My daughter is almost six and has battled this monster for two and a half years. Any parents of young children who've gone through this? If so, please share your experience - how did you explain the surgery to your child? How did they manage the ostomy? What were you told about jpouch vs ostomy in a young child? Did your GI say anything about the possibility of it being CD instead of UC? How did it turn out? ANY information would be great. Thanks in advance.

I've been a member here for 11 years. I am so sorry your child has to go through this. My son, who is almost 21, was diagnosed at 8, during his first flare. He had surgery 8 months later, during his second flare at barely 9, after a month of IV treatment failed. Since he had not had UC for very long, we were completely unprepared and uninformed--could barely wrap our minds around everything ourselves, much less explain it to him. All we knew is that we had to consent to whatever it took to get him out of such severe pain. I was honest and tried to give him as much information as he wanted--which was just the basics of what was going to happen from day to day. Any more was too scary. Based on Prometheus and all other diagnostic factors, his GI at UCSF--one of the top pediatric GI's--was as confident as possible that it was UC. Fortunately he was right.

His surgeon attempted a "one step," so we were also unprepared for the ostomy he ended up with three days later in an emergency surgery, due to a rupture of pouch sutures. He was in the hospital a very long time (the first pouch was finally determined to be unsalvageable, and he had to have a completely new second one), then had the ostomy for a year. He learned to empty it, but I did all the bag changes. It wasn't a very good year. Hardly a week went by that I didn't have to rush to school for one reason or another. But we got through it, and it gave us the necessary motivation return for the take-down despite dreading another surgery and hospital stay.

That was over 10 years ago, and although his surgical experience was far more grueling than most, he has done well with the pouch itself. The downside: always needing a lot more fluid, nighttime leakage with illnesses or certain dietary choices, more frequent bowel movements that are fairly liquid and cause noise and spatter. He has had pouchitis only a couple of times, and it has always responded very quickly to antibiotics. It is not a perfect alternative to having a healthy colon, but it is infinitely better than the pain of UC, years of flares and medications with side effects.

This message has been edited. Last edited by: Connie,

Hi Kill,
I am so terribly sorry for your child...so terribly unfair.
I am not a parent with a sick child, I was the child. I was born this way so I never actually remember a time when I wasn't sick or in the hospital. At 2 they tried to 'fix me' (congenital deformation)...they tried 6xs in 1 week...I ended up with a colostomy. They closed it at 3 and all of the hell started. Incontinence, cramping, blood, diareaha etc. I lived that way til age 10. Lots of hospitals and treatments etc.
What I do remember is not fear (although I had a very healthy fear of needles), it was the comradery of the other sick kids, the kindness of the nurses (a very special breed in pediatric surgery), the fun and games that we played and the silliness. I did not like general anesthetic or the O.R., it was cold and scary as a kid. I do NOT remember the pain but I do remember not understanding why I couldn't go out and play like the others.
Too much information is useless. Warnings are good but little kids have no sense of time. Do NOT make promises that you CANNOT keep. Do not LIE to your child. Never say, 'this is not going to hurt', when you know that it will. Do not promise that this is 'the last time' or 'they will never have to do that to you again'..because you DO NOT KNOW and you will loose your clout with your child if you lie for the big stuff. Tell the truth. YOU do not know, you are doing your best, but this disease has a will of its own and you have no control over it.
Give them hope and dreams. Do not tell them that they are Normal...they are not and normal, special or exceptional...Be Honest all the time. Even when it hurts you. Show your true feelings. Anger, fear, helplessness, hope, joy...they need to know that you are just as scared as them. Do not spoil them just because they are sick. Do not let them get away with not doing their chores, homework, helping around the house. Do not make their disease a 'get out of jail free card'. You will teach them that being sick is a great excuse for being lazy and excapist.
Treat them like a normal kid with a problem...but fix your sites on the future and the 'after'. Being a good parent is not sugar coating and pretending nor is it 'telling it like it is'...it is being as honest as possible when possible and adapting it all to their age...they are still a little kid. Bring in homework, educative games and concrete things to do in the hospital or at home...keep a real scheduel going..School, work, play. Do not forget that after this is all over that they must go back to normal.
And Good luck. This is hard but it too will pass.
PM me if you want to talk or any help.
Sharon

Sharon, these are such wise words. Tom and I cried together when I told him right after he woke up from being scoped that his doctor recommended immediate surgery.

