Here you will find photos from my journey through gastroparesis treatments. Included in this section are photos from my Gastric Neurostimulator surgery (gastric pacemaker), Feeding Tubes (Nasojejunal, jejunal (surgical and endoscopical) and low-profile jejunal), Surgery Complications , Granulation Tissue, Infections of the Stoma, Port Infection , Hospitals and less depressing times where I was able to Get out and About.

Gastric Neurostimulator Surgery

After 4 months with a nasojejunal feeding tube (NJ tube), I was able to gain enough weight to safely go through the surgery required for a gastric neurostimulator placement. It was performed on the 25th of February, 2010. My symptoms of nausea were immediately reduced and today, after 3 adjustments, I rarely require any nausea medication.

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Feeding Tubes

I exhausted all medication options and continued to lose weight. It was then, my gastroenterologist (Dr. David Patterson) decided to place a nasojejunal feeding tube endoscopically to help me gain weight. It was successful (even if slow), and in April, 2010, a permanent jejunal feeding tube was placed, also endoscopically (requiring an overnight hospital stay). When the jejunal stoma healed, I was able to change my long dangling j-tube for a low-profile Mic-key jejunal feeding tube at the end of July, 2010.

With all tubes, I used a pump to deliver my formula through my feeding tubes. Past and present pictures of my feeding tube setup can be found in the following slides.

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Surgery Complications

Between my permanent jejunal feeding tube (J-tube) and my new low-profile button, I had a surgical complication resulting in emergency exploratory surgery. My doctors were attempting to place a low-profile button (non-balloon style) endoscopically, when the tract between my abdominal wall and jejunum broke. My intestine was then freely floating inside my abdomen, leaking all sorts of matter along the way. I was immediately rushed into surgery to locate the leak and clean up all forms of infection. I was in the hospital 5 days and made a full, though rare, recovery. I was, however, left with an ugly surgically placed j-tube held in place only with internal stitches. When I got measured for a new low-profile button, they had to take out my surgical tube. I was lucky to have it replaced with a tube similar to my old one.

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Granulation Tissue

I am lucky to not have too many problems with granulation tissue. I catch it early and get it burned off in an office visit, when I find it. Most of the granulation tissue pictured below is actually on the inside of my stoma. Some of it can be seen from the outside, and that is what I tried to capture.

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Infections

I’ve had three instances of stoma infections. Some of them were quite difficult to get rid of and often required extended use of Cephalexin, liquid through my j-tube. A little redness around the stoma is pretty normal due to the fact you have a hole in your abdomen, there is going to be irritation. You usually know when it is infected when that redness changes by either growing, changing colors or when it has some discharge that is green, yellow or foul smelling. Do not delay treatment when you suspect an infection. Better safe than sorry. Get in to see a doctor immediately as untreated infections can become deadly.

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Port Infection

My first official port infection nearly took my life. Here are pictures from the event.

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Hospitals

Because of a problem with my heart, I had to spend a little over a week in the cardiac ward of the Evergreen Hospital. I was treated exceptionally well there and my room was amazing. I was not allowed to get up and walk around because it would cause my heart rate to go above 150 (it was 130 at check-in) and that would not be good. But my nurse was nice enough to sneak me into a shower half-way through my stay. I got to stay in until my heart rate hit 150, then she made me get out because the other nurses would start to come in. Everyone on the cardiac ward is hooked up to wireless heart monitors and they are…monitored by nurses just outside the room. I didn’t know I’d be staying as long as I did, but I had some wonderful visitors (like my dog Ellie) and my laptop to keep me company while I waited for my heart to settle down.

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Getting Out

Despite appointments, hospitals and ER visits it is important to get out and about. I try hard every day to keep that in mind as having a chronic disease, such as this, can easily take over your life. Getting out into the real world with friends, family and your pets help you forget that medical world long enough to stay mentally healthy. It is important to help you fight your illness physically, I believe. Here are a few shots of the things I like to do when I’m not confined to an IV pole.

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  • 5 Responses

  • Russ Zkowski says...

    Really marvelous post. Theoretically I could write something like this too, but taking the time and effort to make a good article is a lot of effort…but what can I say….I’m a procrastinater. Good read though.

  • Mary Angier says...

    How did you get off the pole? I feed all the time.

  • Sita says...

    Thank you so much for sharing your story. I have been living with gastroparesis for three years and am now about to have surgery for a jujunal feeding tube. Reading your story has helped to prepare me for the next part of this adventure. You are a personal hero of mine.
    Sita

  • Angela Collier says...

    Dearest Kirby – It was so inspiring to read about your “tummy” experience. I have had stomach problems for almost 20 years, but it was just recently (past 1-2 years) that they advanced to the point of ruling my day to day life. I have been through a lot of the same things you have & your thoughts & suggestions have helped me so much. I am on the road to recovery after being diagnosed with IBS, gastroparesis & malnutrition & losing weight down to 87 lbs. (not good for someone 5’5″ tall!!). I have been on TPN 12 hrs a night through a Hickman tunneled catheter in my right clavicle since March & gained 20 lbs. I got a J/G tube 2 weeks ago & have started tube feeding slow but sure. I understand all the things you have gone through & really appreciate your honesty. It is tough for people not doing this every day to understand just what it takes to get through one day. Thank you so much for putting your story on “paper” & know that you are in my prayers for continued healing. All my love, Angela

  • Leanna says...

    I really enjoy simply reading through all your blogs. Simply desired to notify you that you have people like me who
    enjoy your work. Certainly a great post.
    Hats off and away to an individual! The info which
    you have provided is very useful.

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