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Crohn's Disease Forum » Your Story » Questions Regarding Total Proctocolectomy Surgery


08-19-2012, 03:49 PM   #1
micole93
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Join Date: Aug 2012
Location: St.John's, Newfoundland and Labrador
Questions Regarding Total Proctocolectomy Surgery

Hi, My name is Michael, I am 22 years old and I have been battling Crohn's Disease for about five years now. I've been hospitalized many many times for abdominal pain, severe constipation, bleeding, etc.. Back in February of this year I was hospitalized for two weeks and they decided to start me on a new drug called Remicade...It has been working for thhe pain and helping me eat foods I would not normally eat but It has not improved my condition of my colon or my lower bowels whatsoever. I have very many bowel movements everyday and its becoming to control my life. I don't go out very often, Im fortunate to have a very low key and stressfree job and access to what I need but my social life is suffering. I had an apt with a surgeon a few days ago and he advised me the best thing to do is to have the Total Proctocolectomy with the Ostomy Bag...He is giving me a bit of time to decide what I want to do. I'm having a bit of trouble deciding because I know this will change my life very much and I know once I get this done there is no take backs...Im looking for as much information about the procedure as possible.
I have so many questions that I dont seem to be getting the answers, like:
Recovery time?
The pros and cons?
If people have had regrets having the surgery?
Personal Life(Intimacy) issues?
Sports/Exercising?

If anyone has any answers or personal experience with it please any info would be much appreciated.

Thank You,
Michael
08-20-2012, 06:11 AM   #2
Angrybird
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Hello Michael and welcome to the forum, I am sorry to hear that you are having to have surgery

I have not had this particular op myself so could not not advise but we do have a stoma sub forum and the folks here can definetly help with your questions: http://www.crohnsforum.com/forumdisplay.php?f=46.

Out of interest what other meds have you been given in the past before the remi? Qhen are you next due to see the surgeon to give your decision?

One things I will say is that I am glad you have decided to join, this is a tough disease to live with so do know we are here to help in anyway we can.

AB
xx
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
08-20-2012, 11:47 AM   #3
2thFairy
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Hi Michael!

Definitely check out the Stoma subforum....lots of good advise and information, as well as positive experience and negative experiences.

I had total colectomy surgery (for ulcerative colitis) in January of this year and have absolutely no regrets about it. Mine is a temporary ileostomy, however, as I had the option of having a J-pouch formed at the time of surgery. I had the okay for reversal several months ago, but am loving life with a stoma so much that I have put off reversal surgery for now.

The surgery itself is a doozy and is extremely hard on your body to adjust to. For me, pain level was minimal, but not all people are this lucky. There is an adjustment period after surgery where your body has to work out fluid levels and this is the hard part. Dehydration can happen quickly, but is manageable.

I was in the hospital for 12 days and then at home for another 2 weeks before returning back to work. Some people are able to go back to work sooner and others not until 6 weeks or more. Once you get out of the recovery phase and are pain free, life begins!!!

I'll stop here since this could turn into a very long response, but please check out the stoma subforum and feel free to post your questions there. You will get exposure by others who can help with your particular questions and have tons of personal information, as well as hilarious anecdotes!
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Ulcerative colitis

Total colectomy with ileostomy featuring Sideshow Bob since January 2012

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
08-20-2012, 04:42 PM   #4
micole93
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Join Date: Aug 2012
Location: St.John's, Newfoundland and Labrador
Thank you AngryBird as well as 2thFairy for your response and help. I am becoming more acceptable towards the surgery because of everyones discussions and it does make me feel better knowing there are others out there saying it does increase your quality of life. Makes for a brighter future for me.

Take Care
Michael
08-21-2012, 05:42 PM   #5
CheerBear12
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This op has changed my life however it has been a rollercoaster ride for me took me 3 months before I was out of pain was absolute agony and took me 3 moths before I could do anything for myself. However everyone is different but I was really sick going in the op was to save my life. Take care and keep us posted x
08-21-2012, 05:47 PM   #6
CheerBear12
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I also want to add mine was too remove my large bowel only so I've still got my rectum and anus for now but need to the other one to remove them at some point x
01-13-2014, 09:11 AM   #7
kay90
 
Join Date: Jan 2014
You have most probably had your surgery now but fort i'd share my story with you.
I have ulcerative colitis since 99 I was only 9 back then, I was given a colectomy bag, at that age it was hard for me to get my head round it, I was always in & out of hospital being ill having surgery. I had a pouch made on the inside at age 11, then I got pouchitis, so I had more meds given (cant remember as to what they was), when I was 15 I got my colectomy bag reserved it was the worse time in my life, I couldn't leave the house due to having accidents almost all the time, I always had to wear pads & even results into wearing inconstance pants I hated it, after getting ill again after an abscess formed & ended up with me having numerous fistulas tracks, at 18 I had to choose if I wanted my bag back or a second opinion, I opted for the bag straight away as I knew my life would be so much better & I would be able to do a lot which I know can thank god, but my illness is still on going, I've had infliximab & Humira to help with fistulas tracks which helped but then stopped I went from having 4 to 1 but this last 1 is not for going anywhere, I am now waiting to see my surgeon about a proctectomy, if I was you i'd ask for an ileostomy bag before you have this surgery as u can see there are other things that can be done first, I never had a problem with intimacy issues which is lucky, after my ops I was only ever in hospital for 2-3weeks but everyone is different, I will be 24 this year so not had the best start in life x
02-23-2014, 04:19 PM   #8
CheerBear12
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I had my rectum and Anus removed 9 months ago today. I'm still in absolute agony parts of it hasn't healed. He squeezed it and prodded at it and puss came out. He said it's not normal not after this amount of time. It's affecting my life can't sit for longer than 10mins then constantly fidget, can't lay, can't sleep, can't stand. I've been told I'll need another op to sort it out but will need an MRI scan before it. They will operate 2 weeks after scan. Currently playing waiting game for scan. I don't want this but can't live like this forever. I'm sick of it
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