change life plans (work/school, etc) because of UC?

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UP09
Regular Member


Date Joined Feb 2009
Total Posts : 22
   Posted 2/21/2009 4:09 PM (GMT -6)   
Just curious - has anyone changed plans for career or school or any other major undertaking because of UC? Are others accomodating when you are not performing at 100% because of the condition or meds?

sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 2/21/2009 4:15 PM (GMT -6)   
UC has made is super hard for me to keep a job or perform a job at my 100% that I used to. It makes it hard in mornings a lot too to get there on time. I wish I could find a real stay at home job.
Kara, 21F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI is currently trying to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again. Hope it works...if it doesn't.. I go on Imuran and am on pred longer. *crosses fingers*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day Antibiotic-Amoxyclln
I am so sick of this disease!
 
 


Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 2/21/2009 4:46 PM (GMT -6)   
I work for a fairly large company that is exremely understanding and very professional.  I have been there for about 3 years every since I got out of college.  Ever since my symptoms started back in August of '08, they have been exremely understanding and supportive.  I have a lot of freedom to do as i wish at work (go to the loo, doctor, home, etc...). 
 
The only thing that really sucks and it happened yesterday is long meetings that invove very important co-workers or clients.  It's kind of hard to just get up during a meeting to go to the bathroom and it seems my symptoms start to come about only during important meetings (must be stress).
 
But other then that my employer has been exrememly awesome about my illness. I'm actually going on a performance incentive trip to mexico in March and my boss told me that i better call the resort to make sure they have heinekens (really the only beer i can drink becuase of low gluten).
Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Daily Green Tea, de-shelled sunflower seeds & spinach and 1 Multi Vitamin a day
Metamucil - 1/2 tablespoon daily


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 2/21/2009 5:05 PM (GMT -6)   

In the past 6 weeks, I have missed 10 days of work. I am a high school teacher. My boss is very supportive and understanding, but I feel very guilty about missing so much work. Overall this school year, I have missed 21 days. Something will give soon because I can't keep living like this.

 

:(


Jackie, 43
Pancolitis, DX October 06

Lexapro, Colazal 3x3, Synthroid, Protonix, 6MP (100 mg)
Severely Anemic
Prednisone 20mg, Iron, Vitamin D
Surgery almost certain


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16718
   Posted 2/21/2009 5:19 PM (GMT -6)   

I was planning on going back to school but I don't know if I can handle the drive and classes with my urgency. Some days I am okay, others I am in bad shape. I have been feeling good lately - maybe I can get back on track with my plans smilewinkgrin  


Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 2/21/2009 5:59 PM (GMT -6)   
I was nearing promotion at the end of a management training course, and unfortunately have had to come off it. I have also been off work for nearly a month. Thankfully my managers are incredibly supportive and think its more important I get better than anything else.
 
I am intending on going back on it once I feel better but it really depends on how things pan out, as I am due to go back into hospital next week.
22 year old female, from the UK
 
Diagnosed with Ulcerative Proctitis Jan '08
Hospitalised Jan '09 for IV Hydrocortisone steroids - had no effect!
 
Currently taking daily: 9 x 400mg Asacol tablets, plus Fybogel fibre supplement and vitamin tablet.


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 2/21/2009 6:09 PM (GMT -6)   
I took this semester off from college because my GI was talkin about remicade and I didn't want to have the stress of running my company, remicade, college and UC. Now that I'm doing so much better I wish I would have went. Oh well..... I took 20 years off before... I guess I can miss a semester. lol
 
38 yr old male, NE Ohio, diagnosed Aug 2008, but been with symptom since Nov 2007
30 mg pred, 9 balsalazide, rowesa nightly, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera tabs
Following gluten free diet as well as spinach/sunflower regime
**down to 25 mg of pred 12/25/08 **down to 20mg of pred 1/7/09**down to 17.5 mg 1/22/09
**down to 15 mg of pred 2/3/08**down to 12.5 mg of pred 2/13/09
MED CHANGE: 1/13/09-- 4 Lialda, 2 Pamine Forte, 1 Florajen3 probiotic, 2 Aloe Vera tabs, Rowesa every other night, 20 mg of Pred, Lomotil as needed, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol
 
 
 
 
 
 
 
 
 
