How many people here work full-time?

I agree. It's none of their business. No one is stating that anyone is lying. I've had my j-pouch for 22 years and I haven't told my employers that I have a j-pouch. Why? I see it no more important than an employee telling an employer that she has had a hysterectomy. Something needed to get fixed and it got fixed. End of story. Of course, that doesn't mean that something else might pop up but then again, it might not.

I don't think anyone is suggesting that anyone lied on a health insurance exam. If one's company has group insurance the questions are pretty minor. As-a-matter-of-fact, I don't even remember answering any in-depth questions about my health when I got group insurance.

HIPPAA laws would prevent a health provider from giving out any information to an employer.

kathy

quote:

I don't think anyone is suggesting that anyone lied on a health insurance exam.

I am suggesting that people NOT lie on employee applications or on group health insurance applications in following up on the admonitions of some other posters. I completed a group health insurance application within the last 5 years and there were extensive questions about past medical history, including specifically about Crohn's, UC, surgeries and vague questions about medical procedures. I was concerned about answering some of the questions which quite frankly confused me, and I actually went and read my own medical records before answering the questions. The questionnaires are written by people who themselves do not understand fully the diseases they are asking questions about.

By the ways, HIPAA is subject to being waived by signing a standard waiver and many people sign without reading because it is just "paperwork". That is why I mentioned that it could get shared with your employer. I deal with people who sign things without understanding what they are signing/doing all the time.

The problem with a new employer's health insurance plan is our preexisting condition(s). That is what "Obama Care" is suppose to help with but, in my opinion, this area was not addressed enough in the bill. I've heard insurance companies can not drop you because of a preexisting condition but am not sure they protect us going into a new insurance plan. Maybe somebody here knows more about this.

Back in the day when I started working the only questions we answered to obtain health insurance through our employer were Name, age, and sex. Premiums were the same for everyone.

Then insurance companies came up with plans that if you had a relatively young work force the premiums were smaller and more for the older person. I suppose they think the older we get the more likely we are to have health problems. Fast forward and everyone has to fill out extensive questionnaires about themselves and their families. The insurance companies then charge more or won't even insure them.
In the 70's things were easier but I wouldn't want to go back there on most other issues

Just like employers can not ask if you are married and/or have children they can not ask about your personal health problems. I think the health insurance papers are filled out after hiring. In any event employers should not be able to fire someone because they have a medical condition - Look at Kathy Smith, she probably misses less work the coloned people.

So DJB is right don't lie and it is none of your potential employers business. Don't most employers require employees to pay for part or all of their insurance? I know a guy that has to pay $20 more per month because he smokes a pack of cigarettes a week.

I have gone through 3 or 4 health insurers in the last few years. The preexisting condition issue becomes a problem, I believe, only if there is a lapse in coverage exceeding 18 months. The whole point of Obamacare is to prevent lapses in coverage which would enable insurers to raise these issues.

Totally apart from that, the questionnaires I have completed were far more detailed than what I can recall in the more distant past.

I am keenly attuned to these issues because I do legal work for insurance companies and I have been involved in more than a few cases where a failure to disclose something led to a denial of insurance coverage. Insurance companies look for any way possible to plausibly deny claims.

Just don't be self employed. That is where you are completely screwed. Can't get health insurance, can't get disability.. and that was just with UC way before having even the first surgery..and definitely not even after 11 surgeries.

And never ever tell an employer anything. I am pretty sure my husband got "layed off" from his last job because of my medical situation. I was definitely a burden on his company's insurance. And they only had to pay for 3 surgeries. They left us high and dry and cancelled our insurance one day after they layed him off. Most companies wait until the end of the month. I had just been released from the hosptial 48hours prior and was on iv hydration at home. In fact, my poor hubby was coming home at lunch to pull the iv. Instead, that day he came home to tell me he was unemployed.

You don't even want to know what we got stuck paying on cobra for 17 months until he found a job. I knew no matter what I could not have a lapse in insurance. Let alone the fact that the cobra system was so screwed up at the time that we were "without insurance" for 5 months. MRIs were cancelled, nurses didn't show up, I was treated totally different in the emergency room.

Do not ever let your insurance lapse if you have a pre-existing condition and keep everything quiet from any employer. No matter what.

I personally believe the ADA code is useless because employers can make up any reason to fire you (or your spouse).. most states are "at will" employee states.

By the ways, I think some common sense things have been overlooked.

Employers talk to each other and if you have a resume, your next employer-to-be is going to ask your last employer about you. If the answer they get is "she seemed to be out sick a lot", you will be asked a question about whether you can be counted on to come to work. Or whether you took a lot of sick days at your last job. Missing time from work, except for my procedures and surgeries, has never been an issue for me, but for people who simply have bad days and don't go to work, these questions can be a problem. An employer's #1 concern is that the employee show up for work, and produce while at work. They do not want to employ people who just want a paycheck but cannot put in the time necessary to earn it. Unfortunately, this is reality.

