How Successful Is Your Life With UC?

I'm 26, and still working out my "purpose" in life. I have been really successful in what I've done... creating a needed business, building myself a very nice paid for home, making strides towards taking care of my health etc...

Today I'm pondering my future. If it weren't for this disease, I would seek a life of learning... first an undergrad degree, and then probably something further. I feel called to that sort of life, using my brains, learning about the world... and eventually being able to help people.

I have learned a lot about limits since I was diagnosed with this disease coming out of high school. I'm trying to make a path for myself in life that I'll be glad I took when I'm old... but don't want to get in over my head. The stress of being too busy is not good for me.

I'm looking at my priorities, and seeing what I could cut so that I could live more genuinely. I thought some examples of different people and what they've managed to accomplish, be it career wise or more oriented towards their personal life, while having UC, might be inspiring to me.

Thank You.

Hard to say. I have been derailed by divorce too and that was far more of an impact. My highest earning years are since getting UC 5 years ago. I had one year just short of 300k. Meanwhile last year a UC-related stroke had me fighting to get more work pretty hard. Things feel back on track. I am working downtown at a fast company, the commute is not an issue. At my last project I went to a co-workers house and he had so many hobbies. One his kids are grown. Two he does not spend an hour researching UC everyday. That was the biggest impact to my life I have ever realized. His wife had some kind of IBD though.

Clearly what I do with my life from here is up to me not UC.

I feel like UC can have a definite impact on life (mainly while flaring) to a certain degree, but I don't let it set the course for my life.

My priorities are my family and living more simply... growing our own food, using less products, buying less stuff etc. UC won't change those goals for me. It may mean that my kids watch TV and read books with me instead of running around outside if I'm having a crappy day, but the good days are much more frequent than the bad. My husband only works 4 days a week (we own our own business) and we get by just fine. I feel like a huge part of why we get by is because we've made the choice to live more simply and enjoy life, each other and the kids NOW, not after he's built up some big retirement by working his arse off and never seeing us.
It's just what works for us, and feels incredibly successful for our family.
We're also a homeschooling family so each day is a pursuit of knowledge in one way or another.

Oh, and we live in Hawaii, so life is just much slower in general here. :)

hekela, thank you for your reply. I think living simply and slowly is an incredibly rewarding thing to be a part of, if you can manage it. I have been drawn to that lifestyle myself, but have not yet given completely into it. I've done a lot of things such as: a super-insulated home that is nice but very manageable, a simple yard, no debt, self-employment, and in general a mindset that I do not need much to be happy.

I guess it might just be my age, but I am still finding out who I am. I am searching to find that "purpose" of sorts, something to make my life about that feels incredibly authentic. I'm persistent as can be, and pretty smart... so I'm thinking of all the opportunities that are there for me if I can manage them. It's not about material wealth to me, but self satisfaction that I'm making a difference in the world. It's tricky to walk that line between simplicity and aspirations, but I'm trying it while taking time to see what's most important to me. I always picture this very tiny one room cabin, a garden and a hammock when I think of what my dreams might be, lol. That is already available to me, so I'm seeing what else might be worth pursuing in my life.

How does UC limit your life? Why would you not be able to go to school?

For some, UC is very limiting. It affects their jobs, hobbies, and relationships. Usually surgery is the best answer for them because their colons are in poor condition, they are very predisposed to getting flares, the medications they are taking are damaging their health, and they are only prolonging the inevitable--surgery. Why take dangerous medications and lead a very limiting life only to have to end up getting surgery anyway?

However, I don't know your situation. Perhaps the condition of your colon is not so bad. Perhaps you aren't predisposed to this disease. Perhaps you have not tried alternative treatments yet. I don't know.

As for me, I'm in remission. Fecal transplantation put me immediately in remission when I was pred dependent. I also take probiotics, and I changed my diet. I'm now on an anti-inflammatory diet. My main issue is that if I have to take antibiotics again, then the antibiotics could mess up my colon again, and I could experience another flare. It's a never ending cycle that I'm trying to end.

In the meantime, UC does not limit my life. I'm on this forum to let others know about fecal transplantation. It has the greatest chance of working for those who have C-diff or have lost strains of fecal bacteria. I'm here to let people know.