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/21/2009 6:30 PM (GMT -6)   
no, no- don't! I find when you alter "life" plans due to UC, you tend to worsen. So much of it is mental. I have missed quite a bit of work from time to time, due to flaring badly & being hospitalized. I have also pooped my pants on the way to work, & had to make a bathroom stop en route also- sometimes 2! This is a 15-20 minute drive, mind you. I work at a doctor's office, so they are about as understanding as they can possibly be. I've had to jump up & run to the toilet, many many times. My social life has suffered- for awhile, I was too fearful of any car trip to deal with going out at all, unless I absolutely had to. I wore diapers for a bit, which made a HUGE difference- just knowing I was protected basically stopped any urges- I have never once "gone" in the diapers. I always thought that for myself, making drastic life changes due to UC wuld be too much like giving in, like the UC had "won". And if it came to that, off to the surgeon I'd happily go. Obviously if you're in & out of the hospital, or extremely ill, working is not an option. But it's temporary... to truly change one of your life plans is so sad. And so what if you have an accident- it's not really that big a deal in the scheme of things. You clean yourself up, change your clothes if need be, & continue on your day.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 2/21/2009 7:27 PM (GMT -6)   
Absolutely not. I was diagnosed in high school and I just pushed through it. It was really hard being 16 and dealing with a disease (though it was a moderate flare) but I didn't want to let it defeat me. And it didn't. I was able to graduate high school in the top 15% of my class. Like somebody on here has the quote "I have UC, it doesn't have me!"
Sam(antha)
20 year old college student diagnosed with ulcerative colitis at 16
Remission since January/April 2006
400mg Asacol 2x, 10mg Elavil, 75mg Effexor XR for GAD

"Life is what happens when you are busy making other plans"
John Lennon


buckeyeinchicago
Regular Member


Date Joined Feb 2009
Total Posts : 40
   Posted 2/21/2009 7:38 PM (GMT -6)   
I am a teacher also and have a hard time with the fear of having to leave my 2nd graders to rush off to the bathroom. Luckily I have an amazing co worker next door who when she needs to covers both classes. It's very scary though but I can't let it take over my job. In college I had a lot of anxiety about tests, especially timed ones so I ended up going to the office of disability services where I could take the tests in their office and not be timed. THat way if i had to go to the bathroom, it was right there and I wasn't worried about it. IT HELPED A LOT! In high school I do remember having a math teacher who did not like the fact that I missed his test because I couldn't get out of the bathroom. He was not compassionate at all and gave me a hard time. I still got through it and know that when I am in remission I make the most out of life and try to get through it one day at a time when I'm in a flare. Deep down I know that I can't be in a flare for forever and it will get better. Good luck.
Diagnosed when 13 and am now 25. Currently taking 100mg of 6mp, 60 mg of prednisone and 12 pills of asacol a day


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 2/21/2009 7:50 PM (GMT -6)   
I sometimes consider changing my job. But I feel like my job is very different. I work in child care, and where I am at right now, it's just me in the classroom, no real flexibility. My job also relies on Teacher/ child ratio. My class is a 1/12 ratio. We are short staffed due to the economy, and it's kinda hard to relieve a teacher constantly. When I was very sick, I ended up getting temporary disability because it's not good for a class of 3 year old's to have a teacher constantly step out. Of course right now I'm fine and in remission, but when my remission is not there is where I consider the change.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1916
   Posted 2/21/2009 8:05 PM (GMT -6)   
This is my first time on the website. It has been very helpful to read about other's stories about UC. Yes, the thought enters my mind that I need an easier job. I have to get up in front of people. I do teaching and lecturing and it can be very embarassing if you have to run out of a class several times. Also, it is hard to concentrate when you are in that situation. I also have to pass by others at the office before going to the bathroom and I find it very embarassing. I have recently been asked if I want to take on more responsibilities at work with a small increase/promotion. Sometimes it is easier to stick with what you know as another situation may be more difficult. This is what I tell myself. Good luck to everyone out there. God bless.

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 2/21/2009 8:25 PM (GMT -6)   

Yes, I have. I would have gone to a different college--one that was better academically but far from home and would have cost a lot of money--if I hadn't gotten UC. It seemed to stupid to take out loans when I'd have to worry about medical bills for the rest of my life. I hate my current college, but it's cheap and not too far from home.

