Unfortunately not.  I too got the disability tax credit with my ileostomy but now that I have a J Pouch...nahhh.

That sucks! Do you know if there's any gov grants or anything

Most J-pouchers have no particular remaining disability, and thus require no particular support. Things can go wrong, of course, but they’re generally quite treatable.

@Scott F posted:

Most J-pouchers have no particular remaining disability, and thus require no particular support. Things can go wrong, of course, but they’re generally quite treatable.

I cannot tell you how wrong this is, at least from my perspective. While there is a high satisfaction rate with the procedure, complications in one form or another are not uncommon. I would say I’m infinitely more disabled with the pouch than I was with the ileostomy (across all metrics including functional, QoL, missed work, and health care utilization). Yes I still drag my ass to work but only after spending 100/400 past days in the hospital and the complications keep rolling in, many of which are not so easily treated.  Still missing work days for never ending procedures. I never claimed anything for the bag (live in the US) but I think you Canadians should be entitled to the same dispensation if you have a pouch, particularly a problematic one.

It really depends on the individual case. Scott is probably right that many J Pouchers have no disability. I do not know what the test is for disability in Canada, but there is a legal test for disability in the United States for Social Security disability purposes, and it's quite complicated. Even those who eventually are granted a disability usually are denied on their first application. It's complicated enough that I refer worker's compensation clients who have a suspected disability for SSD purposes to attorneys who specialize in such claims. Is it possible that a problematic J Pouch can qualify for Social Security Disability? Yes it is possible. Is it likely in most cases, probably not. The legal test for it is very fact sensitive and often depends on the quality of the treating doctors' medical opinions, which can sometimes suck, even for persons worthy of disability. I think that the OP alludes to a very general question and the answer, at least in the US for Social Security Disability, is that there are no black or white answers and every case is different.

As a personal injury attorney it's frustrating for me sometimes when I am representing an injured person and the medical reports I get from the doctors do not address all questions on the extent of disability. As attorneys we can ask that questions be addressed, but it doesn't mean we will get answers or answers we want. You can bring a horse to the water but you cannot make him drink the water or the kool aid. It can be frustrating, trust me. An attorney can be crippled by weak medical on these things (no pun intended here). Some doctors write really good analytical medical legal reports and some write reports that totally suck, and just leave everyone with more questions.

I am on CPP Disability (Canadian) but did not apply for the disability tax credit as the disability has to effect one 95% of the time and this is not really the case for me. I should note that the CPP Disability is not for the j pouch but rather for complications from the j pouch, surgeries, and medications.

@CTBarrister posted:

It really depends on the individual case. Scott is probably right that many J Pouchers have no disability. I do not know what the test is for disability in Canada, but there is a legal test for disability in the United States for Social Security disability purposes, and it's quite complicated. Even those who eventually are granted a disability usually are denied on their first application. It's complicated enough that I refer worker's compensation clients who have a suspected disability for SSD purposes to attorneys who specialize in such claims. Is it possible that a problematic J Pouch can qualify for Social Security Disability? Yes it is possible. Is it likely in most cases, probably not. The legal test for it is very fact sensitive and often depends on the quality of the treating doctors' medical opinions, which can sometimes suck, even for persons worthy of disability. I think that the OP alludes to a very general question and the answer, at least in the US for Social Security Disability, is that there are no black or white answers and every case is different.

As a personal injury attorney it's frustrating for me sometimes when I am representing an injured person and the medical reports I get from the doctors do not address all questions on the extent of disability. As attorneys we can ask that questions be addressed, but it doesn't mean we will get answers or answers we want. You can bring a horse to the water but you cannot make him drink the water or the kool aid. It can be frustrating, trust me. An attorney can be crippled by weak medical on these things (no pun intended here). Some doctors write really good analytical medical legal reports and some write reports that totally suck, and just leave everyone with more questions.

