21 posts in this topic

I finished the GI testing required for the lung transplant evaluation and all in all, everything is pretty good. The testing wasn't pleasant and there were some issues but this is what I found out:

 

The Hydrogen Breath test showed I have Small Intestine Bacteria Overgrowth (SIBO) and I am now on an antibiotic for it. It should bring down bloating and reduce gas. Apparently this is common with autoimmune diseases.

 

The 24 Hour PH Test With Manometry was VERY unpleasant. It showed I have considerable reflux even though I am asymptomatic. Due to medication to control it, my reflux is not acidic but I need to try to elevate the head of my bed and not eat a couple of hours before bedtime to prevent aspiration into my lungs and further lung damage.

 

At first the doctor thought I had Barrett's esophagus from the endoscopy but the biopsy was negative. I have some inflammation but it is not bad. I do have poor motility but there was no suggestion to treat it. I do not have Celiac disease.

 

For the first time I wasn't all the way cleaned out for the colonoscopy. Even after trying to flush me the doctor had problems seeing things and extracted hardened pieces of vegetable. This is strange because I hadn't eaten vegetables for several days. Apparently my body doesn't digest them well and the slow motility kept food in my colon even after two days of prepping. I bled when a biopsy was taken so I have a clip in that will eliminate itself in a couple of weeks and I can't have an MRI without an x ray  to see if it is still there. I don't have colitis but am waiting for a more detailed report on a biopsy for microscopic colitis. I will have to repeat the colonoscopy in two years due to the anti rejection medications I am taking and that I have had polyps in previous colonoscopies but none were seen in this one, perhaps because I wasn't all the way cleaned out.

 

Other than my esophagus I am doing pretty well. Since this gastroenterologist is knowledgeable about scleroderma I asked how she would rate the damage to my GI tract and she said I am doing very well and to think positively. She said "there are a lot of worse diseases than scleroderma and a lot of people  would wish they had scleroderma instead of what they have."

 

I guess that is true but tell that to all of us, right? Now I'll have to see if the lung transplant center will still consider me as a candidate with the damage to my esophagus. 

 

miocean


ISN Artist

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Hi Miocean,

 

Well, overall it does sound as if things are relatively stable for you at the moment and I'm glad to hear that you've had your tests now and do know a little more where you are with the gastro problems you've been having. Sorry that the tests were so unpleasant though!! :(

 

I'm not sure that a lot of our members would agree with your gastroenterologist's remarks! ;) However, it could certainly have been a worse prognosis for you and I do hope that you will qualify for a lung transplant now that you've been assessed and the extent of your oesophagus damage is known.

 

Best wishes,


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 Miocean,

 

My goodness. Thank you for the update! How long will it be before you hear whether any of these results affect your lung transplant qualification?

 

I'm not the least bit surprised about your having reflux even though you are asymptomatic. it is very hard to have systemic scleroderma without also having reflux, whether we are aware of it or not.

 

: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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Hi Miocean....I am glad that results came out fairly well.  How soon before finding out if you made the transplant list? 

 

I remember that Gareth wasn't totally cleaned out for his colonoscopy  the last time, either, even though I assured the doctor he had taken all the prep meds and nothing but watery fluid was coming into the toilet.  Interesting about the motility factor for the colon.

 

The Hydrogen Breath test is something I have never heard of.   Is that routine to r/o intestinal overgrowth?  That would help the autism community if it were.

 

Take care, Everyone.

Margaret

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Apparently, small intestine bacteria overgrowth (SIBO) is commonly found with autoimmune diseases. The hydrogen breath test is a non-invasive test, it just takes some time. You begin by drinking a solution of water with sugar in it and they take a breath sample by having you breath into a tube with a plastic balloon on it. You do this every 15 minutes for about 4 hours. Each breath sample is analyzed. The treatment is an antibiotic, the one I went on is xiflaxin. It is very expensive and often not covered by insurance but I have read about other antibiotics being used.

 

I am now on my last of the 14 days of antibiotic. I have to say I have not had extreme abdominal pain as per usual, my bowel movements are more regular, and the bloating in my belly has gone down.The only negative side effect I am having is fatigue. There have been days when I have needed a 3-5 hour nap which is not usual for me.

 

I don't know what happens if it returns. There is a diet to follow called the FODMAP diet, usually suggested for irritable bowel syndrome. It is basically an elimination diet to promote a healthy gut.

