My new K Pouch Disaster!

I had surgery to get a K Pouch in mid February this year.  I should mention here that I am in Australia where only 2 Surgeon’s perform this surgery and they work closely together in Melbourne Victoria (I live in a small country town called Chinchilla in Queensland).  So having traveled interstate for the surgery and being the 4th person in Australia to have this surgery, I was very anxious.

 I had continual complications after surgery, spent weeks in ICU and had several surgeries trying to rectify the various issues.  Finally things calmed down and after another month in hospital, I was discharged and went to stay in a local hotel for a few weeks just to be safe.

Turns out this was wise as my valve failed and I had to go back into hospital less than a week after being discharged.

Once again during my second stay in hospital, I had multiple complications and had to have multiple surgeries to rectify various issues; including a full revision of my pouch, tube and valve in the end.  

Once again after about 6 weeks I was discharged and went back to the hotel.  After 2 weeks I met with my surgeon and he ran various tests to ensure everything was on track and he gave me the all clear to fly back to Brisbane Queensland, which I did.

When I got back to Brisbane I stayed with family there because I wanted to be close to decent health care (Chinchilla has little to no decent health care).  Once again this decision proved beneficial as a few weeks later my valve failed again.  I went to what we thought was the best hospital in Brisbane for colerectal surgery and unfortunately they didn’t understand the gravity of the situation as they had never even heard of a K Pouch and after 10 hours waiting I called my surgeon in Melbourne who spoke with a nurse about the dangers of distention.  Both my husband and my surgeon spent the next 8 hours putting pressure on them; in the end my husband made a complaint using “Ryans Rule” (google it it’s really amazing and useful).  After that I was taken straight into surgery and with my surgeon from Melbourne on the phone instructing them they managed to intubate me and secure the catheter in place, stoma bag over the top and I was temporarily out of the danger zone.

Unfortunately a week later that catheter made its way out of my K Pouch again and I couldn’t re-intubate it.  Without hesitation I called my surgeon and he told me to catch the next flight to Melbourne, which I did 3 hours later at 2am in the morning!

So I arrived in Melbourne and went straight into hospital, they were anticipating my arrival.  They took me straight into surgery and intubated my Pouch but unfortunately my surgeon was out of town and the surgeon who performed the procedure didn’t do a good job and I had feacal matter coming out around my catheter not through it and within a couple of days it had blocked entirely. 

Luckily in the meantime my surgeon had returned, but by this stage I was throwing up continuously, I had a nasal gastric tube inserted, I was nil by mouth and badly distended and in chronic pain.

My surgeon operated on me last night and has sewn a rigid catheter in place (over which I have a stoma bag) and had a good look around inside to assess what needs to be done next.

Basically I’m in for another total revision, my Pouch is sagging, my tube is twisted and my valve is completely ruined.

This surgery will be done sometime within the next week and he intends to give me a temporary Ileostomy in order for my K Pouch to have time (approximately 3 months) to heal.

I have agreed to undergo this surgery, however if it doesn’t work for any reason I am going to revert back to a permanent Ileostomy.

What are your thoughts? What would you do if you were me?  Are there questions I should be asking? How can I help ensure this revision doesn’t fail?  Do you have any suggestions for me, guidance, personal experience etc?

Thank you very much in advance!

Emily

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