What do you do for work and how do you manage having a JPouch?

Tomorrow will be 7 weeks post takedown for me. I am back to work as I have a “desk” job and am close to a bathroom most of the time. I’m at around 4-6 movements in a 24 hour span.

I will actually be starting a career in finance as of January but feel confident as I’m feeling healthy and pretty much back to normal now. BUT everyone is different. If you’re not comfortable yet- don’t push yourself. Most people won’t understand what we’ve all been through and only you know your body.

I’m 29.

That's awesome, glad to hear you're nearly back to normal. Wish I could say the same!

I have worked as a trial attorney for the same 30 years I have had my J Pouch. My J pouch surgery occurred after I graduated law school and passed the bar.

The J Pouch hasn't really affected my work day at all. I do remember one time before an anticipated lengthy court hearing, when I was struggling with pouchitis. I told the Judge and opposing counsel I might need bathroom breaks during the proceedings. Then I felt stupid at the end of the day when I didn't need to ask to take a break a single time. I think it was a situation of adrenaline kicking in and mind over matter where my Pouch was so far out of my mind that it just didn't exist for the length of that hearing.

For most court events there are usually multiple recesses and breaks in the normal course, and I do fine with using that usual break time.

Of course as with others, the Covid pandemic had a huge impact on my business. Whereas before March 2020, all of my depositions, court pretrial conferences, mediations and arbitrations were all in person, the vast majority are now on Zoom or similar virtual platforms. Since March 2, 2020, I have had exactly one live in person court hearing. Which was about a month ago. In that span of time jury trials were suspended in Connecticut for 15 months. At the same time remote mediations and arbitrations skyrocketed as a method of alternative dispute resolution of those suspended jury trials.

However I did do a Court trial through Microsoft Teams and it was totally cool! My client came to my office and testified remotely. Exhibits were pre-filed with the Court. In these types of settings there is ZERO impact in having a J Pouch. If I need to take a break I take a break whenever I want to. So Covid has changed my business, maybe even irrevocably, into a substantially more J pouch friendly business. I also recently noticed that the Court is scheduling remote pre-trial and trial management conferences into 2023. This is a statement as to how much the actual practice of law has changed since March 2020. To me this would have been unthinkable in February 2020. I had not even heard of Zoom in March 2020 and now it's all of what I do in terms of the actual Court business. The rest of my time is spent writing reports on the Court business. Doing things remotely frees up more time for the reporting aspect of the business, because I don't lose time traveling to courts all over the state any more (which I would get paid for at half the defense rate, but that's not productive time as far as working on other files and reporting efficiency goes). That road time is now productive time on other files.

One other thing: I haven't worked remotely from home at all, except for 2 weeks in October 2020 when I traveled to Florida after my mother passed away. I had to quarantine for 2 weeks upon my return to CT by law. I go to an office every day and we have Zoom on all the computers as well as a dedicated "Zoom Room" for significant remote hearings.

Thanks for the response CT! I agree about the adrenaline part. When I'm out and about doing things, whether I'm with friends at the bar or doing outdoorsy stuff, I don't really get the urge to go as much as I do sitting at home working or relaxing. I think it's because my mind is elsewhere and the thought of having to use the restroom isn't at the forefront when I am busy. I told my GI doc that and he said, it's probably very common among Jpouchers that if they think about going to the restroom they almost always can make themselves go.

I am a critical care RN and flight attendant.  I have had my J pouch for 8 years.  My pouch is very sensitive and when I eat I usually need to go about 15 min later.  I time my meals and breaks accordingly.  Touch wood I have never had an urgent problem.  I am very very careful though because in either workplace (running a code, or at 41,000 feet) stuff happens.

I'm retired now.

3 years.

But for 32 years I worked on a freight dock.  Drove a truck.

Lift truck. Loading and unloading trailers.

Most of those years were prior to my pouch when I had my colon. And the problems that came along with it.

