How can you live with Ulcerative Colitis or Chrons?

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New Member

Date Joined Aug 2008
Total Posts : 4
   Posted 8/26/2008 9:13 AM (GMT -6)   
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 There were semesters where i withdrawn entire classes because of being so sicked and unable to process any information.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.

Regular Member

Date Joined Apr 2007
Total Posts : 385
   Posted 8/26/2008 9:24 AM (GMT -6)   
So sorry to hear that you're having such a difficult time with your UC. What drugs are you taking? Maybe you need a med adjustment or something added to help you feel better.
Breast Cancer at 37; bilateral mastectomy with reconstruction.
Colon resection 2004; Sub-Total colectomy September 2007 for colonic inertia - didn't work.
Son with UC; taking Asacol and 6MP with Prednisone and Rowasa added during flareups. Recently diagnosed with ankylosing spondylitis - now on Humira. Canasa now added due to UP.
Husband with ankylosing spondylitis and psoriatic arthritis.

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 8/26/2008 9:25 AM (GMT -6)   
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.

dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Veteran Member

Date Joined Aug 2007
Total Posts : 2204
   Posted 8/26/2008 9:29 AM (GMT -6)   
For me, it helped to find a job that was less stressful with an employer who was understanding of my situation. Just because you work in IT, doesn't mean you have to work 11 hour days for cutthroat companies.

Once I found that less stressful situation, I just kept plugging along while spending all of my free time researching all forms of treatment for UC and working my way through a lot of trial and error. It wasn't a quick fix, but I was able to rebuild my health to the point UC is no longer an issue for me, nor does it interfere with my day to day activities or my work. With time, you can learn how to manage your UC the same way diabetics manage their condition.

I encourage you to educate yourself - not just on drugs and surgery - but on alternative treatments, dietary modifications and lifestyle changes that will support your effort to heal and return to a more normal life.
Diagnosed with ulcerative colitis spring 1999.
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.

Veteran Member

Date Joined Mar 2008
Total Posts : 2855
   Posted 8/26/2008 6:52 PM (GMT -6)   
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.
49 year old female, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 
Currently tapering off presnisone from lingering flare;
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, etc. diet which resolved flare. Also Replete probiotic, DGL (licorice root, slippery elm), Permeability Factors. Slow-release iron and B-12 shots for severe anemia.

Regular Member

Date Joined Jun 2008
Total Posts : 45
   Posted 8/26/2008 7:00 PM (GMT -6)   
Definitely look for another job--there really, truly are friendly, understanding workplaces. It is NEVER worth it to be so unhappy at a job.
Gale--New York Diagnosed with UC 6/9/08
On Asacol 4 pills 3x/day
Iron supplement, fish oil, magnesium, caltrate D, cerefolin NAC,
probiotics, alpha lipoic acid.

Regular Member

Date Joined Oct 2007
Total Posts : 348
   Posted 8/26/2008 7:07 PM (GMT -6)   
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.
South of Boston, Ma
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema once a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin 5000mcg, Fibercon.

Regular Member

Date Joined Mar 2008
Total Posts : 212
   Posted 8/26/2008 7:12 PM (GMT -6)   
I work in IT too. There are good employers out there and of course bad ones. There is no reason you should have to put in such long days. Betcha big money that a lot of your UC issues are related to job stress. Maybe it's time to move on. I am an applications developer and my schedule is pretty flexible and I get to telecommute a day a week (more often if needed).

An employers most valuable assets are it's employees. It sounds like they don't value their employees very much. Even if you didn't have UC, I'd suggest it's time to find a new job.
Age: 48
location: Seattle, Wa
currently in small flare, tail end of colon
Diagnosed with UC in June 2006
Medications: Asacol 3 pills 3 x/day, Cortifoam at bedtime, Canansa in the morning
No. of colonoscopies: 1
Originally diagnosed with moderate UC, pancolitis

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 8/26/2008 8:20 PM (GMT -6)   
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!

Veteran Member

Date Joined Mar 2008
Total Posts : 1766
   Posted 8/26/2008 9:30 PM (GMT -6)   
Hi, I'm sorry you're feeling so badly. Working 11 hours is a lot--do you HAVE to work that much? What meds are you on/have taken? If you really feel that UC is sucking the life out of you, then you probably should look into surgery.
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3rd infusion 07/08), 2.4 g Lialda, 1 Forvia, 6 Colazal/day
*Step 1--09/08

Regular Member

Date Joined Feb 2008
Total Posts : 79
   Posted 8/28/2008 1:27 PM (GMT -6)   
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
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily iron pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
Off all meds including iron pills except Actonel and feel normal again
9/25/2008 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"

New Member

Date Joined May 2007
Total Posts : 16
   Posted 8/28/2008 2:08 PM (GMT -6)   
I work in IT as a supervisor. Believe me you are lucky to have the job you have. imagine a job where you are out in the field trying to deal with this. For me talking with my employer helped. they understood what I was going through. Actually some have come to me about the disease because they believe they might have it. Some did.

it's something you will have to learn to deal with.

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 8/28/2008 2:11 PM (GMT -6)   
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.

dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Veteran Member

Date Joined Mar 2007
Total Posts : 679
   Posted 8/28/2008 3:00 PM (GMT -6)   
try to exhaust all your options before, exercise and rest "may" work for you as it did for me. Consider seeing a nutritionist and possibly going on a candida elimination diet.

Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.

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