On May 16th, I am hoping for a successful take down of my ileostomy.
Patients that are medically complex with chronic rare diseases are familiar with facing the unknown. Every treatment, surgery, and therapy is decided based on knowledgeable guesses. There are no outlines or recommended plans. There is no documentation of patients like them, explaining what helped others the most.
As one of these patients, my medical team, family, and I are constantly weighing what is the best option when issues arise. Since eating, we’ve learned so much more about my gut. It’s been full of profound knowledge.
My ileostomy saved my life. I reached the point of colon dilation that everyday I could barely move from the pain. It was so full and fragile. It’s one of my saving graces that I got my ileostomy when I did. By diverting my small intestine to the surface of my abdomen, and bypassing my colon, it gave me more safety.
Now, my ileostomy has become one of my biggest sources of trouble. The skin around my ostomy is scarred and prone to sores and ulcers. It breaks down and tears every time I change my ostomy appliance. For my ostomy, that appliance must be changed every 4 days. If it lasts that long.
When I eat, my food and water only have my stomach and small intestine to move through. That makes digesting my food much more challenging. Anything very fibrous like raw fruits, raw vegetables, nuts, seeds, countless other things, and anything that is not “beige” can cause partial obstructions if I have more than a few bites. That means I am unable to have much output and become distended, nauseous, and in horrible pain. I am usually up for most of the night then. This can happen one to two times a week. More than a few bites of fruits (besides a banana) can cause this issue.
The colon absorbs a majority of your water. With my autonomic dysfunction I require at least 4 liters of water a day. This raises my blood volume to try and prevent complications and autonomic imbalances. My ileostomy makes this so challenging. The days I am not dealing with partial blockages, I am dealing with dumping. This term means my ileostomy constantly secretes whatever I try to drink. I can empty liters and liters in a day. It leaves me so dizzy. It also can impact my absorption of my pills and medications.
This dumping has left me reliant on IV fluids. I require a minimum of 1 to 2 liters of IV fluids everyday. We have tried many times to eliminate the need for fluids. On these days I have literally passed out, had migraines, or had incredible issues with my autonomic dysfunction and orthostatic intolerance.
With the high output it also can lead to leaks that are embarrassing and uncomfortable. Discussing all of these things can tend to feel uncomfortable. But I know not to be embarrassed. I refuse to be ashamed of the thing that has saved my life, and the lives of so many others. We must embrace each other and our differences.
This combination of issues has left my doctors figuring out what is best. This May will be the one year mark for my IVIg infusions. After considering the immense difficulties of my ostomy, and how it’s been interfering with things, my surgeon and GI doctor both have recommended surgery. This May 16th, after finishing school and my AP exams early, I will head back into the OR to try and take down my ileostomy, and hook my small intestine back up to my colon.
I am hopeful as I am desperate to find something to help. These issues have been challenging and stressful. Yet, I am slightly terrified. And I’ve grown to accept that feeling both of these emotions is okay. The chances of this surgery being successful, and me being able to live without an ileostomy, are unknown. It’s foreign territory how it will work. My colon appears as a grey, friable, and inflamed organ in my body. This is due to it being so sick before I got my ostomy, and with it not being used for years.
Due to having to manipulate my bowel so much, I most likely may get an ileus. An ileus is when the gut becomes paralyzed and dilated. This causes worries and concerns as an ileus will make it hard to see if my colon is moving again. If my colon does not wake up and allow me to move my bowels, I will become distended and very sick again. That means the only choice would be to take me straight back to the operating room and perform a new ostomy. If the surgery is a success, I can bet you we will cry tears of joy.
However, either outcome will bring gratitude. If I need another ostomy I would get a new site, with skin that is not as damaged. It would be in a better location. A location that is not like my current site- where every single waist band and underwear line hit.
I find my mind racing and stressed over this new challenge. Worried about recovery, the success, and how things will work out. Yet I also feel confidence in my doctors, my body, and that everything will turn out okay. I will be able to go my “home floor” at the hospital, West 11, with staff that are the most incredible humans ever.
Thank you all for being so supportive of me as I have chosen to keep this private to let my family, friends, and myself get mentally prepared. But I am now ready. I am ready to build up my good vibes for this surgery. I am a firm believer the mind and body connection is so strong. I know my mind will help guide me through this surgery, as my surgeon gives it her all. I am ready, because I want to continue to give my body its best chance of thriving.
Here is to enjoying every day until surgery, and going in with my inner warrior on full display.
Thank you all for always supporting me and caring for my family and I. I am so grateful. Always so grateful.
All my best and love, always,