I had th pouch for two years and an end ileo towards the last few years.

It was a large LTL company. Unionized.  The manager and supervisors knew what was up with me. But I did my job well despite the problems. Never left work undone or work as a matter of fact for any reason involving my problems.

Work took some of it off my mind.  I still had to deal with it. And looking back I don't know how I did it at my worst  but I did. I just felt I had to plug through it.

I not necessarily enjoyed my job but I didn't mind doing the work. It was a good job and I actually retired from it.

All I can say is it was a good job and I plugged through it.

I'm just glad I don't have to work anymore. Lol.

Richard

I've often wondered the samething.  I've been struggling just doing chores around the house,  I don't know how I'll ever be able to get back to work.  Having to constantly go to the bathroom,  having horrible gas pain and just having excessive gas which makes so much noise,  I don't think I'll ever be able to get back to work.  Has anyone filed for disability because of this?

I work in the printing industry and somedays the pain gives me shivers,I work an 8 hour shift with a 20 minute break 6 days a week .somedays I go 6 times and somedays I go once.Ive been finding lately a Chinese diet like egg fried rice with shrimps or chicken gives me a good day at work.I think cutting out bread and dairy may help.somedays I feel it's unfair to have to work in this condition but the government pay for unemployed is worse.Its a hidden pain and many people think I'm cured but I tell them that it's like curing a broken arm by chopping your arm off.they don't seem to realise that you will never be cured or be normal again.

I am 2 months out from my takedown surgery, and still debating if im ready to go back to work. I am a recent nurse graduate and I know wherever I go I will be working long shifts and on my feet at all times. It makes me really nervous just thinking about it, I don’t feel comfortable yet to go out there and start working but I miss it.. I miss having a “productive life” but being at home makes me feel secure. I am 27 years old so it sucks being at home all the time and not doing the things I enjoy and being out there like people my age. My surgeon says to give it some time , it should get better and most of it is “mental” its the anxiety that takes over us and makes us want to go use the toilet so often. I am having an average of 8 BM a day so far, which he suggested is normal for the time I have post surgery.

I had my take down 17 months ago and have been back to work for 13 months. I am a utility work and work all over the county. I only have public restrooms available to me and at the height of Covid not a lot of places would NOT let me use the bathroom. Somehow I made it through and more places are letting me use their restrooms. I go on average 14 time in a 24 hour period…..it is exhausting.  My job is very physical and am happy to be able to perform with a jpouch..

If you work in an office building you probably have access to a bathroom as needed.  As you get used to your pouch you will learn how best to time your meals and manage your food selections around your commute and any function when you can't just slip out.   I had more accidents with the colitis and the ostomy appliance than with my j-pouch, so I'd say it got better after surgery.

@SadieM1210 posted:

I've often wondered the samething.  I've been struggling just doing chores around the house,  I don't know how I'll ever be able to get back to work.  Having to constantly go to the bathroom,  having horrible gas pain and just having excessive gas which makes so much noise,  I don't think I'll ever be able to get back to work.  Has anyone filed for disability because of this?

I don't think a pouch or any problems related to it would be considered a disability.

Neither is an end ileo.

I asked my surgeon on the end ileo. She said no. I was just curious. So I think a pouch is a no on disability. Having uc or chrons is not either.

I'm not positive on this.  And I coukd stand corrected.

Richard.

@Mysticobra I'm sure you are right.  But it should be taken into consideration.  So many people are suffering from this and unable to work. I'm literally in bed for 4 hours in pain before I even start my day.

Folks, this is in response to the question of whether IBD or digestive health issues may be covered by disability law and therefore whether reasonable accommodations might be provided to employees facing such difficulties. In the US they can be under the federal Americans with Disabilities Act (passed by the way with the support of the late Senator Bob Dole).