I wanted to major in international relations, but I decided against that since it'd be a lot of traveling. Then when I switched to a psychology major, I was thinking of going to grad school for a PhD. But I've decided not to do that either since getting a PhD takes a long time and is very stressful, and I know that some of my symptoms are associated with stress. I'm not sure what I'm going to do now. It sucks.

I agree that we shouldn't let UC rule our lives, but we also need to be realistic about it.

 


Female, Age 20 (formerly ComedyDork)
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (6 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3
 


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 2/21/2009 8:29 PM (GMT -6)   
It seems like a lot of us are either teachers or in child care. I don't understand why, but we are haha. I work in a Private Pre-K room that also depends on teacher/student ratio. 1 to every 14 kids.. 4/5 yr olds. It's really tough having to wait on someone to relieve me if I absolutely have to go to the bathroom. I wish there were an easier way to do what I love.
Kara, 21F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI is currently trying to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again. Hope it works...if it doesn't.. I go on Imuran and am on pred longer. *crosses fingers*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day Antibiotic-Amoxyclln
I am so sick of this disease!
 
 


UP09
Regular Member


Date Joined Feb 2009
Total Posts : 22
   Posted 2/21/2009 10:00 PM (GMT -6)   
Not planning any changes right now. I'm a non-traditional student in graduate school. Just don't know if the commute (130 miles round trip) plus the course work and clinic are worth continuing past this semester. I have a year to go (including summer) before completing the program.

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 2/22/2009 3:06 AM (GMT -6)   
The only person who wasn't supportive of my UC was my previous boss. I remember when a co-worker was sick, and we had a deadline to make. My co-worker was expected to meet the deadline, sick or not. I really felt sorry for her. When I got my last flareup and asked for some time off, my boss kept calling me on the phone and badgering me for hours about it. It didn't matter that I had met all my deadlines. I decided then and there to find another job.

I'm now working from home. It's great.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 2/22/2009 10:23 AM (GMT -6)   
I often think about people in jobs that could not be done with this disease...and always thought one of them was teaching! Bless you. I guess you can't struggle through the day like I do sometimes but instead have to take it off when you're flaring. That must be very stressful.

I became ill in my last year of law school and stayed with the employer I had at that time when I graduated. I needed two weeks off at first, and so they knew about it. One of the other senior lawyers had UC too. They were not good to me, I think they didn't want another unhealthy lawyer in their small legal deparment.

I have never since let an empoyer know that I have UC and have been able to manage. I don't think I've ever taken a day off for this, but I've been late to work a lot. I've had some pretty miserable days and my boss can tell sometimes I'm not feeling well because she is very perceptive, but she doesn't know it's usually that same thing that's bothering me. She knows that I learned I can't eat wheat, she probably just attributes it to food sensitivities. Fortunately, I am not actually in the office very much so can usually do what I need to do, wherever I am. And they are also thinking of letting me telecommute because we have run out of office space....that would be SO great!!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. Doing OK, but still have some bad days. 


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 2/22/2009 10:42 AM (GMT -6)   
Eva Lou said...
no, no- don't! I find when you alter "life" plans due to UC, you tend to worsen. So much of it is mental.
 I would agree to a certain extent, but I still think each person has to be realistic to their situation - for example being a management trainee meant I had a lot of extra responsibilities put on me, and some days I found just a normal day at work (with no extra stresses etc) really hard ,and I would end up really tired, pale, headachey etc etc. And it was when this got really frequent that I decided I had to cut back on the amount of work I was doing - at least until I'm in remission, as I was making myself feel worse by pushing myself more than I could physically cope with.
I do agree though that if your mental state about the illness is bad then it can be so easy to 'give up'.


22 year old female, from the UK
 
Diagnosed with Ulcerative Proctitis Jan '08
Hospitalised Jan '09 for IV Hydrocortisone - had no effect!
Going into hospital Fri 27th Feb for IV steroids etc
 
Currently taking daily: 9 x 400mg Asacol tablets, plus Fybogel fibre supplement and vitamin tablet.


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 2/22/2009 11:00 AM (GMT -6)   
subdued said...
The only person who wasn't supportive of my UC was my previous boss. I remember when a co-worker was sick, and we had a deadline to make. My co-worker was expected to meet the deadline, sick or not. I really felt sorry for her. When I got my last flareup and asked for some time off, my boss kept calling me on the phone and badgering me for hours about it. It didn't matter that I had met all my deadlines. I decided then and there to find another job.

