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Posted 3/23/2011 1:19 AM (GMT 0)
yeah, i hear what you are saying subdued, i have heard that "selfish" thing about not having kids. i actually feel quite the opposite...the way the world is today, i don't think i would want to bring a kid into this world with so much suffering and turmoil. the world has changed a lot since i was a child, and not for the better. plus, i don't want to pass my uc on to any kid. if i wanted a child i would definitely adopt one that was already here.
Posted 3/23/2011 1:27 AM (GMT 0)
subdued, for some reason my computer wonked out and didn't let me finish. what i wanted to say was i'm glad it worked out well for you and has been genuinely rewarding. and i totally agree w/you that some people don't feel the same way and should not have kids because then everyone involved suffers!
Posted 3/23/2011 12:19 PM (GMT 0)
I was diagnosed with severe uc throughout my whole colon in march 2009. By then I had already had my three kids. My goal in life was always to have a family and stay home and take care of them. This is what I did and still do.  I started thinking about going back to school about three years ago and last year in Jan of 2010 I decided to go. I'm going for a dental hygentist. While I did pick something I feel I can do with uc I also am doing what I want to do. It is hard to go to school with uc but I manage. I don't eat before class I wait until after which is 9:00 at night. Oh, well.

I do get depressed once in a while but it comes and goes. I try not to let uc hold me back. My advice would be to go to school if you want. If you don't want kids don't have them. You live your life for you, not anyone else. I feel I'm successful because I have what I want. Meaning: I have the kids I've always wanted and I can stay home with them which is what I have wanted. Others want other things. Our house isn't the greatest Meaning we live in a 130,000 dollar house instead of a 250,000 dollar house. We can afford a more expensive house but we believe that living for a house isn't living. We have no debt except our house and we have been very blessed. While what I want is different than what you want what i'm saying is I'm happy because I have what I desire truly in my heart.

As far as fatigue. This is my biggest complaint about my uc. I have extreme fatigue. It is horrible but with three kids I don't have the luxury of sitting around. I just push through. You only have one life. I wish you the best of luck. What you view as successful others won't so you have to do what you want and please don't let uc hold you back. If you want to go to school and further your education do it. Or you might regret it later.

Posted 3/24/2011 8:52 PM (GMT 0)
I've been meaning to respond to this post for days now- it's so interesting to read what everyone is writing!

I don't see UC as a handicap and I don't believe it's limited me in any way.  Rather, I think my busy lifestyle is what keeps me from fully controlling my UC. 

I was diagnosed when I was 18, but I still went to college and graduated in 4 years, although there were times when I considered taking a year off.  I was hospitalized for 1 day for anemia freshmen year but that didn't set me back too much.  I missed classes mainly because i was stupid and didn't get myself checked out, and I was also drinking and smoking which probably aggrevated my symptoms. 


After graduation, I worked a full time job in the pharm industry (I even worked on Remicade at one time), while going to school to fulfill my science credits for med school.  Eventually I decided not to go to med school and started my own business as a wedding planner while still working full time.  Suffice to say, it's a stressful life, but I enjoy it. 

Only recently have I learned that I need to pace myself and make time to destress and focus on what I eat and just change my lifestyle in general.  Maybe if I didnt have UC I could've done more, but I feel like I've accomplished so much already and I'm not 30 yet, so I'm happy.

If you can get your UC under control, the sky is the limit on what you can do!

Posted 3/24/2011 10:19 PM (GMT 0)
My situation is kind of reverse to yours. Ulcerative Colitis has been extremely easy for me to ignore up until relatively recently. I'm 26 too.

I've known that I had it since I was 16 years old, however I didn't have my first flare up until I was in my second year of university and it went away almost overnight when I was put on my first round of Salofalk tablets and iron (I was a starving student living off of junk food and I developed anemia pretty badly).

I was a smoker from when I was 19 until very recently which might have also been the reason for the long remission. I was able to finish my undergraduate degree with very little symptoms of UC while my sister suffered and suffered with it all through adolescence right up until now (now I envy her as she's in remission).