I can relate to you...my energy is limited as well.  When I am not flaring, I don't have as much energy as I did pre-UC, and when I am in a flare, I am exhausted most of the time.  It is a very frustrating situation.  I feel like I lose chunks of my life to this disease.  However, when I am feeling better, I try to do what I can within reason.  It's like I''m always playing catch up.  I don't know what the answer is.  I have tried to simplify things as much as possible and when you are feeling poorly, just do the bare minimum.  I wish I could be of more help...I have had this for 15 years and am still trying to figure out how to balance things!  All I can say is don't let it stop you from living your dreams.  If you "go for it" things may not turn out perfectly and you may struggle some, but at least you won't have any regrets and wonder "what if".  As they say, you only live once!!!

 

I got UC at the end of my career so my answers will be different than someone younger. I was self-employed which means I paid for my own health insurance without a group policy. That statement alone says a lot. UC and health insurance is a big issue. If I got UC younger I might have been "forced" to get a job with benefits perhaps with a government-type so it couldn't be cancelled.

That changes life, and the choices possible. Maybe I would have considered moving to another country with socialized medicine although I hear they don't want this kind of person lol.

Would UC have changed my life at an earlier age? Yes, no question but not changed who I am.

Energy: you mentioned lack of energy. I have gone through periods that this was a factor. Sometimes it was due to the meds, 6mp in particular. Sometimes it was due to anemia. And sometimes it was due to constant D and was probably dehydration also.

In the past 14 months fatigue has been gone. I attribute this to diet modification and am rarely ever tired. I play sports 2 times a week for 2-3 hours, I do pretty strenuous work in the garden.

Suggestion:Drink more water. It helps your body cope with UC. Drink less caffeine which does the opposite (even though it's a guilty pleasure of mine). And of course I suggest diet mod. since it's helped me so much.

This is a really interesting topic that has got me thinking.

First off, I think almost everybody has to deal with SOMETHING that they feel limits them or stands in their way, be it a health problem, finances, family background, personality trait, no connections, no talent, etc etc. 

I am always interested in how people deal with their limitations. Aren't we always the most impressesd, or in awe of those who overcome and succeed at what they are trying to do?

As for me, I got UC when I was 23 in grad school and used to study for hours in the bathroom.  Now I am 42, married, 2 children, house, career as a social worker, primary bread winner for my family.  I just never let the UC stand in the way.  I didnt even take it into account when making decisions. I just plowed ahead.  And along the way, I made alot of bad decisions (mostly financial), but I do not blame UC on any of it.

Even without UC the 20's can be one of the most difficult times in your life.  It is a time when you feel you have to make major decisions about how your life will be.  When I think back, i think of all the things I would have done differently. So I can understand the confusion. 

Are you trying to decide what to do with your life next? I wasn't clear what actual decision you were wrestling with.

(female here , btw)

I wish I knew my purpose. I do agree with many of the posters. I don't think you should let UC dictate your dreams or cause you to feel like there are things that are "out of reach". I can't say what my accomplishments are, I haven't done anything that is super-important. I've worked at a few corporate jobs and i've always been successful in those positions but I've never seen a future in sitting behind a desk, trying to climb the corporate ladder, it's not me. I currently work for myself and it has been the most rewarding experience for me. I work from home and I am able to spend more time with the people I love. I am usually out doing things with my dogs. I cook a lot and I enjoy learning new skills, whether it is gardening, cooking, technical projects, participating here on HW and helping people out in the real world. I've learned to be much more compassionate. These are the things that I enjoy and things that make me feel good each day. I don't gauge success on money, it's more important to find happiness and to live a way that allows you to be happy.

I've never wanted children and I don't agree with the view that you have to have kids to feel accomplished. I also don't agree with the view that women are looking to settle down and have kids, I am a woman and I am not. I think kids are great but are you having them for them or for you? I don't have the most positive outlook on the world and I fight that negativity everyday. I don't see having a child and bringing another person into this relality that I find to be questionable. Maybe someday I will change my mind, childhood is wonderful but it's followed by the struggle we call being an adult, haha.

Thanks everyone for the additional replies.

kiolm... thank you for your take on the world. I'm already pretty content. Maybe that's what has me thinking... I mean: I feel like I have all the basic things that I really need. I have a nice place to live in a good community. I have great friends and family. I have a dog. I don't buy much material junk, and really don't need much money to live on. I keep trying online dating, and ask women out once in a while in person... but do not find in me that same need to be with someone as a lot of people have. I love the idea of finding the right woman, but feel like I need to explore life more every time I meet someone that looks like she might be a good fit.