Husky- you shouldn't have to lie to your employer because it is actually illegal for them to ask you about your disability.
The American's with Disabilities act explicitly states that an employer may not ask a question related to a disability except if the job requires specific tasks that you may be prevented from doing- usually related to lifting things if that is expressly part of the job. However, unless it is a core task of the job, they are not allowed to take that into account and must make reasonable accommodations.

If an interviewer or employer asks if you have a disability, they are breaking the law!

It may not occur to you that losing a colon is a disability- but it is- and can affect a life the same if not more than an outwardly visible disability.

If an employer was actively seeking out information as to whether or not you have a disability- they are heinously breaking the law, and if there was EVER a way to trace such acts to them- they would be devastated with fines and a good number of lawsuits.

I agree but most larger companies will just release the dates worked and nothing else as they don't want to get sued.

If you lost a job you had not worked there long you don't need to put them on your resume. I'm not advocating lying but if a job didn't work out I'd leave it off.

Definitely omit employers on your resume if you don't think they would help your cause. A resume is things about your life and work that you want to highlight, You are under no obligation to put down things you don't want to.

To Liz- I am so sorry for what you and your husband went through. Here is another story that relates to yours. I hope this man costs Wells Fargo dearly for their greed.

http://www.huffingtonpost.com/...zalez_n_1751461.html

I do think this kind of thing happens more often than the general public would be comfortable with. Its damn near time workers start making a stronger stand for their rights in the workplace- right to work is a misnomer- in right to work states, employers have all the power and employees none. Yet people keep attacking unions while their employers quietly pay them less than their worth, provide them less benefits they are due and picks off employees that cost them money like the ones with sick families. I'm not sure how much money goes to the top and away from the earnings of wage earners before people start claiming a better work environment.

quote:

Husky- you shouldn't have to lie to your employer because it is actually illegal for them to ask you about your disability.

Who said anything about asking about a disability? An employer can ask another employer if you showed up to do your job and they can ask you if you showed up to do your job. Those are simple questions that ask nothing about a disability.

quote:

Definitely omit employers on your resume if you don't think they would help your cause.

And then be prepared to explain those gaps in your resume with non-lies, if you can.

As stated above, most employers, when doing reference checks, aren't getting much information other than dates of employment, salary history, and the question, "Would you hire this person again". Too much litigation around more personal questions.

And group insurers don't check previous health history which is the beauty of working for a company that has group insurance...they don't disqualify based on pre-exisiting conditions.

When applying for a new job it's best not to reveal your past health history unless you feel comfortable and confident that it is not going to be used against you.

Sue

I am sorry to say that my husband's company group insurance, Premera Blue Cross Blue Shield, did have a six-month waiting period for me starting in Sept. 2011 because of my pre-existing conditions of asthma and ulcerative colitis even though we had other insurance before he started with them. They got the information from my gi and pcp during normal billing exchanges. It was very, very frustrating. We had to delay the j-pouch surgery because of it. Our medical bills not covered by insurance during the last two years? $200,000. Luckily the hospital is writing off about 80% of it. I am putting together all of our information for our local Senator to use in any arguments about the need for federal protection regarding pre-existing conditions.

I work a very physically demanding job as a Compressed Air Machinery Technician in Florida.I work in 120 plus degree temp rooms and have to do alot of heavy lifting. I notice that since i have had a jpouch the more i keep myself physically active the better i feel. I bet many others agree!! The only thing is i drink LOTS OF WATER!!!! more than any average person. I went to work even after step one with the ostomy bag because i thought to myself that the longer i stayed away from going back to my normal life the longer it would take me to recover.

Congratulations! We need a lot more water than people with a colon. I have been training for a race and I drink at least twice as much as other team members.

Spooky, you are able to horseback ride without any problem? No leakage or anything? I have been wanting to ride ever since surgery and was told I wasn't allowed to or it would ruin in the pouch. SallyJPouch

Sally - there are a number of riders who are members here and none of them have problems. I wonder if the person who told you that meant that it might not be good in the beginning but after things heal it would be fine. If you were told that it's not allowed, maybe you should get another opinion. (I can't see how horseback riding would harm a j-pouch.)

kathy

this is the first time in 2 years i have found a large number of positive reports on how good jpouch life can be. This is what people need to hear.

