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  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 does to my husband. Every day he calls me numerous times to see how I am doing. He sees me in pain; he sees me not being able to eat due to horrible nausea and pain whether it's by mouth or by infusion; he sees me so tired all of the time and even has to keep nudging me awake at worship services. But for him to have to clean up after me is just too much. He couldn't change the kids diapers without having to throw up. I feel just terrible for putting him thru this. So now what? Do I dare to go anywhere? Do I keep a diaper on? What kind of life is this to live for me and more importantly for my husband?! I have no motility in my esophagus and no motility in my stomach. I was told it will go thru my digestive system. So is this what happens when it goes thru my intestines? All I know is I am so tired. The last year-and-half it has been one thing after another. But this issue is too much. The "in sickness and health" shouldn't mean this for my husband. I am at such a dark place. Any input would be appreciated.
  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 alternative. Thank you for that information!
  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 was my saving grace when I was diagnosed. I have to confess and apologize how needy and constant I was on here with my issues. It has been a very long 6 years and I have learned so much and gone thru so much. I have lost so many friends thru this disease some were expected, but too many were so sudden. This disease can sneak up on you and that revelation has not only opened up my eyes but it also scares me. One thing I have learned is just how similar what this disease involves for us but also how different it can be. The constant theme for a lot of us is the bind or connection we have and how we truly understand and can relate and be there for each other. I am so lucky to have 2 people with this disease only a half hour away. So we talk a lot and meet for lunch every now and then. I began to share my journey on Facebook a while back. I have been so amazed by the outpouring of support. That has been my saving grace in getting thru some very tough times. But what I have been touched by is how many people have asked me to continue. For a lot of them to say I am an inspiration floors me, but I appreciate them saying saying that. I think anyone dealing with long-term health issues has to learn to cope. What is the alternative? Give up?! I don't think so. However it isn't lost on me that I have used up all of my currency so to speak. What I mean by that is I have used every drug there is to use against this disease, except for a stem cell transplant, which isn't an option for me according to my rheumatologist. Once the Cellcept to quits working then the disease will do what it will do. My pulmonary fibrosis is getting worse little by little but there are so many sclero saints who have it so very bad that I know that I have nothing to complain about. Like my mantra says..... IT IS WHAT IT IS
  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 extreme reflux. It was thought to be the answer and it was for 10 months and then the reflux returned. Now I have a feeding tube in because of what has been damaged and continues to be affected. My reflux is one of the worst cases the University of Minnesota doctors have seen. I am on every prescription for it there is and still have heartburn every day multiple times a day. My stomach has been completely been reworked and moved around to where my stomach is the size of a plum. The other portion of my stomach is still there and this is where my feeding infusions go into. So how it is possible that reflux is able to even happen the doctors can't explain. When they did the test to see what is happening the barium went down my esophagus and entered my stomach and immediately backed up the esophagus. No one in the room could believe it. I was like a circus sideshow with all of the medical people watching this. When the reflux gets to where it is so painful and feels like I am being burned alive then I have to take this GI cocktail that is so horrible. If I have to take 3 of them and it still is burning then I have to go to the ER for IV' s. The reason for my post is last night I was awakened at 2:20am with pain and discomfort in my chest / esophagus. It feels like something is stuck in there and it isn't going away. When I swallow even my saliva it feels like it's getting stuck and won't go down. I haven't called my doctor about it as I thought maybe someone else has this. I have no motility in my esophagus or my stomach. I have been told it is continuing to work its way down through my intestines. Is this blocked feeling in my chest a further escalation of the damage to my esophagus? I am concerned that food I eat will become stuck. I really can't go into our local clinic because they aren't equipped to know about this. The team of doctors I have are 3 1/2 hours away so going to see them isn't an easy thing to do. My infusions or feedings aren't going well as I get such terrible nausea. I also forgot to mention that I am malnourished. I am supposed to be doing 2-3 a day but with how I feel after makes it hard. The nausea is so bad that I am laying in a fetal position. They take well over an hour and I have to wait 4 hours in between them. If anyone else can relate to this and can share and give some insight I would so appreciate it. This disease is relentless. I am constantly being told how I am wasting away; It's painful on the number of people don't recognize me; I also get told the phrase we all get to hear......."but you look so good" which so minimizes me in that they may think I'm not really sick . My standard response is "I wish that I felt as good as you say I look". My mantra that I have adopted and live by and wear a bracelet that says..."IT IS WHAT IT IS". Any input will be so appreciated!
