Kristen's Chronicles | Surgery #4: J-Pouch Removal
- Kristen
- Oct 10, 2017
- 4 min read
They say that strength grows in the moments when we think we cannot go on but keep going anyways.
I found truth in this quote over the last week and a half recovering from my 4th surgery at Johns Hopkins Hospital.
After finding out that my j-pouch was severely inflamed by what could be some of the Ulcerative Colitis that did not get removed last August during my total colectomy and that the inflammation was spreading to my small intestine, I made the decision with my surgeon to have my j-pouch removed. The inflamed j-pouch was wrecking havoc on my body quickly as my diet had dwindled to so little that agreed with my j-pouch and my symptoms had become overwhelming. Weeks of little sleep, 30+ restroom trips a day, bleeding, pain, cramping, and more had left me at only 80 pounds and extremely malnourished with extremely low blood pressure readings that dropped to 75/43 at one point. Nevertheless, the decision to remove my j-pouch was one that was made with my current and future health in mind.
So, on September 29th at 7:30 AM, I entered the operating room for the complete removal of my j-pouch and creation of a permanent ileostomy.
Hours later, I woke up in recovery with an vertical incision spanning the entire length of my torso, 22 staples, a drain, and a permanent ileostomy. My surgery revealed just how severe the inflammation of my j-pouch was, as well as a thick band of scar tissue within my small intestine that had been causing the blockages with my j-pouch.
I was gradually upgraded to a low residue diet within a couple of days after my surgery and all was well- at least we thought. On Monday, I started experiencing very severe pain. Although I expected the surgery to be painful, this pain was on a new caliber. Several hours later, I started throwing up. Something definitely was not right.
I had developed an ileus, where your intestines do not wake up after surgery.
My severe pain, nausea, and vomiting continued into Tuesday, prompting the doctors to arrive at my door with an NG tube. I had experienced an NG tube in the Spring when I was having obstructions, so the memory of the experience still burned vividly in my mind. I very reluctantly agreed to the NG tube in hopes that it would relieve my pain, but I could feel the fear welling up inside of me as the nurse prepared the tube. A pediatric-sized tube was used due to my small features and the process began. Unfortunately, even with the tube, I continued to throw up, causing it to be removed. With the removal came a firm warning from the doctors that if I continued to throw up, a larger tube would need to be inserted.
Determined to work through my nausea, vomiting, and pain to recover as quickly as possible, I set off on a walk later that day. My walk was cut short when I found myself running back to my room to throw up again. Several minutes later, the doctors arrived back at my door with another NG tube- a much larger one this time. After lots of tears and more vomiting, my surgeon arrived and ordered the NG tube to be removed to let my body handle the situation on my own.
I experienced a level of exhaustion that night that I have never felt in my life. While I had been completely physically and emotionally exhausted, it was in that moment of pure exhaustion and the choice to get up the next morning and try to walk the hallways again that I found truth in the quote I mentioned at the start. Strength truly did grow from my decision to keep fighting despite being physically and emotionally exhausted.
The following days brought continued improvement as my ileus began to lift, waking up my intestines again. I was given a blood transfusion during this time after my hemoglobin dropped significantly low. By the weekend, I was walking laps around the hallways , slowly (very slowly) reintroducing a low residue diet, and completely off all pain medicine (including Tylenol).
I did it. We did it. My body and I had fought yet another battle and won. Now, it was time to really begin recovering.
I was discharged to go home on Monday, October 9th, after 10 days in the hospital.
My 10 days in the hospital were nothing short of challenging and I was so excited to return home. However, although my time in the hospital is up, my true recovery is just beginning. I have now started on the long, hard road to full recovery. I know that this road is not going to be easy. There will be successes. There will be failures. There will be moments when it feels like the I am not making any progress. But there will always be improvement. Every single day brings more strength, more healing, and a step closer to full recovery.
Walking is already part of my daily regimen and once given the all-clear from my surgeon, I will begin physical therapy again to help combat months of malnutrition and muscle loss. I am also receiving fluids daily through my Hickman line until my surgeon is confident that I can remain hydrated on my own. I never expected to be back in a similar situation to the one I was in last August after my total colectomy, but my illness has continued to prove to me that I am so much stronger than I ever imagined I could be. When I begin to feel frustrated or defeated by my current situation, I remind myself just how far I have come. How much I have overcome. Have much I have grown. How much I have learned about myself.
It has been one grand journey so far- and a new adventure is just beginning.
Thank you so much to everyone who has reached out to me and my family during this time. It is not easy, but to have such an amazing support system behind us makes it so much easier.
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