I have Gastroparesis, Neuropathic Intestinal Dysmotility, GERD, Rumination Syndrome, Pelvic Floor Dysfunction, Malabsorption, iron deficiency anemia and recurrent hypokalemia. I have a j-tube named Sparky. I've been tube feed dependent since June of 2010 and have needed TPN on and off since May 2011.
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I have always had some problems with my stomach. When I was 12 I was diagnosed with Gastroesophageal Reflux Disease. I was able to control my symptoms with diet and medication until around the end of September/ beginning of October 2009. This is when the symptoms of Gastroparesis started. At first I just lost my appetite and seemed to get full easily. Trips to the cafeteria at school would consist of a small bowel of applesauce or peaches. Maybe a turkey wrap if I felt alright that day. Anytime I would eat I would get nauseas, have heartburn, burp ALOT and some regurgitation. By November 2009 I was only eating crackers and applesauce. I had already lost around 15 pounds. When I visited my GI he put me on a liquid diet of Ensure. I had test after test to see what could possibly be causing my symptoms. My weight continued to drop and by January I was down 20 pounds from where I was in August. After eating a radioactive egg I found out I have Gastroparesis and started out on a diet to try to control the symptoms. Needless to say the diet didn't work. One trip to the GI at the beginning of the year ended with them telling me that if I lost any more weight before I my next appointment with them in a month that I would be put on a feeding tube. I was able to maintain my weight with much torture on my part but was able to avoid the feeding tube at that time. During May my symptoms got worse and worse. I couldn't even drink water without throwing it up in my mouth again and again. Not to mention the nausea that just wouldn't go away. When I went to my GI I was down over 40 pounds from what I weighed in August.Because of me not being able to tolerate even the most basic liquid I was given the choice between Reglan or a feeding tube. I had heard too many horror stories about Reglan so the feeding tube seemed to be the best decision. I spent 6 days in the hospital having some more tests done before I was sent home with Paco and Roo. One of the tests I had done while in the hospital was the Gastric Emptying Scan (radioactive egg) again. In just 5 months my emptying percentage went from 43% to just 25%. After a trip to KU Med it is believed that I have Rumination Syndrome as well. I am now trying to retrain my stomach to stop reverse peristalsis (contractions) and move food in the right direction. As of October 8th, I seem to have the Rumination Syndrome under control. I had another gastric emptying study done. This time a 4 hour study instead of the 2 hour ones I had before. I had to travel up to KU Med Center to have the test done. It showed delayed emptying, again confirming the diagnosis of Gastroparesis. The doctor wanted me to try Reglan but it didn't work and started to give me side effects so I was put on Erythromycin next. After almost a month on the Erythromycin and nothing happening I was taken off of it and am starting Domperidone now. I tried using a Scopolamine patch but had to stop it because it was giving me blurry vision. My doctor said we are running out of options too and if this new nausea med didn't work we would have to discuss the GES (Gastric Electrical Stimulator). That isn't guarenteed to work either. So basically right now I'm just pushing through and trying to live the most normal life as possible. The Domperidone ended up not working and causing side effects so I stopped that. We started looking more at the problems I've been having with my bowels and my chronic constipation. I had a test called an Anorectal Manometry that measured how well the muscles of my rectum work. Turns out that my muscles don't know how to relax because of a thing called Pelvic Floor Dysfunction. There is therapy to retrain the muscles of my pelvic floor but I have to go to the Mayo Clinic for it because they are the only place that does it.At the end of March, 2011 I had another tube placed. This tube is a PEG-tube that goes into my stomach that I use for venting/draining. It helps with the nausea and regurgitation quite a bit.I just recently started having problems with my potassium and now suffer from recurrent hypokalemia. To combat this I take potassium supplements.May 3rd, 2011 I was diagnosed with malabsorbtion.A few weeks after being diagnosed with the malabsorption I had surgery for a portacath so I could start on TPN. I was on TPN from May 2011 to February 2012 when I had my 2nd line infection that caused sepsis and a 108 degree fever with a seizure. I went to Mayo in Sept 2011 and was diagnosed with Neuropathic Intestinal Dysmotility. I am now seeing the Intestinal Rehab team at the University of Nebraska and am back on TPN because of the weight loss and diarrhea from the tube feeds. We are going to work on figuring out how to use my gut and get off TPN.
Long overdue update
Jul 3, 2013 11:59amHey guys! Sorry it's been so long since I've updated. A ton has gone on since my last update. I was in and out of the hospital most of April and May because of dehydration and low potassium issues. After my surgery for the GJ tube in March I had a lot of trouble with the J portion of the tube flipping back up into my stomach so the tube was basically useless. There was so much crap that went on and I completely lost trust in my surgeon through it all. I ended up without nutrition for almost a month because of it. I´m now back down to 87-90 pounds because of the lack of nutrition.
Once we finally got things sorted out with my feeding tube my body decided to throw another wrinkle in with chronic diarrhea that led to a 17 day hospital stay. I now have to get 2 liters of IV fluids with 80 mEq of potassium total every Monday, Wednesday, and Friday to keep the dehydration in control so I'm not passing out. I'm stuck at the infusion center for 4 hours while I get the infusions. And with my history of central line infections I'm not a candidate for a central line so I have to have a peripheral IV started each time. We haven't been able to get the diarrhea to slow down or figure out what's causing it so we just do what we can to minimize the complications.
I've also been dealing with this new abdominal pain in my right upper quadrant that we haven't been able to figure out either but I have noticed it kind of corresponds with the severity of my diarrhea. The doctors say that I'm just gonna have to deal with the pain. It always sucks to hear that there is nothing they can do to help but it's something that I seem to hear more and more these days.
Between my time at the infusion center and the doctor I haven't really been doing anything else. I'm leaving for the lake today and will be back home on Friday for more IV fluids. I'm looking forward to spending time at the lake and hope my body cooperates so I can enjoy it. Happy 4th of July!!!
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