Living life??

How about being a trial attorney for 23 years with a pouch looking like this (see the attached pic) or worse.  And I am still doing it.

Sonja6,

 

If you go to a good social security disability attorney you might be able to make that happen but you need medical back up.  If you are working and working and not going to your doctor and telling him/her you can't work, SSD will never happen for you.  Ultimately I think that is the route of a lot of people.  I manage to be able to treat my symptoms with antiboiotics, taken continuously for 20 plus years.  Some people are afraid to do this.  I haven't had the choice because I want to work and I love my job.  Plus i am good at it.  So I just keep plugging.  You sound like you might be reaching the end of the line and maybe you need to switch jobs or else start setting up SSD if you are unable to.  Good luck.

I don't want to have to go on disability. I want to be able to work. But it really seems like the harder I push myself the sicker I get. And the worry and stress that goes along with going back to school is also a terrifying. Who knows how my body would react to that? I've had chronic pouchitis since day 1. I give major props to anyone that can maintain a sressful type of job. I know I couldn't do it. I have been with my current company for 8 years and I do love it. But life isn't all about work. And I'm giving it all the energy I have. I took care of my husband while he lost his battle to cancer at 23 years old. And that really changes your outlook on life.

I have also been continuously on antibiotics for the past 17 years. Completely changed my diet and exercise habits. Unfortunately my GI of 12 years just retired and have been left in a position where the new GI's have been no help. Getting ready to be sent to UW. But it's costly!!! Even with insurance that I pay through the nose for.

I feel for you. Retail sucks (sorry). Its such a thankless job. And being management is even tougher. So stressful. I did it for a long time before I was Dx'ed with UC. Sorry I don't have any words of wisdom for you. My one management position I was able to go to the corporate office and acquired an office position. Is that a possibilty where you work? 

Yes, I second trying for an office position of some kind.  I am lucky to travel about once a month, but work in my home office for a great international technology company, managing US sales.  If it weren't for the great company/people/upper management and my ability to be at home and within striking distance of the bathroom, not sure what I would have done for the past five years that I've had difficulties.  My goal has always been to go way above and beyond for the company that has treated me so well -- and since I love what I do, I'm a workaholic.  Only after an advancement could I see myself being on my feet all day, but even feeling great, not sure I could do what you do!

I really wish our corporate offices we're closer. I live in Washington state and all corporate positions are now located in Atlanta Georgia. Each store only has 1 desk position with is our associate relations type of position. Which I would love to do and made it clear to Regional and District management that I want that job! But unfortunately those positions are next to impossible to get. There usually held by our associates with around 20 years with the company and they stay till they retire. The amazingness of my management team is really what's kept me there for so long. There so understanding and supportive.  But it's such a horrible feeling to be a closing manager and know you can't be there and your letting people down. In the last week I've been on the emergency room and missed multiple days because of the unbearable pain. I'm to the point now where it hurts to breath, I can't stand up strait at all, I can't lift anything, I can't even pull a empty cart. I basically slowly unlock doors for 8 hours.  It's super lame.

I have no time to read all the other's responses (sure they are very informative and interesting); I'll tell you my life: the base for me to live a normal life, is food. I eat PLENTY of calories but good calories, which is saturated fats (extravirgin oil, high quality butter), plenty of proteins (I ate TONS of eggs, perhaps in the last year, 1000 eggs) my cholesterol levels are perfect (better than before when I had uc, and also better than when I had a pouch but follow a normal diet), plus I take 2 tablet of a high-absorption iron as I'm iron-deficient. I don't deprive myself of any food, but minimize wheat, sugars, cakes, biscuits, refined carbohydrates, tend to have fruits (not very much, the minimum) and to have a nutritious food, also take cycles of multivitamins, and I take antibiotics for sibo / low grade pouchitis which bores a bit but don't stop me. I assure you that in the past my main problem in life was UC, now, I have normal problems (at work, with people, etc) like every normal person, and am happy with this (still I prefer not to have the latter, but that's normal sometimes to have them). And sometimes I also take lactulose/metamucil (just when I feel a bit constipated) or vsl3.

