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K
I know this question could open up a long list of how people have been impacted. I'm just curious if others have had experiences similar to mine.

Mom trained me with tough love so that, for better or worse, I never felt I had a license not to carry on normally. I aggressively pursued a career as a CPA....partly because I knew it was a background that would keep me employed due to demand and in the event I had to come and go due to health issues.

I always put myself in positions that were high demand because I was so driven. I wasn't very good at listening to my body and it always took a toll on me.

Supervisor feedback would commonly be that I was a diligent, detailed, hard worker who prepared exceptional work....but not consistently. I would be on a big project and really nail it, but then I would be exhausted due to illness and wouldn't be able to hit the next project as hard. I needed recovery time. I never shared this with employers and, honestly, I didn't realize that was what was happening. Well, I partly I didn't share because I didn't want to make excuses, it's a private illness and I was afraid I might lose my job. I was just trudging along the only way I knew how.

The other weakness I had was building work relationships. I always had preoccupation in the back of my head about managing pain and making sure I didn't waste time while I was "well" in the event I got too sick and had to be out. I always had my head down, always busy. I would be friendly enough when approached, but I am sure I looked like I was too busy to be interrupted.

I also avoided going out or eating out with coworkers bc it was too uncomfortable. I needed my lunch time as down time to rest my head and body from the constant preoccupation with work and pain. Plus it was more comfortable for me to pick throughout the day at my desk and not have to exert extra energy to go somewhere, worry about the bathroom, blah, blah, blah. I needed that time as "me" time.

It's unfortunate. I had a reputation as a good performer, but just not quite connected with people. Oh, and one time a boss told me he felt he couldn't tell what I was thinking many times. Like I wasn't being transparent or open enough. Now that I am older and wiser, I probably would have explained things to him. I just didn't even realize, myself what I was projecting to other people.

In the end, I chose to stay home with my kids and work for myself. I am very pleased I have been able to do so. I did recently take a contract job in audit for a large corporation. The people and the work were great, but it was the last nail in the coffin for my body. After the contract was up, pouchitis finally took me out. However, the interpersonal experience with coworkers was very nice this time. I pretty much had the same work approach, but felt well liked at the same time. Everyone was too darn busy to be very social, but people seemed pleased to interact with me when they stopped by. Lessons learned.....

I am back at home now and hope it stays that way. Red Face)

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mgmt10mgmt10Member
My husband has is own CPA/financial planning business and wow, it beats the crap out of him and he's a healthy guy. Kudos to you for doing such a demanding job when you were sick. It's tough no matter what job you have....some jobs seem to suck the life out of you even more though.

I was a stay home mom at the time of my UC diagnosis. My kids then were 3 and 4. That was so hard but at least I was home and close to my own bathroom. But having to run them to school and activities over the years was difficult. I cannot tell you how many accidents I had in the car because as I'm sure you know, when you have kids you in the car constantly!
mgmt10
DT Duct tape, Zip ties, and J-pouchesMember
YES! Very much so. I currently work as a environmental drilling crew. Restrooms are not normally close by, and even if they are, I wouldn't normally have access to them. Before my j-pouch, I had very little warning before I couldn't hold it in. A few accidents and a lot of close calls. Now that I have my pouch I still go more than others, which can be an issue with time sensitive jobs, 2 man crews, or even driving. The high stress doesn't help either.
DT
Jan DollarJan DollarModerator, RN, retired
Being diagnosed shortly before my 16th birthday, my entire adult life has had to cope with chronic illness. But, I was lucky, I think. My disease was in remission (other than the first month where I was hospitalized) for the most part throughout high school, college, and early career days. I was able to get through the RN program and work full time in a hospital. I chose to work nights because I liked the more casual pace, but admit there were times it was tough when I could not take a bathroom break because there was nobody to relieve me in the ICU and I could not leave the bedside. My coworkers knew I had UC, so it was no big deal if I had to run to the can. The only real relapses during that time were during my two pregnancies, but they were mild. After son #2 came, I chose to be a stay-at-home mom, and got very involved in their school, leaving nursing behind. But, that was a quality of life choice, not because of UC.

It was not until they were in 2nd and 4th grades that my final relapse leading to colectomy happened. Again, I was lucky. I had a great support network of family and friends to help hold things together during those first few months. Now, I just do casual hours as a paralegal for my husband's firm, working out the home.