I travelled overseas when I was 22 do teach English and pay off my student loans. I did fine for the first couple years. Then I decided to move to a different country on a whim (from Korea to Japan) to see how I would like it. *Boom* Major flare-up. Major, major flare-up. It was the worst place to have a flare-up too because frankly, the Japanese don't know what Ulcerative Colitis is outside Tokyo and the healthcare system there is extremely lacking. Locals hospitals (more or less) = triage clinics. Doctors would never take me seriously and I was having an awful flare-up for months before I was able to get any kind of recognition/medication for it.

I ended up getting sick and tired of the poor treatment so I did some research on the internet, found the closest hospital that I knew would be able to help me and drove for four hours to get there. They gave me a colonoscopy, said the equivalent of "holy ____" and put me in the hospital for three weeks. Since I was on a month's vacation I was able to do this without missing much work. Shortly after getting out I decided to quit my job, I spent a month or so travelling around the country then I went back to Canada, feeling rather defeated and living with my parents for two months while I got my crap together (heh, literally).

Since there are no jobs in Canada, I came back to Korea and got a job in the capital. I have a great hospital/great doctor now. It's relatively easy to get good, worthwhile treatment.

Anyway, as per success... I'd say I was moving upwards until I had the first nasty flare up last year. It basically stole an entire year from me. The company I worked for at the time had no sympathy for me being sick and if I hadn't quit they probably wouldn't have renewed my contract. My flare-up made me a bad teacher, a bad employee, it made me lazy and unable to be effective in anything. It pre-occupied me despite my best efforts to fight through it and make into a small deal.

It also made me aware of my mortality. Before I was kind of like, "bungee jumping? Sure! Motorcycle road trip? You bet!" and now I'm much more of a home body, constantly dealing with my pills... I developed Generalized Anxiety Disorder which gives me panic attacks regularly. I'm actually changing to a new job soon and the reason I chose this particular job is because it's extremely low stress. Normally a challenge would have excited me but this time I just wanted a job that would give me the most time at home and the least committment at work.

This is probably way too personal so I'll cut it off here.

One thing is that several doctors told me that I shouldn't be overseas. They told me I should've went back to Canada indefinitely as this disease is "so severe." I came anyway and I'm glad that I did. I'd be bored out of my mind in my home country and I know that.

If you want to be successful with UC you can, you just have to work really, really hard. It's like having a second job.

Additionally; you can still go to school while you have UC. If you want more education, do it! I'm actually going to be doing my next run of education on the internet so no matter where I am (even in a hospital, god forbid) I can still get it done. :)
Posted 3/24/2011 11:31 PM (GMT 0)

kate22 said...
i have heard that "selfish" thing about not having kids. i actually feel quite the opposite...the way the world is today, i don't think i would want to bring a kid into this world with so much suffering and turmoil. the world has changed a lot since i was a child, and not for the better. plus, i don't want to pass my uc on to any kid. if i wanted a child i would definitely adopt one that was already here...

... i'm glad it worked out well for you and has been genuinely rewarding. and i totally agree w/you that some people don't feel the same way and should not have kids because then everyone involved suffers!

There are definitely too many people in the world today. And I add pollution to the world just by being alive. I feel guilty about that sometimes.

I agree. Adoption is a good answer. And if a person wouldn't make a good parent than he/she shouldn't adopt.

Post Edited (subdued) : 3/24/2011 5:34:21 PM (GMT-6)

Posted 3/25/2011 4:15 PM (GMT 0)
I think I was very driven career wise (a business, that ulimately failed, not because of UC. After UC diagnosis, I reprioritized and work is low on my list of priorities. I think I'm successful at UC and other areas of my life that I wasn't paying attention to because of work. (Marriage, family, etc...)
Posted 3/26/2011 1:50 AM (GMT 0)

kate22 said...
i totally agree w/notsosickly girl about the fact that you don't have to have kids to feel accomplished, and again agree that all women do not want the same thing: marriage, spouse, kids, picket fence, etc. i am a woman and, although i like kids and the company of men, do not desire marriage or kids. i think these things have become a "status symbol" in our society, and if you don't strive for them, you are looked at as "weird". however, i think things are slowly changing regarding these views, and will continue to do so. thoreau, follow your heart. don't do things just because society pressures you to, or because that's what everyone else is doing. the answers will come to you.

