Walk with me on my journey of illness to the road of happiness and a life of fulfillment

Another post for GP Awareness Month.

I’m pretty sick with this disease at the moment, but I’m forcing myself to get this out there because it’s very important to me to educate and spread awareness about this life altering disease.  My quality of life has been greatly impacted.
We need to find a cure!

I had been diagnosed with Gastroparesis for about 2 years, at this time. I was diagnosed around 2008.  I tried every medication used to treat this disease, of which none of these medications worked for me. Domperidone may have worked a little, but not too well, or I would still be on it.  I’m not going to continue putting poison into my body, unless it’s actually making a difference.

During this time, leading up to my 1st feeding tube surgery, I was in and out of the ER all the time. I was hospitalized many, many times due to dehydration and malnutrition.  Let’s just say, I was well known on the 3rd floor, where I was always admitted.  We were on a first name basis.

One day, in 2010, I went to a routine follow-up appointment with my GI doctor, at the time.  As you know, the first stop is always at the scale.  I had, once again, lost a considerable amount of weight since my last visit.  The weight was dropping fast.  This was the day my GI doctor said I needed to go home, pack my bags, and go directly to the hospital to be admitted for placement of a feeding tube, the following day.  He told me I was in serious condition and it was time to take life saving measures to keep me alive.  Of course, I was terrified.  The truth of the matter is, I should have had a feeding tube placed long before now. He waited til I was deathly ill, which put me at a very high risk of getting an infection because, as he put it, they don’t normally take people as sick as I was to the operating room. We had discussed feeding tubes on more than one occasion, so I knew this day was always possible.

I went straight home, packed my bags for a 3-4 day hospital stay.  I was told I would have surgery the following day and I wouldn’t be able to use the feeding tube for 24 hours post-op.  They would then need to teach me how to use it and how to care for it before being discharged to home.

When I arrived at the hospital, and after I got all settled into my room, I was immediately started on TPN.  I was really sick at this point, much sicker than I realized.  Then they did all the usual pre-op things such as lab work, scans, etc.  I was then given all my bedtime medications and some new medications, and told I could sleep.  Sure! There wasn’t much sleep going on.  It’s never easy to sleep in a hospital anyway, but it was especially difficult on this particular night.

Morning arrived, and I was wheeled off to the OR.  When I awoke, there was a J tube dangling from my upper, left abdomen.  It hurt like hell.  The pain continued to get worse and worse.  Then came the high fever, the red, oozing, swollen abdomen, and the red lines/streaks all around the feeding tube stoma. After lot’s of blood being drawn, it was discovered that I had developed Staph, Abscess, and Cellulitis, overnight!  Now, I was very seriously ill.  To prevent me from becoming septic, they were pumping me full of all different kinds of antibiotics and antifungals.  They didn’t have time to wait on culture results that take days to grow.  4 days came and went.  I was only getting sicker. I can’t even express the pain associated with this.  It was the worst pain I have ever experienced in my life, and I’ve given birth 4 times.  I was pumped full of all kinds of medications.  I was mostly out of it, asleep.  So much, that I had no clue that the Chaplain had been called up to my room.  I only learned about that when I was home and someone mentioned when the Chaplain was there. Chaplain?  What?  That’s seriously sick when the Chaplain pays you a visit.

One day, I sat up on the side of the bed.  My mom was there.  She came over, sat on the bed next to me, and put her arm around me.  I started crying and said, “Mom, I’m really scared.”  She said, “I know, I am, too.”  At this point, I was really afraid I was going to die. I think she did, too.  Then there’s the Chaplain. I’m thinking, we weren’t the only one’s, at that time, with this thought in mind.

