How can you live with Ulcerative Colitis or Chrons?

Im 26 male just got out college and joined the workforce as IT sysadmin for securities and had UC since i was 20 years old. Im working 11 hours a day at a data center and very hard to keep up with the fast pace and busy environment. I know if I take days off to see a doctor, I will eventually get fired from being sick. Since unhealthy people are considered a threat to a company.

I am constantly in abdominal pain, dizzy, lost, cant breath,chronically fatigued to the maximum, brain cant compute, think nor process properly. How do you keep a job while suffering from this miserable disease? How were you able to make it through school with this problem? There were semesters where i withdrawn entire classes because of being so sicked and unable to process any information.

I dunno what to do anymore. Seems like i have no future, everything was taken away from me, my hopes and my dreams, left with nothing. Its not because of depression that i feel this way, it is the Ulcerative Colitis that is making me feel like this, that is why im always sad, because im left with no hope. Ulcerative Colitis is killing me. sucking the life out of me.

I want to have surgery and get rid of that colon. How painful is the entire surgical removal of the colon? Will that make life better and more enjoyable?

Thanks for reading.

Surgery gave me my life back. If you feel that all medical treatments have failed you (I am not sure what you have tried), surgery is an option. Life is DEFINITELY more enjoyable without a colon!! I had been severly ill for over 2 years when I opted for surgery.

Sue

I also got pretty good at managing my UC over time, in particular knowing when and what to eat in order to minimize discomfort, and thinking ahead about bathroom stops. I am dumbstruck now at things I didn't do right, or stupid health advice I tried to that is not meant for UC sufferers (like eat several small meals throughout they day, or eat lots of fiber, or take a walk after dinner...).
But if you are not able to stop the suffering, surgery must sound pretty good. I bet if I had surgery I might regret not having done it a long time ago. One reason I haven't considered surgery is because I don't want people to know about my disease, and it would be hard to go through surgery and recovery without some explanation! Isn't that dumb?

As I've said before, I have always kept my disease secret from my employer (as well as most everyone). I can't imagine any employer who would not favor a healthy person over a sickly person in hiring, promotion, etc. Especially in small business, with health care costs affecting the premiums everyone has to pay. Do you need to go to the doctor so often, or is it the doctor making that demand? You have some control over that. I only see my doctor once every year or two. She knows better than to do a colonoscopy when I'm flaring anyway, so the only thing she can do for me is prescribe stuff.

What meds have you tried? Have you tried any of the rectal meds? If not, they can be a big help. Perhaps if you don't feel your doctor has been able to help much, maybe you could find another doctor.

unixgeek1115-i am sorry to hear you are having such a hard time! UC sucks, and it is so hard to live the way you want to and be happy when you feel bad all the time, i know, i did it for 8 long years!
I had surgery, and yes it is very painful, but it's worth it a thousand times over!
I know exactly what you mean by saying that your colon is sucking the life out of you, that is what it feels like, but when i woke up from surgery, with no colon, i felt clean. I hadnt' felt that way in years
It gave me my life back, completely and i am much happier now than i have ever been!

Surgery was the best option for me. Once they cut out that defective colon, it takes about 4 weeks before you feel better than you do now. My job is engineering and GIS related, so you need all of your energy and marbles in your head to perform that job as well as the ability to go into the field and any time. I suffered with my defective colon for a year with all of the crazy meds that didn't work and gave me osteoprosis thanks to prednisone. I was so bad that they could only remove the colon on my first surgery. I was scheduled to have the J-pouch created on Sept 25 but I had a blockage to my small intestine caused by scar tissue from my first surgery on July 30th. I was in the hospital for 18 days, and recovering now at home. A minor complication. Anyway, my j-pouch surgery has been pushed back to January, and ileostomy reversal surgery in March. Afterwards, I should be fine minus any other complications.

I would look into your medical coverage, and expect to miss about 3 to 6 months of work from all of the surgeries, and living with a temporary ileostomy for up to a year. You'll be weak for 1-2 months after each surgery, but your strength will return quickly. For me everything was worth it and I hope that next year my 2 year ordeal with UC will just be a bad memory. I felt completely normal again about 8 weeks after they removed my colon and was able to eat and drink everything again, no medicines anymore except the 2 pills I take once a month for the osteoporosis. That is much easier than the 20 pills a day I was chugging all of last year. Plus I'm not wrecking my otherwise healthy organs and my immune system is fully functional.

I think anyone who has UC and the medicines don't work after a year or two should have the surgery. Once the colon is out, it is like someone flipped a switch and your back to normal again. Surgeries and recovery suck, but I would rather go through a year of recovery than 10 to 20 years of suffering from UC and then get colon cancer at age 60 or 70 and have to go through these surgeries anyway. It was a no brainer for me.

Good Luck

Whoaaaaaa!! Timeline for sugery is different for everyone and depends on many factors.

I had a 2-step surgery and was out of the hospital in 7 days and back to work 2 weeks after that. I had the second surgery 8 weeks after the first surgery, was in the hospital 5 days and back to work 2 weeks after that. I resumed walking and hiking immediately.

Your recovery will depend upon your state of health going into surgery. Obviously if you have surgery under emergency situations you can expect a longer absence but plan at least 6 weeks off work.

Sue