Jan Smiler
Jan Dollar
vanessavyvanessavyMember
I just got let go of a contract at USA Today, I work as a Creative Director. Sort of glad, my boss was an ass but the reason pissed me off. I had been very sick for a long time with Cdiff and had just started Vanco. So the painful bathroom trips, liquid guts and everything else that comes with this horrible infection made me "look miserable". I then had an abcess grow very large in my rectal stump area (all sewn up now) and sitting was difficult and painful.

I usually ate alone because my guts are so loud I just rather sit there alone and not have to worry with every churn in my gut.

Funny how I explained I had cancer, was in the hospital and just have a lot of pain every day due to my disease. He claimed he understood (I hate when people say that). Then canned me that night. Ugh... I am honest now about my disease so if I am not happy they can see why but it is a pain in the butt to always explain things when I shouldn't have to.
vanessavy
TE MarieTE MarieMember
Kia,
I'm a CPA and CMA (certified management accountant) and worked for a big 8 firm - before they all merged etc. I worked for several other places before opening my own firm out of my home. I worked part-time for others while I built my practice up. It took me a year before I opened up my office and hired my first accountant 8 months later. All was going great. I didn't have the problems you did as I didn't have UC yet. My former employers me clients plus I was extroverted then.

I had a hysterectomy but was still having cramps. My GYN said to go to a GI. It took a year get the diagnosis. I worked 60 hour weeks during tax season and kept taking massive quantities of ibuprofen.

After the diagnosis my GI apologized for not catching it when he did the sigmoidoscopy and didn't know how he missed it. This time he'd done a colonoscopy but it was in my rectum and other places.

After a month of Asacol did absolutely nothing he made me take Prednisone. I didn't want to and he said that I didn't realize how bad a shape I was in and I had to take it. So I took it. It did help me have all kinds of energy tax season. One of my accountants would tell me I needed to slow down as I was talking in short hand. I blew up - gained 65 pounds by the time I was tapered off 6 or 7 months later. I was in denial and kept up the pace like you and didn't listen to my body. Shortly after I got fibromyalgia and that was a biggie. I sold my firm as I couldn't even work 40 hours a week and I got a nice price for it.

I worked for another firm tax seasons for a few years and then went back to my former firm. They all knew I was ill and set my own hours so the client appointments accordingly. In March of 2010 the UC flare from hell started and I barely worked much - the last day I worked was 4/20 for 1.5 hours and I have not been back yet.

My operations were 11/2/2010 and 12/29/2010 with a incisional hernia op 7/5/2011. I've had several complications and my fibromyalgia has gotten worse and stayed so. I am collecting LTDidability insurance I took out 25 years ago from the AICPA Insurance Trust and was approved for Social Security Disability Benefits as well.

I am no longer an extrovert. I can't concentrate and am seeing a therapist and taking medication for depression, anxiety and PTSD. I also have a few other health concerns. I think this is partially what comes from burning the candle at both ends for so many years.

One tip, if you are unable to work file your SSDI claim sooner than later because you have to have worked so many quarters within so many or the last so many quarters to file a claim. If your doctor agrees you are disabled then you probably are. If you are just taking time off to be a mom that is great.

I'm extending my taxes again this year as we've been in Florida the last 3 months and I'm not getting home until 4/9. I might get them done Cool
TE Marie
K KiaMember
vanessavy, I am so sorry to hear that. I've always kept my situation under wraps bc I figured it wouldn't do any good to say something, esp when you usually don't "look" like anything's wrong.

Marie, it sounds like you've been through quite an ordeal, too. I hear you on the depression/anxiety/PTSD. And this stuff most definitely can change your personality. And the demands of the profession definitely wear you down. I didn't realize what I was getting into coming out of college. I figured I was being smart by getting into a high demand, good paying career that allowed me to sit at a desk. LOL.

With my pouchitis at bay, I am doing much better but I found I am still vulnerable after eating something that didn't agree and felt like possible pouchitis. I totally lost it. I think I will need more talk therapy to walk through this stage. I previously decided with my therapist that I didn't want to look at PTSD bc it would involve working through old baggage that I thought I had under control. I knew enough not to let my head "go there" and felt I was coping OK. But I lost it when I thought pouchitis was coming back and I was reliving crap in my head that I thought I put to rest. I'm going on vacation, but when I get back I think I may address this.

I, too, am filing an extension. I am focusing on me right now. As for working, I didn't realize what was happening to me that last six months. Had I realized, I may have filed for disability. I really thought a lot of it was in my head, as messed up as that sounds. I definitely could not have working during this period. If I HAD to do it now, I probably could, but I think it would be a mistake. I am still building back strength and stamina and sleeping well after many sleepless years. Fortunately, I do have the luxury of taking the time as my home business is providing well enough.