Tom and I were interviewed and used in Cliff Kalibjian's book Straight from the Gut: Living with Crohn's Disease and Ulcerative Colitis. Here is an excerpt (with my added comments) he used about an incident we had. (Our names were changed to "Charlotte" and "Jeremy"):
"...From the beginning, my husband and I always told 'Jeremy' everything. We didn't want to keep information from him. I wasn't always completely sure how much he really understood [at 9, most of it], but we didn't want to hide things. However, during the long hospitalization [19 weeks], the social worker ...suggested that we shouldn't talk about it so much with the doctors in front of 'Jeremy'. [She] even put a note on his door stating this to warn the different hospital personnel coming in and out. Of course, my son picked up on how we weren't discussing his medical situation in front of him [all of a sudden]. He also read the note on his door. [Duh.] It turned out that this really frightened him. We found out [a few days later] that he thought we secretly were planning another surgery. Avoiding discussions in his presence had the exact opposite effect that the social worker intended. We learned we were originally doing the right thing by just being straight with him."

I did tend to project too much into the future and want to know all the possibilities. This type of information WAS too much and too frightening for my son. At some point he was able to tell me that he only wanted to hear as much as he had to know each day--a pretty wise approach, actually.

You know your child best and should follow your own instincts about how much to say--don't let anyone convince you to do otherwise. I felt so bad that Tom had suffered the fear of thinking we were planning something behind his back in addition to everything else he was going through. For the most part he trusted us. But he was ill, in pain and in the hospital for so long (with hopes of going home "maybe next week" repeatedly dashed) that he began to doubt he would ever get out. So it was important to reinforce that he WOULD get through it and recover.

Frankly, it was much easier going through this with a compliant, trusting 9-yr-old than it would have been with an angry, resistant teenager.

killcolitis,

I am so sorry about your daughter. My daughter had her surgery at 15. It was one of the hardest decisions I or we ever had to make. My case was a little different she understood what was going to happen. It was very hard for her as a teenager with the bag. She didn't handle it very well. She only had hers for two months.
Hers was a 2-step. I have read other post from you on other sites so I know you have done your homework.
We had a pediatric GI and also a pediatric surgeon. That I would recommend. My daughter was on remicade and now she has been fighting a cold since the end of Ocotober. AS the other person had said she is not normal, but it is her normal. February will mark 1 year since her first surgery. I am happy to say she is doing great, went back to school in August. Sometimes I have even wondered why we didn't have the surgery earlier. But my daughter has no regrets of trying all the medicines first. From what I have read , you sound like a great mother who would do anything for her child. At one point my daughter was down to 85lbs skin and bones. Now she is a happy, healthy up to 103lbs. Her surgeon can not believe how good she looks now. You know in your heart what is the right decision for her. Her surgeon told me don't think of
surgery as giving up. But just another option. Good luck in what you decide

Connie,
You are a great Mom and you are right, you know best for your child and never let anyone tell you differently.
My mom was a medical professional and a semi submissive woman who always deffered to male authority..Which meant that no matter what the doctor said, no matter how stupid or absurd or contrary to medical logic or my health and well being, she agreed with them...(to some rather disaterous results...nearly having my leg amputated off, occlusions etc)...she did not trust me or her maternal instincts. Her Bad.
Kids are so bright and intelligent these days, internet exisits and kids talk. So you have to be strait with them. Twice I got the 'prefered clergy' sent to me to give me the equivalent of 'last rights'...rather off putting for a kid...a dour religious man who asks me if I believed in God, heaven and the after life...I told him that I prefered to try the now, before trying the after! And that I really wasn't ready to go anywhere, let alone to see God. I was pissed at my parents for not telling me that I was going to die. (as it turned out, everyone was wrong...Twice )
So, give him love, hugs and hope, and some of his favorite ice cream....and an extra hug from a kid who survived it all to go on and do great (or even mediocre) things.
Sharon

Thanks all for your time and insights. I can't thank you enough. Skn, I will PM as soon as I get a second, thanks so much for the offer. Connie, I've followed your story on dragonpack as well, thanks for all of the info. Worriedmom, I'm THRILLED your daughter is going so well. I could cry reading your post, I remember when she was going into surgery last year. I appreciate a child's perspective a lot but from a parent's perspective this is just a nightmare.