Which is why I waited until 36 to marry and my wife had our child at 40. However after doing everything I wanted to do, raising a child is clearly one of if not THE greatest joys in life. I usually refer to it as the last great Joy.

There are a lot of people unhappy in marriage. That said I am reconnecting with an old girlfriend and would like a compatible partner to plan the rest of my life with. She was cool and easy going. Other than that I am not interested in spending time on it. One thing I do not need is a needy/unhappy person or more problems. I have a friend who divorced on the same day and he hopped on the treadmill-to-find-a-gal and has never learned to be happy alone first. I think that makes you a better prospect for an enduring relationship. Happiness that is not dependent on someone else is part of the formula for relationship longevity.
Posted 3/26/2011 2:05 AM (GMT 0)

subdued said...


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.

Recently I have found that most adults I interact with are really just large children. They are still flexing their ego/accomplishments and wanting external validation. The difference is kids need constant attention where these adults are productive but still have flashes of it. However they are just as likely to be married as single. I think we all go through that until we know with certainty who we are and begin to care less about external validation. Seems the people with fewest relationships are worse, more relationships in their history the opposite.

That last statement you made I agree with 100% My house is full of kids right now while I work in my den. Beats the pants of me me me all me all the time. Free beer at work today - I left early to pickup my daughter.
Posted 3/30/2011 5:02 AM (GMT 0)
For me it changed the focus of my career. I'm a set designer, and while I still take jobs, I used to travel all the time. Now I work in town, and started my own stock photo business. I'm also going to start a rental business. So in a way, it's forced me to be more successful and focused, and move forward in a field that has a shelf life. I would have eventually come to this, but it put me ahead of the curve. I think the key is do what you want to do, figure out your niche, choose to not let stress override you, and work on your own time line. And, by the way, success is totally subjective to begin with, so really spend some time deciding what your definition of that is!

As for personal life, that's so important. I've been very lucky in my marriage, and I treasure my family and friendships.

So although I don't appreciated this illness, I try to not let it be an albatross. It made me look at things differently and change courses sometimes. I see so many people who get stressed about the most trivial things, and I feel like they are missing out on the big secret. Every day you get up and feel well is a great day. You're still really young, don't be afraid to move forward.
Posted 3/30/2011 1:55 PM (GMT 0)
Don't let UC be your crutch in life. Do what you want. I was honest with my employer and have had a very understanding boss and my co-workers pick up my slack when I am unable to come in. I make it up by helping them out when I am here. It's a give and take.

I LOVE fishing and kayaking. I kayak offshore and am gone half a day without any toilets. I thought life was forever changed when I was diagnosed with UC. I learned to adjust. I limit the food that aggravates my stomach. I also eat soft foods the day before going offshore and skip breakfast that morning. I tank up on water the day before and when I get back to the beach I have more water waiting for me. I also bought a portable toilet for back up.

Life is different but its not over. I won't let UC or anything else stand in the way of what I want to do.
Posted 3/30/2011 3:07 PM (GMT 0)

TexasJewel said...
Don't let UC be your crutch in life. Do what you want. I was honest with my employer and have had a very understanding boss and my co-workers pick up my slack when I am unable to come in. I make it up by helping them out when I am here. It's a give and take.

You're lucky to have such an understanding boss.

As a word of stern warning to everybody else (although I probably shouldn't have to say it): if any employer suspects that you have anything wrong with you that will require you taking sick days or time off work, then they will fire you. End of story. I've never been fired before but I've worked a couple of jobs where I saw it coming (based on how they reacted to me taking one or two sick days) so I quit before they had an opportunity to fire me.

