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mydaddy

My husband tested positive for scleroderma

33 posts in this topic

Hi Lydia,

 

How did your husband's appointment with his GI doctor go yesterday?

 

I do hope that the doctor could prescribe him something to help with the pain that he's been experiencing and that he's feeling better.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Lydia,

 

A little slow in saying hello here. So pleased you found this site and have such great support from so many.

 

My daughter was diagnosed with scleroderma twelve years ago at the age of 26. It is very difficult being a family member. Your support will be paramount.

 

Please let us know how things pan out.

 

:emoticons-group-hug:

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Hello again, my husband's consultation went well. They mainly asked him about all his symptoms and booked him for an endoscopy on Monday.....so I will definately let you know about the results.

 

Thank you all so much for the warm welcome.

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Hello Lydia

 

Hope your husband's endoscopy goes well tomorrow.

 

I have often wondered how they'll ever cure a disease when they don't know what causes it...

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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That's exactly what the problem is: they don't know what causes it so they don't have a cure..... sad but true. A lot of doctors act like they know everything about these diseases but the truth is they don't have a clue about them at all..

 

Medication is their best tool.. A cure would be the best thing out this year, for scleroderma and all these autoimmune diseases including all types of cancers....

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My husband's endoscopy went well today.. they found nothing everything was clear.. happy about the results but now we're back to square one. He's 48 years old, now they want to do a colonoscopy to check for colon cancer.. I'm getting scared about this one. I hope they don't find anything.. this is really making me nervous sorry.....

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Hi Lydia,

 

I'm so glad your husband's endoscopy went well today.

 

Please don't worry too much about the colonoscopy (I know that's easy for me to say! ;)) It may be all clear for that procedure as well; I do hope so. :emoticons-i-care:

 

I shall be thinking of you and your husband and hoping for a really good outcome.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Lydia,

 

Another belated welcome to this forum. Glad your husbands endoscopy went well.Having had four colonoscopys in the past, I can quite honestly say the worst thing is the bowel preparation, the actual procedure really was not too bad at all because of the sedation.

 

So please try not to worry too much and reassure your husband too.

 

Hope all goes well

 

Sandy B

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Wow, I am so impressed by the support I'm getting on this board; it's incredible how people that I have never met could be so concerned for us... but I feel like you're all my family.

 

Your words are keeping me strong for my husband and I will forever be grateful; his colonoscopy is booked for the 22nd of May..... thanks to all wishing you well.

 

Lydia

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Late welcome here as well Lydia, and I'm in the "had more than I want to count colonoscopy camp" and the prep is bad but the procedure is all right. Just don't let them talk him out of the sedation, it is a mild form and makes the procedure so much easier. I was never offered anything prior to my last two and wow what a difference. It's over before you know it and no pain with the sedation.

 

I know there are no guarantees, but with all the ones I have had nothing has been found except for Diverticulitis in my case, so here's hoping that it comes back all clear for your husband as well!

 

Sorry for the late welcome and glad you found us!

 

Jean

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Hi Lydia,

 

Colonoscopies are part of normal medical screening (even for healthy people after a certain age).

 

Many scleroderma patients suffer from irritable bowel syndrome or similar g.i. issues, so like as not, his tests will come out just fine, even if he has significant symptoms. The prep is horrible though and in my experience, it seems to get worse all the time as they keep extending the length of days of starvation and drinking prep beforehand (at least, on me). Plan on your hubby to be suffering even more during the prep. It's a great time for him to get caught up on any movies that he's missed, even though it will be without popcorn.

 

The test itself is an absolute breeze. He'll be sedated to the point where he feels very happy but still dimly aware of the proceedings. I had always had mine without any sedation until the last time. (I've had more colonoscopies than I can count, as I have a history of ulcerative colitis.) Then I was furious that I had taken the test "cold turkey" for so many years! Why, I left there profusely thanking the doctors, nurses, clerks, even the janitor for the "wonderful experience!". What can I say, I am just plain slobbering when I am under the influence.

 

In short, plan on a very happy hubby with a pretty good appetite and pick out an after-procedure restaurant to go to ahead of time. He'll likely be in a great mood, and famished, and it will give you both something to look forward to.

 

Here are some warm hugs for both of you.

 

: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.

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Hy Lydia

 

Me too, I've had many of them for screening and mine have really been a breeze. I agree, he should not feel a thing, the sedation should take care of that. Prep, well, definitely not so great but you just gotta do it!


Sending good wishes your way!

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Shelley, thank you so very much for giving me heads up on what my husband is going to go through before his procedure.

 

i will definetly pick out a good restaurant...... thanks

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Hi Lydia,

 

I am SO, SO late in welcoming you to our Sclero Family. However, I am so happy that you (and your hubby) are with us now and I'm positve you won't regret a minute of being here :high-five: !

 

As you know, having a chronic illness yourself, it's so important to take care. It is a process in seeking out diagnoses, through all of the testing, etc. Yet, our hope is that your husband can be treated (appropriately) soon, for his present health issues.

 

As a Sclerodermian, who also has a husband with chronic illness, we are greatly in tune with one another and more sensitive to each other's health problems. As Shelley so eloquently spoke in her message to you, being one another's caregivers, it can work ;)

 

I'm glad your hubby is scheduled for his colonoscopy, but please please TRY not to worry about what it might be, as it's important for you to take care of you also :emoticon-hug:


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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thank you so much susie.......it means a whole lot to be supported by such wonderful caring people. PRICELESS.......

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