I think the best thing you can do is educate yourself and it seems like you are doing a great job of that already.

The thing is, no one really knows how it's going to turn out. Some pouches turn out awesome, and some fail. Some are in-between. The good news is the majority of them turn out good. It often seems opposite because so many people have issues here, but I think that is because people only come here when they are having problems or need advice. The happy healthy pouchers are all out enjoying life for the most part!

I work at Camp Oasis (summer camp for kids with crohn's and colitis) and i've come across many kids who have had the surgery. I had one last summer who had one about 10 years ago when pouches were still pretty new and she is doing great! UC is gone and she has very minimal issues. She got her life back at the age of 6! When I see these young kids with jpouches or ostomy's I am amazed at their strength. They are still happy happy kids for the most part.

So keep on doing what you are doing. Research the surgery. Research surgeons. Talk to others with jpouches or who have kids with jpouches so that when you make your decision you are as confident as you can be in it.

Any parent would be scared. Watching your child be sick and having to make such a big decision about their health is terrifying. I am almost 30 and I still watch my mom fall apart when I am in the hospital and I have been independent for a long time. You are being a great parent who is involved in helping your child feel better. That is all any kid could ask for.

-Sara

killcolitis,
You wanted my point of view watching my daughter go through what she did. I thought I was on my way to a nervous break down. They weren't sure if my daughter had uc or crohns. They were leaning towards uc. The surgeon said they wouldn't know till they looked at her whole colon. Her surgeon never mentioned permanent ostomy. He was always pretty sure of her having the j-pouch. My daughters age made it a little bit easier explaining what was going to happen.
I do know that everytime I spoke to the doctor outside her room, she always thought the worse. That I was hiding something from her.

Hollister sent a babydoll with an ostomy in my daughters welcome package. I would be more then happy to send it to you if that would help explain things to your child. If that is what you are choosing.

KC, we have talked before believe and I the best advice anyone gave me was, "Make the decision and move forward. Everyone has a tendency to second-guess but it's not helpful - so move on" (paraphrased from memory).

We have been absolutely thrilled with our daughter's progress since her surgery. Having gone through it myself, she had some frame of reference. But we focused on telling her what they would do, and the benefits of doing the surgery. I still remember our first sugical consult. I was SO nervous afterwards, didn't expect the surgeon to set a date with us at that appt. On the way to the car, she said in all of her 7 year old wisdom, "Dad, I'm not anxious about surgery at all." I was so relieved to hear her say that.

As for the ostomy, she was sad to see it go - kind of got attached. She didn't do much management of it at all - that fell to me as the one with ostomy experience. And we struggled with hers more than I had with mine (more leakage - skin breakdown). But we found some good solutions, and things got better there too. She didn't really seem to mind the barrier changes and all. She did mind the smell though, which is funny to think about now because she doesn't much care about stinking up the bathroom with her BMs (that to me smell worse than the ostomy)

We really didn't investigate j-pouch vs. ostomy as a child. The surgeons were all about j-pouch as a solution. I'm sure it's because they feel it is a much better alternative for kids (and parents) than having to manage the ostomy for years and years.

And yes, our GI doc discussed the whole UC vs. Crohns thing with us and how with kids - it can present as one and a couple years later present as the other. I even remember reading a med journal about UC stating that the idea that UC is confined to the colon is now being questioned because of the fact that with kids, inflammation can be seen throughout the digestive tract. That was the only symptom that really had them worried about Crohns. All other tests (and he did them all) indicated UC. That, along with family history, made our doc 99% confident in the UC diagnosis.