At some point, after all my veins were blown out, they thought it might be a good idea for me to have a picc line. I was terrified of having a picc line. With my medial knowledge, I know that is never a good thing and it puts you at a very high risk for infection. But, when you have no veins to work with, you have no other options. And, to my understanding, TPN should always be administered via a picc line. There’s a high risk of developing Sepsis with a picc line. Sepsis is the last thing I needed, and I know what can happen when one develops Sepsis. But, I really didn’t have a choice in the matter, as I was still needing to receive TPN (Total Parenteral Nutrition). I was being fed through my veins via a regular IV.  I was able to stall them for a few days, once they mentioned the word picc line. But, I did end up with a picc line. I was already full of infection and I didn’t like how close the port was located to my heart. A picc line is inserted through a peripheral vein in the arm.  It’s then advanced proximally toward the heart through increasingly larger veins, until the tip is resting in the distal superior vena cava, the inferior vena cava, or the proximal right atrium. They should have started a picc line right away, when they started TPN.  The last few times I was in the ER, I was told that it might be a good idea for me to have a permanent port placed in my chest because my veins are small and full of scar tissue from having received TPN through a regular IV, and from all the blood draws and IV’s I’ve had over the past 10+ years.  Getting an IV started on me is never easy and takes several nurses, and sometimes even doctor’s, to get an IV started that won’t blow, or infiltrate immediately. This means I am poked several times, of which sadly, I have become used to.  With a port in the chest, they can hook an IV up to it.  They can administer IV meds and fluids through it, and they can draw blood from it. It’s not a bad idea, but the thought of the “almost guaranteed” infections, I’m in no real hurry to have a permanent port placed in my chest.

For 14 long days, I was the sickest I’d ever been in my life, up until that point, anyway. It wasn’t even safe to take me back to the operating room til day 14 post-op! That’s a long time. People have open heart surgery and go home in 4 or 5 days! I was taken back to surgery to have that J tube removed. They opened me up, to scrape the abscess out. They then placed another J tube on the opposite side of my abdomen. This time, when I awoke, there was a drain also hanging out of me, to catch the blood. There may have been a drain after the 1st surgery, but I don’t remember much from that time.

I was slowly getting better. TPN was stopped. I was started on tube feedings, 24 hours post-op. I was getting up, and out of bed, walking the halls. I spent 4 more nights in the hospital, for a grand total of 18 nights, before I was well enough to go home. My life had been, forever, altered. We had no idea how long I would have this feeding tube.

After a few months, I returned to work at my full-time job. I was still sick. There is no cure for Gastroparesis. With the feeding tube, I was still being hospitalized, but not quite as much as I was before, because I was getting proper, and enough nutrition, for the most part. My liquid nutrition is poured into a bag, placed in a backpack, with a pump that pumps the formula into my body, through the J tube, and carried upon my back. Wherever I went, it went with me. The J tube entered my jejunum, the second part of my small intestine, bypassing my stomach.

I was instructed to not get the sight around the feeding tube wet. What? No showers? No swimming? I was told I could wrap myself in plastic wrap, tape it all up, and shower, but whatever I did, I was not to get it wet. My husband wrapped and wrapped and wrapped me in plastic wrap. There was no way that feeding tube was going to get wet! Wrong! I couldn’t have been wrapped up any better. This meant no more showers. I had always taken showers daily, up until this point. I now had to bathe myself with Adult Disposable Washcloths (basically a thick baby wipe) and wash my hair in the kitchen sink. What a hassle. 10 months of that was more than enough.

10 months is when I went to the Mayo Clinic in Rochester, Minnesota. I’m not really going to say much about that experience, except it was a waste of time and money. I thought if anyone could figure me out, it would be a doctor at the Mayo Clinic. WRONG! They did nothing, I hadn’t already had done. I was told I did not have Gastroparesis. I left with a diagnosis of Fibromyalgia. Duh……I had already had that diagnosis for years. I had also been on Domperidone for quite some time. I think that had something to do with the Gastric Emptying Study they did, because I had already had one. That’s how I was diagnosed to begin with. Needless to say, I was very frustrated and disappointed when I left Mayo. They did remove the feeding tube because I had had Cellulitis for quite some time and that is very painful. It felt so good to have that J tube out of me.