I'm now working from home. It's great.




What do you do from home if you don't mind me asking... I've tried finding legit stuff...it's tough.
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI is currently trying to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again. Hope it works...if it doesn't.. I go on Imuran and am on pred longer. *crosses fingers*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day Antibiotic-Amoxyclln
I am so sick of this disease!
 
 


JM21204
Regular Member


Date Joined Dec 2008
Total Posts : 254
   Posted 2/22/2009 11:15 AM (GMT -6)   
I haven't made any life changes so far. It's been a little over 2 years since diagnosed. I travel every week for work (am a Director for a sofware company), and so far I haven't had any accidents either on the plane or at customers. My boss and most of my direct reports know and have all been very understanding - but like I said except for the very first hospitalization/diagnosis, I haven't missed a day of work. They just know I go to the dr. more than most. Also, when I am flaring, 80%+ of the volume for lack of a better word, is first thing in the morning. So I just get up an hour earlier and try to get it out of the way. Otherwise, it's always knowing where the closest restroom is. I would also speculate that my team knows when I'm on prednisone as I can be a little "edgier" LOL.
34 yr old female
Diagnosed with Pancolitis in 1/2007
Baby due 3/2009
Meds:1600 mg Asacol a day, Ferrex, Pre-Natal Vitamins, Lovenox, on and off Prednisone (40 mg then taper)
 


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1916
   Posted 2/22/2009 12:09 PM (GMT -6)   
Congrats on the baby! Best of luck to you!

Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 2/22/2009 1:20 PM (GMT -6)   
I wouldn't let UC control my future although at times it tried. I finished 4 years undergrad, then 4 years professional school, went through 4 different national board exams all with UC. It was tough, but you just take one day at a time and push forward.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/22/2009 1:36 PM (GMT -6)   
UC was taking control of many aspects of my life no matter how hard I tried to make it through. There were just some occassions that it was too painful to follow through with my responsibilities. I work out of town in my client's homes, and I cannot tell you how difficult it was to concentrate on my sessions b/c of the pain I was in. It also made it difficult to hold my one full-time job, two part-time jobs, grad classes, home responsibilities and my Mommy duties. So, I knew something had to give and I refuse to change my life and suffer in silence. I took control and nixed the UC. : ) It was just compromising too much of my life and I found that completely unacceptable. Also, I had horrible side effects the prednisone and Remicade, so I also was dealing with open wounds and staph infections (one being MRSA).

So, it is my belief that once there are no longer any medications that work and your life is just not much of al life at all, surgery may be a positive option. Since my surgery I have felt amazing...the UC is gone! I have had some adjustments to the surgery pain and an ileostomy is an adjustment no matter how much you prepare, but in comparision to my life with UC it is already much improved and I'm just hanging out on the sofa and in bed waiting on the healing process. : )

I'm seriously not trying to push anyone into surgery, I just hate the thought of losing your life and things you love due to a disease. It's so sad and I do understand the feeling of hopelessness. I was broken hearted each time a treatment method failed. Surgery is a very big decision, and I haven't regretted it once.

I'm glad the most of you are able to control both your UC and your life!!! I think that is WONDERFUL!!!
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 2/22/2009 3:05 PM (GMT -6)   
sweetmelody said...

What do you do from home if you don't mind me asking... I've tried finding legit stuff...it's tough.


I'm a developer/programmer. Even when I worked at the office, I didn't see most of the people I worked with. We usually use e-mails, IMs, and the phone to communicate.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/22/2009 4:48 PM (GMT -6)   
and for what it's worth, I feel opting for surgery is most definitely NOT giving in to UC- if anything, it's the opposite, kicking it to the curb once & for all! If you get to the point where you find yourself HAVING to change your daily schedule, perhaps look into another career path, then opting for surgery is a pretty sensible option. I guess it's a mixed bag- some on here have made changes, some haven't, & both parties come from a wide variety of professional arenas. There's no real right answer to this one- it's all about how much you are willing to compromise due to your UC. Personally, I'm not willing to compromise a thing- yeah ok, I'll pass on the occasional night out or whatever if I'm not up to it, but anything more & I would have to think long & hard (again) about surgery. And Robin- I'm so happy that you are happy! It's just great!!! You "won" this battle, for sure.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 

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