Such a determination is heavily fact-specific, so your mileage may vary. There are helpful resources available on these questions including the following:

https://askjan.org/disabilitie...stinal-Disorders.cfm

https://www.crohnscolitisfound...and-inflammatory.pdf

(This is provided for informational purposes only, not as legal advice to be clear!)

My gastroenterologist has told me that she has completed paperwork for many j-pouchers in support of ultimately successful requests for accommodation. So it is possible. Best wishes to you all!

if you have a good gastroeneteroligist willing to write a letter toward filing for disability with ssdi then yes having a jpouch can be filed as a disability.

im someone recieving ssdi benefits since age 23 partly because i have a jpouch and am a 9 %'er so i go to the bathroom 10-14 times a day sometimes more.

basically whatever i put in my mouth i have to move my bowels within 5 to 10 minutes because there is a sensatioon/urge/feeling telling me i have to go empty my pouch/defacate.

i have a sigmoid intact port of colon for reference and an ileo-anal anastomosis. not not a straight oull thru. the pouch and a good 6 inches of colon are there inside me.

everyone is different of course but receiving disability is such a blessing and eases my life in so many ways.

i didnt have to fight for the ssdi benefits. depression early on and anxiety issues helped get the disability plus most people will also consider using a bathroom 10+ times a day pouch or not a disability.

an ileoostomy is not for everyone and im not sharing for people to recommend i rid myself of my pouch.  i have familial polyposis as a diagnosis for the reasoning of my pouch, not ibd.

im just going to share and say some of us are better off that we dont try to go to work, it would be a night mare not to mention extra stressful than life already can be as.

ive been getting ssdi  since 2004 permanantly so those of you who thought and said its not possible, it is. you need  1) a good doc to write the write stuff up on paper/document it right and you dont need a lawyer fro diability. i never had one.

just thought id share.

--len

I know it's possible.

I applied.

Got accepted.  6 months after I went back to work after being off 9 months.  But I told them I was back at work and to disregard it. I would have rather been working back at my old job.

Now this is not being disrespectful to anyone receiving disability. My wife recieves it for other issues. And has since she was in her 50's.

I applied for it myself. No Dr's no lawyers. They are very specific about your daily routines and I was specific in explaining it. I was incapacitated at the beginning. As time went on it got to where I could go to work. But I ended up having it taken out. It wasn't worth it anymore.  Now I worked with my end ileo the last two plus years and retired. Working with the end ileo was 100% better. I'd forget I even had it.

As I said. No disrespect to anyone.

It is possible in extreme cases. But not for everyone.

Besides. I don't know what the payment was  but I know I made more working than disability .  I had bills before and after my surgery. And the mortgage companies don't care why you can't make a payment.  Lol.

Richard.

P. S.

At the time I filed I couldn't even dress myself.  Let alone anything else. It took 9 months for me to get back to work.  And I worked for a union company. We had a weekly disability stipend that only lasted 6 months. I went 3 months with nothing coming in. Not that the union stipend covered my whole check. Just 1/3rd.  We used alot of savings in the whole time I was off. So I filed just in case I couldn't go back to work. It was a terrible time. Physically. Mentally. Financially.

@DoughBoyInPHL78 thank you for sharing.  It actually gave me some hope. I would love to just go back to work.  I loved my job and my independence but unfortunately I don't have much of a choice.  I can't even do simple chores around the house. You sharing your story really helped.

I could get a disability benefit that would pay $450 a week or I can work and get $1000.00+a week.I could stay home and use my toilet and paper.or use their toilet and paper.but quality of   life is far better working .

It's so helpful for people to share their experiences--why I'm so grateful for this forum! I learn a lot from everyone's perspectives.

It sounds like there are two distinct questions that have emerged in this thread.

One is whether an employee with a j-pouch may be able to request a reasonable accommodation to enable them to perform their job under the U.S. Americans with Disabilities Act (which prohibits discrimination on the basis of disability) so that they can remain actively employed. That was the issue that I was responding to in my post earlier in this thread and provided a couple of links to information about ADA accommodations.