When I eat bad, I feel week and I'm also fatigued. When I eat "well" I'm full of energies and am able to function really well. Also I adore my diet, my blood cholesterol levels are very good and I eat lots of calories, and always feel energies, I took 45 pounds and am happy with it (I'm not fat nor muscled, I'm just beefy in the manner I like myself)

Hi Sonja,

I am a freelance university professor...it means that I spend a lot of time running from school to school and place to place with different sanitary conditions at each place.

School bathrooms a sketchy. Sometimes you line up beside your students (and prefer to hold it rather than go while they are waiting in the next stall!) and others some idiot decides that bathrooms do not require heating in winter! Still others have no running water. (yuck)

Needless to say, I need my guts to be cooperative.

I take a chewable probiotic that works 1000xs better than any other that I have tried (may be because it is actually absorbing)... I also do chewable multi vits for energy, strength and resistance plus liquid vit B complex.

My 'school diet' is different from my weekend diet. 

When at work I stick to pure proteins (chicken, fish, soft nuts, yoghurt or hard cheese), different types of apple sauce (with different fruit combinations like blueberry or pear) and a cut up apple or banana. (I work 2 14hr days and 2 8hr days)...I also drink tons of black coffee (no sweetener) and water...no juice, no pop.

It keeps my pouch underfilled, gas low, and just enough energy to survive the day and makes emptying easy. (I have a k pouch so need a catheter to do it...makes it more complicated too).

I cannot chance 'high risk' emptying (too much gas, fiber, too liquid or thick etc) that takes more than 3 minutes...I don't have the time between classes and can't get stuck in the loo with my kids standing outside...so I limit intake.

That goes for road trips, vacations, shopping days or evenings out etc.

I know that pouchitis makes things even more complicated and less controlable but I just want to say that you can do just about any job if you are willing to sacrifice food(!). 

I can't do pizza, fast foods, junk foods, sugars, carb, salads or just about anything that I like.

It is the price that I pay for doing the job that I love...it is not easy or fun...and school cafeterias and fries call to me daily but I can't give in or I can't work.

Hope that you find a job that you love with circumstances that work for you and your pouch...I hate letting my pouch run (ruin) my life.

Sharon

My husband is a Systems Engineer, most of the time he works from home (which has helped alot).  He now travels more than in the past (mostly NYC which is close to where we live) sometimes, he has to go to the West Coast.  If he does that, he does not eat at all on the flight and no coffee.  He brings his VSL with him.  Good luck to you..sending healing cyber thoughts.

Sonja6,

 

You need to bring the pouchitis symptoms under control through whatever means necessary, and if you can't, based on what you describe, you are headed towards SSD.  It's going to have to be one or the other.  The middle ground is essentially torturing yourself physically and emotionally which is not only unacceptable but also will do irreparable damage on your personal wellbeing long term.  I think that is the big picture here.  Whether through diet, probiotics, antibiotics, Remicade, whatever, you have to bring the pouchitis symptoms under control. Good luck.

Thanks for everyone's support. I've had a clean diet for around 4 years now. No dairy no gluten low sugars high protein low greens low fruits ( except  for juicing ) probiotics antibiotics yoga medication shamanic journey work acupuncture crystal healing vitamins ect. I have a new GI now since my regular just retired. We're doing a scope next week because of the amount of bacterial overgrowth my pouch has going on right now. Plus they found something in my uterus. But they won't tell me what until the OB gets back from vacation. But I really do believe diet is key to a certain point. My body regects everything. When I had a stoma I had major issues with it. Even when I was a kid I was in a horrible car accident and had tons of hardware put into my leg, my body rejected it all. I can even wear earings without my body rejecting them. I just want to be able to enjoy life and be able to laugh with ought being dropped out of nowhere by dabilitating pain. I'm definitely not new to this. But a lifetime in chronoc pain is not something I think I can pull off. Everytime one thing is "figured out" something new pops up. And it's expensive to just try random things. I support myself 100%. It's just me. My husband passed 7 years ago and that was the most support I have ever received. My family just says your strong. You'll be fine. Well guess what I'm not and I'm sick of it.