I’m familiar with the medicolegal complexities of disability claims (not personally but professionally) and I too am unfamiliar with Canadian thresholds but find it interesting that here in the US, those that have ostomies are conferred protections under the Americans with Disabilities Act whereas I’m not familiar with such for pouches. It would appear ostomies are given such special status in Canada too via a tax credit. Not sure about pouches but it seems not from the comments above. Of course, disability claims for SSD are made on an individual basis and one could file based on pouch complications etc. I just find it interesting (and not medically accurate) that an ostomy is more of a disability than a pouch. To Scott’s point, I disagree. Complications are not rare and not all are easily dealt with. I would say even with a perfectly functioning pouch, needing to empty it 8x (maybe more) per day is equally as burdensome as emptying a bag. And once you factor in a poorly functioning pouch, the disability can be much greater than an ostomy. They are both artificial reservoirs for waste, one is simply out of sight. Despite this site containing a very biased cohort (those without issues don’t hang out on forums such as these), I’m discovering in my j pouch journey, both anecdotally and in literature, how common complications are, much more common than even recognized on this forum.  A story to illustrate: my CRS told me I could always self catheterize and/or use enemas to empty—he has another patient that gives herself an enema in the AM and the PM then restricts what she eats during the day and it’s working for her. Would you consider this a good outcome? Statistically it is as she likely hasn’t been captured in any study, but I would say no. It’s definitely better than crapping blood uncontrollably and sometimes to a life threatening extent, but a good outcome, I don’t think so. There are innumerable examples such as this. There is also a burgeoning, now international, subspecialty focused on endoscopic management of pouch-related complications. Guess it’s to deal with all those non-issues.

@Pouch2021 posted:

There is also a burgeoning, now international, subspecialty focused on endoscopic management of pouch-related complications. Guess it’s to deal with all those non-issues.

You are definitely right about this, and I am dealing with one of these expert endoscopists  right now to manage my J Pouch inlet stricture via repeat dilations.

Although your post raises a lot of interesting and valid points, I will give you my own personal opinion- which is that despite NUMEROUS pouch complications I have had in 30 years (25 years of treating pouchitis, 2 surgical J pouch revisions, now on Remicade for inflammation at Pouch inlet and ileum, now getting strictures at pouch inlet dilated), I would not consider myself a legitimate candidate for Social Security Disability. The reason why is that with all those complications I have managed to work 30 years full time as a trial attorney since getting my J Pouch in 1992. Have I been lucky with treatment and doctors? Yes I have been lucky. But if I ever applied for SSD, someone should slap me in the face. It would be borderline fraudulent in my own mind, and I don't believe in frauding people or governments or insurance companies. Now could things get worse for me so I can't work, sure. Things could change. My bowels could perforate or I could lose the pouch or I could end up with the mother of all obstructions. But those things have not happened, I continue to work full time, and I have never looked at my J Pouch as a disability, problematic though it has been. But this is just an example that we are all different and some of us can deal with the complications and not have it impact on our work lives too much.

For my 2.5 hour Remicade infusion I bring work with me. I read a whole new insurance file during my last infusion (took 2 hours) and then went to my office and drafted a report on it after the infusion.

“But if I ever applied for SSD, someone should slap me in the face. It would be borderline fraudulent in my own mind, and I don't believe in frauding people or governments or insurance companies.”

This made me laugh. I’m in the same boat, though I have missed tons of work in the past 2 years going through the staged surgeries and fear there is more to come. I’m very fortunate to have paid short and long term disability via my employer but not everyone has this coverage. I’m back to work while wading through the ongoing issues and will continue to do so at all costs but I do actually consider it a disability right now. Not one that I’ll claim but I’m definitely silently struggling on a daily basis. I would have never said this a year ago with the ileostomy. My larger point is the pouch can be as problematic if not more so than an ostomy and can turn into a disability for some. It’s just an invisible one which is often the hardest to prove and defend.

Out of a personal vested interest, who do you see for endoscopic therapy? I just established with Bo Shen but NYC is not ideal.

@Pouch2021 posted:

Out of a personal vested interest, who do you see for endoscopic therapy? I just established with Bo Shen but NYC is not ideal.

This is the guy, he is Yale's top Advanced Endoscopist:

https://www.yalemedicine.org/s...hiruvengadam_muniraj

I am sorry to hear you have missed a lot of time from work.  I have been fortunate in that regard.  I am taking off the days on which I am getting dilated, but since I get 25 annual paid vacation days and probably will not use them all in 2021 (just too busy to take vacations), I should be slapped hard if I complained about that.  I do realize I am more fortunate than many others with problematic J Pouches.

Thank you everyone for the great replies and information.

I agree that emptying the pouch 6-10 times a day is tediulous as having the ostomy and esp if your out working, you have to be extremely conscious of what you are eating not to excite your bowels and have that constant balance of nourishment and not over eating.

I am extremely fortunately that so far I have been able to work with minimal restrictions but it can be tough to pay for supplements out of pocket which is the reason I ask wondering if theres funding or tax credits us Canadian j pouches can apply for.