“Sometimes carrying on, just carrying on, is the superhuman achievement”
Chronic Intestinal Pseudo Obstruction is an ugly disease. That’s all that can be said about it. It’s an ugly, awful disease. It’s a hateful disease. I don’t like using such strong words but sometimes they are what is needed. There are only 200 cases of it diagnosed ever year. In the world. It is known as one of the most severe and disabling motility disorders. It is the reason I struggle with nutrition, symptoms, having an ileostomy, having a GJ tube, having a central line.
Approximately two months ago we made the choice to stop TPN for a trial of how much nutrition I can handle on my own. Shortly after that, I began to experience my ostomy not having any output for 6-12 hours.
I had an ileostomy created in September of 2016. It means that part of my small intestine was brought to my abdominal wall and sits outside of my belly. Being that it is my small intestine, it is supposed to not have periods of no output, being that it is not made to hold waste like a colon. This was alarming, and would come with lots of distention and pain. However I did not think much of it as the issue would sporadically resolve itself.
A month ago my tube had been infected for a month exactly. So we began a vigorous course of IV antibiotics through my Hickman. I started to receive IV Fluconazole every 12 hours, and IV Clindamycin every 8 hours. The hope was to clear up the infection quickly, so I could try feeds into my small intestine (J tube). The goal was to finally get my body some much needed nutrition but bypassing my stomach since Ensure was not going well.
Two weeks ago these periods of no output increased. And so did my symptoms. My nausea, distention, pain, and more. I was still trapped in only tolerating an Ensure along with nibbles of whatever I could force into my mouth. My feeding tube infection continues. Which led to another full week of IV antibiotics. I was beginning to feel very tired and drained constantly… unable to get much energy as eating or drinking left me in incredible pain and distention. While these symptoms continued to increase, I had an examine by GI during my time at Boston. Much to our surprise, the doctor discovered my ileostomy was kinked inside of my abdominal wall.
After we arrived home late on Friday night my mom and I woke up early the next morning to head to Children’s Hospital of Wisconsin for a radiology scan of my ostomy. I am so thankful we went and radiology came in for my scan, because the news we learned from it is essential. The scan was very painful and very invasive. It was challenging because my ostomy has become so narrowed inside that they could not even complete the scan. The team that cared for me was so compassionate and gentle. They made it as easy as it could get.
Yesterday we got a call back from my surgeon at CHW. My ostomy is obstructed and narrowed. Next Wednesday I will be having another surgery. She will have to open me back up and cut some of the muscle. She will do whatever she can to help my ileostomy function again. I don’t think I can say how thankful I am to have her as my surgeon. Dr. Arca is one individual that I trust fully. And trust is a hard thing when you are handing over your body to another person.
Tomorrow I have clinic at CHW. I will be seeing the Central Access Team (CAT) as my Hickman has not drawn back blood for two weeks and is hard to flush in one of the lumens. I will then see Dr. Arca to further assess the situation and consult for the upcoming surgery. My next appointment is with infectious disease and I am hoping that the progress on my infection will suffice for stopping antibiotics soon. Then I will meet with my nutrition and intestinal failure doctor. As I type this, I am home sick from school. I hate missing school with a passion. This week my health has just deteriorated so much. I lack energy, have a mental fog, am exhausted. It’s so hard as I can’t get the nutrients my body needs, so I am dealing with the consequences. Sometimes I wish I could just eat a sandwich to give my body the fuel it deserves. I hope the nutrition team can help us come up with a plan to help my tired body out, without fluid loading it.
It’s times like these that make me treasure good memories even more. It is almost a reality check… putting it into perspective again how much I need to enjoy the good days.
Thank you all for being so patient after the trip to Boston when I went silent on my updates. I have read every single message, and my family and I are so appreciative of the love and prayers you all have given us.
CIPO is a nasty disease that has a mind of its own. But I like to think we are smarter than it. I can’t wait for the day I can look back on this whole journey and realize we beat it. I already can feel us beating it.