Sigmoid colon & rectum removal?

[SupportiveMom]

Scope was today for my 14 year old. The Fellow that did the scope said the rest of the colon was in great shape, but the ulcers & inflammation is in the last 25 cms of her colon & in her rectum. Of course the Fellow is not versed in her case, so couldn't state next steps. Our GI appointment is 2 1/2 weeks.

Anyone have this type of surgery? If so was it a temporary ostomy, permanent ostomy?

 

[Muppetgirl]

I've had a low anterior resection, was prepped for ileostomy; had it sited etc but didn't have it in the end, but I still have the greater part of my rectum. A good friend of mind had most of her rectum (and a good part of the sigmoid) removed. She was given an ileostomy intended to be temporary. She still has it five years later due to complications (rv fistula). So I think if it's not total removal, then there may be a prospect of any stoma being temporary. Though it seems a lot of people are not informed by their surgeons that a significant minority end up unable to have a reversal (not sure if the stats include those keeping it by choice). I'm don't know how it would work if she's having it totally removed though. Hope you get some more info and any op goes well for her.

 

[2thFairy]

Has there been a recommendation for surgery? She may not need it. I see on your list that she has already tried Cortifoam, but what about enemas? There are cortisone enemas and 5-ASA enemas that she could try.

 

[SupportiveMom]

This scope was to determine what type of surgery she would need, not if she needs surgery. Surgery has already been confirmed.

She has done 5 ASA liquid enemas & suppository form. We are thrilled finally most of her colon has responded to medications. This area has always been an issue and glad this is the only area that will need to be removed. When we first discussed surgery in August of 2014 it was a full colectomy.

With our first surgeon consult we were told to prepare that every ostomy surgery could mean a permanent ostomy. I just wanted to know if it was possible for it to be temporary. With a lot of the disease in her rectum too I don't know what to expect.

 

[B Baker]

I had 30cms of my large bowel (sigmoid and roughly half of my rectum) removed last year. I was told it was a very low risk of an ostomy and that it would have only been if there were any complications.

I did end up with a stricture at the join and had a few issues with that. But thankfully after having it dilated/stretched things are much better and seem to be settling down.

I don't know if that helps, but I wish your daughter all the best.

 

[Muppetgirl]

With our first surgeon consult we were told to prepare that every ostomy surgery could mean a permanent ostomy. I just wanted to know if it was possible for it to be temporary. With a lot of the disease in her rectum too I don't know what to expect.

It is possible for it to be temporary.

With the rectum one of the main indications for a stoma is if the join is low.

 

[Muppetgirl]

I did end up with a stricture at the join and had a few issues with that. But thankfully after having it dilated/stretched things are much better and seem to be settling down.

Glad to hear it has improved now

 

[SupportiveMom]

So Baker no Ostomy for you? That is a positive thought. I just don't want to learn all about Ostomy care if I don't need to. We have finally accepted getting one but I already feel so saturated learning all this stuff I don't want to absorb any more info!

 

[2thFairy]

It doesn't hurt to learn about it. Even if she never needs one, you will be prepared if you research it now. If you know about it, you can be an even more supportive Mom, SupportiveMom.

 

[2thFairy]

When I was first considering having surgery that included a stoma, the day my husband first shared info that he had found about the care and possible complications of having an ostomy, showed me that he was genuinely accepting of my having one. It made it okay for me instead of freaking me out quite as bad as I was previously.

 

[SupportiveMom]

2th I know about basics of Ostomy. I just don't want to get into 2 piece system or 1, best brands, accessories etc. Some days its hard to keep track of everything & learning details I don't know if I will need yet I figure can wait. A lot of that stuff is trial & error no?

 

[Muppetgirl]

A good middle ground for me was meeting with the stoma care specialist beforehand. It did include looking at and taking away different samples in order to get familiar (and to 'practise') but it felt contained and not endless.

 

[B Baker]

No ostomy for me, I was v lucky and had a good surgeon.