How many of us keep a job?

How many of us keep a job?

I just lost my last good client.
My husband and my daughter have been covering for me, but I just can’t keep up.

I have a desk job, though every few months I may need to travel. I work from home 3 days a week, but I can work from home more if I am not feeling well because my job understands their obligations towards those with medical issues. There are things I need to do during normal business hours (conference into meetings, call people, talk to supervisor), but some of my work can be done at random hours when I feel better. I actually was reviewing documents for a case and researching some legal stuff today on my laptop while on the toilet *shrug*

If I were in the same job I was a year ago, I would have had to take leave because I spent a lot of time out of the office and supervising people and working long hours, and that would not be sustainable with this flare.

I have been a web designer since 1999. Started working as a consultant from home since I got sick.

I’ve been having arthralgia. My hands aren’t working right. The immunosuppressants have made me catch everything. I keep losing my voice. I have had seizures. Fell on a chef’s knife (having a seizure) and tried to cut off my thumb. That pushed me way behind. Lost clients. Potential new client came for a consultation and I couldn’t get out of the bathroom...

I have failed everything up to now. It seems to work, then doesn’t. Tired of living on rice and applesauce. I just started Humira.

I’m not even a good surgery candidate, since I scar badly and don’t heal well.

Sorry. Venting. Feeling sorry for myself.

I've been working through flares, but I have a desk job for a software company and I can work from home as needed. I write software documentation, so no clients, no travel and few meetings. We've got a number of posters in a variety of professions: a number of teachers, a hairdresser, some medical professionals (an anesthesiaoligist, a few nurses some in training, one said he was a doctor a psychologist?), college students, graphic designer, a contractor, even a semi driver posted a while back. A lot of office workers post here.

Take some disabilty time if you need it to heal and UC is becoming difficult. Fast track a couple biologics and even consider a surgery consult. Flaring with limited quality of life sucks, need to find yourway out and recover.

Don’t suffer, if you want surgery you can get it. If you do having a scarring issue that prevents you from getting a jpouch then you can still get an ostomy without an issue.

It’s not just work but it’s also your quality of life.

I’m not saying you should opt for surgery but if you keep failing medications it would be a good idea. My QOL is soooo much better and I wish I had the surgery when I was first diagnosed!

Before surgery I really struggled, always made excuses, and I felt like there was no hope for my career. Now that I had surgery, I realize I can do anything. I can take trips, go to lunches/dinners and eat like a normal person, I can work the same hours as anyone else without needing to go to the toilet all the time. On the other hand, I am an introvert and I really struggle to deal with people on the regular. Luckily I am able to work from home, not because of UC, just because I prefer it, and I am more productive at home.

I agree with Keith, take the steps necessary to ensure you live a good quality of life. I lost a lot of time to UC. I lost a lot of opportunities. Sometimes I wonder where my career would be if I hadn't spent so much time sick, but that's neither here nor there... It's gone and I could have lost a lot more time.

I'm not saying that you should have surgery but that it is an option that could improve your life if medications can't help you.

I'd suggest getting a second opinion from another GI to discuss your options, specifically one that is an IBD specialist. Maybe even a surgical consultation if that is something that you think could benefit you. Just because you have a consultation doesn't mean that you need to have surgery.

Please don't be insulted by my suggestion but have you looked at Fiverr or Upwork? Fiverr has changed over the years and they have some high paying gig (compared to the way it started). I was scrolling through WP designers at Fiverr and some gigs are going for $1,200 for 10 pages. Many of the Pro-designers there started out and built their way up to the higher paying gigs.

I hope that Humira works for you. QOL is the most important thing, it seems like you are struggling and need to get your symptoms under control. If the Humira is the correct dosing for you then you should know within 3 months that it will work for you; there are tests to measure the Humira levels in your body.

Hi Happier!, Reading your post just reminded me of how miserable life can be with UC. I suffered for almost three years with the flare from hell, and tried every therapy I could find. But, I don't think I would have been happy had I not tried all the alternatives. Didn't want to have any what-ifs. I was probably half dead when I finally made the decision to have a perm ileo. For me it's been miraculous. I agree with Keith, talk with a surgeon. No harm in talking. I had a consult with my surgeon several months before I decided to go for it.

I am a full time firefighter/Paramedic in the 8th largest FD in the nation as well as a full time real estate agent. I am also a father of 2 young children with a very supportive wife and family. I have 2 very successful careers and UC, it can be done you just have to keep a positive attitude and do what you can. This past year I have been Flaring for 8 months and it was my most productive year in real estate by far. Keep your head up don’t let this god foresaken disease win.

