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

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Ulcerative Colitis
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Posted 2/22/2009 9:57 PM (GMT 0)
Thanks Eva Lou! I was beginning to make major compromises and it just wasn't suiting with me. I go 100mph and the UC was seriously slowing me down!!! Just the fatigue is caused made it difficult to function then once you added the pain and constant flare on top of that it was just ridiculous!

Now the only thing that really sucks is having to lay around and heal. I have over done it and hurt pretty bad today, so that's irritating. I'm a shmuck for picking up my son too much (from the floor to the sofa mostly) but still I've just done too much. All I want to do is make the occassional dinner...lift my son into his bean bag...bend over. But no. None of that is acceptable. Darn it.

However, I am very happy and I really cannot stress that the life after ridding yourself of UC is just amazing. At least it was for me b/c the pain I felt was just unbearable. I always rated it a 12 on a scale of 10 and explained it as a meat grinder being used on my colon then put back in for my body to use. It was horrible.

But now all I feel is the stupid pains from the surgery that by this point I know could have been prevented had I followed Dr. Ass----'s orders. : )
Posted 2/22/2009 10:47 PM (GMT 0)
I am 54 and truthfully this dz is making me feel about 84 right now. The meds take so long to work too. My Dr told me the colazal would take weeks and now at 4 weeks the stomach is better but I still have problems with extreme fatigue and joint pain. Should, the colazal help that too? Maybe it just takes longer to help with the joint pain. I had to take some aleve today and heard it is bad for colitis but tylenol does not help w/ joint pain and body aches. I also take fish oil but that isn't working right now.
This came on me at a time when I was very unhappy and felt trapped to change with my job. We live in a small town and my husband can't move because he is so close to retirement. I wonder if a change in my job would help the colitis? Anybody have any thoughts on that? I have been pretty unhappy and blame the coloitis on this unhappiness. This is so nice. I have never been a part of a support group. I enjoy hearing the other stories. Sorry that mine is not too inspiring right now. Perhaps in the future, it will be.

Thanks!
Posted 2/23/2009 1:17 AM (GMT 0)
I teach adults. I wonder if those who teach kids get exposed to a lot of different bacteria and viruses. Seems like a hazard of the profession. I'd never survive that environment. Sometimes I think about going back to my former profession. I would have back up for when I get sick and wouldn't have to get up in front of people so much. Since I took this job, I got sick and wonder if it is b/c of the stress. Teaching workshops by myself for long hours can be very stressful b/c I don't enjoy it. Time for some soul searching for me. God bless.
Posted 2/23/2009 1:42 AM (GMT 0)
I'm not an educator, but I am an Intensive In-home Services Specialist for the state of Missouri and work to keep children in their home...I help the family to promote positive change to prevent foster care. So really, my job is based around the children and their safety is my priority.
Posted 2/23/2009 2:15 AM (GMT 0)
This has been good to read. As a mother of two kids with UC the future for my children often leaves me very frightened!! My son would like to be a physician and I wonder how he will be able to do so with UC. What about medical insurance after he turns 25, but not yet out of school and all those types of things. He is so intelligent. He made a 32 on his ACT and didn't even study. Will UC rob him of this dream?

For my daughter, I wonder if she will find a kind and supportive husband, will she be able to have children? (I will try to keep myself healthy and in shape and would be more than willing to be a surrogate mother for her should she need that). She would like to be an architectural engineer (she's only 10, this could change).

I just want them to have happy, healthy full lives.
Posted 2/23/2009 2:52 AM (GMT 0)
I was a teacher for 40 years. I have had UC since I turned 16 years old.
Some years, especially in my twenties, were tough. I always managed to tame my stomach. I used IMMODIUM when it was really bad and I became one of the best when it came to classroom management and student behavior. 30 of my 40 years I taught sixth grade. Sometimes I just had to leave suddenly. In the days before phones in the room, it was tough. In the beginning I was too embarrassed to tell my teammates. Later on, I did and was lucky to have good teammates who covered for me in emergencies. I always tried to get classrooms closest to the faculty restrooms.