I'm with notsosickly girl on her take on children. There are some things that concern me quite a bit about this world, that no leader seems to be addressing in a serious way. This is another reason dating seems more difficult for me; most women want a family and do not seem to think about the future in the way I do. There are serious issues with energy constraints, wealth separation and fiscal irresponsibility by government that leave me wondering what the future will look like. I can handle my life well, but bringing a child into it seems to be something that I should really want, very badly, or else not do. There has only been one time ever that I had an overwhelming urge to have a child. It was during a meditative type drive that I did while thinking over some things in my life as well as thinking about my friend and his wife. They wanted a child and weren't having luck. I finally had a moment of clarity, where that really strong urge to have a wife and a child came to me. It was only long enough to inspire me to write them a card and mail it... then the feeling was gone again!

Hekela: I've cut quite a bit from my schedule. I think the point of my initial post was to weigh out how different people have deemed their life a success while having bowel problems. There is a part of me that is very driven to be involved in the active college/academic lifestyle... and see where it takes me. BUT, there is also part of me telling myself that I have all I need right now. It seems like a trade-off to do one thing or the other. It feels (at least here in the US) that people think they can have it all. They are so busy though, that I wonder how much they actually savor their lives.

What feels most natural to me is to be self employed, take care of my health and learn at my own pace where I can pause and do other things when I feel a need for it. I'm starting to think that I really do just need to listen to my intuition right now. It does feel odd sometimes, not being quite what people consider normal... in terms of what I seek in my life. There is (it feels like) a little pressure to make these decisions such as a spouse, children, career path... at my age. Sometimes I feel it's just fine to not make those decisions if I'm not ready... and other times I wonder if I'm avoiding them for some certain reason. I never find an answer though!

I've really got to leave for work right now though! Thank you everyone that's posted, even those I haven't personally responded to. It helps to have support.

I've been avoiding this topic... I think it's due in part to the fact that I can't quite see any connection at all between "success" & UC. How one would affect the other, why one is contingent upon the other, etc. I feel successful & happy personally- I tend to be a homebody, I work part-time, spend a lot of time with my one-child family... we don't spend much $$$, we don't have much $$$ to spend! But material things don't provide me much joy or satisfaction. We garden, go hiking... UC has never made me feel unsuccssful, or unahppy with life overall. Yes, there have been times when I"ve been extremely ill, no energy, etc. But they pass. It puzzles & saddens me why you feel that your UC is in any way linked to being happy, fulfilled, or successful in life.

Thoreau said...
It's more that UC creates a limit on the amount I can feasibly do without overstressing my body. I was most curious about how other people have succeeded in spite of having such an illness. Do most of you find your energy just fine? I seem to be limited... but maybe that's just normal for me.

I have a ton of energy. I get it from my mom's side of the family. She's 74, still working full time, works out at the gym, does yoga, runs five miles, and has only 2/3 of her liver left due to Hepatitis C.

I get out of breath though when I'm sick. I remember when I lost so much blood due to my second flare. I'd get out of breath in dance class, I'd have to drink a lot of water, and I'd be sweating from all the water I had just drunk. We got a new dance teacher about that time. She thought my getting out of breath was an age thing because I was the oldest in the class. But then I started to get better, and my stamina went back to being the best in the class, which consisted of children as young as 10 to adults 20 and up.

I get really scared when that happens, when my energy level goes down to the energy level of normal people my age. I'm very, very thankful I have a high energy level.

So, yes, being ill reduces one's energy, especially if one looses blood.

I don't think marriage and kids have become a "status symbol" in our society and that if you don't strive for them, you are looked at as "weird."

I do think that people who choose not to have kids are seen as being selfish and immature or as having trouble conceiving. Not saying that I think that way, only that that's what many people I know think.

For me, I did find that extending my family through having and raising children has been and still is the most rewarding part of my life. To have a family filled with children, children's spouses, and grandchildren has been absolutely wonderful. It's a very blissful feeling that can not be described. However, not all people feel this way. For them, it's probably better not to have kids; otherwise, everyone suffers, the kids and the parents.

Post Edited (subdued) : 3/22/2011 7:12:52 PM (GMT-6)