By the way, I worked for Coopers before they merged with Price Waterhouse. Which one did you work for?
K
vanessavyvanessavyMember
It sucks but I am the bread winner in this marriage so I have to work. My husband's job burned down and is not looking for work once he relocated here. So either be homeless and lose health insurance with no money or suck it up and hope it gets better and land another job. I had an interview yesterday, was running a fever, covered it up with a fake smile and lipstick. Then went to Hopkins after to the ER and spent 16 hours there getting things taken care of. Tomorow I am going to swallow a pain killer and go to an interview at a place I really want to work for and I can't let my disease control this too. I wouldn't have to start either job until Tues so in my mind it give me time to have my packed wound heal. I was told about a week and it should be closed up.

I do a lot of acting though with the disease and pain. Doctors appointments are "4 day weekend trips". I try to mask as much as possible. I have to get scopes all the time so usually I work 3 hours extra a day to make up hours/time for the missed day.

When this boss said I looked miserable and my body language told him I didn't want to be there. I wanted to stand up and pull my shirt up and show all my scars and say "Oh yea? does my body language show you this?"

Anyway, I started a business that is slowly doing well but not enough to live off of. my goal is to have this and another I started take off in a year so I can be my own boss then hire people like me that needs jobs and have horrible bosses that don't understand.
vanessavy
Holly MHolly MMember
I have worked basically at the same place for over 20 years. took a few years off here and there when my younger son was born with multiple birth defects. Went back in 2008 full time (same company) was doing great there, had my j-pouch surgery came back to new management. They were awful, got on my case the day ofter being out for 4months and didn't let up. After being beat down emotionally I gave in and left. Of course 3 months later I am really upset with myself for giving into them. But we all know how traumatic this surgery can be emotionally as well as physically. thankfully my husband is the major bread winner , I am actively looking for another job now and def. want to work somewhere my hard work and efforts will pay off. Wow that felt great to write out loud, thanks for starting this tread.
Holly M
ElmerFuddElmerFuddMember
Kia, good question to ask of people, and many differing answers. I was diagnosed with UC at age 12, but really only had a flare up once during my first couple years working full time. I was single, and teaching, and it didn't really get bad until the summer. I remember being SO sick that I talked to my folks who were an hour away, and my Mom asked if I needed them to come get me. I'm pretty independent but was extremely happy for the help. I got into see a doctor and was put back on oral meds (I was only using hydrocortisone suppositories) and got better pretty quicky. Of course, I lost about 20 pounds in the process but was certainly helped out by being home with my folks.

After that, I went back to college and then got a job doing IT consulting. Things were really pretty good for another 8-10 years, before the flare the ended it all for me - quite unexpectedly. The place I was working at the time had short and long term disability benefits, and I had a very understanding manager at the time. I was able to return when I was healthy and have a sit-down IT job that seems pretty darn normal now.

Steve
ElmerFudd
aka KNKLHEADaka KNKLHEADMember
Enjoy reading from everyone. I, too, am very lucky that I work from home, with occasionally business trips across the country.

I am sales manager for a top global PC manufacturer with a very small and efficient footprint here in the US. My wife will complain because I work 50+ hours a week at a job that I love, and working from home the majority of the time is perfect for trying to nail down health issues related to my pouch.

When I travel we often have meetings that go from breakfast, all-day, quick half-hour to get to team dinners and nightlife. Last trip I ordered a nice dinner only to excuse myself because of pain. My company is absolutely fantastic and extremely understanding. While I miss a dinner or two here or there, I am optimistic that they feel they get 120% from me, day-in, day-out and nights and weekends. I truly appreciate their understanding. I don't want to be known as the "guy who beat cancer," I want to be known as a very good employee.

People that know I have issues ask, how are you doing? I have started telling them, "I have good days and great days!"
aka KNKLHEAD
CTBarristerCTBarristerMember
I have worked as a trial attorney for 20 years successfully without much loss of time from work due to IBD, and the impacts of IBD on me are far more subtle than what has been discussed in this thread. A typical example would be what happened yesterday. I attended and took a deposition at an office about 1.5 hours drive from where I work, accompanied by a representative of an insurance company I do work for. After the deposition, I suggested to the rep that we meet for dinner at a restaurant about 30 minutes away and on the way back home for both of us.

As I left the office where the deposition occurred, I felt a slight urge to use the bathroom, but I didn't since I figured I did not have a long drive to get to the restaurant we were meeting at.

