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

Original Post

Emily, I am so sorry to hear what you have been going through with your K pouch.  In dealing with difficult pouch problems, experience of the surgeon is a significant factor to consider.  In no way am I implying that your surgeon is not qualified to deal with your current situation.  There are two BCIR surgeons in the US who have extensive experience with pouch complications: Dr. Don Schiller in Los Angeles, CA and Dr. Ernest Rehnke in St. Petersburg, FL (my surgeon).  As a starter, I suggest that your surgeon contact one of them for their recommendations before you have your next surgery.  Having a temporary ileostomy for several months sounds like a good idea.  Please keep us posted, and best of luck.

Bill

BillV posted:

Emily, I am so sorry to hear what you have been going through with your K pouch.  In dealing with difficult pouch problems, experience of the surgeon is a significant factor to consider.  In no way am I implying that your surgeon is not qualified to deal with your current situation.  There are two BCIR surgeons in the US who have extensive experience with pouch complications: Dr. Don Schiller in Los Angeles, CA and Dr. Ernest Rehnke in St. Petersburg, FL (my surgeon).  As a starter, I suggest that your surgeon contact one of them for their recommendations before you have your next surgery.  Having a temporary ileostomy for several months sounds like a good idea.  Please keep us posted, and best of luck.

Bill

Hi Bill,

Thank you for your kind reply.  I believe my Surgeon was actually trained by your Surgeon! He has actually just returned from the USA after doing further training.  He indicated that he discussed my case with a number of his colleagues and he feels confident that this next surgery will be the last one for a good while.  I really hope he’s right!  And I totally agree that the temporary Ileostomy is the way to go.

 Thank you again and kind regards,

Emily

Emily, you been through something. I'm surprised you still want to try for another redo. At this point I might say give me the permanent ileo. They aren't that bad. When I had one I was pretty comfortable. Sometimes I even forgot I had a bag. Either way I hope it works out and this time your surgeon has the education he needs to make it work. Keep us updated and all the best to you. 

You are so brave. I would do the same thing. I’ve had a K pouch for almost 37 years. Since I was 21. For pretty much my entire adult life. I’ve spent the last two years  dealing with incontinence and two revisions. Soon, I will have a third revision. It is my quest. I’m going to try everything I can to keep it and get it back in working order, until I’ve exhausted all options. It is more conducive to my active lifestyle. Best of luck next week.  I’m sending healing thoughts your way for a successful surgery. 

i agree, exhaust all of your options.  then you won't second guess yourself in the future.  it sounds as if you have developed a good relationship with your doctor, which is critical in communicating and working on solutions.  that said, i'm so sorry you have to go through any of this.  sending white light.  janet

Your courage and patience are unbelievable. I really hope it works out this time. I guess the only question I would ask are your risks for short bowel syndrome with all of the surgeries you have had. That information might help you make the decision to revert to a permanent ileostomy if that time comes. Until then, a temporary one sounds like a good idea to give everything a rest. 

Good luck!

I am so sorry Emile, you are living in a suspended animation nightmare. 

This should not be happening...it really should not unless there is some underlying pathology that is preventing you from healing or making your tissue so fragile that nothing is holding and the sutures are pulling out.

Please Google Ehler's Danlos syndrome. 

I have it and had pretty much the same series of complications post-op as you do...every surgery fell apart. Valves did not hold, my pouch fell off of the wall or twisted, I herniated around the stoma repeatedly and my valve would pop out, I got twists, blockages, occlusions and any other number of complications.

We discovered the Ehlers-Danlos when I way well into my 40's and had already had nearly 40 surgeries. Nothing held together like I did not have enough glue.

My arteries and veins popped. My skin could not stand glue, tape or flanges...outside bags were out of the question. Dr Cohen didn't understand why everything kept falling apart. 

Then I got the diagnosis (double-jointed joints, fragile skin, ligaments, intestinal tissue...) and he was able to use a different protocol to sew me up and staple me...it worked.

We use permanent instead of re-absorbable sutures. Doubles lines, deeper bites (they stitch deeper into the tissue so that the sutures do not pull out), use sutures, stapels and steri-strips on my outside closure and keep them in up to 3 months (staples out after 4 weeks, sutures 6-8 weeks and steri-strips at 12 weeks, they sometimes put in a drain just in case)...lots of precautions but they work, I get better results and they are effective.

They also double-attach the pouch to the abdominal wall using an intermediary. First they had used a Martex ring that they sutured to the abdominal wall then sutured the pouch to it...now they use mesh.

I do not know if this will help at all but I am hoping that maybe something might.

Good luck girl and may this surgery be successful.

Sharon

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