done!!" I leave it be and rest until I feel rested enough to carry on. Luckily, I have been blessed enough to continue to work so it too is my home life that suffers. A recent bout with severe muscle weakness scared the life out of me and made me think for the first time what total disability as a result of this illness might be like for me. Strangely enough it last for a week and went away the next week. I was tested for muscle involvement and everything there was normal.

If nothing else you will find a good support system here when you need one. Keep us posted.
I may have Scleroderma, but Scleroderma doesn't have me!

#18 canon

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Posted 23 August 2008 - 05:21 PM

Thanks smac,

I'm sorry you are having such a difficult time. It trully is a difficult decision to choose work over just about everthing but can't survive without it. We do what we need to do as long as we can. The rest periods seem to be getting longer for me because the sense of fatigue is getting greater. Kids are great for a pick me up though. They always make me laugh or proud. They are my extended family but my family here.

I have limited scleroderma with questionable other things going on. No one seems to know what those other things are yet but they are quite apparent and abnormal. I am hoping the skin biopsy will help so we can treat what ever it is.

Sure hope you have adults that can give you some help to lighten your load. That is what I will hope for, for you and also hope your weakness and pain will subside. Though you are getting small breaks in between now I wish and hope for much bigger breaks.

Canon/Judy
A happy heart is good medicine.

#19 smac0719

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Posted 24 August 2008 - 04:26 PM

Thanks Judy. I do have a good support system. My mom retired a couple of years ago and moved in with me. Unfortunately she will be moving about 2 1/2 hours away fromn me next week. She retired prematurely and is taking a temporary position for a year. Since my internal organs aren't affected right now and I haven't had any major set backs, she feels comfortable that I'm ok day to day and that if something does occur she can get to me pretty quickly. It'll be a transition as she has been very helpful with supporting me during the fatigue and pain, seeing that the boys get where they need to be and the studying gets done as well as taking care of the household.

But enough about me. I sometime have trouble with healing after surgical procedures as well. I remember a biopsy where the dermatologist thought I should have been numb enough and proceeded to do a punch biopsy. When I commented that I could feel the cutting he told me that I just felt the pressure. I calmly told him I could tell the difference between pressure and pain. I was looking the other way so I was able to tell him exactly when he was cutting the tissue. It took months for those sites to heal completely.
I may have Scleroderma, but Scleroderma doesn't have me!