Above all, never tell your boss the name of your condition or mention that it's a re-occurring condition because they will definitely fire you on that basis. When an employer asks you about medical conditions during your interview, leave it blank. If you have a flare up and need to take time off, pretend like it's never happened before.

The ideal for people suffering from chronic illness is to be self-employed, period. No job will give you more than a few days off for being sick without major consequences (up to being fired). I learn this more and more each year :( I was sick for the entire year last year and my condition got much worse because I knew taking a sick day would get me fired. It sucks. I wish the average person was more understanding but such is life.

Post Edited (Wavefunction) : 3/30/2011 9:10:27 AM (GMT-6)

Posted 3/30/2011 3:37 PM (GMT 0)
Sorry, but I have to speak up- wavefunction, that is such total BS- I work in the medical field, in an admin. position at a non-proft healthcare for the homeless clinic. Never have I been penalized for taking time off due to being sick. I've had months off a time, been hospitalized, etc- nothing, my office sent me a gift card to a local hlth. food store & a get-well card! Was always able to take days off every other month for Remicade infusions, no problems. Obviously, why would anyone EVER bring up a potential illness during a job interview? That is so not the time- if you wanted the position & they wanted to hire you, it's something you *could* choose to discuss at your orientation with the HR person- who could explain sick time, short & long term disability, etc. Or not- no one has to disclose any illness. From someone who has never been fired due to illness, you seem to be awfully sure of yourself about how a chronic illness affects employment! Completely off-base, utterly wrong, etc.  

Posted 3/30/2011 4:05 PM (GMT 0)

Eva Lou said...
Sorry, but I have to speak up- wavefunction, that is such total BS- I work in the medical field, in an admin. position at a non-proft healthcare for the homeless clinic. Never have I been penalized for taking time off due to being sick. I've had months off a time, been hospitalized, etc- nothing, my office sent me a gift card to a local hlth. food store & a get-well card! Was always able to take days off every other month for Remicade infusions, no problems. Obviously, why would anyone EVER bring up a potential illness during a job interview? That is so not the time- if you wanted the position & they wanted to hire you, it's something you *could* choose to discuss at your orientation with the HR person- who could explain sick time, short & long term disability, etc. Or not- no one has to disclose any illness. From someone who has never been fired due to illness, you seem to be awfully sure of yourself about how a chronic illness affects employment! Completely off-base, utterly wrong, etc.

I'm a bit bitter, admittedly. In my previous job I took six sick days in a row because I was in the hospital for a flare up. My doctors let me go earlier than they would've liked so I'd be able to go back to work and from the day I arrived back I felt nothing but... well, utter disdain from my co-workers. The extra workload my absence dropped on them made them resent me more than anything. I ended up quitting the job about a month later (it wasn't the greatest job) but I'd say it was the sick days I took that made me stick out as an employee and made everyone hate me. One person said, "I've worked here for 30 years and have never taken one sick day. You've been working here for six months and you've already taken six."

I should add as a footnote that I'm working overseas and sick days simply do not exist on this side of the world (it's an unwritten rule that you have no sick days despite what your contract says), however in Canada I've gotten in a lot of trouble for taking sick days as well. I was having UC problems and I used to work for the hospital as a Patient Attendent while I was in University (I was 18-19 years old). After six months part time employment and no infractions/absences, I had my first flare up. There was no blood but I got anemia and was blacking out all over the place. I called my employer, explained everything (I didn't know it was UC at the time so I just told them the symptoms). I called about three hours before my shift was supposed to start and they told me that if I couldn't make it to work that day, then not to bother showing up for work any other day either. I ended up going to work.

My sister has UC and works for the Canadian government and she has had a lot of trouble getting time off, especially if she requests it fewer than a week before it's supposed to take effect. They never threatened to fire her but it did put a huge strain on the rest of the staff which, similarly to me, made everyone quite sore at her for a little while. I should also mention that she has been working there for years.

