Barrett's esophagus and Scleroderma
Posted 17 August 2008 - 02:56 PM
Posted 17 August 2008 - 09:28 PM
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.
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host
International Scleroderma Network (ISN)
Posted 18 August 2008 - 12:28 PM
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.
Posted 18 August 2008 - 01:59 PM
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.
Posted 18 August 2008 - 04:15 PM
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.
Posted 18 August 2008 - 04:23 PM
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.
Posted 19 August 2008 - 06:51 AM
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~
Chocolate, It isn't just for breakfast anymore!
Posted 19 August 2008 - 08:21 AM
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.
Posted 19 August 2008 - 02:37 PM
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!
Chocolate, It isn't just for breakfast anymore!
Posted 19 August 2008 - 03:20 PM
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
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?
Posted 21 August 2008 - 04:52 PM
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.
Chocolate, It isn't just for breakfast anymore!
Posted 22 August 2008 - 04:12 AM
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!
Posted 22 August 2008 - 02:25 PM
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
Posted 22 August 2008 - 02:43 PM
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.
Posted 22 August 2008 - 05:06 PM
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. 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!
Posted 22 August 2008 - 05:45 PM
Posted 23 August 2008 - 07:38 AM
If nothing else you will find a good support system here when you need one. Keep us posted.
Posted 23 August 2008 - 05:21 PM
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.
Posted 24 August 2008 - 04:26 PM
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.