It is a matter of debate just how scleroderma has affected me. I had organ involvement: kidneys, liver, entire GI tract. Polymyositis totally crippled me. Lupus hit my joints, kidneys.
Some of my swallowing problems might be due to scleroderma as well as some of my other GI problems but that is all open to speculation. Any of the 3 diseases could have caused my problems. PM was the main culprit by weakening my muscles but I believe that SD has also had an influence in my ability to swallow. SD deposits collagen and is a process tantamount to scarring. There is no reversing the damage. There was concern that I had pumonary hypertension but a catherization showed I did not. My breathing problems were just being caused by weakened diaphragm muscles.
Polymyositis was the worst, then lupus and scleroderma is in the questionable catergory. PM caused me to have barrets esophagus and I have had some difficulty with absorption in my intestines but that could be due to any of the diseases.
My biggest challenge was not SD but PM and it took 40 lbs of muscle in a week and left me a quadriplegic who could not swallow. I have been able to recover and now lead a fairly active and normal life again. No one thought I would ever walk or swallow again.
My bowel funtions have been fairly normal except when I had a feeding tube for several months. Even then I had daily movements and felt fortunate not to have other problems.
Let me know if you have other questions but my experiences were quite different from yours. No two mctd patients will have the same experiences...it is a rare, complicated and unpredictable disease. Lupus is bad enough but add the other two and it is a nightmare.
I can't help you with the recommendation to have surgery.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it." Helen Keller