These days I've done a pretty good job of organizing my life to accomodate my UC. Currently I work near a major hospital with a good specialist. My hours permit me to go to the hospital during breaks if I need to without having to mention it to anyone. Since this job is just temporary, the full time employment I start next month is an evening shift job, giving me the mornings to go see a doctor/refill meds/do whatever else to manage. Hopefully I'll just use the mornings to sleep in :) That's the bright side I guess.

I think that sick days will be a thing of the past ten years down the road anyway. I've never got real sick days or paid leave of any sort and I grew up in Canada for crying out loud. I hear it's worse in the US and other places. I don't know what bubble you live in where you can take weeks off work without it throwing your life off track/losing your job, suffice it to say that I envy you :(

I should also add that I've always been asked about medical conditions before starting a job. Either formally or informally. I just never reveal.

Post Edited (Wavefunction) : 3/30/2011 10:11:51 AM (GMT-6)

Posted 3/30/2011 4:18 PM (GMT 0)
I get 1 sick day for every 30 days I work. I was working at my current job in 2009 when I was diagnosed with UC. I used all my sick leave and vacation time. I had to go without pay later in the year when I had another flare up. My co-workers were completely understanding and did most of my work. I work on the computer a lot and am able to work from home if I have to. Once you are hired isn't it a discrimination to fire you just because you have an illness? I know there is another lady in my office with a chronic illness and she was hired as well.
Posted 3/30/2011 4:29 PM (GMT 0)

TexasJewel said...
Once you are hired isn't it a discrimination to fire you just because you have an illness? I know there is another lady in my office with a chronic illness and she was hired as well.

Over here it's not but in my home country it is. I come from the economically worst-off part of Canada though and have seen all sorts of... exceptions to the rules. Like people getting fired for talking about unions and people getting fired for taking sick days. They might not fire you right away but they will fire you a few weeks/months after the fact if they know it will happen again and cost them money (in the case of a chronic illness). If they do fire you, it will be for something else that they pull out of thin air so they can avoid being sued. I know of quite a few people who were fired this way. Once and awhile they take their employers to court and win, however this is a rare event and it works out so that the employer is actually losing less money after the lawsuit than they would have from the loss of productivity as a result of people on leave.

The thing I hate about UC is that it's hard to explain to other people. I have explained it to friends before and in the end I've always ended up regretting it. I can tell they look at me differently and think about me differently after they know that I put blood into the toilet on a regular basis. Some people generally care but if I've learned anything since my recent flare ups and my hospitalization it's that I definitely have one of those "suffer in silence" type diseases, however I'm grateful that I only have UC and not a mental disorder. Mental disorders aren't taken nearly as seriously as they should be.

Again, I'm not trying to fear monger or anything like that. I know it isn't like this for everybody and I know that some people have very productive lives on UC (sometimes even more productive because of how thick skinned people tend to become in the face of adversity).

I just want people to be aware of the fact that most people will not understand and at the end of the day, you're on your own with whatever problems you might have. Never expect fair treatment or empathy.

Post Edited (Wavefunction) : 3/30/2011 10:33:32 AM (GMT-6)

Posted 3/31/2011 2:08 PM (GMT 0)
Sorry I didn't see the post that you worked overseas Wavefunction. I guess that would suck.
Posted 3/31/2011 6:00 PM (GMT 0)
I was diagnosed in my early 30s. I was extremely ill for about a year and I became very focused on my body - especially the digestive system - and improving my health. I'm a "Type A" that pushes myself and was really stressed, although I didn't realize it at first. To me, the UC diagnosis was a red flag that it was time to start taking better care of myself - including regular exercise and a more healthy diet suited to my digestive issues. (I had irritable bowel syndrome for years before the UC diagnosis). I spent alot of time studying books and websites to learn all I could about dietary and lifestyle modifications and other alternative approaches because my doctors had nothing to offer along those lines.