  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 wouldn't take. If I had drank 3 of them and still being burned then I had to go to the Emergency room and get hooked up to IV's of Protonix, pain killer and nausea medicine. This cocktail was horrible. I would throw up and after drinking them then it meant an entire day of nausea. I did this day and night and night and day. That's how bad it was. It was because my stomach was full of bile as it wasn't emptying and this would back up my esophagus. I had the surgery at the University of Minnesota. I am one of the first to have this there as this surgery is just starting to be tried for reflux. I had 2 surgeons........a Thoracis surgeon and a Bariatric surgeon. They said that my stomach insides were terrible.........all enflamed and swollen. What they did was take a very small part of my stomach (the size of a ping pong ball) and then made the bottom of my esophagus that opens to this little stomach very big at the end. The rest of my stomach which is cut away from the working one is still present and connected to my intestines. I guess it still performs some type of purpose. So now for the rest of my life I am only able to eat about 3 tblsp or maybe up to 1/2 cup of food at a time. I can't drink while I eat as this will fill my stomach so I have to wait to drink. I am not able to gulp liquids anymore either and have to take little sips. If I eat even one spoon too much of food it gets stuck and prevents even saliva from going down and I eventually end up throwing up the overage amount that I ate. I am to also avoid any sugar and no carbonated beverages. This surgery came about very quickly and I wasn't counseled like patients who are having the gastric bypass patients that are obese are. I was scheduled for the surgery and that was it. I was a sugar addict. I was never hungry due to my stomach being full of bile all of the time and my stomach would tell my brain that I was full. So basically lived on sweets, which I ate due to cravings. I know that I went through sugar withdrawal. After the surgery and the 3rd day home from the hospital I had a reflux attack. I was devastated thinking here I went through this drastic life-changing surgery and I still get to suffer with reflux! Well the doctors at the University thought it was just due to things needing to calm down as my stomach was so bad and what they found was one of the worst cases they had seen. Well I can say it is 4 weeks today that I had the surgery and it's been 3 days since I had reflux so maybe they're right. So now I am fighting depression due to the eating situation. To know that I will never be able to pile food on my plate on the holidays like I did before when my eyes were bigger than my stomach. I will never be able to go out to eat as it's a waste of money as I can only eat 3 tblsp. I know this will pass and I just have to shut this thinking down. I just loved to eat though. Even watching TV is hard as its commercial after commercial of food. Watching movies everyone is eating or at a restaurant with a plate of food eating. Our society is basically about eating. I also still crave sugar and candy. I have lost 18 pounds in 25 days. I still have a tube coming out of my stomach that I can put syringes of water into so I don't get dehydrated. I am now seeing the doctor weekly due to the weight coming off so fast. I am 5'7 and weigh 164 pounds and they said I could end up losing 40 to 50 pounds. Well if I lose that much I will look like a skeleton. It's amazing, in that years ago when I was overweight after I had my kids, I thought that if I could have bypass surgery I would lose the weight. I guess be careful what you wish for. Because I'm not eating much I have no stamina at all. I have no energy and it doesn't take much at all to wipe me out. I already was dealing with such horrific fatigue and now with this on top of it I am not able to get much done at all. When I had the surgery and was taken to my room I was in the bariatric ward. They all looked at me thinking why in the world was this woman having bypass surgery?! Some of these poor people were so large and to think they too would now be eating so very little when I'm sure they were probably consuming alot of calories. This disease has so done a number on me. The last year has been so bad and it just doesn't seem to let up. It's one thing after another. I have always had the motto "It is What it Is" and would just work through what was thrown at me. People would comment how they admired me because of how strong I am and my disposition. Well I have come to the point where I just don't feel that strong right now. Enough is enough. I have so many people thinking of me and I am so very grateful. I just wish I was the energizer bunny who was able to push through and do whatever needed to be done. Instead my life has become about being sick and the bad days are outnumbering the good ones. Sorry to ramble on. Hugs to all.
  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 quit in July I was able to get benefits right away. The Compassionate Allowance issue was just approved at that time so I had faxed this to the social security rep that helped me with my application. He included this with my application and requested that it be fast tracked and it was! I was and still am so thankful as there is no possible way that I could hold down a job. I was on the road every day as an insurace rep. Now I can't even drive out of town due to the pain meds that I am on and also because of the extreme fatigue I can fall asleep very quickly making driving very dangerous. I hope some of this helps and I wish you and your wife good luck on your application. It is amazing she is able to work and I can't imagine how she suffers every day with the cold.
  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 this surgery blindly though. I have done alot of research online and have been on boards with others who have had it and it sounds like quite a life-changing experience. But as all of us know this whole dang disease Scleroderma is a life-changing experience also. So I hope all goes well and that the surgery will be a great success with no complications. Today I had my 2nd injection into my back. With the x-rays and MRI's I've had done they found that my lower spine and discs are degenerating and I have what the call facet syndrome. So I have the 2nd of an injection into the back of a facet median branch block. Now that these 2 have been done then in a month or so I will have a radiofrequency ablation which is another kind of shot into the back that provides 8 months of no pain. I also have the spinal stimulator in to help with my leg pain. I had that put in May of last year and it has been so wonderful. It is amazing and even with that there are some days that the pain I have actually surpasses what I am able to cover with the stimulator so I can't imagine what kind of pain I'd be in without it. So you can see this good ol' disease has really come on full force on me the last 6+ months and I am so looking forward to having this surgery and maybe enjoy a wonderful summer. I will post as soon as I am able after the surgery. Hugs. Peggy
  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 fear of when an attack is going to hit and when one starts running to try and avoid doing the whole GI cocktail as it is such hard stuff to take. I am hoping I can find the chat line on this particular issue that one of you talked about before this surgery to get further insight. If someone knows the link please let me know. Thank you!! Hugs to all!
