I am stepping out of my comfort zone, and going to share my personal story publicly. If I can help even one person by showing my vulnerable side, it is worth it. It’s a bit long but I want you all to know how this journey has affected me.
Gastroparesis has radically changed my life.
On the left is a picture of me when I first got sick, topping out at 297 pounds. I had no idea why I was gaining weight, as I was struggling to even eat. I had not yet been diagnosed with Gastroparesis, but was vomiting every day as soon as my feet hit the floor in the morning. This went on for about a year before suddenly I started losing at a rapid rate.
It wasn’t long before I would be struck down with Diverticulitis, something my doctor later said was a direct result of Gastroparesis, but I still hadn’t been diagnosed at this time. This caused my colon to perforate, and emergency surgery to clean my abdomen out and remove my sigmoid colon. When I woke from surgery, my abdomen had been left open fearing they missed some of the infection and I had an ileostomy bag.
Things got really scary fast! I was unable to tolerate anything at all by mouth, not even a sip of water. I was in grave danger and nothing was helping me. The doctors decided they had to place a NG tube to drain my stomach, which is a tube that goes through the nose, down the throat and into the stomach. I had formed an ileus. They were draining bile out continuously for the next 5 weeks. I had to be fed by TPN (intravenously).
I couldn’t look at my abdomen, and definitely could not look at my ileostomy. I was fighting as hard as I could just to survive or have the will to. I reached my breaking point and just couldn’t do another day of any of it. I wanted out! No more tube, no more feeds. I was done! That night I begged God for mercy. Please come and get me or help me. I just couldn’t do it any more. My small bowel would not wake up. The next morning I would be telling my doctor I was discontinuing treatment. But when he arrived, he heard movement in my bowel! It had finally woken up! My tube came out that day, but only because I didn’t need it any more. I got my first liquids in 5 weeks! I kept the TPN for a few days longer as my body readjusted to eating again, but finally I was ready to move to a nursing home for some intense physical therapy.
It was then that I had to get close and personal with my ileostomy, as the nurses there were not trained on changing them and one of my aides thought it was a great idea to rinse my bag out with water, making me instantly sick! I was determined to figure this out on my own and then I taught my nurses how to care for an ileostomy patient.
Physical therapy proved to be quite challenging because I was so fatigued, and weak. I could not make it past about 3 rooms from mine, before I had to quit walking, and had to be brought back to my room in a wheelchair. It was several days later that they discovered my potassium levels were extremely low, causing the fatigue, weakness and rapid heart rates. Finally I began the road to recovery from this nightmare! I was there for 3 weeks and I finally got to go for a home visit. Boy was it nice to see home again, something I wasn’t sure I would ever see again.
I thought wow, what a crazy turn of events, but thank God that’s behind me. Oh but no it wasn’t! I was home for 3 weeks, and my husband came home to find me non-responsive. By the time I got to the hospital, my potassium was at 1.2. 2.5 is the lowest of the safe zone. I was heading back to surgery, they were going to reverse my ileostomy. This period of time is a bit of a blur! After several IVs of potassium, I was finally starting to bounce back.
When I returned home, again I was on home health care, and the days my nurse wasn’t here, I had telehealth, where I had to weigh in and do my vitals every day. Every day I was watching the scale go down.Thankfully I had an amazing home health nurse who recognized the symptoms and knew what was wrong with me. A gastric emptying study confirmed that it was in fact Gastroparesis. Thank you Anna, my earth angel! I often wonder where I’d be if you hadn’t come into my life.
Now I had a diagnosis, now what? I quickly learned that my local doctors were not able to help me after going to several. I finally was referred to Jefferson University Hospital, to their motility clinic. Through more testing, we discovered that not only was my stomach paralyzed, but so was my colon. I would then start the rollercoaster ride of let’s try this, let’s try that. I was given every medication and non-surgical treatment available, to no avail.
I continued to lose weight, was unable to tolerate solid foods and was on liquids and soft foods only for almost 5 months, when I finally started seeing their motility specialist, head of the department. He scheduled me right away for another round of botox, which we had already tried, but this time it would be Botox type B, as type A did not work at all. They inject the botox into the Pyloric Sphincter through an endoscopic procedure to help it relax and allow your stomach to empty. It took about a week and a half, but I was able to start eating small amounts of food! I was so hopeful that this was the answer for me!
As time went on, with each meal brought more pain. I was unable to move my bowels for 3 weeks at a time. That was with the best medications on the market available in the U.S. at the time. In January 2018, they said my intrathecal pain pump had to come out to rule it out as a the culprit. That made no difference at all, so in March 2018, they removed my colon (Colectomy). Once again, my small bowel would not wake up, my botox had worn off and again, I would get a tube down my throat and TPN. This time though, I had the Gastroparesis diagnosis, so I was put back under and got a botox injection. It took 12 days for my bowel to wake up, but I made it home again!
In November 2018, botox stopped working. I was sent for a consult for G-POEM, which is an endoscopic surgery where they cut the Pyloric Sphincter leaving the stomach open so it can empty. It was then they discovered that now my small bowel and my esophagus have slow motility issues. I need revision surgery on my small bowel, where they connected it back up through ileorectal anastomosis through a side connection. The revision surgery will require losing about a foot of my small bowel and getting an end connection, which I’m being told will be a tougher surgery than getting my colon removed. The doctor who would do this procedure thinks the bowel needs to be addressed first, but the motility doctor wants to forge ahead with the G-POEM to see if the stomach is emptying if my bowel will follow through. If not, then I will go in for revision or a permanent ileostomy.
While all of this is going on, I am barely able to tolerate any solid food and pretty much live on Greek yogurt, peanut butter, bananas and liquids. I try to force myself to eat something solid every day and deal with the consequences. I am now down 134 pounds and the picture on the right shows me now, from a size 24 pants and 3X shirt to a size 10 pants and a large shirt.
I watch as my Facebook community passes green candles over and over again. We have averaged a death a week in our community from complications of this disease. It’s so scary when you have zero control over your body. When what works today stops working tomorrow. Knowing one infection is all it could take, and you’ll never recover.
I thank God for having a supportive husband and family, because so many of our community do not. I appreciate those who share about this illness, so that one day we may get a cure. We need the support of family and friends, this disease is isolating. We fear leaving the house because of no access to public bathrooms. We can’t even smell food sometimes, because the smell alone makes us so nauseous and even vomit.
Some of us are tube fed, have stomach pacemakers, colostomy or ileostomy bags and take medications with horrible side effects because we have no other options. We are going to Washington DC to ask our legislators to help us. What a site that will be to have hundreds of chronically ill patients in a sea of green shirts rallying at our capitol. We will be meeting with our legislators asking them to pass a bill which will give us much needed funding for research.
So when you see me share about Gastroparesis, hopefully now you will understand I am fighting for my life and those lives of fellow warriors. So that one day there will be a cure and our children and grandchildren might not have to suffer from this. Please help support our efforts by sharing our posts. This can strike anyone of any age at any time. By spreading awareness, you may just save someone’s life! 💚💚💚
Thank you for taking the time to learn about my life with Gastroparesis!