Well, I got caught in I-95 holiday traffic which was building even at that early hour, and what is normally a 30 minute drive took well over an hour. On the drive, I suddenly had an overwhelming amount of gas (maybe from the lunchtime probiotic drink I consumed), and a strong urge to go. I pulled into the restaurant parking lot about 1 hour and 15 minutes later, and the insurance company rep is ironically right behind me in her car, so that we pull in and park and get out of our cars at the time. She is laughing at the irony of pulling in at the same time, but I am dying from the unrelenting gas and urge to go to the bathroom.

So we enter the restaurant and I quickly asked for a table for 2, threw my wool overcoat down on a chair, politely excused myself, and wearing my suit and tie, I sprinted through the server area of the restaurant to get to the restroom. I knew where the restroom was because I have been to this restaurant many times before.

I had to get up 2 other times during our long dinner, mainly due to all the gas I had.

Those are the kind of issues I have but they are certainly survivable types of things and minor irritants in the great scheme of things.

I am very fortunate to be able to work and do what I do. My main concern is not the present but the future and how I will hold up over time as I age.
CTBarrister
Last edited by CTBarrister
skn69skn69Member
Kia,
I was born sick and grew up this way...alternting school/hospital/school and then more of the same...I had to organise my scolarity around this thing and then my 1st marriage...I tried to organise an 'at home business' with my Mom when I was a teen because 'they' all said that I would never be able to go to school, work, university etc...Once I had my k pouch done and the wrinkles ironed out I sort of went full speed ahead...left the country, went to university here in Paris, worked 3 jobs to pay for it etc (kind of felt like I was making up for lost time) and then finally got sick again...I am a self employeed professor at MBA schools and business coach, my colleagues like me, enjoy my company but cannot for the life of them understand why I systematically refuse all invites out to meals...I will do coffee in the canteen but not a meal (I rarely eat out unless with hubby and a car) and do not trust my pouch to behave itself in public facilities...I have never missed a day's work, I can't seem to cancel a class...I will go sick, obstructed, fevered, torsioned, twisted and herniated (not an easy feat when you figure that I don't drive here and have to walk miles to/from public transport...1.5hrs total trip each way...I hang onto my job/profession like to a life raft...even if I nearly lost it all, I still fight for it...yes, clothes and make up can hide a multitude of sins, ills and diseases (went to work with an indwelling tube and leg bag for 1 semester..no one knew)...I can't complain...none of my colleagues know anything about my condition...just that I am 'somewhat antisocial outside of school'...the price you have to pay to survive I guess...
This disease effected my personal life, dating life, love life, professional life and family life...but I am still alive and that's not half bad...we are the living proof of Darwin's theory of evolution...we are survivors.
Thanks for the thread
Sharon
skn69
TE MarieTE MarieMember
Kia, I worked at Coopers & Lybrand too so I know just how talented your are Wink I think we were well trained as everywhere I went afterwards people thought I was a rocket scientist and I thought a good share of them were slow or inefficient. Some were down right clueless in the problem solving department. They are all probably still working...

The PTSD thing surprised me. During my first session my therapist went through a checklist sorts interview with me. At the end she diagnosed me with PTSD, depression and anxiety. When we started to work on PTSD I discovered I had to go back to the earliest trauma in my life. It wasn't the trauma of being ill all of these years or of the surgeries and recovery. These traumas just were the tip of the iceberg. I was so strong and confident for 50 years because I kept stuffing everything deep down inside. Unfortunately it goes back to when I was a little girl. The therapy is hard work but amazing at the same time. I'm amazed at the things I'm remembering. I was already taking antidepressants so it wasn't until a few weeks into therapy that she said, "you are very depressed aren't you?". We've been doing mostly talk therapy to help my depression but are working on both.

I have not gone through all of this to give up now.
TE Marie
J JillMMember
I worked in Human Resources and was fortunate to be able to pick companies that I felt would be supportive. I had some fabulous bosses who were 100% behind me. So I always had a good job and had a good schedule. However, if not for UC, I would have pursued a Directorship and would have been making a lot more money.

I was always very open about my situation, shared probably more than some people were comfortable with, and just accepted that this is how I was and everyone else would have to accept it too. Went through all of my surgeries as a young professional. Two different companies along the way.

As it is, I was happy to stay at the level I was, because once my kiddos came I chose to be home with them. Now that they are both in school full time, I decided not to go back to the corporate world and will be working as a Disney Travel agent from home.
J

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