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3 yr old daughter - Out of options

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Posted 10/12/2009 5:49 PM (GMT 0)
My wife has posted a few things on the ulcerative colitis board and I was curious if there were any parents of small children that had colectomies. We seem to have so many questions and worries about our daughter having a colectomy. Katie will have her next dose of remicade late this week and if she has no response then we will have surgery fairly quickly.

I know a few things will be cleared up by our surgeon, but I was really interested in how small children adapt to having to wear an appliance. We are having a hard time when we think about her attending school. I wonder how a young child becomes aware of having to empty her colostomy bag at various times throughout the day. Also, we worry that this is just not a simple operation. It seems that people need multiple surgeries over their lifetime to correct issues with the blockages/stoma, etc... Is there anyone that can confirm/deny our fears?

Any tips/information will be greatly appreciated. It is amazing how we went from a normally happy 3 year old 2 months ago to having to be prepared for surgery now.

Thanks,
Greg
Posted 10/12/2009 7:28 PM (GMT 0)
Oh im so sorry to hear this, it breaks my heart for you.
As for the lifetime of surgeries, thats not normal, some people do have blockages but usually they go away on their own, wihtout surgery. And its easy to avoid food based ones by chewing well and with someone her age, just keepign certain foods out of her diet for a little while.

One of the aides i had when i had surger, her daughter had had to hava an ostomy from when she was like 6months old, not for UC something was wrong wtih er when she was born, and she said to keep her from messing with it, they just left her in onesies, and then when the little girl was like 4 she had it reversed, but she didnt have any problems with it, she said her daughter was just used to it being there.
Posted 10/12/2009 8:17 PM (GMT 0)
Here a forum for parents in case it would help:

http://parent-2-parent.com/forum/index.php?s=d06cd1a8bcb93e2385dc9badf7ee1a6c

Posted 10/12/2009 9:59 PM (GMT 0)

Have you given any thought to a jpouch?  This will give your daughter the same function she has now but without the pain and urgency of UC.  I think I recommended your wife talk with Connie at www.j-pouch.org  Connie's son had the jpouch surgery at age 8; she would be a great resource for you both.

Sue

Posted 10/13/2009 1:38 AM (GMT 0)
Poor baby. I'm so sorry.
But she will feel so much better than being sick all of the time and being on all the meds. And she won't have to be on those any more.
I met quite a few kids with ostomies when I volunteered at a CCFA camp a few summers ago.
I also met a girl who had a total colectomy at 2 and then had the j-pouch surgery.
She was about 12 when I met her, and she said she has 'normal' stools.
I thought that was amazing.
Kids are resilient.
This is an aweful thing for her and your family to have to experience. But she'll get through it better than you think (probably even better than you will).
I don't know what it will be like in the begining, (I'm sure it'll be rough at first, it is for everyone) but I know that when things settle down, they do great! If it's something they are used to, they just accept it as the way it is.
As for emptying. You can feel it get full. And when it is, you go to the bathroom. It's a relatively easy task, and I bet she'll do fine.
A life time of surgeries is NOT normal. Some people do experience issues, though. But probably rarely.
you will get through this better than you expect. And she will too.
I would definitely look into the j-pouch option if you can have that done.
We'll help you out whenever you have rough spots.
Good Luck. Praying for you.
Posted 10/13/2009 3:38 AM (GMT 0)
Hi,
Sorry to hear that you & your daughter are having so many problems. My daughter ,Takera who is now 12 yrs old does not have uC,but has had intestinal problems since birth and after many operations, and medications etc we had a total colectomy,and she now has an illeostomy. she has had it now for a little over a year,and it was the best thing we ever did. She is in the 7th grade- a hard grade anyway,and she has adjusted very well. She always talks about "sam"( thats hers ostomys name),and all her school freinds have been very good about it. She emties her bag,when she needs,w/out a problem,just goes...alll her teachers know if she leaves class room that is the reason....Her drs tell me that she could be the poster kid for ostomies because she adjusted so well,and really loves it. As far as blockages,we have not had any,like others have said,chew extrea well,drink alot. Do we still have bumps in the road?Yes but we would never go back to before...for us it has been the best and given her a life that she has never had before!! Your family will be be in my prayers...keep us posted.
Krista & Takera
Posted 10/13/2009 6:24 AM (GMT 0)
Hi I dont mean to but in or say something not relevant or that you already know, but have you all heard of the use of enteric coated serrapeptase for UC