Hi All... I haven't been on here in a while but man this is an amazing site.. Every once in a while I check in and it really is a great outlet.. I had my j-pouch surgery in 2007, after having the ostomy for 7 months.. I didn't work until about 8 months after my surgery, but then began working full time.. At that time I was in sales.. But after my illness, I realized life was too short and I decided to pursue my dream of becoming a police officer.. I started the process in 2009 and was hired in 2011.. It is a very lengthy and tough process.. Once hired I spent 3 months at police college where I was in class every day as well as crazy fitness classes... Graduation was a feeling like no other.. I now work 12 hour shifts and drive around in a cruiser.. Fortunately, i can drive to a bathroom when needed.. most of the the time.. sometimes it can be stressful when i get the urge.. but codeine helps.. it seems to be the only thing that does for me...When I was sick and in hospital for two months before my first surgery, I would have never thought it would have been possible.. But it is.. Live everyday to the fullest and strive for your dreams..
Cheers!!
Wen

Wenwen-

I hope if I am ever in Ontario, you give me a pass if I am caught speeding in order to get to a restroom to empty my flaring J Pouch. Last year I was snagged by a New York State Trooper going 86 mph in a 65 mph zone on I-87 (sorry, don't know what that is in kph). She did not have too much compassion and did not even tell me how far ahead in the road was the next restroom.

I pled guilty but on the ticket they let you give an explanation for your behavior and I said I was incontinent due to J Pouch pouchitis flaring.

I was fined $200 by the Court and the New York Department of Motor Vehicles assessed 8 points and another $300 fine so I paid $500 total.

Next time I will just wear a diaper.

I am just curious if anyone has a "handicap parking pass" because of their sense of urgency.

Omg... That sucks.. Not a very nice officer... I would had empathy for you for sure.. And would have just given you a warning.. He probably never even heard of this disease.. I find that a big problem.. There is not enough awareness out there.. I find that unless someone has UC or has a friend or family member with it, they have no idea what it is.. It's sad..

Well.. Hopefully that doesn't happen to you again! Stay safe!

Cheers!
Wen

I am sitting on the fence for jpouch surgery. I travel a lot and am very athletic and physically active, even with my UC... I was told that having a jpouch is basically just having to go do a no.2 when you go do a no.1- and that there is no urgency- but this sounds like most of you have your lives as disrupted by the jpouch as you were with UC. I find this very confusing- isnt this a jpouch forum not a chronic pouchitis forum? (and i am serious in my confusion, not trying to be flippant at all).

quote:

I find this very confusing

Bottom line is this is a support board where people come for help with J Pouch issues. It is not a "this is what the J Pouch will be like" sharing experience. The people who come here are mostly those who need help, and not those who do not need help and have healthy J Pouches.

If you go to an AA group meeting you are not going to meet people who have healthy drinking habits. Same rationale applies here.

CTBarrister,

That's the best description I've seen in any support group!

It is wonderful that there are long time pouchers that come back and help those that need help. Plus those of us that are at the same stage of recovery etc. give each other suggestions, etc.

Thanks

Wenwen,

Your story sounds like a win win to me!

Thanks for sharing!

Badplumming
I am just over 2 months out and I do empty my pouch every time I go to the toilet, but I don't HAVE to and that is the key. Just makes sense to.

Apart from the first few days after my surgery I don't have to rush to the toilet and can hold on for hours. Even at night I wake up and if feel there is something in my pouch, I just roll over and go back to sleep and wait until the morning with no problems or leakage.
I was unlucky as I had complications, which I think were due to having originally having the single stage surgery. It is tough surgery and the period after where your new plumming is adjusting is not pleasant. But the "bottom line" is from the moment my colon was removed I wasn't sick any more. No more feeling like you are sickening for the flu all the time, being scared to go out because of needing the toilet and my sacroilitis which had virtually kept me bedridden for the last year had gone.

Surgery was the only option for me as prednisone was thinning my bones, I was alergic to azothioprine and Humeria and biologic drugs are not funded by the government here.
After 33 years of being ill, I feel so much better. My life is beginning again and although my bowel habits will never be normal I definately have no regrets.
Good luck
Caroline

May 2012 Single stage surgery
May 2012 Temp ileostomy due to complications of first sugery
Aug 2012 Take down

Yea! KiwiPoucher! Congratulations on your surgery and sharing your outcome with us!

I refused to take prednisone anymore or biologics and opted for the surgery as I'd had UC so long, it was horrible with not only UC but diverticulitis pan colon plis I was in my 50's. I know they do wonders for others but didn't see a cure coming down the line for someone my age.

Yes, age definately comes into it too. Was another deciding factor for me too. I am 48 and had UC since I was 14. With the increased risk of bowel cancer I decided that the removal of my colon was inevitable and to do it sooner rather than later was best. Let's face it, the surgery must be one of the hardest and unpleasant out there, my open total hysterectomy 3 years ago was like a tiny scratch compared to the J-Pouch.

Now I know how hard it is, am glad I didn't delay it for another 10 years when I am sure it would have been even harder.

But as I said before, all just so worth it.

