Don't have any answers for you, except the jpouch is worth a try. Don't do anything "permanent" unless you have to. If it's a 30-50% failure rate, then it's a 50-70% success rate. Also, most people that have successful jpouches, had their rectum removed. The ones that still have a rectum have cuffitis which are symptoms of colitis. good luck

Hi,
I am so sorry for your daugher and what she is going through, I know what it was like...I lived pretty much the same thing at her age...I wasn't given the same options in those days because they did not exisit...I had my colostomy done at age 2 with a reconnect at 3...Was very sick growing up and through my teens (not great when you are trying to navigate your way through junior high and high school!)...but at 18 they gave me the option of a K pouch (an internal ileostomy that is continent (no leakage) with only a tiny stoma on the outside...it gave me my life back (the one I never had)...and I have been pretty happy with it ever since other than some rough spots 20+yrs later.
There are no magic remedies, no miracle cures (although I know that you wish that there were)...you will not find an herb that will cure her or a pill that will make it all go away so, I am sad to say, you need to be very strong and very serious about the options she has.
The younger a patient is, the faster they adapt to a J pouch. It is usually a pretty good success in them and she would have a perfectly normal life with few if no complications other than the original adaptation period of 3-6 months when her body is adjusting to its new processes.
If it was me again, that is what I would choose. but it isn't me, it is your daughter and you need to do what you think best...but please think Long Term and not just Now...whatever you choose now will mean that she spends her adolecence living with it...And it is not easy...an ileo is really hard on a girl in school and I wouldn't wish it on her. Not doing anything isn't an answer either. Like said previously, cuffitis could be a problem but then again, she could live happily and never have it and if worse came to worse, there is always the K pouch if the j doesn't work.
I hope that this helps you a bit and that whatever you decide, it works well for her and she has a happy and healthy life.
Sharon

Ive had a j pouch for 22 years, and know all about how good and how bad it can be. Knowing that, I am absolutely sure, even with the success rate being 90% plus with UC, I would never opt for a j pouch for my children if the time came they had to have surgery. No way in heck would I ever go for it when you are looking at a possible 50% failure rate with crohns. This is not pulling a tooth here, if it is a failure. This is more life threatening surgery to remove the failed pouch, plus possibly years of sickness, health problems, doctor visits etc, just trying to save the failed pouch beforehand. To me, thats just plain crazy going for a pouch when crohns is involved, no matter how reassuring the doctors can be.

sorry to hear about your situation. I assume they have tried to treat the severe inflammation in the rectum already (example: canasa, rowasa enema, other meds)? Maybe you should get a 2nd and 3rd opinion before making a decision. i would personally opt for a permanent ostomy if i was 100% certain it was crohn's. I had an ostomy for a long time and it wasn't that bad. I was extremely healthy with it. Although i can see how hard it would be for an 11 year old. I have heard of people that manage with a j-pouch and crohn's, so it is possible, but might be challenging. there are different "natural remedies" that may or may not work. none worked for me, but you could explore them (along with regular doctor visits).

you could also try to connect with other parents and support groups, like DragonPack (IBD parents support), CCFA, UOAA, and i am sure there are others. you are not alone. i think Stanford, UCLA, USC, Mayo, Cleveland Clinic have good IBD centers. i really hope you find some answers and that your daughter is on the path to great health.

Thank you all for your comments. Mark - They cannot tell me its crohns 100% which is why they have given the option of a J pouch. I have heard great things about the j pouch success rate which is why I am hesitant making her ostomy permanent. She has only been severely sick 1 time. No blood transfusions just 1 hospital visit and the removal of her colon. The only symptom she has now is slight blood in rectum. She is not sick - fatigued possibly but she has only been out of hospital for 2 months still re cooping from being in bed for 40 plus days out of it.

fq - she has not been treated with yet for inflammation in rectum. Results came back friday with inflammation, spoke of meds but no prescription. I called yesterday to ask what hte plan is. we have not tried can as or rowasa enema? Pentasa, prednisone, remicade. ( she is allergic to azithroprine and Metaprocurate ).sp?
I had not heard of DragonPack. THank you!

TMG,

My daughter was diagnosed when she was 6 1/2 years old (October, 2009) and had surgery just before she turned 8 (February and April, 2011). She did not end up in the hospital in 2009 - we were aware enough to recognize it (I had UC and j-pouch surgery), and were fortunate enough to get into the doc for a scope and meds within a 2 week period. She did end up in the hospital for 12 days a year later in 2010, followed by surgery 4 months later.

