My name is Mara and I am from a small state in Germany called Bremen. I was diagnosed with inflammatory bowel disease in 2016 when I was 21. Shortly after my diagnosis, I celebrated my 22nd birthday. I am pursuing my Ph.D. in Marine Microbiology working to learn more about unknown microorganisms found on the seafloor.
One week after handing in my Bachelor’s thesis, I became severely ill with sudden and bloody diarrhea. I could not leave the toilet at all. A few days after having these initial symptoms, I was admitted to the hospital. The verdict was clear: I was diagnosed with ulcerative colitis. I thought this would be over soon after taking some medications; only, it wasn’t. Three weeks after being diagnosed, I was lying in the ICU, fighting for my life. I had toxic megacolon and my doctors advised me to let them take out my colon, otherwise I wouldn’t make it.
But I refused. Immunosuppressants saved my life. Even though my doctors pressured me to have my colon removed, I kept on refusing. I had all sorts of thoughts running through my mind: Aren’t I too young to have surgery? Would I end up with a bag attached to my abdomen? I could not bare the thought.
For 2 years, I took all the medication I could to prevent surgery. After 2 years of fighting, I lost response to all the medications, one by one. At that point, even I had to admit to myself I would not live much longer if I did not let them remove my colon.
UNDERGOING ILEOSTOMY SURGERY
I had some time to prepare for my surgery and I spent it researching to understand what I would be undergoing. Then my surgery took place and the moment I woke up, I felt well. There was no urge to go to the toilet and I felt freedom for the first time in years.
But fate had other plans. One week later, I experienced my first bowel obstruction, leading to my first emergency surgery. Two days later, I went back to the OR, and again two days later. What started with one surgery led to several emergency surgeries and another fight of survival. I woke up having a severe wound infection, my tummy left open to heal. When leaving the hospital after several weeks I however started to feel better and I was looking ahead to a new life!
However, after having a stoma for half a year, I started struggling. All those emergency surgeries I had had caused adhesions. All those adhesions I had had caused obstructions, leading to many more emergency surgeries. Everyday I experienced sudden and intense pain coming from my intestine feeling stuck in those adhesions. On top of that, my stoma retracted into my abdomen more and more. Everyday I suffered from bag leakages, starting with one per day, in the end I had to change my bag up to 3 times a day. Everything we tried to prevent leakages did not work out. What was my lifesaver became the cause of constant stress and anxiety.
NEXT STEPS
For someone having an ostomy due to ulcerative colitis, under normal circumstances, I could have decided to have the j-pouch procedure. But given all the troublesome adhesions that had happened with my ostomy, my doctors advised against it. I was left with only one option: to have my ostomy forever. But how could I manage with all the issues I was facing with my ostomy?
Fortunately, that’s when I was asked to consider the Kock Pouch procedure. A Kock Pouch is a continent ostomy. I still have a little part of my intestine sticking out of my abdomen, but a valve prevents any stool or air to pass. I have an inner reservoir made from my intestine and stool is collected in there until the pouch is full and needs to be emptied. I empty the Pouch and release air by inserting a catheter. When I insert a catheter, the valve opens and due to the pressure, everything flows out of the pouch. When I remove the catheter, the valve directly closes again.
The Kock Pouch is a very unknown option and in Germany, there are only 3 well-known surgeons (I think one of them retired already) who can perform this surgery. And the one surgeon I went to is very famous in Germany. Also, my understanding is that the US and UK do offer this option but only a handful of surgeons are able to perform it.
LIFE WITH A KOCK POUCH
The Kock Pouch has some major advantages: I do not wear an ostomy bag anymore and I only have to empty my pouch about 3 times a day whereas I had to empty the bag up to 10 times a day. There are also some disadvantages: I am quite restricted in the food I can eat. Whatever I eat needs to pass through a very small catheter and well, I cannot release air anymore (unless I insert the catheter) and this can lead to a very bloated belly sometimes.
Since having the KPouch done, I don’t have any issues with blockages anymore but I still do have major adhesions. The surgeon inserted a few nets into my abdomen. They opened my belly on a length of 16 cm, so this transition was a huge surgery for me.
For me, the positive aspects outweigh all the negative ones. And today thanks to the Kock Pouch, I am finally feeling well again. The Kock Pouch was the perfect option for me, and I wouldn’t change a thing. Once again, I have started to love my life. I have started to go out, to enjoy things I felt anxious about before. Only this year, I hiked my first mountain and I started working on my PhD Thesis, all things I could not do before my Kock Pouch. I am really looking forward to the future and to my many adventures which lie ahead.
PARTING WORDS
To everyone out there afraid of upcoming surgery: An ostomy is not a death sentence. An ostomy can make your life better in many ways! Even though mine did not end up working out, I’m beyond thankful for my Kock Pouch! There is nothing I cannot do with it. And if you are facing surgery, trust in the process. You have come this far and you can move mountains if you believe in yourself.
And, as Tina always asks, how do I own my condition and well-being? I own my ulcerative colitis by seeking the best options for my care and living my best life possible with my Kock Pouch!
~~LOVE, LIGHT & PEACE ALWAYS~~
Happy Crohn’s & Colitis Awareness Week, loves! As always, please feel free to leave comments and share the post if you found it helpful. I love hearing from you all! Be well!
