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Hi All,

I'm 31yo about 9 years post J-pouch construction/colectomy and in the past few years my health has gotten worse. By no means is it bad, but I need to take off more sick time, and I hate how much my co-workers are getting to know about my poop!

What have others done in regards to getting people to understand that they have a chronic condition that is, for the most part, invisible. I actually had a good conversation with my direct supervisor (after she confronted me about taking too much sick time), but this week I pushed myself to go into work when I should have called in sick. (Also, of note, my sick time and vacation time are one in the same, so it's really no fun to take time off that could be spent on vacation!)

I also went to the doctor this week when usually I just know I need rest, bland diet, and some time. I think I will start going to the doctor more to document my illness in case it becomes an issue with HR.

Any other recommendations? Does a disability designation help? I've never felt the need to pursue this but it is starting to make me wonder. I've recently been applying for new jobs (not because of this issue, ready for a change) and some of the government jobs ask about a disability. I don't say yes because I don't want it to affect me being hired, but I do feel disabled in terms of a NEED to use the bathroom with urgency, frequency, and accessibility).

Thanks in advance!
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I do have bouts of pouchitis (2-4x/year), and my frequency increases around my period (as does abdominal pain). oftentimes I think I have a flare, but then after my period, I am back to "normal."

I'm still way better off than I was pre-surgery/on long-term doses of steroids, but I do need to use the bathroom more than most, as well as catch up on rest from nights where I'm up intermittently, hence the question.
I was a regional sales manager. I was the sales leader in our 8 person team. I went through 2 years of surgeries, and had to take 3 leave of absences. I was laid off with the reason of "territory realignment". I was the top salesperson...there is no way I will ever believe that my illness wasn't what was really behind my layoff. It was a massive layoff...300 people nation wide...easy way to slip in in without having to address health issues. I had already had my j-pouch disconnected, and was doing great when this happened. But I was on Humira, which is a very expensive drug, and I'm sure a drain on the insurance pool.
I highly encourage you to ask about FMLA with your GI/Surgeon/Doctor for your bad times. FMLA (Family Medical Leave Act) allows you to take time off without eating into your vacation/sick time. You wouldn't be getting paid, but it would be an excused absence. In addition, you may be eligible for short term disability when on leave. The documentation can be written such that you may need to take intermittent time off. I'm not sure if you will need to call the Dr.'s office when you are flaring or how that would work though. In addition, FMLA prevents you from being fired for having an illness. You are protected for 90 days during a year I believe. Well, that's as long as they don't fire you for "other" reasons.

As for applications - you are NOT required to disclose any medical information to a private businesses. In fact, I think it's illegal for them to ask you if you have any disabilities. When you are hired, the only person who needs to know about your illness is the person in HR who handles the FMLA type paperwork (and they should be under HIPPA rules just like medical providers).

All that goes out the door with government employment though. I'm not sure what to think of that question. Maybe they are actually trying to hire individuals with disabilities? I know that private companies sometimes get tax incentives for hiring veterans, disabled individuals, and the real big one...disabled veterans.

Also, I read up on ADA's definition of disability the other day. One of the classifications was something like "an individual with atypical digestion." I think the jpouch, especially a problematic jpouch, applies if you ever need to use the classification.
I don't know how much time you are missing. Does your employer have short term and long term disability? It also sounds like you should see your OBGYN. It is good to go to the doctors in case you become disabled. I think I read somewhere 4 times a year.

I was approved for social security disability recently. I also have other health issues. It sounds like your problems are escalating so I'm throwing in my 2 cents.

Have you been to your OBGYN? Some ladies have problems with the J-pouch and female parts. There is a forum in here for women with the type of problems you have. Some need operations because these problems..

Take care
Thank you all for the info! Esp on the FMLA issue, it would be great to take time off and not have it effect my vacation time as much (just my wallet a little).

I am also looking into my health and if there is anything I can do to improve it. The only thing that seems to be out there that I haven't tried is daily antibiotics, which I have dreaded going on in a daily - seems to be not a good idea, but I see others here do take them. Also the pain meds. I will meet with my specialist next week and see what he says.

Thanks so much!
Sarah

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