I lived a very full life in my 20's. Traveled a lot, learned languages, got education. Had I known that those were going to be my best days, I would have done things differently. I would've kept traveling instead of going to school and doing the responsible things. I would've focused more on having fun. Everyone says, "Your best days are ahead of you." At this rate, I highly doubt it.

The thought of surgery doesn't scare me. It's the risk of permanent complications that scare me. It could mean trading one unfulfilled way of living for another. I've read lots of positive stories about ostomates who are so happy they got surgery; and I've also read a lot of horror stories. If anything went wrong with surgery, my j-pouch, or my ostomy, it would just feed into my PTSD story about how life is out to get me and I would go crazy. I can't handle anymore trauma. Something like that would push me to suicide, honestly.

I really don't think modern medicine is ever going to cure us because curing us is not their priority -- making money is. They can't make money unless we are dependent on them and they create dependency by creating bogus medicine. Take for example Fecal Microbiota Transplants (FMT). The FDA banned it for all but treatment resistant c. diff. I have personally spoken to doctors online who have patients that are dying of c. diff but they can't jump right to FMT because they haven't tried all the other treatments yet. Our medical system is unethical and greedy. The only way a cure will happen is if some independent researchers go renegade and invent a solution, like the team working on the Crohn's MAP vaccine in the UK with independent funding. But big pharma? Forget it. They will sell us snake oil to treat symptoms but they have no interest in curing us. It's not for lack of technology or expertise, it's just screwed up human priorities. I have been around medical people for years and it's been part of my education. I know the way the system works against earnest people who really are looking for a cure. People who propose research into anything that threatens the bottom line of corporations don't get funding. I've seen it countless times.

I can walk and get out. I just can't do any of the things I really love. I can't hold a job, I can't travel, I can't eat most foods I enjoy. I can't date nor would I want to because what partner would have me. Basically my whole way of living has been destroyed and I am just coping. I don't have friendly neighbours. I live in a typical big urban city, and unlike 30 years ago all cities are the same now. All my generation is obsessed with career, money and affording housing, so they just don't have the time. And being disabled is isolating in any decade, especially when your disability involves bowel movements. Last night I was invited to a party... I couldn't go because I was exhausted and had to sleep for 3 hours in the evening. It's now 5am and I'm wide awake because I woke up with pain. I got offered a temp job today to make some money -- will I be able to go or even perform adequately? Not sure. I'll have not slept very much.

I landed my dream job last year and lost it within 3 months due to a flare. Really, there is no point anymore. My life is about suffering and isolation, and that's about it. Any meaning or purpose I invent gets wiped out by an eventual flare. The only satisfaction I sometimes get is by sharing the different treatments I've tried that people may be unaware of because maybe it will at least help them. I keep trying things and they keep failing. I'm pretty much at the bottom of the barrel now with what I can try, and I've really, really tried everything.

Last month I created a DNR (Do Not Resuscitate) order through my doctor. If I have another major flare again I'm going to refuse treatment. Can't handle anymore trauma. Euthanasia is legal here but not for UC because it can be "cured" with surgery so I'm going about it the only way I can. I think calling that a "cure" is just part of the bogus agenda of modern medicine because they can't admit their utter failure to treat this disease. "Cured" actually means you walk away with your body (and sanity) in tact, and you go back to a normal life. If they can't offer me that then I'm not interested. Ostomates aren't "cured" anymore than a soldier is "cured" when you amputate his leg after shrapnel injures him. They aren't cured, they're survivors.

Post Edited (Connor77) : 2/17/2018 6:28:46 AM (GMT-7)

Connor

I hope your FMT trial goes well and you get some improvement.
You have the right to your feelings about not wanting surgery but consider that you may be depressed (every right to be, again) an emotion that is also related to the gut. Please talk to your GI about this. I know you've tried most treatments but some people have gotten UC symptom improvement from anti-depressants (search this forum).

Your isolation (no partner, no community) is adding to your UC symptoms. Yes there are potential partners who could offer emotional support but yes it would be hard to deal with a love life which may have ups and downs of it's own. Have you thought about getting a dog or cat? (not joking). Having something/someone else to think about is beneficial.

UC can be "one day at a time" when things are at their worst. What if surgery gave you your normal life back? The numbers support that outcome.