How I think UC has helped me.

No, I don't feel that any of my illness has "helped" me in a positive way with my perspective to have a better life. I do, though, realise life is short because we have the potential to die at any time either from illness or accident. There are people I know who have died.

I have realised that if I take my meds and take care of myself through various ways, have good friends and quality people in my life, that's what helps me.

Therapy helped me.

Oh....I guess I lied....my UC diagnosis helped me make the decision I wasn't going to have any kids and pass on any of the health tendencies I have, let alone raise kids while I have that stuff to deal with as well.

Not what you were probably looking for, however....

I'm over 50....now there's a reality of how much one needs to make changes in order to function well in the future.

It's great you're looking at the big picture and are keeping things in perspective.
quincy

I wonder if anyone has died of UC itself?

Can't say that having this disease has actually helped me with anything. To put it bluntly I'd rather not have the SOB. Talk about a condition that when in a flare-up almost renders you incapable of functioning like a human being. It's not only incurable but most of the so called maintenance treatments are hit and miss at best. The big pharma companies absolutely luuurve this one. $$$$$$!!


Merry Xmas everybody!!

No - no help here either.  Being diagnosed with UC at age 66 is not how I envisioned my senior years.  I have longevity in my family and had hoped to live to 90 at least but now not sure.  The funny thing is I was sure I was killing myself by being obese but UC happens to thin people too.

Anyway, my husband has Stage 4 lung cancer and the best attitude in the world - wish some would rub off on me!  I probably could not function without Xanax and Tylenol.

ElaineNY

UC helps me appreciate the healthy life I had before. I was diagnosed in the end of my 4th year PhD study. After that, I left school, hoping I would make back to finish. Unfortunately, I did not because of the intense study/work. I wish my advisor "let me pass" since I saw some students finish PhD even without working a lot. He has been negative. I was hospitalized 3 times in the past 1.5 years. Whenever I was not in hospital, I worked on dissertation. However, this is paid back by his no-reply. When I was at school, he often replied in 1-2 weeks. Now, I need to wait 2+ months for a reply from him. Both UC and dealing with dissertation helped me change to be a people hating life ... Sorry to say this.

My child is the one with UC and it has made me angry at the world and curse the universe continuously. If it were me, I might be able to find the "good" in it but since it's my child, this is impossible. Having said that, the situation is what it is and now I have to I ensure she has a great life despite having this terrible disease. Wallowing in it is not going to do much, as much as I do and as much as I want to. So, I am forced to try to figure out a way to use this to become stronger myself and make her stronger (although I wish more than anything she didn't have to be strong and could just be a kid, that's not going to happen). There are a couple of experiences I am using to guide me. The first is of my brother who had a stroke out of the blue one day (previously completely healthy except for a mild case of UC) in his early twenties. Two emergency brain surgeries, radiotherapy, paralysis, intense pain and years of physio followed. Eventually he managed to stand up, then walk, then get back to work, facing many setbacks. He never recovered sensation in half of his body but did recover all other function. He decided he could wallow in anger and depression (which he did face and was treated for for many years by a great psychiatrist) or could get on with life. He went back to university, did an MBA at one of the best schools in the country, met a beautiful, ambitious partner who is completely supportive of him, got married, got great job after great job and makes more money than anyone I know. He is the example I want for my daughter as she deals with this. Another example is of a little boy diagnosed very early with Crohns. I came across his website. He had a very severe case, many many years of hospital, many dangerous drugs, many feet of intestine lost. Meds stopped working and he decided to find his own route though herbs etc with some apparent success. This kid struggled with this disease his own life but ended up at a great university and from a very young age has been lobbying for funds for IBD research. He wrote that instead of asking God (he comes from a very religious background) "why me?", he asked "what do you want from me?" and used this to determine what he could do considering the circumstances he was in. I found this very moving. Being a middle class educated parent, I assumed that if I did all of the "right" things my children would be fine. They ate organic food, slept on organic mattresses, we didn't use chemical cleaners, they used organic shampoo, toothpaste, played with non toxic wooden toys etc etc. I felt entitled to a good life. How wrong I was and what a terrible way to learn this. This disease is terrible but my attitude is thing I can control so I'm trying to work on that.

I agree with the majority; I don't think IBD has really helped me too much...I'd rather not have it. I know my life would be completely different without it. I would be working a different job, living a different life, possibly be married or in a relationship...I like the people I've met because of it and the path my life has taken, but I hate this disease. So much.

This may be a twisted way to think, but each day I wish that instead of a chronic illness I would have gotten something like cancer, because even though that is immediate danger, it is pretty much over quickly--either you live and go back to your life, or you die and you don't have to deal with it anymore. It's easier to have a positive outlook then...you're only tested for a few months. We've been tested for years, some of us decades. It's so easy to get warn down. I have noticed that my friends and family are always really supportive at first when I flare, but they tire of it/get used to it and I end up dealing with it by myself mostly. They don't mean to be unsupportive; it's just the way things are.

I used to want to live a long life but now I honestly do NOT. I am 28 and the idea of living 60 more years with this is seriously hell. Sometimes the only thing that keeps me going is knowing that some day I will die and won't have to deal with this anymore. That is a horribly negative way to think, I know...I wish I could be more positive. I opened this thread hoping for help doing that and ended up chuckling as I read, seeing that so many people are in the same mindset as I am.

Thank you all for the support--this site really is wonderful. You all are some of the only people who really understand.

80sChick - I have similar thoughts. I thought over ending my life by any means. Before UC tortured me, I lived a rather 'free' life. For many times, I went out crying. Friends around me tell me "Oh, you are better than us so the God take more out of you." Unlike many young people, I just needed a healthy body and enough money for food/apartment before UC. It was ok to be life-long single, if only I was healthy. The darned UC seemed to tell me I expected much or I should not be happy. When my friends worry about salary, luxury, cars, promotion, I am fighting for being alive. It seems that God was not happy to see I was happy when I was healthy, no matter how little I expected.

I would still rather not have UC, but I am just looking at the silver lining. Maybe I am wrong in trying to make the best of things.

mumbles, you're not wrong....the silver lining thinking is maybe your way of realising that you're a survivor and you have strength in many aspects you've never imagined you had. Your sense of being is a good one. As pb4 says, there's no right or wrong, we have different values that influence our experiences. One cool thing, it fluctuates.




We all struggle, and regardless of trivial or not, frustration is a matter of degrees subjectively. Learning how to cope, creating options and seeing more, and keep things in perspective is always a good thing. It doesn't mean all will be perfect, however.

I don't believe in God giving us trials or tests, etc....life is that all on its own. It's a part of being human. We are given this life through being born out of the desire of someone else.

I guess the instruction booklet is one we create each and every day...one with lots of footnotes and references..lol.

q

I also admit that I suspect God will lead me to the heaven by this damed UC.

I used to eat nothing but chocolate and drink nothing but milk teas containing HFCS before I got diagnosed with UC. Colitis has been a wake up call for me. I now eat right. No more diarrhea, no more gas, no more bloating, no more urgency, and no more blood. I'm crossing my fingers that I won't get another flare, but I know it could happen again. I guess that's why I'm being very careful.

It's made me appreciate that when the human body is functioning fairly normally (heart, muscles, intestines, sight, vision, ect.) it's quite miraculous. It's also made me think that the one's that are functioning normally are given the power to take care of the one's that aren't functioning normally. Not just physical power (like doctors), but also mental power. Sometimes just saying, "hi" to someone who needs it can do wonders.