How Early is "too early" to consider Surgery?

So sorry to hear about your child's suffering. Some do go the surgery route pretty quick when none of the meds are working or usable for them. You'll also hear lots of advice about bringing on remission through probiotics and diet, but I personally think that's a long shot once someone's quite ill. I've come to be much more open to the surgery option after hearing the experience of folks on this board.
What a tough decision, good luck.

Big Dog...I didn't expect that pen name to belong to a young mom!

looking back on it, i dont' think it's ever to early to consider surgery. Especially in a case where you have a child who is lookign at face the rest of their lives on harmful meds on what might help. Some people call it giving up when you get surgery, i look at it as taking back your life, and kicking UC's butt! i mean, really you are taking your colon out and throwing it away, what else could you do that would make you"win" more, lol.
If the meds are makign your son sick, and he is still not getting much help, then surgery is probably a good thing to look at.
If he were having great results on the meds and not having side effects then i might think it would be better to wait until he is a little older and could understand more, and maybe be a little more active in his decision.
Not to say that he won't understand or anything i dont know how to say that exactly.

Anyway, i think definetly talk to the dr, and talk to the parents of other kids who have surgery, see what they think.
I am much happier post surgery. And i can tell you this, having suffered from UC for 8 years and knowing that my son is a little more prone to it, i told my husband, in no uncertain terms, if he gets UC his colon is coming out! My husband agrees.
Good luck and best wishes for you little guy.

I would be concerned about the long-term meds and the damage they could pose for your child long-term.

He can live without a colon...and adjust a lot better than to some of the possibilities regarding the meds.

I don't know if this would help, but if I got to the point of the meds I'm using now and needing the big - gun meds...I'd opt for surgery.
i have UC-related liver disease, those meds would kill me quicker.

quincy

Thanks, all - I will visit with her Dr to see if the surgery is a viable option for her.

UC is an auto immune disease. Removing the colon just "cures" it? No meds? What about the other symptoms UC gives her, like the molluscums on her skin and the joint pain?

Peety - funny you mention my "Big Dog" user name. I love it - we have a big dog so it was an easy one!

Our daughter was diagnosed at 15-1/2 years old. She had 3 really big flares (never the mini flares some people talk about). Either she was in remission or running to the bathroom 30+ times in a few hour period over several weeks. She had surgery this past summer at 17 years old. It is a difficult decision to make for anyone, let alone when the parents have to make the final decision (we decided jointly with her).

You need to look at both sides and see which may be best for your child.

1. Speak with his pediatric GI. Make sure he is the best around.

2. Consult with a surgeon (one who has done many, many surgeries). A consultation does not mean a commitment to surgery. It just means you are doing as much research as possible.

Find out the pros and cons for your child's age.

3. Ask to speak to a family who has had a child go through the same surgery (preferably one with similar issues to your son--age, affects of medicines, etc.). Talking to someone who has gone through what you are experiencing helps alot. We did this with our daughter.

We originally met and scheduled surgery with an experienced pediatric surgeon. While he did many colorectal surgeries, he didn't specialize in them. He referred us to a family whose son had gone through it. They highly recommended him, told us about their scenario, but again, it didn't parallel our issues.  Then we went for a second opinion to another surgeon. He is not pediatric but colorectal is his specialty. He referred us to a girl who had been diagnosed around the same age as my daughter, had surgery around the same age and was now 3 years post surgery.

Our daughter didn't have many side effects from her medicines (other than the dreaded prednisone). However they never kept her in remission. That, along with the thought of her battling UC for the next 60+ years as well as wondering what long term effects the drugs would have on her, factored into our decision. We also felt this was a good time while she was still under our insurance and had no major responsibilities (job, children, etc). She was also in remission at the time of surgery, which is generally better for recovery.

So far, she is doing great. She has been on no meds since July. She lost 45 lbs of prednisone weight and looks and feels wonderful. She is finally enjoying her high school experience, something she hasn't been able to completely do since 9th grade (she is in 12th grade now).

Definitely get as much information as you can from as many people as possible. Going into surgery with your eyes wide open (as well as your mind) is a big asset. Not having to make an emergency decision will make your choices easier to see.

 

My daughter is 21. She was diagonoised at 16. She has had some really ruff times . She is in severe stages right now. The doctor has discussed removing her colon. I was just wondering how does this work. Do you have to wear a bag all of the time after surgery.

Here's a link to learn more about UC surgery options:

http://www.ccfa.org/info/surgery/surgeryuc

I was diagnosed with UC at age 5 and had my ileostomy surgery when I was 10 (mine is a permanent ileostomy, no j pouch).

My parents' biggest worry 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's the best decision they ever made for me. Because I've grown up with it, it's just a part of me, like my hands and feet.

Thirty two years later and I've travelled the world, work full time, have a mortgage and generally, life is pretty good. There isn't enough money in the world to pay me to go back to pre-surgery life with UC.

An ostomy won't stop her from enjoying life - only her mind will :)

Good luck on your decision.