Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

About Peggy

  • Rank
    Gold Member

Profile Information

  • Location

Recent Profile Visitors

1,838 profile views
  1. ​WARNING - UNPLEASANT TOPIC The reason I am here is I need to know if anyone else has had this happen because of this disease. Last night I was laying in bed with my husband and pets. All of a sudden without warning I realized that I was "going". I immediately jumped out of bed. I couldn't stop it. My husband ran and got some towels. It was literally pouring out. I finally just tried to use the towels to get to the bathroom. I got in the shower and it still continued. I had NO CONTROL. The sclero has robbed me of what "was" my life. What I can't stand happening is what it d
  2. Amanda, Thank You for the wonderful compliment. My Pastor was over one day for a visit. She asked me if I ever ask "why me"?. I sat there and after some thought I answered her and told her that I had never once thought that. I told her now that she asked this I believe everyone has some burden to bear and this is mine. Thank you for the information on the stomach issue. This is what is so hard for me. Anything I eat orally or with the infusion it is followed by horrible stomach pain, discomfort and nausea. As horrible as this solution sounds at least I now know there is an alt
  3. I can't thank everyone enough for your advice. I am humbled that I was remembered. The feeling of blockage isn't as constant as it was before. I am going to call the GI team tomorrow and the infusion nurse tomorrow as I agree with you that they should know what is going on and hopefully can give some insight. This holiday weekend was a complete washout for me as I am in so much pain and I am so tired. I have no strength. I still do what I have to but can hardly wait to finish so I can lay down. I continue to battle this part of the disease in my head and in my heart. This forum w
  4. First of all, I have to apologize for not checking in for a long time. But to be brutally honest this disease has been awful for me. I have Systemic Scleroderma and 9 other autoimmune diseases. The last year it has totally wiped out my digestive system; I had a spinal stimulator put in for the horrible pain in my legs and lower back, which even with that in I deal with pain that is so constant and debilitating; I had a really bad cardiac issue that resulted in an ablation of the lower part of my heart; with regard to my digestive system I had gastric bypass as a new trial procedure for my
  5. On April 26th I had the Gastric Bypass surgery for my reflux. My reflux had gotten so bad that I was having attacks 24/7. I constantly aspirated into my lungs; it was burning my voice box and has changed my voice; I have no motility left in my esophagus or stomach; when I would have an attack it was affecting my heart. When I had these attacks they were like being burned alive in the inside. That is the best description I can give. It is so painful and I would have to drink a lidocaine/malox concoction called a GI cocktail. I would have to repeat these sometimes because the 1st one would
  6. Scleroderma is listed as a "Compassionate Allowance Disease" and because of that her application should be "fast tracked". If her medical records indicate how this disease impacts her daily life and how difficult it is it will make it much easier for approval. Her doctor should document very well in her medical records how the disease is attacking her body. I had quit working in July of 2007 due to being unable to work. I applied for disability in November and was approved right away and received my first check in January of 2008. There is a 6 month waiting period so because I had to
  7. Well surgery is set for next week. I had another really bad attack last week and really aspirated into my lungs. This then developed into filling my left lung. I also had a pre-surgical physical that ended up with an abnormal EKG. So last Friday I had a stress test/ECHO and it was normal, thank heavens. The reflux attacks are so hard on my lungs and then my heart. After the attack I have lingering nausea from the lidocaine concoction and now I also have this horrible chest pain due to the aspiration. So I am so anxious for this whole mess to come to an end. However I am not going into
  8. Well my surgeon said the partial Fundoplication isn't a possibility as it won't work in my case. He has consulted with surgeons out of the country and their advice is the gastric bypass. So the surgery is scheduled for April 26th. I would be fibbing if I didn't have worries about this whole thing. I have done alot of research on it and there is definately good and bad about it. Every time I put something in my mouth I keep thinking it may be the last time I can eat like this or even eat that particular food. I just want the being burned alive to end; the taste of acid in my mouth; the f
  9. I wanted to thank you for this information. My husband has been searching for as much information as possible on all of this. I know my family is very concerned but they are even more concerned if I don't do something. My attacks are hitting all of the time and they are so very painful and bad. My aspirating is extremely concerning. Thank you again!! Peggy
  10. I think I am leaning in my mind towards the bypass than I am the partial fundoplication. I got the idea from the nurse that the surgeon is leaning this way also due to the fact that he is concerned about my inability to swallow and really bad nausea if I do the fundoplicaiton. If you could would you please run through for me how this was done? How long were you in the hospital? Time to recover? How do you get your nutrients? How do you take your meds? My stomach will be completely bypassed being it isn't working so I guess I am at a loss on how this will all work. I know about 10 year
  11. I would love to have the support group that I could talk to about this and get some insight. Unfortunately my attacks are all of the time and the last really bad one on Saturday I aspirated so terribly. Even after the attack subsided and the GI cocktail helped the burning I had a new development where my chest hurt so bad it felt like a heart attack. I couldn't or didn't dare to cough as it just coughed up the horrific acid and I was so afraid to have it start all over again. All I could do is sit there upright on the couch at 6am (yes - 6am is when this hit!) and all I could do is just si
  12. I have Systemic Sclero and 7 other autoimmune diseases. The last 6-9 months have been horrible. The issue now is I have just a very minute amount of motility in my esophagus and none in my stomach. I have reflux attacks 24/7 and aspirating into my lungs. These attacks are like being burned alive and I use a GI cocktail to try and numb my esophagus and throat. This is a mixture of lidocaine and aluminum/magnesium. After 3 of these and it doesn't work then it is off to the ER for IV's of protonix (pantoprazole), something for the pain, and something for the nausea. What is happening is my
  13. An update for anyone in horrific pain. Please see a Pain Management specialist and ask about the Spinal Neurostimulator. These devices can help with pain for ANYWHERE from the neck down, whether it be the tip of your fingers, or your toes and anywhere in between. I had the final surgery and on 2 occasions have met with the Boston Scientific engineers to change how and where my stimulators work. It is so amazing. The spinal surgeon put in 3 needles and actually tied them to my spine. He also took out a small little piece of my spine to insert the device and the battery running it is in
  14. Hi Kamlesh, It was so good to talk to you! This has been such an answer for me. Like I told you, the pain scale for me on my legs, lower spine and hips is an 8-10. At least with this device I am able to cover it up with the sensations. I can't imagine what it would be for me if I didn't have this other than I would be in a fetal position in bed in such pain. Even with this I am still laid up a lot of the days with the pain. I now have pain all over from Polymyositis, the sclero and fibro. I so hope this is a success for you. I will also send you a personal message to you with my em
  15. It's amazing to see this study as this is EXACTLY the issue I am suffering with right now. I have no motility in my esophagus and stomach and am dealing with constant reflux attacks. The kind if anyone can relate that are like being burned alive from the inside. I am having these attacks constantly day and night and aren't brought on by my eating the wrong thing but due to bile that forms and gathers in my stomach and then goes back up. My rheumatologist wants me to see a new gastro doctor that is coming on staff in August whose specialty is motility issues. Well I have now placed a call
  • Create New...