The past few weeks have literally been hell on wheels, with silver linings and blessings alongside.
For those new to my blog, I have been sick and unable to eat "real" meals since Feb 2013. In April 2013 I was diagnosed with Gastroparesis and received my GJ feeding tube (which feeds directly in my small intestines) in May 2013. For a brief period of time, my health improved as long as I didn't eat and depended on my feeding tube for nutrition. However during the summer of 2014, I began having difficulty with my formula feeds as well. In an attempt to decrease my pain, my gallbladder was taken out in Dec 2014. I have been unable to return to work yet, though am hoping that this changes. Due to pain, nausea, lightheadedness, and a daily intake of less than 500 calories total, I have been unable to drive since October 2014.
With constant pain, nausea, and lack of nutrition we decided to have the Sitz Marker Study. During this study, I had to forfeit all laxatives for a week. For five days I consumed a pill which had 24 markers within them. On day 6, I had an xray to see where the sitz markers were located. Ideally, they are suppose to be completely out of the digestive system. However, ALL of my markers remained in the beginning of my large intestine (colon). What does this mean? I have colonic inertia - my colon does NOT work. How is this treated? I will either be trying Mestinon to improve motility (which has not shown to be very effective in studies) or I will have to have a total colectomy with ileostomy pouch. In other words, I may have to have my colon removed and have my small
intestines empty waste into a bag located on my abdomen. Sometimes people with colonic inertia are able to have a resection, in which the colon is removed and the small intestines is connected to the rectum. However, this is not an option for me due to my pelvic floor dysnergia which has not been improved with biofeedback and/or physical therapy.
As a result of my Sitz Marker study, I became impacted and had great difficulty resuming my bowel regimen. When trying to return to "normalcy" I returned to using my Linzess, Lactulose, and enemas as soon as I returned home from my xray on Sept 9 and on Sept 10 with no success. After hours of pain, dizzy spells, heaving, nausea, and too weak to get off the floor, I was taken to the ER. The drive there was the longest drive I have ever taken. Every bump and turn just increased my pain and nausea. I literally could not hold my eyes open and had to keep telling myself to keep breathing slowly. In through nose, out through mouth. When we arrived at the ER, I was in level 10 pain and had a blood pressure of 85/50. I was told that I would be in the next available room. Then all hell broke loose. The 5 minutes that I was in the waiting room seemed like hours. All of the sudden my arms, legs, and chin started tingling feeling like they were asleep. Then my body began cramping really bad. I was unable to move my fingers, toes, arms, or legs no matter how hard I tried. For the next few hours I had xrays, CT, EKGS, blood work, ultrasound of heart, echocardiograms, etc. I felt so helpless, as they had to literally move everywhere as I was in too much pain and too weak to move my body. They finally determined that my electrolytes/labs and impaction (from being unable to use laxatives earlier in the week) were creating abnormal EKGs, pain, weakness/dizziness, nausea, and other symptoms. I was admitted for a few days as we began an intensive aggressive bowel regimen, which increased pain and discomfort tremendously, and kept an eye on my heart and blood pressure. Home for a week, but still in a lot of pain and not doing well with tube feeds at all. Today is the first day that I have been able to sit. I am still taking ALL of my laxatives (Miralax x 3, Lactulose x 2, Senna, Linzess 290mg, Colace x 2, and Fleet enemas to try and keep things moving until my GI appointment in October.
Personally, I just want to go ahead and have the surgery so I can regain some quality of life.
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
Like my content? Want to thank me with a "cup of coffee", or in my case, pedialyte? You are welcome to to leave a small gift of appreciation at the following link ko-fi.com/gastroparesiscrusader
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