It's my experience that UC can be successfully managed in the same way many other chronic diseases are, but it requires being willing to put your health FIRST and sometimes that requires some tough decisions. I quit a stressful job and spent a month at home, recovering, per doctor's orders. After that, I looked for a less stressful job and eliminated all unnecessary obligations and stressors. Any spare time was spent studying, experimenting, lifting weights or preparing meals for my modified diet.

It probably took another year or so to slowly heal and reduce all symptoms, but since then, I've had no major flares and my last scope showed no inflammation at all. I say all this to say if you'll put the time and effort into listening to your body and figuring out what combination of meds, alternative therapies, diet and excercise work for you, you'll have a better chance at leading a healthier life with fewer or no UC complications. And then you can pursue whatever dreams you desire.
Posted 4/1/2011 12:01 AM (GMT 0)
Princesa... thank you for your reply. If I am remembering right, I think you are one of the posters on this forum that recommends "Listen To Your Gut" by Jini Patel Thompson. I got that book 3 months ago, and have been experimenting ever since with alternative therapies. It's turning out to be very successful so far.

Since you sound like you've researched this and done a lot of trial and error, I thought I'd ask a question. What kind of diet would you recommend to gain weight? I'm not necessarily over-worried about this presently, but would enjoy some new ideas in this area. I used to do ensures, but they're full of things that I do not need in my colon. I'm also not drinking milk presently. So... if you have any easy suggestions I'd love to hear them. Thanks.
Posted 4/1/2011 1:33 AM (GMT 0)
Most people are ignorant about inflammatory bowel disease, so I choose to keep them in the dark about my condition. I don't think you can really understand the extent of the suffering the disease process entails until you go through it yourself. Stay healthy everybody.
Posted 4/1/2011 1:33 AM (GMT 0)
My intention is to get as healthy as possible so I can hike Machu Picchu this June.
Posted 4/1/2011 5:13 AM (GMT 0)
hey blueclassring, When I went to peru, all of my friends had food poisoning at one point or another, so my bowel function seemed exemplary by comparison:) That's a great goal!
Posted 4/1/2011 6:28 AM (GMT 0)
Food poisoning must still pale in comparison to having a flare. I'll be sure to give some probiotics with me at all times. I'm on the SC diet, so it's going to be a challenge to eat in Peru I'm sure. Bananas, and eggs. Can't screw that up too much I hope.
Posted 4/1/2011 5:05 PM (GMT 0)
Lima is known for world class seafood, the best sushi, the best ceviche, the best chinese food. They are known for multitudes of varieties of potatoes and corn (sadly not scd) There's lots of roasted meats (amazing roast chicken) if you eat meat (and guinea pig. I don't recommend it:) I think ceviche is scd legal. Beans, if you do that. Most of their food is simply prepared and really delicious, I'm sure you can make it work and still enjoy your food.

Everyone mostly got sick in the lake titicaca region, not really cuzco or machu pichu (well...altitude sickness, but not the food poisoning)

Also, if you get an opportunity to take an overnighter to fly over the nazca lines outside of lima, do it. It's amazing.
Posted 4/3/2011 9:56 PM (GMT 0)

Wavefunction said...


I should also add that I've always been asked about medical conditions before starting a job. Either formally or informally. I just never reveal.

I stopped being an employee 5 years ago. This gig is supposed to end up that way but I really cannot do it - will be moving on after moving some pretty big mountains here. Nobody has ever asked me about my health. Nobody cares if a consultant is out sick, your not paying him on those days anyway.

You write your thoughts well, you might consider getting into a different profession where you are rewarded for what you can bring to the table from a productivity and leadership perspective, removing obstacles so businesses can grow etc.

If you cannot differentiate yourself in a regular job then unfortunately your health might do it for you. Last summer flare I was working from home, it only became I problem when I failed to attend conference calls for 2 days, then I had to place an outgoing call from the ICU and that was all it took.

A specialist is needed for his insight not his consistent facetime in cubespace. I worked from home Wed-Fri last week but tomorrow it would be good to show my face.
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