I came home, and continued to be sick. Just like before I had the feeding tube. After many days of missing work, many nights spent in the ER, many hospitalizations for dehydration, malnutrition, rapid weight loss, and 4 years later…………………I had another Gastric Emptying Study done. The results were the same as the 1st Gastric Emptying Study I had done, when I received my diagnosis of Gastroparesis. I’m severely delayed, as far as my stomach emptying food from my stomach, into my small intestine. In July, 2014, I had my GJ Peg feeding tube surgically placed. There were no immediate complications because my new GI doctor didn’t wait until I was deathly ill. I was ill, but not too ill to go to surgery. GJ Peg feeding tubes are replaced every 3 or 4 months, as they do wear out and begin to fall apart. My GJ Peg feeding tube was placed into my abdomen with the help of an EGD, a scope that enters my mouth and goes down into my stomach, and into my small intestine. The G tube is the big tube you can see hanging out of my upper, mid abdomen. There are 2 ports on the end of this tube. One goes to my stomach. That’s the “G” tube (Gastric, Gastro….stomach) Inside the G tube is the J tube. The J tube goes beyond my stomach, bypassing my stomach, and into my jejunum (small intestine). This is the part of the small intestine where nutrients are most rapidly absorbed. I use the “G” port for decompressing/venting. If I feel “full,” nauseated, or distended or bloated, I open the “G” port and vent. If there’s too much fluid in my stomach, I can empty it via the “G” port. Any air trapped in my stomach can be released this same way. My feedings are connected to my “J” port, going directly into my small intestine. It’s very important that I flush both tubes several times per day to prevent clogging. Unfortunately, even with all the flushing, the tubes can and do, still become clogged at times. My doctor instructed me to use Coke for unclogging. I use a 60 ml syringe and pour the Coke through whichever tube may be clogged. This usually works, but not always. When this doesn’t work, that means another trip to the ER, where most doctor’s are mostly clueless about this potentially life threatening disease. If they can’t get it unclogged, I’m usually admitted and seen by the GI team the following morning. Sometimes, I’m even sent home, because of their ignorance. It doesn’t take a rocket scientist to know that a clogged feeding tube will NOT work, meaning I’m unable to feed myself. I hate ever having to go to the ER for Gastroparesis related problems. Let’s get these doctor’s educated about this miserable disease affecting millions. There’s nothing worse than walking into the ER and seeing the looks on the faces of these very familiar faces. “Here she is, AGAIN!” There are many other problems, beside clogged feeding tubes, that land us in the ER. Most of the time I’ve been instructed to go to the ER by my own GI doctor. I’m then told, by the ER doctor, to go see my GI doctor tomorrow!!!! Constantly being pushed around in a big circle. Very frustrating, to say the least! I know my body. I know what’s normal and what’s not. I know when I need to go to the ER.

It’s very important we spread awareness about GASTROPARESIS. More and better RESEARCH IS NEEDED. MORE CLINICAL TRIALS ARE NEEDED. NEW AND BETTER TREATMENT OPTIONS ARE NEEDED, AS THIS IS NOT A ONE SIZE FITS ALL DISEASE. EDUCATING THESE DOCTOR’S IS OF THE UTMOST IMPORTANCE. GASTROPARESIS IS A POTENTIALLY LIFE THREATENING DISEASE AND SHOULD NOT BE TAKEN LIGHTLY! PEOPLE WITH GASTROPARESIS DIE EVERY DAY. THIS DOES NOT HAVE TO HAPPEN! Many go years before getting the diagnosis. We are the people that don’t give up. It’s easy to give up when you’re constantly being told, “everything is fine.” If you think you may have this disease/disorder, DO NOT GIVE UP. KEEP GOING TO DIFFERENT DOCTOR’S UNTIL YOU FIND ONE THAT WILL LISTEN TO YOU AND DO A GASTRIC EMPTYING STUDY. NOT EVERYONE LOSES WEIGHT WITH THIS DISEASE. MANY ACTUALLY GAIN WEIGHT AND ARE BEING TOLD THAT BECAUSE THEY ARE GAINING WEIGHT THEY CANNOT POSSIBLY HAVE GASTROPARESIS! YES THEY CAN AND OFTEN DO!

Feeding tubes are only used if absolutely necessary. Most patient’s with severe Gastroparesis are being fed through a feeding tube or a vein in the chest, TPN.