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!