Sometimes I just managed my pain by sitting and just relaxing my breathing while still giving instructions for an assignment. It is amazing sometimes what we can do....

Hang in there, go for your dreams.
Posted 2/23/2009 3:17 AM (GMT 0)
I was diagnosed at age 20. I was in college....went for my Associates in Mechanical Engineering Technology...finished, then went to work doing design...ran a small side business at the same time, and was going part time to obtain my bachelors in Mechanical Engineering. It took me 8 more years for that BS degree. 8 long years of work, more work, and school... It was excruciating. I missed a lot of class, re-took a lot of classes, and suffered. But I made it. I now run my own company doing factory automation, continue to do engineering for my own company...I fought hard to get here. It was very hard, and is still extremely hard - very stressful....more than I could have imagined. But I am in control of my own future (for the most part)....and we have great medical insurance...

Things I would have liked to have gotten into....Military....being a pilot.... ultimately being a commercial airline pilot, or in some form of law enforcement.... UC would not work for that.... I cant complain now, but looking back I may have changed my path into that line of work....

I have changed my lifestyle over the 14 years of having UC. It wasnt a fast change....it evolved this way....a lifestyle that has developed out of experience I suppose....and I suppose my career path fit in well with it so I kept going in that direction.

Would I let UC defeat me and give up? No way. Going through school while working full time is very hard even for someone without UC. People can make it through it....and you feel all the tougher when you do!
Posted 2/23/2009 5:31 AM (GMT 0)
I'd quit my job tomorrow and move out West if I didn't need insurance. I'd try to find seasonal work outdoors and wouldn't worry about having to secure health insurance at all times or suffering the consequences of having a "pre-existing condition" and never being covered again. So, yes, UC has changed my life plans. And I hate that. Now if everyone in the US was covered by universal health insurance, it wouldn't matter. I hope that happens in the near future.
Posted 2/23/2009 2:33 PM (GMT 0)
you know Sara, I don't know about CA, WA, or OR, but here in MA, we have great state insurance. It's worth looking into- I don't know that pre-existing conditions are a problem if you have uninterrupted coverage. But really, for you, it's an insurance issure, not necessarily a UC issue. I mean, you could have diabetes say, & still find yourself in the same situation. It's sad...the state of health care in this country is appalling. I too, live in fear of losing my insurance!

Posted 2/23/2009 2:35 PM (GMT 0)
Luckily I was (and still am) a stay-at-home mom when I was diagnosed last year. I think my son wouldn't agree that it was very "lucky," but I know that if I still had my old job as a project manager I would have had to quit or at least go on disability for a while.

I flared so hard last year that it would have been impossible to do any kind of job. As it was, I frequently needed help just taking care of my son. I think it depends on how hard you're flaring or if you're able to get into a maintenance routine that it somewhat predictable.
Posted 2/23/2009 2:52 PM (GMT 0)
I dont want to turn this into a debate about universal health insurance but I dont agree with Sara on her comment....Yea, maybe we would all have coverage, but the quality of service will be that of Europe or Canada....Not sure its in our best interest to have govt control the health care system - bureaucracy in health care is pretty dangerous...not to mention having them make life or death decisions.... think about waiting 6-8 months for complications with your UC? id rather find a way to pay for our private system....
Posted 2/23/2009 3:08 PM (GMT 0)
In the beginning, when I was very sick, I completely quit a very stressful job that I feel contributed to my diagnosis. Since then, I've held three different jobs - the current one for the last five years - in which I purposefully looked for a more laid-back, less stressful atmosphere and little or no commute through the worst downtown traffic. I feel this has made a big difference.

I also got out of a bad marriage, spent some time learning to be single and happy with myself, then remarried a wonderful, supportive partner who fills my life with laughter and happiness.

