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Thursday, January 16, 2014

Tough to stomach this....

     So after nearly a year of not knowing what was causing the pain in my chest and abdomen I finally have a conclusive answer...a Hiatal Hernia.
     It seemed that with each test I was getting farther from an answer and yet so many theories were suggested I felt like we could just pull any one of them out of a hat and be as likely to be correct.  Various medications and lifestyle changes were made and still no relief.  I was getting more and more tired, depressed, frustrated, stressed and angry.
     As all of us who deal with RA and its never ending unpredictability know, it is the unknown that confounds and disturbs us the most...this was no exception.  Test after test came back either inconclusive or negative.
     I began to wonder if it was in my head.  Was this all just stress related?  I felt like a dog chasing its tail...a horrible and depressing cycle to be trapped in.
     So once again I was seeing my physician and when he asked how I was doing with the "stomach issues" I told him still not so good but I really did not want to undergo anymore tests since they all seemed to go nowhere.  He suggested "just one more" and so I went and had a barium swallow.  
     I had this done probably 15 years ago when I first started to have reflux but at that time is really showed nothing out of the ordinary.  This time, however, it did show something...a large, in fact, very large, hiatal hernia.
     At last an answer!  What surprised me about this was I had an endoscopy as one of the many tests done in the last few months and the GI doctor said that I had a "small" hiatal hernia and it likely was not the reason for my symptoms.  So while I was in the midst of my test the radiologist said to me "so he said it was small?" to which I said yes and he smiled and said "I would not call this small, your entire stomach has slid up through the hiatus and into your chest cavity."  Well that sounded pretty scary and ominous to say the least.  
     It did however explain my symptoms...feeling uncomfortably full after just a few bites of food, a sense of pressure in my upper abdomen, bloating, not being able to eat any food that was "dense" like meat or bread.  The reflux that usually is one of the telltale signs was already controlled by my PPI medications and thankfully that was under control for the most part.  So now I can not wear a bra as the elastic is unbearable and I pretty much wear gentle elastic pants for the same reason.  Thank goodness it is winter time so that it is not very noticeable at the moment...otherwise...
     I truly want to rip open my chest sometimes the discomfort is so pronounced.  I went back to see my PCP for a followup and he told me that other than trying lifestyle changes surgical repair was the only other option and he gave me the name of the doctor he recommend I see next.  I listened carefully to him and tried to digest (pun intended) the reality that I would need yet another surgery.  

     To tell you that I had a lot on my plate at this time would be a true understatement and may account for my inability to really consider his suggestion.  First of all, I had just had a revision of my foot surgery a week before where a "loose screw" (I know I can't help but laugh at this either) was removed.
     That went great and I was doing very well.   Earlier in the year I had been told following a DXA bone scan that I had osteoporosis of the vertebrae and started on medication for that.  I had attempted to reduce my corticosteroid down to 2mg from 4mg and it was not going well.  The biologic I was on was starting to fail and my RA was flaring like nobodies business.  I had a skin outbreak that was autoimmune related.  I had three major dental procedures that were in the works.  I was having a major battle with the insurance company over coverage for the new biologic my Rheumatologist wanted me to get started on, Xeljanz.  After 4 months of trying to reduce the corticosteroid we went back to 4mg and thankfully that coupled with the increased methotrexate worked while we waited for the Xeljanz to get approved.  Of course I could not start on that till after the foot surgery anyway but finally after nearly two months they approved it.  I had also injured my back but compared to everything else that was small potatoes.  On top of all that, thanks to the back pain, the flare, and the stomach I was in no shape to exercise and that is just horrible for me, physically and mentally.  
     I think by now you are starting to put the puzzle pieces together and can see the picture here with regard to my health at this time.  Put simply I was in bad shape and so when the doctor suggested a surgical correction I just kind of tuned him out and said I needed to time to research hiatal hernia repair and wrap my head around this news.  I have not mentioned that during this time I was also very busy with my work, my son got married, my husband had surgery, the holidays were upon us with all of the work and planning that goes with them and on and on.  It was not pretty people!  
     I was a hot mess and I was not sure how to proceed.  After a few days of feeling really low, tear filled meltdowns and major pity parties, which by the way, I think are absolutely healthy and necessary on the journey back from hellish times like these, I began to slowly take stock of each issue and adopt some solutions. 
     I knew there we a number of hurdles to overcome but I slowly began to tackle them one by one.  Medication for the RA was adjusted and the RA flare began to receed.  That meant I could start my swimming again and that was a huge help.  That in turn helped my back.  Once I started back on the corticosteroid the skin condition resolved.  The dental procedures went well and were finally completed after several months.  My Rheumaolotgist told me that the osteoporosis I had was very minimal and that if it were not for the RA he probably would not have even put me on the medication and that within a year or two I would likely be able to drop that.  He also said the I had no limitations from it which was very welcome news.  My foot revision went off without a hitch and as my exrecise increased my back pain eased up.  So aside from the stomach all was getting better.  

     Now it was time to focus on the biggest challenge of all....what to do about this hiatal hernia?  I started to do some research and to say my mind was not put at ease by what I read would be an understatement.  I discovered that it is a very delicate surgery with lots of possible complications and the success rate is quite variable.  So I thought I would try to manage it with lifestyle changes, a strict diet, etc. 

     Well it simply did not work. Here I am months later and I am as miserble as before if not more so.  My life is ruled by this discomfort and I think I have to face the fact that surgery is the best option.  I have an appointment with a highly recommended surgeon in two weeks and I will make a decision after that.  Of course, as always I have a "book" of questions to ask him to help me determine if 1) I need the surgery 2) I want him to do it 3) the risks and potential complications 4) the success rate, etc.  The answers will guide my decision.
     One important note.  I do most of my research on the internet and I think many of us do.  A word of caution.  When you are researching surgery for a condition remember that oftentimes the folks that post are those who are having complicaitons, problems etc. and are looking to health forums to get anwers.  If your surgery goes well are you likely to go to a forum on that topic? probably not.  You will just move on with your life.  So temper your fear and concern with that tidbit of wisdom.
     I have also learned that I am stronger than I think somtimes and that with the love, support, care, guidance and medical knowledge that I need I can get through this just as I have the many others that proceeded it.  Next time I post I hope it is to report a successful resolution to the hiatal hernia!  I am woman hear me roar!

Nan

2 comments:

Wren said...

Oh, Nan. You've really been through the wringer these last couple of years! I'm glad you wrote this post to let us all know what's been going on with you--I've wondered what you were up to.

I hope your meeting with the surgeon goes well, that you like him/her, and that you're comforted by what you learn. My only question is HOW could your stomach have managed to get into that position? And of course it made/makes you feel miserable!

Sending lots of warm hugs your way, m'dear, along with comfort and a good measure of patience. Please let us know how the surgery planning, etc. is coming along. And, of course, about how YOU are. :o)

carlascorner said...

Nan: I can't believe it's been this long and I'm finally catching up on your blog. OMG, what a time you were having. It sounds like you made great progress and by now I hope you've had the surgery and it went swimmingly. I also am switching to Xeljanz, so am anxious to know how you're doing. Hopefully this finds your life much calmer and healthier.