Thursday, September 20, 2012

My GP Story

Guest Blogger
Melissa McElfresh

Let's roll back the clock. About 5-6 years ago I was having pain/bloating when I drank water, even a sip. I told my Primary Care Doctor and she didn't think it was anything to worry about. We live on 5.49 acres, with a well, so she told me to test it. It was fine, as always. I complained every year (just ordered my medical records and these complaints are not in there). Then 2 years ago I was having burning in my chest and after I ate, my pants didn't fit, then I got very tired. I started lying down during my work day, since I could not function well. Again, the next annual exam, all she told me was that I have GERD and to take Prilosec. I did and it didn't help. I was on and off of that for a year. In the Winter of 2011 I had so much pressure on my chest, I thought I was having asthma attacks. I would take my rescue inhaler and allergy pills, but it didn't make it go away. Since birth till now, these are the only issues I have ever had (but eczema) .

March 2012 I gave in with a burning in my chest I was not sure if I was having minor heart issues or not. My Primary Care doc didn't want to help and wanted me to go to ER. Since that is a $$ Copay, I went to an Urgent Care. I waited for 90 minutes to fill out paperwork and as soon as they saw my reason to be there (heart pain), I was admitted. I felt kind of bad for that, but knew I needed help too. From 2p until 6p I was in a little cube being tested on. All tests came back fine, no heart issue, still no high blood pressure and I am not diabetic (my father is, so I watch closely). Again, they felt it was GERD and doubled my dose plus added another dose per day to take.

I followed up the next week with my Primary Care doc, she had the 'results' and I was still having the stabbing pain in my chest. She then ordered an ultrasound. They checked every organ, I do believe for the $400+ it cost me! My insurance would not cover one cent of that!! Yep, that test was fine too. At this point my throat is burning too. So she thinks it is all the Advil/Aleve I take for shoulder pain (oh, I was in an auto accident on the freeway about 10 years prior to this and still have shoulder pain and sciatica … rear-ended on the freeway and my car was pushed into a cement barrier). So, esophagus damage was her next guess. So, I was sent to a GI Office for a scope. Prior to the scope I asked to be tested for gluten intolerance while they were already in there. I do not have a blockage, the stomach was clean, no inflammation of the esophagus, no silica disease and no signs of GERD. At that point I stopped taking the pills, as I was unable to have a bowel movement on my own.

It is now May 2012 and the GI Doc wants to do a Digestive Study (we all know this as the radioactive egg salad sandwich test). The results were 4 hours for me to process that stupid sandwich. My handout said the 'normal' range is 60-90 min. Hence, I have Gastroparesis.

I went to her office to find out the results. She then told me what I have. Gave me a piece of paper that was a print out from Mayo Clinic on GP. All it said was 'low fat, low fiber, small meals'. It said to avoid red meats, fresh fruit/veg, and other items. But it never said what I can have. She said, 'follow this and see me in 6 months'. What the ??!!

When I got home and picked up my jaw, I stated searching the internet for help. I talked to my concerned mother (retired RN) and she said 'are you sure?'. After that she didn't talk to me much about it. We are now in September 2012 and she is now speaking to me about my GP as she has seen my struggles. I educated my husband to the best of my ability, since I am learning every day. He understands and is very supportive. He will pick up things at the store that he feels I may be able to eat. Since my co-pay was already maxed out, I wanted off my birth control pills, so I elected to have my tubes tired. Family decision and one we talked about for many years (money was the issue). I read that maybe hormones have a roll in GP and since I was always sick on the birth control pills, might as well. It has not been the full 3 months yet to check and make sure the Essure procedure worked, but I am happy I did it. However, my GP is not so happy. I got worse after the procedure and have not bounced back. I would say I am 10 weeks into the 12 weeks. But even my co-workers have noticed I am sick more now. I had a Depo shot before the procedure and it should wear of soon. So, I am unsure if it is the hormones in the shot now, or if it is really my GP.

Every day I fight nausea. At times it and being dizzy are so bad I do not go into work. The days of pain seem to be gone, just a constant burn on my right side. I can't get it to go away unless I take an Advil/Aleve for a headache. I get them so bad and they turn into migraines. So, I wait to see if it will go away on its own before I pop a pill. Once I do the pain in the stomach is very bad (until the pill kicks in), doesn't matter if I have anything in my stomach prior. But, since I am only 35 I do not want to start down the road of pain meds.

My job allowed me to tap into next years vacation to use for my sick time. I was missing so much work and then ran out of time to use. They offered me part time position and we cannot afford it. At this point we are trying to sell our house, but are not having any luck. No matter how low we go. This is our only saving grace. I cannot keep missing work and I am unable to go some days.

The GI Doc said I need to take Dexilant (she is still adamant that I take a PPI). I used her free pills and then took my Rx to get filled. $150 for one month. I don't think so!! I told her and she gave me another one to take. I am, but it still does not make the nausea, pain, burning or dizzy spells go away. She gave me Zofran for the nausea. I was on it for about a week, then didn't take any more as I was not feeling nausea. During the time I took it I was off of work for about 4 days. I could not seem to get past being so worn out, had to take breaks to go to the mail box (used my inhaler … didn't help). I felt sick one morning and took it, since I was required to be at work that day. While driving to work my heart started to race. I made it to my parking lot, gathered my stuff and walked to work. I had to take little breaks to walk there and though I was going to throw up when I made it to door. My co-workers wanted to rush me to ER. I told them I think it is the Zofran. I looked it up on the internet and sure enough those are some of the reactions I can have. Tested it once more and same thing. The pills have been destroyed and the doctor was notified. She would not give me anything else for the nausea. So on a bad day I went to the store to find Bonine (like Dramamine). I took the one tablet (good for 24hrs) and felt like crap! I could not function and again did not go to work. I slept almost the full day and most of the next. Why would a person take this for sea-sickness??!! 

At this point I am out of options for what else to take. I do not want to try Reglan. Just want the nausea to go away. After 6 months I am getting use to the side pain. Only the days that I think a person is stabbing me, that is a different story. It is my hope that the nausea is tied into the dizziness and a pill can help with it.

My GI doc wants to see me in a few weeks. Little does she know I found a new GI doc to see. This gal came from WA DC, been out of school for 3 years and is specializing in GP. I get to see her on October 10th. At this point I am excited for a new person. I do not like the current GI doc, rather PA. Maybe this one can give me some ideas. I even would like to see a nutritionist. Since I consume so few calories (maybe 500 in a day... less on bad liquid only days). I did the best I can and have not dropped any more weight. To date I have lost about 15 lbs. My ribs are showing and I don't look that great anymore. Of all things, I lost my breasts. Bra's don't fit either. And pants, forget that if I am bloated. Can't wait for winter and to go to work in a dress when I am walking in the snow! Oh, and my hair is falling out. I take vitamin supplements, but guess I am lacking something else. I am sure most of you can relate. I don't ask for a pity party. This is my new life, so it seems. I just need help and guidance in finding what works for me. I do a food journal, but this trial-error thing is getting old.

Thanks for reading my initial story.

1 comment:

  1. Nicely written ! Thanks for sharing your story with such honesty- I can definitely relate.