Need info please. My daughter is 6 years old. Had a prolapsed intestine in late Feb had surgery, now had colonoscopy today and they found too many polyps to remove. They want her to have a colectomy. What are the risks. Will she have a colostomy? Please help...

You'll need to speak to the surgeon and find out exactly what all they will be doing during the surgery. Are they going to construct a j pouch? I think most of us have an ostomy for some period of time. I will keep you in my prayers. Keep us updated on her.

I know this must be terrifying for you. I feel horrible that you have to go through this and have to try to get a whole bunch of information so you feel as comfortable as you possibly can with your daughter's surgery.

What is your daughter's disease? It sort of sounds like FAP. If so, it appears that our members with FAP do really well after surgery. They still have to have periodic testing. If your daughter does have FAP then you can get a ton of information from our FAP'ers.

If your daughter has something else going on, I'd think she'd still do well. We've had a lot of little people who've had this surgery and then had j-pouch surgery. Have any of the doctors said she's a candidate for j-pouch surgery? You might want to research that.

If your daughter isn't a candidate for j-pouch surgery, you can still get a ton of information here. You should also visit Shaz' site ( http://www.ostomates.org/ ). Shaz is from Australia. As I recall, she had a colectomy when she was 10 and has had an ostomy since. She's another incredible resource.

If you can give us a bit more information I'm sure you'll get a lot of responses.

Welcome to the site. However, I really wish you never had to find us. But we'll all help get you through this.

kathy

I'm sorry to hear about your daughter She is so young. How awful!

It does sound like FAP (familial adenomatous polyposis). Did they say anything about that?
She wouldn't have a colostomy if she has a total colectomy. She would have an ileostomy. Since you're new to this, knowing the appropriate terms is helpful when you are researching and reading.

Good luck

I am so sorry to hear about your daughter. All she is going through now will just make her a much more compassionate and stronger person as she grows older.

My only advice is to make sure you find a pediatric surgeon that specializes and has lots of experience in colectomy's, etc at a top children's hospital.

Best of luck to you and your daughter

Keith

I'm so sorry to hear about this I was diagnosed with UC at 6 then had the surgeries at 9. I know its really hard to see your daughter go through this, but being such a young age will help in the long run. She'll cope so much better, versus being a teenager. Make sure you get the absolute best care possible. Ask as many questions as you can. I hope everything goes ok! Keep us updated!

Oh poor sweetheart
I was going to suggest you PM Chelsea, but I see she already replied! Life doesn't end with either an ileostomy or a pouch; you just need to talk to the right people and get lots of good advice. Scour these boards - there's lots of useful information here. Good luck!!

No advice, just to say my heart aches for your little girl. Agree with everyone else's statements-life can be great with an ostomy or a j-pouch, and I'm sure your little girl's a trooper. I have a 7 year old son; can only imagine the anxiety and unknowns you face. (I have an ostomy; Life is awesome) You're in my prayers.

I cannot offer any advice as I am new to having a J-pouch. I did have a lot of operations as a child and I will keep your daugher and your family in my prayers.

My son's colectomy for UC was a couple of weeks after his 9th birthday. Let me know if I can answer any specific questions. In general, it seems she might have a bit easier time if she is not already ill and weak when she has the surgery.

quote:

I know this must be terrifying for you. I feel horrible that you have to go through this and have to try to get a whole bunch of information so you feel as comfortable as you possibly can with your daughter's surgery.

What is your daughter's disease? It sort of sounds like FAP. If so, it appears that our members with FAP do really well after surgery. They still have to have periodic testing. If your daughter does have FAP then you can get a ton of information from our FAP'ers.

If your daughter has something else going on, I'd think she'd still do well. We've had a lot of little people who've had this surgery and then had j-pouch surgery. Have any of the doctors said she's a candidate for j-pouch surgery? You might want to research that.

If your daughter isn't a candidate for j-pouch surgery, you can still get a ton of information here. You should also visit Shaz' site ( http://www.ostomates.org/ ). Shaz is from Australia. As I recall, she had a colectomy when she was 10 and has had an ostomy since. She's another incredible resource.

If you can give us a bit more information I'm sure you'll get a lot of responses.

Welcome to the site. However, I really wish you never had to find us. But we'll all help get you through this.

Sounds like maybe she's got FAP?

If so, I can put you in touch with a fellow FAPer who has a young child (or two) who has gone thru total colectomy, etc..

I'm very sorry to hear about what your daughter is going through.

It will be important to understand the disease as well as the surgical options that the surgeon may suggest. With ulcerative colitis, surgery typically involves removing the colon and the rectum. You either have an ileostomy (the end of the ileum sticks out of the belly) or the surgeon constructs a new internal pouch using the end of the ileum (a "j-pouch") and hooks it up to the anus. The j-pouch kinda replaces the rectum. With a j-pouch, there is often a temporary ileostomy to give the pouch a chance to heal.

I don't know as much about FAP and other cancer-related diseases, but I have heard that another surgical option is an ileorectal anastomosis, or IRA. That is, if the surgeon thinks the rectum is in good shape, he removes only the colon, and then connects the ileum to the rectum. But an IRA is not an option in many cases. If not, an ileostomy or a j-pouch would be considered.

I really feel sorry for yr doughter

U had to see a surgeon, and try to know everything you can from him,

and if u needed more assest u can ask here whatever u want.

u well find many helpful guys here to advice u

just don't panic and everything ganna be fine

my prayers to yr doughter

So sorry to hear what your daughter is going through. My daughter was diagnosed at 5 and had the surgery at 15. I'll pray for her and you.