She had pancolitis upon scope in both 2009 (mild to moderate) and 2010 (severe), but prior to her surgery her primary issue was also in her rectum.

Our GI did every test possible to make a Crohns vs. UC determination, and everything came back as UC. That made him much more willing to agree that surgery was the right thing to do. But they did tell us that with kids, IBD can manifest as Crohns and then a few years later manifest as UC (they don't know why).

I suppose it should be encouraging to you that things seem to be confined to the colon, but that is no guarantee that she will not have issues with a j-pouch. I'm not sure what I would do in your shoes - except for the fact that surgery seems like the right thing to do.

Can you talk to your doctor about doing a 3-step procedure? He could take out the colon, leave the rectum even though it's causing her problems and then see how you all do with the end ileostomy? If you all find the ostomy provides her a good quality of life, maybe that will make your decision an she can have a second surgery to remove the rectum? Or, if the ostomy is extremely troublesome (leaks all the time, severe dehydration, she can't stand to deal with it in an irrational manner, etc.), you all can push for j-pouch creation in a second surgery and then takedown in the third?

Just an idea.

Steve

quote:

He could take out the colon, leave the rectum even though it's causing her problems and then see how you all do with the end ileostomy?

ElmerFudd - so sorry to hear you and your daughter both suffered with UC. I thought of this too, but according to TMG, her daughter already had her colectomy and is living with an ostomy.

quote:

My 11 year old daughter underwent total colectomy with Ilistomy this last June 2012...Current problem is severe inflammation in rectum

People with UC also have severe inflammation in the rectum. As mentioned, i think you should get a 2nd/3rd opinion to confirm crohn's and see if they can bring inflammation in the rectum down until you can make a decision. Not sure if the hospital in your area is very experienced in IBD, so you could try a couple other places. hope your doctors can help guide you in your decision. best wishes.

My son was in his early 20's when he had his colon removed for "indeterminate colilitis - probable crohns". He opted to have his rectum left in should the dx change or if medical science came up with a better idea.

After a few years, he was dealing well with the ostomy but the rectum become more and more of a problem. He finally went out to the Cleveland Clinic for a dx tie-breaker and they said it was "probable UC" and gave him an 80% chance for a successful J-pouch. Although it has only been a few months, it is working better than he could have hoped for.

I know it is a very stressful time for your entire family. As was mentioned, you may want to check out the Dragonpack IBD Parents Support Board. There is a group a very caring mothers who can provide a lot of sound advice and much "cyber" hand-holding.

I know everyone has their own opinions and they are entitled to that. I am 21 and had colitis since 13 and have been having surgery since 16. Extra surgeries due to mess up by surgeon. I would do anything and everything (as many surgeries as it takes), if there was a possibility of having a jpouch and not a permanent ileostomy. I believe that most people that have successful jpouches don't have a rectum. As a young person I think your daughter should have every possibility for successful jpouch. Go to Cleveland.

I think you should schedule a consult at the Cleveland Clinic. You mentioned your daughter has a unique situation and they are the experts. I agree with Dawn that a J-pouch is preferably mentally but it may not be interest of your daughters health. J-pouches have a high failure rate in Chrohns patients so you need to go in knowing what the risks are.

Thank you all for your advise. I tend to lean towards dawn58 who said, " I would do anything and everything ( as many surgeries as it takes), if there was a possibility of having a jpouch and not a permanent ileostomy". Although, my daughter is only 11 right now, her opinion is she does not want the ostomy bag. Middle school just started and on day 3 she came home mortified by the sounds from the ostomy bag. A few kdis asked what all that noise was. She said she had not eaten but day 3 of middle school already was terribly embarrassing.

I am really confused as to to what to do... I called today to ask about the "rowasa enema". It was not mentioned before becasuse of severity in rectum? They tend not to treat at this point knowing rectum has to come out, one way or the other?
Cleveland CLinic keeps getting mentioned.... How do you know WHO is the best? I am in Seattle.

i think the important thing to do is to get other opinions from other DOCTORS (surgeons, GIs) experienced with IBD, whether this is truly crohn's or not. without knowing, it's hard to say what is the best option. Cleveland Clinic has one of the world's best IBD and gastro surgical centers. Most people there are good, I assume. Heard great things about Dr. Shen, the GI there. There are other places in california closer to where you live, as mentioned, like UCLA, stanford, cedars sinai. not sure about seattle area, but there must be someone good there too. maybe you can start a new thread asking about GI's and surgeons in Seattle area, or ask the CCFA for recommendations.....

by the way, my tummy makes noises with a j-pouch too. a j-pouch may still be preferred, but just know that it's not perfect.