It has been a couple years since I posted. I have a now 12 year old son, Luke, who had a straight pull through (no j pouch) at age 6 after diagnosis and failed treatment for UC. Drs at the time thought b/c of his age, his body would adapt without a pouch. Fast forward a few years when his dr decided it was in fact crohns since his body never adapted the way they thought it would to the straight pull thru. Fast forward a few more years to most recent diagnosis, which is now up in the air whether it is UC or Crohns. Luke is fine during the day (has to freqently go to bathroom but no accidents) but he has never been able to make it through the night without a big mess/accident. His dr now is referring us to an analrectal surgeon but meanwhile thinks that the only solution to solving the nitetime incontinence is an ileostomy, something Luke would not agree to at this point in time. I think since Luke is otherwise pretty much okay except at night and the diagnosis is up in the air, a dr ought to consider doing a j pouch to see if that helps. Anyone out there have any experience that may help???

The pathology that distinguishes between the two diseases is wrong 15-20% of the time. It was wrong in my case (I had a permanent ileostomy though because I knew that I was in the gray area between the two diseases). Generally, childhood onset of IBD is more likely to be Crohn's Disease than ulcerative colitis. If he really has Crohn's, a J-Pouch probably wouldn't help (J-Pouch failure rates in Crohn's patients are around 50%). I hope you son gets better soon.

Personally, I would not hinge my son's future on a notion that Crohn's is likely because he did not adapt to a straight pull through. That procedure has pretty much been abandoned in many circles just because of that problem. They used to think that small children would adapt better to the lack of a resevoir, but that just was not the case. Plus, those with a straight pull through who later had a pouch formed, generally did quite well. One member here, Tiffany, had a stright pull through as a child and eventually went for the j-pouch after she grew up. Read this quite old (1988) article for more information. http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1493572
Still, there are those who still advocate a straight pull through on children, but the data is conflicting on the success rates and the revision rate does still appear to be high. See this newer (2006) article. http://www.emedicine.com/ped/topic2968.htm

Before pursuing a pouch he should have an upper GI series with small bowel follow through, upper endoscopy, and perhaps even a capsule endoscopy. IBD serologies could also help tip the scales one way or the other on the IBD diagnosis. It is correct that you don't want to go forward with a j-pouch if there is a good liklihood of Crohns.

Children can have poor sphincter control during sleep even past puberty, and while fecal incontinence is not common, when there is constant loose stool, it will be more likely. So, his age could be a factor too.

Jan

Jan, thank you for your excellent response. When Luke was first diagnosed at not quite 5, the dr was convinced it was UC and the pathology of the removed colon confirmed UC. A few years later and many more blood tests and another scope, it was changed to Crohns. In april he had a blood sample sent to a lab in San Diego, the dr saying it was the most definitive. The result came back UC but the dr is not completely convinced it is correct and another scope is being scheduled. I know it can be difficult to correctly diagnose the 2 but meanwhile he continues to have thses night time problems that no one can figure out how to solve. Is it possible they will never decide what he has and if that's the case then why not try a j pouch?

If the J-Pouch fails, and has to be removed, he'll have lost more small bowel. Crohn's patients need to protect their small bowels. Excessive loss of small bowel cause malnutrition, fatigue, problems absorbing water, etc. Treatment for this is generally TPN (a feeding tube).

A J-Pouch creation and removal alone won't cause this. But when combined with abscesses and fistulas--which frequently cause the removal of small bowel--it can make things much worse.

I am going to presume that this lab is the Prometheus Labs in San Diego. Their IBD serologies and special algorithms are supposed to be the top tier in IBD serology diagnostics. I don't know how true their claims are, but they say that they can predict with a higher confidence than standard hospital serologies.
http://phx.corporate-ir.net/phoenix.zhtml?c=130685&p=ir...ID=879571&highlight=

So, having a confirmed UC by serologies and biopsy is really good news. I know that doctors want to be very sure before building a pouch in someone who has many decades ahead of him. They do not want to risk his future health unneccessarily. However, in very motivated patients, I think it is an acceptable risk, as long as you understand that if the pouch fails, there can be no redo, nor a continent ileostomy (Kock pouch or BCIR). If he has no evidence of small bowel disease, perianal disease, or fistulas, he could be a candidate.

They do have data on ileal pouches with Crohn's (based on those who had presumed UC and were later found to have Crohn's), and the failure rate is 50% or more, depending on which study you look at. The age of 12 is probably plenty old enough to understand all the risks and benefits of going forward with the j-pouch. It is possible that you may need to seek out another pediatric colorectal surgeon if the present one can't make the leap of faith with you and your son. I have known of patients getting spinal surgery with worse odds.

Jan

Hi, Knell!--I can't add to anything to what Jan has already said, just wanted to say "hi." I can't believe Luke is 12 already (though I don't know why that's so surprising; Thomas is 16).

I remember being concerned six years ago about the decison to do a straight pull-through on Luke and wondered how it would turn out for him in the long run; sorry the results weren't better. For whatever it's worth, Thomas has good control during the day but still has some nighttime incontinence, even with his j-pouch. But it ususally does not soil the bed, and it certainly is not bothersome enough that he would want to revert to an ostomy! In the absence of any other symptoms of Crohn's, it seems odd that a doctor would base that diagnosis on nighttime incontinence alone (especially in someone with a straight pull-through). I think I would get a second opinion--and maybe even a third.

I was hoping to hear from you, Connie and wondering how your son was doing. I go through such ups and downs with Luke's doctor - most of the time he seems involved and on top of things, especially bc he is a top dr in the field, and then a few months goes by and he seems to just throw his hands up. I am waiting to see whether an adult colorectal surgeon (bc he is the best in the DC area) will see Luke. It just seems like a permanent ileostomy is an extreme response to only a night problem - and feel like that should be a decision that Luke should make for himself as an adult. Why is this always so complicated???

I spoke with a young woman's mom just yesterday, she had a temp ileo for 2.5 yrs and then reconnect, not sure about crohns or uc, she has been a good patient, done everything she was told, takes pentasa, drinks pure aloe everyday and probiotics, no smoking or drinking or any other no no, she showed no sign of disease 2.5 years later when reconnected.
there's always hope.
i agree with jan, j pouch still has possible nite time incontinence or leaking, i have had mine for 19 years and i have good and bad noghts still, as an adult and female i can deal with this, men are quite different and not as tolerant aspecially as they approcah teen years, my son chris , who is 20, is his own worst enemy, had he listened he may not have gone through much of his problems and surgeries, he may end up with a perm ostomy for being non compliant!

Knell, what surgeon are you hoping to see?

Knell,
Since you live in Va. why don't you consider going to Johns Hopkins Hospital in Baltimore for consultation on this important decision. They are ranked 1st or 2nd in the country in this department and people go there from all over the country if not the world. Your local doctor should be able to assist you in making an appointment. Good luck.
Barbara Welch