I'm a firm believer in evaluating your home, work and spiritual life and making the changes necessary to live a happier, less stressful life with the love and support you need from friends, coworkers and family.

Posted 2/23/2009 4:21 PM (GMT 0)

Sara14 said...
I'd quit my job tomorrow and move out West if I didn't need insurance. I'd try to find seasonal work outdoors and wouldn't worry about having to secure health insurance at all times or suffering the consequences of having a "pre-existing condition" and never being covered again. So, yes, UC has changed my life plans. And I hate that. Now if everyone in the US was covered by universal health insurance, it wouldn't matter. I hope that happens in the near future.

Previous to my dx with UC I was doing seasonal work with the Park Service out in Yellowstone NP.  After I found out about my new disease it really threw a wrench into the whole thing.  Needing health insurance was the biggest problem, since seasonal workers with the park service aren't offered any.  I was pretty content doing seasonal work...in the spring and autumn I'd have a month or two off which I'd spend hiking/bakcpacking or camping out in the desert of UT, AZ, and NV, then I'd go back to YNP and work for a few months.  It was pretty ideal for me.  UC really screwed up the whole thing for me. 
Posted 2/23/2009 5:34 PM (GMT 0)
again, can't you guys get state insurance???? If you're employer doesn't offer hlth. coverage, you automatically qualify regardless of income- has anyone looked into it? I repeat- that is not a UC problem, it's an insurance one! It still sucks though.

Posted 2/23/2009 6:36 PM (GMT 0)
Eva Lou -

Luckily I had been working full time in OR with insurance the winter I was diagnosed, and when I quit that job to return to YNP I was using my COBRA option, but that was extremely expensive. Plus, even though I had insurance, health care providers were not exactly convenient to me when I was living in the park. Since my UC has continued to be a problem despite having health care, in my mind it is not really an option to live far away from my doctor.

It is actually better that I stopped doing seasonal work, because I ended up finding a great job/career down in CO. Plus, since I came down with UC, I haven't been nearly as outdoors oriented, or more correctly I haven't felt well enough to get out hiking/running/climbing. If I was still in YNP I'd be sitting around going stir crazy. Things worked out for me, but for a while I saw my plans go up in smoke because of UC.
Posted 2/23/2009 7:24 PM (GMT 0)
I have lived in the south and I have never heard of a state health plan. I have heard of medicaid, SSI and cobra, but that is it unless you have coverage at your employer. Some do offer health coverage even with part time, but those are few and far between. It may also cost a lot.
I am lucky to finally have a good doctor. They are far away, but I can talk to them on the phone and they will call something in for me if it isn't bad enough to be seen. I pray for people who do not have health coverage. I hope one day we will have universal coverage for all our citizens.
Posted 2/23/2009 7:55 PM (GMT 0)
I used to be a collegiate wrestler, but basically had to stop due to this wretched disease. It has caused other mishaps along the way. Where you go from having a great time doing whatever to having a terrible time real fast. Were all witness to this though.
Posted 2/24/2009 2:02 AM (GMT 0)
Eva - I believe what you are talking about is Mass specific. It has to do with the fact that in Mass. it is illegal to NOT have insurance. You couldn't punish someone who couldn't get insured, right? But because our health care is free market based the govt couldn't force private insurance companies to take high risk patients. Hence, Mass developed a state plan. I don't think it is offered else where.
Posted 2/24/2009 2:29 AM (GMT 0)
Wow, what a nice law to have on the books in Mass.

Interesting that others were also told it was IBS! I was told that even though I reported bleeding and bleeding is not a symptom of IBS.
Posted 2/24/2009 2:26 PM (GMT 0)

yes, exactly- however, there was always Mass. Health, the state-funded insurance plan, for unemployed/low-income people. Since they passed that law about having to have insurance, the state has expanded the Mass. Health insurance tiers to cover just about anybody, with varying degrees of coverage & co-pays depending on income. I was under the impression every state has some sort of state-funded health plan- no???? Hard to believe. While the state-funded plans aren't great, they're better than nothing. Interestingly enough, that law is being called into question now- because so many people have been laid-off due to the economy, the state doesn't know if it can cover everyone who needs it- & they can't very well penalize someone who's been laid-off & hasn't gotten the insurance yet! It'll be an interesting year, fiscally.