I Have Lyme disease and lyme can cause anything so I was just browsing the other forums and I just feel sooooooo much for your child. I just began this therapy serrapeptase in conjunction with my antibiotic treatment for Lyme . It helps the bacteria us lymies harbor become more susceptible to the antibiotics in short.

As well as treats inflammation, pain, and removes dead tissues without harming the living tissues. It also has no side effects and regulates hormones and helps immune function.

I noticed it is being used to treat ulcerative colitis. I just wanted to mention it to you. I believe it can be used with any medication.

I will try to link u to some info , again forgive me if this is not relevant to you.

below info for how it helps UC

How can Serrapeptase Help?

Serrapeptase helps immensely, as it clears out all of the inflammation and dead tissue. By alleviating the inflammation, and clearing away this problem tissue, it relieves the symptoms and allows the healing system to rapidly repair the problem.

www.enerex.ca/products/serrapeptase_rx.htm
Posted 10/13/2009 10:57 AM (GMT 0)
I've had my ileostomy since I was 10 years old (I'm 43 years old now) and believe me, parents worry about it way more than the kids actually do. The children realise they will feel better afterwards and usually, that's all they care about - it's the parents who think about the 'what ifs'. When told about my impending surgery, my only question was 'can I still go swimming?'. When told I could, I said 'go for it'! I was in the family swimming pool having the time of my life 4 weeks after surgery!

Growing up with it, she will adapt to it better than a lot of adults will - like me, she'll think it's 'normal' not to have a colon since she won't remember life being any different.

My parents' biggest fear was that one day I would turn around and say to them 'why did you let them do this to me?' I never have - it was the best decision they ever made for me. My ileostomy gave me my life back and I can never ever regret that!

At school, I just emptied at morning recess and lunch time. I was given permission to just 'get up and go' if I had to but I rarely had to. My ileostomy DID get me out of sport at school - not because I wasn't allowed to do sport (there have been quite a few people with ostomies who do all sorts of sports, Rolf Benirschke even played 7 seasons with the San Diego Chargers with his ileostomy) but because I didn't like sport so played on it a bit and the teachers didn't know any better and I wasn't about to enlighten them :)

The vast majority of people don't need additional surgeries (except maybe in the case of hernias, but more often surgeons decide surgery isn't warranted. Surgery for blockages is extremely rare). I've only ever had two ops - my original ileostomy surgery plus a year later I had my rectum and anus removed.

Good luck!
Posted 10/13/2009 1:25 PM (GMT 0)
Thank you for all of the replies. It definitely has made us feel better about it all. As parents we are a bit helpless but I am sure that she will adapt well. At 3, all she cares about is Halloween and pumpkin picking.

Thanks again.
Posted 10/13/2009 2:03 PM (GMT 0)
well halloween and pumpkin picking is very important, to me also! And if she is worried you can tell her next year she will feel tons better AND be able to eat all her candy!
Posted 10/13/2009 4:32 PM (GMT 0)
Wishing yo the best with the challenges ahead. You sound like great parents who care a lot. Maybe keep a journal of it all when she is young so when she is older she can see your love and concern for what you had to decide.

Have you tried the diets that help some? When someone can do it as strict as it says there are often quick and good results.

Hope you get it all worked out.
Posted 10/15/2009 11:22 AM (GMT 0)
Wow, what wonderful parents you are!! I've watched friends who's children have dealt with Crohn's from a young age and understand your fears...like it's been said before, children handle these things so much better than mommy and daddy!! My only suggestion would be to find the best ped c/r surgeon...there really is no substitution for experience.
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