I will say that my daughter's surgeon did everything laproscopically. No horizontal / vertical incisions at all - just a few "stabs" and the ostomy. He said that he and his associate are about the only ped surgeons in the country who will do it lapro. I'd go back to this guy in a second - he's fantastic.

We felt like lapro was important. The biggest concern I had was adhesion formation, in particular around her uterus and all. But the other surgeon (who we saw first) said that they don't have to maniuplate anything near there during the surgery the way they do it. That helped.

She had step 1 on Wed, and was ready to jump into goal and play some goalie on Saturday if you can believe that. She actually did practice the following Tuesday. Amazing.

The only hiccup we had was nightime soiling for about a month after step 2 (takedown). We didn't expect that. I always woke up after my takedown, but she just slept right on through things. Her surgeon said that would stop after about a month or so and he was right.

Wishing you the best! Let me know if you have any other questions.

Steve

Sara,
Thanks so much for your reply and for sharing your experience. It's comforting to know that despite everything they have to deal with, most of these kids are happy. They certainly are strong. If I could be 100% sure that it was UC, I'd be ready to do surgery now. But if it's not and I "choose" surgery for my daughter only to end up with an ostomy and meds anyway... I don't know how I'd cope with that really. Any thoughts as a young person who has gone through this crap?
Steve, I'm so happy for your family. For some reason I just feel cursed - I can't imagine being freed of this stupid curse, so your case is one I try to keep at the forefront of my mind. It is possible to get out of this, right? Thank you for all of your advice. We spoke to a surgeon last summer - they will try to do lapro but it all depends on what happens when they get in there. He is the Chief pediatric surgeon at the best pediatric hospital in Canada. And a really nice guy. Turns out his wife has CD and an ileo, which I found out later but certainly helps to explain his compassion and understanding of our situation. Speaking to him gave me some peace. How did you cope with the actual surgery. I think I will have to be sedated. I just don't feel strong enough to cope with it. Do you guys have any food restrictions at the moment? Does she take any OTC meds or anything at all?
Thanks again everyone for taking the time to reply.
Sherry

I agree with Connie's post above. The best thing to do is just be straight with your child. Be open and honest about what is going on, and explain things as best you can without spending too much time on "what-ifs" and worst-case scenarios. I think my daughter felt proud that we felt she was mature enough to handle conversations about what was happening to her, and we also used all the same terminology as the doctors (explaining them as we went) so she would understand what all the doctors and nurses were talking about.

At her hospital, they did have some special literature for kids about having an ostomy, which she really loved and appreciated. She shared it with a couple of close friends so they would understand what was going on. They also gave her an ostomy doll, a cute little rag doll with a little ostomy and bag attached! She still has it -- it made her feel special.

Sherry, sorry so long to reply - blame it on the long, out-of-town weekend

You know what - I think my wife and I both wondered how we were going to handle the surgery. But we both agreed after that we were surprised how calm we were about it - through all 6 1/2 hours. I attribute that to several things I think: 1) we knew this was the right thing to do, and didn't have many doubts at the time, 2) I had been through the same surgery myself - but in much worse shape - and things turned out okay, 3) we really liked and trusted our surgeon, 4) our daughter was fine with things - now freaking out or anything; of course, they gave her some versed before going into surgery and at that point she really kind of tuned us out. Much different than her first colonoscopy where she was begging me to get her out of there, and 5) prayer. You will probably be stronger than you think.

As for food restrictions or OTC meds - none at all. Amazing, really. She is afraid of spicy foods to begin with, so that's kind of self-limiting in general. And she has no fear or issues with her bathroom visits - she probably goes 5 times / day. Has the really stinky, gassy kind of BMs that come with a j-pouch - but she doesn't care one bit. I love that about her. I told her she could probably solve the smell some if she ate some Metamucil wafers with her meals, but she doesn't want to be bothered with it. And it's her choice

If you still don't feel strong enough to cope, depend on your family and friends to give you some of that strength. We had so much support from our friends and from our school.

Steve