Posted 2/24/2009 3:34 PM (GMT 0)
Eva - most state plans are for the very low income. The average person would not qualify.
Posted 2/24/2009 4:54 PM (GMT 0)
In Missouri there are many many many people without insurance. It's a horrible situation we have here. It's ridiculous what the cut off income is for not being able to receive our state funded insurance. I have clients that barely made ends meat and they do not qualify for insurance or certain forms of state assistance b/c of the second job one of the parents may have, or the fact that both parents are working the family income is too much.

So, I cannot tell you how many conversations I've had with couples and individuals regarding possibly quitting their jobs because they could not afford to provide appropriate care to their children by working...isn't that sad?! I know it's not the ideal situation b/c working is extremely important, but if their employer does not offer insurance or any kind of coverage it worsens their situation. Unfortunately, the majority of my clients need long-term counseling and psychiatric services, which unless they have insurance, is not a possibility. So, when you lay out the needs of the family and how those needs can be met, it gets very sticky very fast.

My husband works for the state of Missouri and our insurance is wonderful. I work for a private counseling angency that has contracts through the state, so my coverage would be outrageously expensive. I appreciate what the state offers to it's employees.
Posted 2/24/2009 8:53 PM (GMT 0)
I work as a staff nurse on a childrens ward . When I have a flare up the symptoms are always worse in the mornings, therefore I try to work late shifts as much as possible.
Working on a ward I have easy access to the toilet but it may not be convenient to leave a situation you are in at the time the urgency strikes!
so far I have been very lucky but it is in the back of my mind when I start with the griping pains at work ...will i get there in time ?? blush

Post Edited (Peanutnut) : 2/24/2009 1:56:45 PM (GMT-7)

Posted 2/25/2009 12:22 AM (GMT 0)
The United States' current insurance system is a highly emotional topic for me. But then I couldn't afford insurance for many years. I didn't have insurance when I first got colitis. I almost lost my colon, because I had to wait for my company to offer me insurance before I could afford seeing the doctor and having my condition be considered a pre-existing condition.

No. My state does not offer health insurance.

I don't know whether or not national health insurance is the answer, but it can't be worse than what we have now--insurance tied to work and lower medical charges for insurance companies than for the uninsured. There can be nothing worse than not being able to afford medical care.

I lived in Taiwan for 10 years. I had national health insurance. I got quality care. My medical expenses were practically nothing. Whereas here, in the United States, my home country, I couldn't even afford insurance for many years. My Cobra payments for medical, dental, and vision are more than $1,000 for three months, and this is for Cobra. Private insurance costs even more. The amount is ridiculous. No one should have to go without medical care.
Posted 2/25/2009 1:59 AM (GMT 0)
Perfect example. Ordinarily.. if presented with this situation.. I'd have a blast.

I got home from work at 5:30 to realize I needed to go grocery shopping. I'm EXTREMELY exhausted from work and the prednisone makes me tired... I'm also in a flare.

Went to grocery store and went potty twice in the first 5 minutes of being there. Got home and was sweating and carrying groceries... and there were three people at the end of my hall. I'm new to the area and don't have any friends... well they had set up a party to meet and greet neighbors... they were doing a follow up to see who would come because no one showed up.. I said maybe after I put up my groceries....

But honestly.. I'm SOOOOOO TIRED... I'm disgusting... my hair is awful from meds... and i'm overweight cuz of pred....and I'm just cranky. Normally though... without all these meds... and a flare up I'D BE JUMPING TO GO AND MEET THESE PEOPLE. UGH.
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