 

miocean


ISN Artist

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Also, lungs can be damaged by reflex acidic or not. So, you may not have severe acid reflux, still, it could damage lungs according to my doctor at UCSF.

So be careful.

I hope, miocean, everything goes great with you.

Best wishes and lots of love.


Kind regards,

 

Kamlesh

 

 

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Glad to hear you've got through all those tests and do hope you get to hear soon about the transplant. You have certainly been through the mill but I'm sure your very positive attitude is what really helps you through.

 

Best Wishes Buttons

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Hello Miocean

 

Glad you got that all sorted out! I had a colonoscopy a year or so ago and gad the same problem as you, incomplete elimination, I did warn them that I was not likely to be awake long enough to be able to drink the amount of water required and guess what...I didn't!

 

This doctor who said there are other diseases worse than scleroderma, did she care to name them? Flaming cheek! The worse disease is the one someone is living with, it would have been better if she had answered your question.

 

Take care.


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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"I am doing very well and to think positively. She said "there are a lot of worse diseases than scleroderma and a lot of people  would wish they had scleroderma instead of what they have.""

 

Sometimes well meaning people say really dopey things when they want to cheer you up.  I'm trying really hard to think of any chronic illness anyone would ever wish on themselves in preference to... I'm struggling...  Unless you have lived with something, how can you really get inside another person's head? 

 

I'm new to this forum but I just wanted to send you good wishes.  I hope everything goes well for you. 

 

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Have not posted forever but I would like those who have acid reflux to know, in addition my normal meds. of Nexium and other stomach meds, I am now taking a tbls spoon of honey and vinegar with another 6 oz. of water or more to taste, hot or cold. 

 

It has done wonders for my stomach. 

 

The acid in the vinegar tells your stomach not to produce so much if that makes sense.  I can sleep at night.  Hope it helps someone....

 

Alice

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Hi Miocean,

 

Are things still settled down with your small bacterial overgrowth?  Have you had any more transplant-related testing lately?

 

: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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"Unless you have lived with something..."

 

Shazzer's comment is true, so very true as it happens! Why then do we insist that we know how someone else feels and vice verse? Well most times the motivation is genuine, benign, to convey a sense of unity and dispel that sense of aloneness. Disingenuous motivation is to *pacify*, dismiss, minimise and this often comes from medical professional as is the case here. 

 

**Pacify associates with soothing babies as in we pacify the baby,,give baby its pacifier, it's not really appropriate for adults...

 

Take care.


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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Ten years ago I began to experience my first symptom of scleroderma: waking up in the middle of the night with pain and tingling in my hands and arms. I thought I had carpal tunnel syndrome.

 

Six months later I was in end stage renal failure and on dialysis. Five and a half years later I received a kidney transplant. Four years later I am now applying for a lung transplant. It hasn't been an easy journey but at least it has been a journey.

 

Last year at this time my best friend was diagnosed with lung cancer that spread to her brain. She died in within 6 months. I do understand what my doctor meant by her statement.

 

It is frustrating, though, that scleroderma is such a misunderstood, little-known, deadly disease. It is rarely mentioned in discussions of autoimmune diseases, while lupus and multiple sclerosis are. All we can do is try to create an awareness of scleroderma, support each other, and hope for strides in treatment and toward a cure.

 

Let's face it, there are no nice diseases. 

 

Thanks everyone, for your concerns. I am nearing the end of the transplant evaluation. Tomorrow I have a cardiac stress test and meet with a neurologist. I have two more days of interviews and appointments and should be all finished up by the end of the month. I'll keep you posted.

 

miocean

 

 


ISN Artist

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Pain, like disease, is relative. It makes no sense to compare your pain to mine or to hers or to his. The pain I feel is only better or worse than the pain I personally have known. I can and do emphasize or sympathize with you, but I cannot compare levels of pain with you.

 

Like the others who have posted, I understand well-meaning people sometimes say silly things. I am guilty of it myself. I do wish your physician had given you a real answer to your question, though. I, for one, truly would like to know the answer after having read a bit of your story. I can't even imagine how much more so this is true for you.

 

Dbig

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Miocean,

 

What is going on with your lungs?   What is the diagnosis of your lung disorder?  How old are you?  I have lung involvement with scleroderma, just wondering what you are going through.

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