The second issue is whether someone with a j-pouch (or IBD) who is unable to work because of their medical condition could apply and be eligible for Social Security disability benefits in the US. That's a different question (although also heavily fact-dependent). Here are some links about that:

https://www.ssa.gov/benefits/disability/qualify.html

https://www.ssa.gov/disability...-Digestive-Adult.htm

Wishing all of you the support, care, compassion, and skilled treatment you need and deserve in your lives - from family, friends, health care professionals, and those you work with. And thanks again to everyone for sharing so generously.

As an attorney who defends personal injury cases I frequently come across medical records of persons who have been rendered disabled and often have the chance to access their Social Security Disability files, because their physical status has been placed in issue by the lawsuit. As Portia mentioned the Social Security Disability Determination is intensely fact dependent on the particular case and the particular individual circumstances. Administrative Law Judges make the disability determination after reviewing significant medical evidence (medical records) and applying legal criteria.

Somewhat recently I defended a case brought by a woman injured in a car accident who was already collecting social security disability based on Crohn's Disease. My recollection is that the primary disabling condition was Crohn's Disease but there were (and often are) secondary disabling conditions of a physical and non-systemic nature. Specifically, she had prior back issues, which is why I was able to get her SSDI file. As someone who has Crohn's Disease myself, my impression reading her records was that her Crohn's Disease wasn't significantly worse than my own, but her ability to deal with it or manage it apparently was. Anyway, she did have other pre-existing issues, and the car accident made all of her pre-existing issues worse, so she did end up achieving a settlement.

I have not come across a J Pouch disability case, but that certainly doesn't mean one doesn't exist. The notion that "J pouches either do, or do not, qualify for disability", is a totally erroneous way to analyze the issue. That's not the way that the issue is analyzed, at all. There is no such thing as "per se disabilities" or "per se non-disabilities". It's the totality of the medical condition of the person and the totality of their factual circumstances, whether it's Crohn's, a J Pouch or a back injury from a car accident. The legal criteria doesn't change and the requirement of evidence to support the claimed disability doesn't change.

15yrs in digital design and animation. I have mainly worked from home, I prefer it. Since I got arthritis 5yrs ago I have cut down to part time. I try to listen to my body and have adjusted my lifestyle accordingly. I'm grateful to work in a field I enjoy.

I, thankfully, have not had control issues since I've had the J Pouch.  On the other hand, working before the JPouch was beyond awful.  I can't believe I pushed through it and didn't go on disability.  I should have.

I have lived and worked with a j-pouch since 1993. I spent 20 years working rotating shifts in an Aluminum Smelter in near unbearable conditions i.e. 12-14 hour shifts, physical labor, extreme heat wearing double layer fire proof clothing and on my feet constantly (35,000 steps per day = 15 plus miles per day) all with a j-Pouch. The plant closed and i now supervise a municipal fleet for a public utility. Suffered peritonitis and sepsis in August of 2020 due to a fistula in my pouch. Just had a takedown on Dec. 6th 2021. Grateful to be hooked back up to my j-pouch. I keep pushing forward and prefer to keep working. I don't do well and feel disconnected and unproductive at home. Living with Crohn’s has taught me that through the difficult trials i am stronger and more able than i think. It produces perseverance, courage, patience and compassion.  It hasn't been a bed of roses by any stretch but it has shaped me and made a better person in the end. Stay strong, positive snd keep pushing forward. I wish you all well.

Thank you for all the replies! Very encouraging to hear that a lot of you were able to work efficiently.

I don’t think I ever missed a day of work because of my J-pouch (except for surgery and a 6-week surgical recovery).

I worked in an office pre surgery. My last surgery was Feb 2020 and when I came off of medical leave everyone was working from home due to covid. I have the same job but now we have been given the option to work remote permanently, which I chose to do. It's nice on those rough days to have the comforts of home. When I do occasionally go in for meetings I do ok, no major issues.