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Embarrassing gastrointestinal issues

gastrointestinal bowel urgency scleroderma bowel involvemen

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#21 judyt


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Posted 13 February 2013 - 01:30 PM

Hi red and all,


It is hard not to be gross isn't it? But we just have to get on and say it.


I see that you have consulted a Colon specialist and I think that is the right way to go, that is the area of the problem and if anybody knows what goes on down there they should.


The problem for me, and possibly others too is that along with the prolapse I had, which has been repaired,  the sclero has atrophied my rectum (made rigid and small)   so now it's capacity is about 2 table spoons.   There are tests to find out these things which are not painful and, as long as you don't think about it too much, not too gross.   So for me and others like me that new product would just make the situation worse I would think.


Thinking back over the years, the Gastro I went to at least ordered all the tests, but in the end because he is not a surgeon he more or less wrote me off as a hopeless case not worth bothering with :emoticon-dont-know: .    Although I must qualify that here it was partly because he found I had Pulmonary Hypertension and in his view PH was not treatable, so I might as well go away and await my fate :crying: .


As we all know PH is treatable, and in my case it was due to Rheumatic Heart Disease which I didn't know about and in fact my heart has been repaired with very little fuss and now the new Colorectal surgeon has done his best to help with the implant of the SNS.   So for the past couple of years I have been very much better.   2010 I had the valvoplasty on my mitral valve and 2012 the SNS.


Just ignore the fact that I now have cirrhosis of the liver from PBC, my Sjogrens is still active and I am inclined to Anaemia, and everything is right in my world!!!!!



#22 amberjolie


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Posted 13 February 2013 - 04:56 PM

Hi Shelley,


Yes, I was thinking about that (getting better by June), but I'm guessing that won't happen.   Now that I think about things, I really think it is probably a rectal prolapse (but I'll let the doctor make the diagnosis :) ).  If it is, I've actually had it for years but just figured it was chronic hemorrhoids.  But it only more recently started to be a problem.  I'm thinking though that she'll probably see it and then refer me to a colon specialist, which of course will take more time.


Hi red,


The prednisone is getting tapered off as we speak.  She only had me take 20mg a day for 2 weeks, now I'm on 15mg a day for 2 weeks, then it'll be 10mg, then 5mg, then stop.  I'm wondering if it's just so she can see if it makes a dent in my myositis (she's following my CK levels).  So we'll have to see what happens when I'm off it again, and whether she feels a more lengthy dose is needed.  My big fear was the weight gain/facial hair some people get, so I think that's why she gave me a rather low dose and did the tapering off thing. 

#23 Shelley Ensz

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Posted 13 February 2013 - 06:30 PM

Hi Amberjolie,


I'm sure you've heard this before, and I hate to sound like a broken record, but every time someone mentions prednisone in the forums, we are supposed to include our standard warning for Glucocoricoids, Steroids (Prednisone) Warnings for Scleroderma so that newbies, and their doctors, are well aware of the special risks for scleroderma patients, and especially the risk of sudden kidney failure:


"Corticosteroids (such as prednisone) strongly increase the short-term risk of developing scleroderma renal crisis (kidney failure). It also causes a 70 percent increased risk of developing pneumonia. It is crucial to avoid corticosteroids in patients with systemic scleroderma."

There, I said it. Again!


I asked one of our medical advisers to clarify what they meant by "low dose for less than two weeks", and they said something to the effect that anything less than 10 to 12 mg (I forget which) for up to two weeks they considered to be low dose (and thus in the safer range for scleroderma). 


We are well aware, of course, that sometimes there simply are no other treatment options left and therefore patients and doctors together decide it is worth the risk. The important thing is to know there is a super-special risk for scleroderma patients.


Anyway, just for the record, I have to post the notice so newbies don't all go running to their doctors in hopes of a high dose of handy steroids to treat their scleroderma symptoms!  I think just about all of us who have ever been on steroids, for any reason, will declare that despite side effects, we probably all felt better on them and usually that resulted in better functioning for us too...at least while it lasted.


They gave my husband a massive dose of steroids when he had his lung transplant (which is standard for that), and overnight he had insulin-dependent diabetes as a result.  However, despite that minor little detail of insulin shots all day long, he also felt downright fantastic! :yes:  

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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