Rectum removal surgery

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JsMom
Regular Member


Date Joined Jul 2006
Total Posts : 57
   Posted 11/10/2007 10:17 AM (GMT -6)   
My son (8yrs) had subtotal colectomy with ileostomy done 7/07, we preserved his rectum for later j-pouch option, but UC in his rectum is constant and unresponsive to treatment, and so the rectum has to come out. We're in process of getting referral for surgical consultation. His original colectomy was performed lapriscopically and the same surgeon will perform this next surgery. Has anyone here had this operation, later, after subtotal colectomy? What is involved in recovery, is there pain. Will he be able to sit normally soon after? Also is there any miserable prep, I can't imagine there would be, but I figure you just never know.

Thanks so much.

I enjoy reading all your posts, you're attitudes are very uplifting, so encouraging and so helpful!


JsMom
Son 8 yrs UC pancolitis, subtotal colectomy with ileostomy 7/07, preserved rectum/sphincter muscles for later j-pouch option. Rectum bleeding, unresponsive to meds. Rectum removal inevitable.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/10/2007 1:07 PM (GMT -6)   
well i had it done at the same time as my other surgery, but really it was more annoying than painful. If you remember what it felt like down there after you had your child, especially if you were cut or if you tore, that feels a thousand times worse! i mean i know he doesnt' know what that feels like but it could help you gauge the pain. ANyway, mainly it was itchy. If he can sit on a soft pillow some that will help. ANd i don't know if he would do this, but it helped with the itching for me to put a pad on and just change it every hour or so, i guess cause there is some moisture and that keeps it away from your skin. but that might be strange for a boy.
ANyway, i am sorry that he has to go through this, and i will keep him in my prayers
oh and ask the dr, they give me some kind of packet of cream to put on my bottom for the itching, btu i cannot remember what it was
 
 
snaej ni tfel eht no cip


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1243
   Posted 11/10/2007 1:11 PM (GMT -6)   
I had my ileostomy surgery when I was 10 years old and my rectum removed a year later due to the same reasons as your son.

It is as big a surgery as the original, there's no getting around that. I was in hospital for the same amount of time as my ileo surgery. I used a doughnut ring to sit on for a while after but these days they're a 'no no' in that, apparently, they can pull the stitches apart (it never did with mine or anyone else I know who used one, but that's the current thinking), so a soft foam cushion is the go these days.

After his removal, he will probably get phantom rectal pains. Just like someone who loses a limb can still feel it 'itch' so his body will have to get used to it's new plumbing. He will feel like he has to go to the loo in the old way even though he can't. The only way I found to relieve it was to go sit on the loo even though I knew nothing would come of it.

Because he's young, his recovery will probably be a lot quicker than adults who have the same surgery. Kids are so much more resiliant.

He won't need prep - and if they try to make him take it, be his advocate and refuse - it can dehydrate ileostomates very quickly. All he will need to do is go on a clear fluid diet for 24 - 36 hours before surgery to clean himself out.

I am soooooooo glad I had my rectum removed - it never caused me anything but trouble anyway. Good riddance to bad rubbish!
I have had an ileostomy for 31 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/10/2007 9:03 PM (GMT -6)   
i tired sitting on a makeshift donut pillow, and actually i thought that hurt worse.
 
 
snaej ni tfel eht no cip


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/10/2007 9:16 PM (GMT -6)   
I have Crohn's Disease, not UC. So, since my rectum was diseased, it was removed when they removed my colon and a good deal of small intestine - all at the same time. YES, I do remember the pain. I've never forgot that. The itching definitely was the worst part by far. At that time, for whatever reason, I was not allowed to put any cream on it for several weeks. I also remember than very vividly! Once I could put cream on it, the discomfort eased a bit. No donut for me to sit on either (and that was back in '84). I was allow a soft pillow only. Mine healed nicely and I have never had any issues whatsoever with that area.

Ditto Shaz's comments regarding prep prior to surgery --- NO PREP necessary. Clear fluids only and plenty of them.

I am getting ready to have outpatient surgery on Friday scheduled for 11 a.m. I don't have to do any prep, and I can have liquids up until 6 hrs prior to surgery. Most prep is nothing to eat or drink after midnight.... but in this case, they told me 6 hrs prior to surgery.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


JsMom
Regular Member


Date Joined Jul 2006
Total Posts : 57
   Posted 11/11/2007 7:57 PM (GMT -6)   
Shaz, Peggy, Summerstorm thank you all for sharing your experiences and advice with me. Thank you for your time, thank you for the detail!! Thank you for being here!!! This forum is a great source of comfort for me and my family.

Good luck with your surgery Peggy, I'll be thinking about you. Let us know how how it turns out!

JsMom

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/11/2007 9:33 PM (GMT -6)   
JsMom,
 
You are very welcome ---  I feel so blessed to have been able to have the surgery done back in '84 and to be able to lead a normal life.  I have been relatively healthy, and been able to accomplish pretty much anything I have wanted to.  It's all a frame of mind too.   
 
Sharing my life experiences to help another and possible educate is the absolute least I can do.  Please remember, everyone heals at their own pace.  I hope all works out well.  Once the "bad" is completely removed from your son's body, and he recovers, you will be surprised at what a different person he will be.  Imagine no discomfort or pain, or possibly no meds to cause side effects or mood swings, etc.  I will keep you all in my thoughts.
 
p.s. My surgery is for a bone spur and arthritis in my shoulder which I have been dealing with for over 6 wks. and not had the use of my right arm.   Not abdominal or Crohn's related!  Just old age related!!!!  
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

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