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Crohn's Disease Forum » Surgery » Panproctocolectomy / Trans-anal inter-sphincteric Proctectomy


05-11-2017, 07:46 AM   #1
Sarahlou1984
 
Join Date: May 2017
Location: Birmingham, United Kingdom
Panproctocolectomy / Trans-anal inter-sphincteric Proctectomy

Hi All,

I have severe crohn's disease and have been diagnosed since I was 16. I am now 32. I have had 3 x bowel resections and currently have an ileostomy. After developing perianal crohn's and failing TNF treatments such as Humira, Infliximab, Entivyo and most recently ustekinumab, I am scheduled to undergo surgery on the 22/5/17 to remove my rectum and colon. My disease is very complicated and the surgeon is not sure exactly what the surgery will entail and my MRI images have come back inconclusive and they are not sure how advanced the disease is and how scarred the tissue is. My surgeon is looking at doing the surgery by key hole but has warned that they may change to open surgery dependent on what they find. I was just wondering if anyone has had any similar experiences and what recovery time I might be looking at. I know it will be dependent on whether the surgery is open or keyhole but I am looking for anyone who may have had a similar experience and who can give me advise / suggestions. Thank you. I have been on prednisone for the past 2 -3 years and have managed to wean to 5mg. I am now suffering very badly with joint pain, dehydration and fatigue.
05-11-2017, 09:49 AM   #2
scottsma
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Join Date: Jan 2012
Location: Tynemouth, United Kingdom

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Hello and welcome to the forum Sarahlou,but really sorry you have to be here at all.You poor soul.I'm lucky that I have avoided surgery so far,but I know there are many who have been unfortunate.There will be somebody along real soon to give you support and advice.I will say though,that those who have had surgery seem to be very positive about the results,so fingers x'd for you.Best to you.
05-11-2017, 08:13 PM   #3
gmm
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hi, i had a proctectomy just over 2 years ago, i wasnt too worried about the front wound so much as the back end one,, all i can say is hope you have good luck with it and avoid an infection in the back end wound, mine was perfect up untill about three weeks after the op i was up and about with not as much pain as i expected, then the infection set in, sepsis i think they called it, and a large pelvic collection,so was really out of it for 3 month,just dont expect to be sitting normally for a while, lol, and just take it easy with your feet up as much as you can to let the wound hopefully heal totally, fingers crossed for you
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have taken, pentasa, prednisolone, entecort, methotrexate, azathioprine, mercaptopurine,thalidomide,infliximab,humira,sulpa salazine
right hemicolectomy, gallbladder removed,and a few perianal abscesses operated on, currently at stalemate with the surgeons over options,2013 took a gamble on surgery and lost, ended up with an ileostomy in september
05-12-2017, 02:43 AM   #4
Sarahlou1984
 
Join Date: May 2017
Location: Birmingham, United Kingdom
Thank you gmm and scottsma. Really appreciate your advice and kind words. xxx
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Crohn's Disease Forum » Surgery » Panproctocolectomy / Trans-anal inter-sphincteric Proctectomy
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