KiwiPoucher,

We are similar, I am 49 years old (male) and had UC from ages 9 to 29. At the time I had surgery it was due to dysplasia being found in my colon and cancer possibly looming over my head.

Surgery was in 1992, shortly after I passed the Connecticut and New York bar examinations, and I have been a full time practicing attorney ever since with no periods of unemployment due to illness despite battling pouchitis since 1995.

It's been a great ride for me. I have been with a total of 5 law firms and went on my own for 2 years before returning to the firm I have been at since 1999 excepting the 2 year hiatus.

I have also in that 20 years gone from being a renter of two different tiny condos to the owner of a moderate sized condo and have managed to support myself for the entire period of time while paying off my law school loans as well.

Thanks- good to know. I realize this forum is disproprtionately populated by those with problem pouches.... Just so tough to get a feel for what the odds are of success going into the surgery. I'd rather keep struggling with UC than have a bad pouch because I manage to kive a very active life... But quality suffers due mostly to pain and fatigue. Best to all.

I am six months from take down and have had some complications to my j pouch. Still battling but seem to be getting better at a snail's pace. I am not back at work. Have started the process of LTD (couldn't hold my job any longer due to being out for so long) and SSI disability. Major life changes but hoping that in the future may be able to go back working part-time. Certainly, hoping for the best! One day at a time.....

Roberta

quote:

I'd rather keep struggling with UC than have a bad pouch because I manage to kive a very active life

Your attitude about surgery is not uncommon and it's true that surgery is not without risks. However, keep the following in mind:

1. The drugs you are taking to control the UC may be taking a toll on your body, and you may not need any drugs at all if J Pouch surgery is successful.

2. UC can suddenly deteriorate very quickly as it did in my case, and then you are in the situation of HAVING to have surgery and not necessarily being in optimal condition for it. You have a better chance at having a good surgical result if you are in reasonably good health and shape going into surgery.

3. If dysplasia or cancer pop up on a colonoscopy, chances are you will be told to have surgery, and this is usually the inevitable result of UC in most (but not all) cases. The general course of UC with most people is that it gets worse over time. I do have a friend who has had UC for almost 35 years, is now in his mid 50s and successfully treating the UC with 6MP. He has the exact same attitude as you but told me he will have surgery if they ever find dysplasia in his colon.

In any event good luck with whatever you decide to do.

Isn't the success rate around 90%? I don't know for sure but that it is high for such a complicated surgery.

I've had problems and wish I'd had the surgeries sooner than I did.

A lot of those on here are back to work in 6-8 weeks post take down.

TE Marie,

I think I have heard that the "success rate" is 90%, but I have never gotten an explanation from anyone as to how "success" is defined. Does that mean keeping your Pouch 10 years later? Does it mean a healthy pouch with no complications at all? Does it mean that the disease is completely eliminated with no recurrence of any disease, including the altogether different guise of pouchitis? Or is one treatable bout of pouchitis still considered "success", so long as there is no recurrence or the pouchitis is not chronic?

I have had my pouch for 20 years, and my quality of life is much better than it was with UC, but I have struggled with pouchitis for 17 years and have to take a lot of meds to keep it under reasonable control. In your mind, is that success, or failure? I know what the answer is in my mind, but for purposes of this discussion, my opinion does not count.

CT those are very good questions!
I still feel like I have UC even with my jpouch. I certainly have better control and I am not going 20 to 30 times however, I am still going at least 6 times a day (depending on what and how I eat) it could be more. I still have contractions when going. I am on steroidal suppositories every other day. I am a little over six months from take down. Right now, I can not say I this has been a successful operation. Maybe in another six months I may be better!
Here's to the future.....!

Roberta

It means quality of life. If one's quality of life is good - regardless of complications, longevity of pouch, no UC, with or without pouchitis - then the surgery is successful. Even with a colon there are 'things' that happen. Getting food poisoning with a colon would be pretty miserable but that doesn't mean that having a colon is a bad thing. It's a bump in the road.

RLC - I'm sure you've read that it can take up to a year or more for things to settle down. And things continue to adjust for the life of the pouch in my opinion. My pouch is 22 years old and I still experience changes. Hopefully your pouch settles in just fine as soon as possible. BTW - have you tried antispasmodics? I wonder if they would help.

kathy

I do know that 6 mos. to a year. I certainly am better than I was so, I believe I am getting better. From what I have read from the posts from long time j pouchers it is something that is always changing based on foods, etc. Again, what I have come to realize (along w/having UC) this wasn't surgery for a cure. It is surgery for quality of life.
Thanks for the info on antispamodics. I am going to my GI in a couple of weeks and certainly will ask about them. I met with my surgeon on Monday and talked about another operation if I can not get the anus (that is still showing ulceration) to clear up. I am not ready for another operation but I know it is available, if needed.
I just want to get back to being able to work, again.
Roberta