  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 years ago I came across a lady who had this surgery due to her being very obese. Well she lost weight but then it got to the point where she couldn't stop losing the weight and she looked almost skeletel. How are you doing since the surgery? Any information you could provide would be so appreciated. Thank you and hugs to you:) Peggy
  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 sit there and cry. So I desperately need an answer to this. I am on sucralfate and every other drug there is for this. The poor doctors have tried all of them and it seems as though the disease is just running wild after me. Thank you so much for your input and information!!!! Hugs, Peggy
  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 stomach isn't working so it fills with bile and this then is like a boiling pot and backs up into the esophagus. My stomach tells my brain it's full so I'm never hungry. The surgeon is considering doing a partial fundoplication where he would wrap part of my stomach around my esophagus. The concern he has with this is my ability to swallow after and also the possibility of a lot of nausea. The other consideration is gastric bypass surgery where they would just bypass my stomach completely. We meet (my family and I) with him the end of this month to discuss the pros and cons and the dangers. One thing my daughter, who is a pharmacist, is how do I take the mountain of prescriptions that I take; and also how does my body absorb nutrients. Has anyone heard of this or had this? Any input would be greatly appreciated. Warm hugs. Peggy
  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 a flap of skin above my right buttock. Well once the surgery is done the engineer sits with a computer and it connects to the device in your back. He then sends different sensations to different parts of your body that you can feel and then you tell them if it is good or bad; if you want it stronger. I have a remote with 5 different named settings that I can go to and each one is a different sensation. One may feel like tingling down my legs and back; one is a pulsating feeling; one is a kneadling type of feeling; etc. I can then turn this sensation up. They also within each of these have a setting for my back and for my legs so I can control those separately in strength. After the initial recovery period you go back to complete normal activity. The only suggestion is that they don't like you to have it on when you are driving as for instance mine goes down my legs and it can be a sensation that may affect your driving. My pain is still bad and I can't imagine where I would be if I didn't have this. Even with this I was in bed all day today with terrible pain in my legs and lower back. To also update on my disease as I haven't been on for quite some time............unfortunately the disease has really gone after me these last 6-9 months. It has gone through my digestive system and I no longer have any motility in my esophagus or stomach. On December 6th I am meeting with the doctors, and I will be finding out after all these tests they have done, if I am a candidate for the fundoplication surgery. If not then I will be looking at soft foods/ pureed foods and eventually a feeding tube. I have been in the hospital for a week after having so many reflux attacks that the GI cocktails that I took were way past the amount you can take so it meant an ER trip and then a long hospital stay. Now the food doesn't move out of my stomach and turns to bile and then starts up a nasty bout of bacterial overgrowth which requires antibiotics. I have this happening constantly which is unsettling on the amount of antibiotics I'm taking. I am aspirating into my lungs which is what is so worriesome to my pulmonologist, rheumy doctor and gastro doctor. I lost a good friend to this disease 2 weeks ago whose disease mirrored mine 6 months ago. In the last 6 months it went through his digestive system and also the aspiration into his lungs gave him pneumonia and he wasn't able to fight that off and passed away. This news was extremely upsetting not only to me but to my poor husband. So I hope that some of this information is of help to someone. I wish everyone the best and people afflicted with diseases like sclero and others are always in my thoughts. A huge warm hug, Peggy
  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 emails. Good Luck!!!!!
  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 to him saying that I don't really think I can wait until August. He is of the opinion that I should have the fundoplication done. The gastro doctor that I have said he thought I was too far gone to have this. Well my rheumatologist disagrees with him. So I have put a call to him asking if he thinks this needs to be done then lets do it as waiting another 2 months seems just too much for me. I am like a zombie with no sleep. I am also aspirating into my lungs and my pulmonologist would like that to quit as it only worsens my pulmonary fibrosis issue. So to see an actual study about the exact thing I am experiencing is just amazing to me. Since October the disease has become so much worse and seems to be on such a rage. I am so puffy and bloated that all of my pants seem tight. I can't imagine that I have gained weight unless it's from a prescription side effect. Well off to see if I can doze a little before being jolted awake by an attack. I so hate those GI cocktails. I am however thankful that I have been able to stop it at 3 so I don't have to go into the ER. I hate that whole trip as it's so hard on my husband to sit in an ER all night and then have to get up for work. I feel so bad having to do that to him. Warm hugs, Peggy
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