My neice is having her colon removed. Anyone with experience in their family to tell me what life is like afterwards please?

[clumsymum]

The title says it all. Surgery is happening today to my 18 y.o. neice.

Because of a genetic problem which make it VERY likely that she will develop colonic cancer, my neice's colon is being surgically removed. They are going to connect the ileum directly to the rectum. Apparently she will be in hospital for about a week, then at home to recover for a while before she goes back to college.

But I believe it will leave her with probs regarding bowel control etc.

Can anyone fill me in please?

Will she need to have a stoma bag clumsymum?

No Maureen, apparently if everything goes to plan in theatre today they would immediately connect the ileum and rectum, with no need for a bag.

Well that's one thing she need not worry about then. Poor thing. I wish I could help, but tbh I looked in on this thread as my dh had part of his colon removed last year, but not all of it. I just thought that you might need web addresses or help numbers for stoma care. Hope someone comes along with a bit of advice for you. xx

FIL had a large piece of his gut removed and the ends reconnected but I'm not 100% sure which bit or how come.
He has to take bile salt replacement drugs with his meals to help digest food properly as his body has less time to process it - I suspect your niece may have to do something similar.

Waste that's been through the ileum but not the colon still has a lot of water in it so she'll probably find her poo is a lot runnier, but if the sphincters are in good order I'd hope she wouldn't have a problem with controlling it.

It can also smell much worse, as it's not been completely digested, so she might end up feeling awkward about pooing in public loos, other people's houses etc.

Cheers.

Obviously my sis has all the details, but whenever we have spoken recently neice has been around, so I didn't want to stir too much of it up (neice emotionally very immature, which means we have been treading VERY carefully in the lead-up to this).

I thought I might ask her to stay a few days during her recovery period (sister can't get much time off work, and is having to take all this week off as the hospital is 100 miles away from home).
Just thought I might find out a bit before I offer.

bump in case there is a lunchtimer with experience

Hi Clumsymum sorry to hear this.Your poor niece I hope all goes well. I had my colon removed Sept 2000 due to Ulcerative Colitis. I had a stoma for 8 approxiamtely to allow 'j' pouch they formed to heal. As MrsBadger advised poo will be much runnier, but I had no control problems unlike before. Apparently this depends on the sphincters as MrsBadger advised. I have no problem with it smelling worse than before. Like everybody else it depends on what you eat. Certain foods can irritate & certain foods can increase bowel movements, also certain food can increase wind. I was advised to eat rice, pototoes, pasta to slow bowel movements down. Unfortunately she may find that her insides become very talkative which can be very embarressing all my close friends & family know about this now.
Everybody deals with these issues differently. I wish your niece a speedy recovery & well for the future. Hope my long post is of some help

Clumsymum, my best friend's dd had her large bowel removed when she was only 11yo due to colitis/mega colon. She first had a stoma and then had a pouch op a few months later. The pouch op was very new then, I think she was only the ninth or tenth person in the UK to have it.

She had quite a few problems at first due to a fistula opening up between the bowel and vagina but that eventually healed and probably developed due to the severity of the colitis she'd been suffering. As noted here, motions were loose to begin with and urgent, plus she'd have to go up to six times a day, which apart from the nuisance aslo made her sore. However, she was put onto Immodium as a long term treatment and that made it much more manageable.

She's now 27, so has had the pouch for nearly 15 yrs (when she had the op they predicted it would last for 10yrs and she'd then need another stoma but so far so good.) and has travelled the world without undue problems; she's currently in India, which has given her mother kittens but she takes it all in her stride.

I know they have had a lot of information from the Colitis and Crohn's Disease charity, so it may be worthwhile contacting them for support, if they haven't already done so. Hth.

Thank you both.

I'm sure my sister will get lots of advice and info, but I feel for my niece, as I know I was very vain and self-conciouse when I was 18, and I'm sure the immediate future she will find life pretty embarrassing while she deals with the effects.

I'm just crossing my fingers that the op goes well. Don't expect to hear anything until 10 or 11 tonight.

Such a long op for anyone to deal with, including the family. It's the waiting thats the worst for you. Wishing you & your niece all the best. Will check in tomorrow to see how it went. xx

clumsymum I'll be thinking of you & your niece.x.x

Hope it went well, Clumsymum, and your niece has begun to make a recovery. One thing I forgot to say was that decent knickers helped my friend's dd. She couldn't wear her usual skimpy ones due to the wound but Sloggi's briefs were very comfortable and helped her feel as though her insides were being supported.

Hope everything went OK. Do let us know if you can.

Thanks all.

Op ended at about 10:30 last night, M (my niece) was back in her room by about midnight. Surgeon says all went well, and they have been able to complete the connection, without needing to have a stoma.

M has been out of bed briefly this morning, but is much too sleepy to stay in the chair. She seems to have no pain atm, thank heavens.

Thanks for the advice about knickers Sue. I'll pass the message on.

It must be a relief it's all over, hope she's back home asap.