Skip to main content

Ive never in my 12 years working told anyone Ive had colitis with jpouch.  Lately Ive been getting major brain fog issues while and a handful of days after taking antibiotics and would love to let ppl know this stuff.  Can't help but feel people are judging me as dumber than I am due to the brain fog and lack of focus but I'm not sure I would get much sympathy or understanding even if I did tell them anyways.  A lot of it is due to the embarrassing nature of the condition and how the subject could come around to details about the surgery I suppose...  I'ts tough because many/most other conditions people can more openly talk about without embarrassment. 

Replies sorted oldest to newest

I am one of 4 partners in a law firm. I have a J Pouch and one of my partners has Ulcerative Colitis, and it's not a secret to anyone at the firm. We both get Remicade Infusions at the same facility from the same nurse, and we have both separately told her she reminds us of the nurse in the movie "Knives Out". Our Remicade appointments are shown on the office calendar. We couldn't function as a business otherwise. We function with our bowel disease and are not ashamed of it.  

My assistant takes me to my pouchoscopy every year. And she has done so for 20 years. Although next year I may ask my girlfriend for a ride. I get sedated for it.

Everyone at my firm also knew about my thyroid cancer surgery in 2015. Another attorney at my firm, who was actually our founding partner, died of cancer last year. These things cannot be hidden in a small business, and any attempt to hide them would be viewed with great suspicion. It's better to live your life honestly then a "make believe life" that has everyone at your company wondering whether you are a foreign spy. I remember one of my regular AirBnB hosts was so evasive about his personal life and what he did for a living that I concluded he was in fact in the espionage business for a foreign country. So I was really careful with phone calls and etc. while staying in his condo. I assumed everything was taped.

I also feel like acting in a suspicious and evasive manner with one's employer creates suspicion and it's not really what you want, unless you are consistently the employee of the week, month and year and your poop doesn't stink. If your poop stinks then you should act like it. If it doesn't, or you act like it doesn't and create excuses for issues with work performance or attendance,  you will only achieve bringing a lot of scrutiny on yourself and develop a reputation as a dishonest and evasive employee. Lies to your employer generally get filed away either formally or informally, and hurt you in the long run.

CTBarrister
Last edited by CTBarrister

I work in higher education and have been open with my direct supervisor and was open with my friends in the office. I do have the support of a state union so that helps. I felt being honest has helped me with both my mental state (not having to hide things) and being able to be honest with my needs- we were able to move my office closer to the private bathroom. They were very accommodating. I feel that’s probably not the norm though. 

i should also add that I didn’t share in my previous jobs when my health was stable. It wasn’t until I got closer to having my j-pouch and I was hospitalized that I found I shared more with my friends and boss. It just made things easier. But again, working in college administration is a little more touchy-feels than your typical business climate. 

B
Last edited by Bubba1028

Since I had to take time off and then work from home after surgeries, plus two hospitalizations before the surgeries, there was no way I could keep it to myself.  Plus I wanted people to be prepared in case I suddenly left a meeting, which was a problem before the colectomy.  I'm way beyond embarassment at this point, but then I've been working professionally for 35 years so I'm a good bit older than you.  

People at work are trained not to ask personal questions, but you need to judge if it is better or worse for them to know you have health issues.  I've no problem telling people I have digestive issues, but I probably would not mention that I was confused or inattentive.   They should understand I can get my job done whether I have solid poo or not, but I don't want anyone to start wondering about my mental sharpness.  

G

Having uc (not pouch uc before removal of my colon) they knew. Going to the bathroom 20 times in a shift... They knew. But I got my work done. It wasn't office work. I worked on a freight dock. Thank goodness the bathroom was right there and not in the office part. 

I made.... I know it may be hard to believe.... But I made 40 plus trips in a shift. As soon as I would get out of the bathroom I would have to go right back in. 

Even after all my surgeries everyone knew. I didn't care. They all understood how nasty this disease was through my actions. 

They were all educated on uc. 

R. 

Mysticobra

I always found it easier to tell everyone about my journey with me body and J-pouch. Since I go to the bathroom 13-20X a day I definitely feel it is easier for people to know, especially at work. We have to hydrate throughout the day and be careful with out bodies in a physical/mental way. Sharing your journey makes it easier in my opinion. And God forbid if you ever get sick, it might helps others around you in a medical if you ever need it. And you might even help someone else by sharing your journey, you would be surprised how powerful sharing can be. 

When you share your story: be positive, open-minded, and more importantly be yourself. It is also a great opportunity to educate others about a miracle and how you do not let a disease beat you

FM
@asdfqwer posted:

Ive never in my 12 years working told anyone Ive had colitis with jpouch.  Lately Ive been getting major brain fog issues while and a handful of days after taking antibiotics and would love to let ppl know this stuff.  Can't help but feel people are judging me as dumber than I am due to the brain fog and lack of focus but I'm not sure I would get much sympathy or understanding even if I did tell them anyways.  A lot of it is due to the embarrassing nature of the condition and how the subject could come around to details about the surgery I suppose...  I'ts tough because many/most other conditions people can more openly talk about without embarrassment. 

Did all of the comments make you more comfortable about sharing?

FM

Thanks for all the comments! I do agree with not telling about the brain fog.  I have a unionized gov job so my performance isn't a huge issue but I still think it wouldn't be helpful to share I am struggling with focus.  Maybe I can get myself on a low dose of prescription meds for focus.  In regards to sharing about UC in general, I may just casually do that piece by piece when the opportunity arises. Luckily I'm only going to bathroom 1 to 3 times a day at the moment but may get worse sometimes.  We had a guy at work going through colon cancer and chemo and he never told anyone!  He's been out for months and almost died and may not come back.   

A
@asdfqwer posted:

Thanks for all the comments! I do agree with not telling about the brain fog.  I have a unionized gov job so my performance isn't a huge issue but I still think it wouldn't be helpful to share I am struggling with focus.  Maybe I can get myself on a low dose of prescription meds for focus.  In regards to sharing about UC in general, I may just casually do that piece by piece when the opportunity arises. Luckily I'm only going to bathroom 1 to 3 times a day at the moment but may get worse sometimes.  We had a guy at work going through colon cancer and chemo and he never told anyone!  He's been out for months and almost died and may not come back.   

I think you should tell them about the brain fog so they will not be hard on you.

FM

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×