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Magic Bullet ... Good News! :)


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#1 MicheleM

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Posted 08 May 2009 - 07:56 AM

Hi all. It's been a long time since I posted, but I went to see my new gastro specialist today and wanted to send an update. I had an endoscopy and an ultrasound endoscopy a couple weeks ago along with an MRI and an MRA (arteries ... new for me too!) and got the results.

Looks like the Scleroderma is still plugging right along (albeit slowly thank goodness) in my stomach and small intestines. He saw the thickening in my stomach and found some benign polyps. Everything else looks to be in good shape and that was very good news. The doctors were thinking I had something wrong with my pancreas but that is not the case after review and I am one happy camper about that! The doctor is thinking that the pain I've been experiencing for the past 9 years may be the result of bacteria in my small intestine. He said that in Scleroderma patients the motility of the small intestine is afffected and thinks that may be cause #1.

If he's right ... it means taking a "magic bullet" pill and life will get FABULOUS for me. He had another patient who had great results and we're hoping for the same for me. The second and possibly underlying cause could be Sphincter of Odi dysfunction. This is where the duct from the liver and pancreas drain into the small intestine for processing of the food from the stomach. Little science lesson here ... wooohoooo! Anyway, when it constricts there's pain and back up and "sludge" that develops. The sludge was found a few years ago during another procedure, so that leads us in that direction as well. He thinks I have type 3 which ... of course ... is the most difficult to treat as it more intermittent in nature. He's going to see if "the" specialist in the field (the specialists specialist) in South Carolina will take on my case and if not at least help us know whether to do another procedure on the duct to relieve it. As is the case with me and my family (we have to have a "Murphy" in our heritage!), my duct is abnormally small which of course makes the procedure a little more risky. If we "go there" the best thing to come out of it would be no issues .... however this one has the risk of pancreatitis and if you don't know what that means, I don't want to go there. Just know it isn't a good thing. Science lesson OVER!

I'm hoping that this message will help someone else who's suffering the upper right quadrant pain that I've had. Best description would be gallbladder pain, but I had mine removed in 2000. Once diagnosed as GERD and many other things, I'm sure now it's just another chapter in my Sclero history book. It's taken 9 years to have found THE RIGHT DOCTOR for my gastro needs, but my patience has paid off. Just a few weeks ago I went through 2 doctors and the second one told me I'd have to live with it until my husband and I demanded to see someone who might help. We think it's paid off ... and thought so since the first moment. Sometimes you just know.

When I was first diagnosed with Sclero I was told I'd be gone in 5 - 7 years at the most. Then I learned how wrong doctors can be and how important the support system and moreover how important one's attitude is. I may have Sclero, but I like to think it doesn't have me. With the support of friends and family I am able to live life fully and have learned what true friends are. We all get the emails about how we'll be there for one another, but it's a completely different thing to live with people in your corner pulling with you even if they don't understand what it is we're pulling against. Thanks for being there to listen to me through the bad and I hope you find this as good as I do. My gastro doctor has given me hope again. Isn't that what we're all looking for anyway? A purpose, and, in turn hopes of a bright future?
Soft hugs your way,

Michele

#2 Cheryle

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Posted 08 May 2009 - 02:56 PM

Michele,
Hi neighbor!
Looks like you have been traveling down a very rugged path. I glad things are looking up and that this new doctor is trying to get you to the best doctor for treatment.
Cheryle

#3 susie54

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Posted 08 May 2009 - 05:37 PM

Thank you so much Michele,

I have often thought my upper right quadrant pain was more than what they could figure out. I too had my gallbladder out 15years or so ago. This pain started with my MCTD and last year when I really had some problems my gastro thought he could figure it out but things calmed down. It must be something odd like yours and I will tell him about it when my quadrant pain becomes a problem again. I hope yours in straightened out and you are relieved. Sclero can do peculiar things that even doctors don't understand. As my gastro put it tricky but treatable.. Good luck and thanks for sharing.

Susie54

#4 MicheleM

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Posted 13 May 2009 - 02:07 AM

Susie, I am very glad that I could reach out to you! Mine has been intermittent and before seeing this doctor I had seen 2 other gstroenterologists in the same practice, one wanting me to swallow a pill cam and the other saying it was pancreatitus. Scans showed organs to be fine, liver not perfect, but I'm not asking for perfection!!! LOL Anyway, this drug is taking some time to work, but they said up to 10 days. I can say I have A LOT more energy and for that I am grateful!

The other thing the doctor said was to limit protein intake and eat MORE FIBER. I know Gastros push that all the time, but I've tried to reduce the meats I eat and replace with beans and I do believe it's made a difference. So, I'm learning how to eat. Like it isn't a natural process (?) Maybe not what I was taught, but learning new recipes and that's always fun!!!

Thanks for the posts.

Michele
Soft hugs your way,

Michele

#5 debonair susie

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Posted 13 May 2009 - 09:18 AM

Hi Michele,

This IS good news!
To have had this problem and not have something concrete, to give you the hope you now have.
You DO have a positive attitude and that is what has gotten you to this point! Congratulations!

I am so glad you now have a gastro who will work for you, to help you as much as he possibly can.

I will absolutely keep you in my thoughts as you walk the road toward feeling better.
Special Hugs,

Susie Kraft
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#6 susie54

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Posted 15 May 2009 - 10:56 AM

Thanks for sharing Michele,

I just getting caught up here. Your advice will be well taken. I try to eat alot of fiber and fresh produce. It does help. I hope you are doing well otherwise. Thanks for all the good info. Susie54

#7 MicheleM

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Posted 15 May 2009 - 07:42 PM

Hi all. Another update ... "As the Saga Continues"!!! LOL I got a call from Univ. of South Carolina. Seems Dr. Cotton ... the specialist's specialist ... will see me and wants to work on my Sphincter of Odi! He's already scheduled the ERCP (Endoscopic retrograde cholangiopancreatography) for the end of June which seems forever away, but in the scheme of things, well what's another month? We haven't nailed it all down yet, but I'm hoping this is the 2nd half of the good news I've been hoping for! Today was basically pain free ... just the end of the day & that's probably more stress related :) It's 2:30 am and I'm never awake at this time so I'll attribute that to stress as well! The only worry is - during the ERCP if my pancreas gets irritated and there's a 30% chance of that, well it's going to be a difficult situation. Dr. Suh here in Atlanta was very clear about the complications that "could" arise ... may be just a little apprehensive tonight! The thinking behind the Sphincter of Odi problem is the tightening from sclero and that's the last worry. Once it's cut (which is how they relieve the tightness) we know about the healing powers of sclero & scarring. I'm trying to stay as optimistic as my first post, it's just a little harder this time round. I'll have to take a Medical Leave of Absence from work & that's a bit scary, as no one there really understands what we Sclerodians go through as we "look" normal & for some of us it's more an internal battle than external. SO, wish me luck & I'm going to make a better effort at uplifting through the board.

Hope all who read are having a good day with lots of smiles!
Soft hugs your way,

Michele

#8 janey

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Posted 16 May 2009 - 03:38 AM

Michele,
I wish you lots and lots of luck. From your wonderful update it sounds like lots of good news. To have been dealing with your pain for so long and now having a possibly treatable cause is wonderful. It's natural to have lots of anxiety concerning the South Carolina trip and procedures, but with all you have been handling - it should be a piece of cake. Just do everything you can to stay calm. Take a lot of me time and try not to get too stressed. If you need some ideas, please revisit our emotional adjustment pages as well as post here. You know you get lots of hugs here.

Here's some big hugs,
Janey Willis
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