Crohn's Disease Forum » Your Story » Panproctocolectomy operation

08-27-2015, 06:49 AM   #1
Join Date: Aug 2015
Location: bangor n wales, United Kingdom
Panproctocolectomy operation

Hello my name's gareth and i'm from Caernarfon in North Wales. I was diagnosed with Crohn's disease in 2001 and have been on all type of different medications for the condition. Recently my condition has worsened and I am awaiting a panproctocolectomy operation which means removing everything and having a permanent ileostomy. I've already had a right hemi colectomy 3 years ago and i'm just interested to hear from people who have had this operation and what the recovery period is like and how it affects your lifestyle diet etc....
08-27-2015, 09:33 PM   #2
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Susan2's Avatar
Join Date: Dec 2011
Location: Geelong, Victoria, Australia

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Hi Gareth and

I had a panproctocolectomy in 2000 after many years with Crohn's disease. I had left it far too long and so had to have a very large area of diseased tissue removed with my rectum and anus. This led to a long, but uneventful, recovery period while healthy tissue grew from the inside to fill the cavity. I did not need antibiotics as I had no infection during this time. This was, I think, due to the care of the district nurses in washing the wound out with saline solution and to the use of alginate (seaweed) dressing to pack the wound.

My life is much, much easier and better since getting the permanent ileostomy, although it took time to experiment with getting the right equipment to suit me, my skin, my body shape, my stoma and so on. You should have an ostomy nurse to give you advice and the ostomy suppliers are very helpful and will send you samples. People on this Forum, also, will be very willing to share their experience with you and help you with any problems.

As to it affects my lifestyle - well, I no longer need to live in fear of not getting to the toilet on time! I travel widely (to Peru earlier this year and recently on a flying/fishing holiday in Australia), I snorkel, bush walk, belong to a community garden and to a CoastCare group that weeds, re-vegetates, etc., in the bush. I sing in a choir, go to the theatre and to lunch with friends... (I am retired, by the way).

This is not to say that life with my stoma is completely problem free. I have the occasional leak, usually in the most inconvenient places (like on the top of the Island of the Sun in the middle of Lake Titikaka, Bolivia, in an ecolodge that had run out of water! ) but I would never have dared to go there before my ileostomy.

I am careful with my food and that is something that you will have to sort out for yourself, in the main, because there seems to be so much difference in people's experience with the foods that they can and cannot tolerate. I keep mine fairly bland and not too fibrous (no Mexican, Malaysian etc.)

I hope all that helps. Please do not hesitate to ask any questions that you might have. Nothing, and I mean nothing, is out of bounds - we have all been here!
Crohn's Disease - symptoms since c1955, diagnosed early 1970s. On Prednisolone until...
Total Proctocolectomy in 2000.
Ileostomy that behaves most of the time
Currently on no medications, but under constant gaze of very caring GP, with annual blood and other tests.
08-28-2015, 03:42 AM   #3
Join Date: Aug 2015
Location: bangor n wales, United Kingdom
Thankyou for replying Susan I really appreciate it. It's nice to talk to people who have experienced the same symptoms and had the same operation. I've been struggling for years and been on pentasa azathioprine steroids infliximab but recently my condition got worse. I'm struggling at the moment with fissures an anal fistula after having 3 abscesses drained and I've now developed a
bowel to bladder fistula which means passing water is an absolute nightmare. A scan proved that there is a lot of inflamed tissue between the bladder wall and lining of the bowel. I have been told that surgery is my only option. I'm positive that it will improve my quality of life eventually and that's it just the first months that will be difficult to begin with. If I can do half the things that you've done since your operation I'll be more than happy 😜

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