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I was at a wedding last weekend and as usual I watched the dancers dance but did not take part in the festivities (hip/back pain was only part of it)...it got me thinking of all of the things that I never did or learned how to do because I was too sick.
If you got sick at 50+ this may not be your case but for those of us who got sick young and spent years in hospital or locked in the house you may get it...
I never learned how to dance...
There were other activities that set me apart from the 'normal' kids but this one has stuck in my heart and gut.
So what did you miss out on? What did your disease stop you from doing?
This is not a call to make a bucket list...it is just a musing on the other side effects of this disease. I missed out on summer camp, camping, sleep overs, most long duration or distance sports and lived in absolute terror of being anywhere in public far away from a toilet with running water...
Then again, I got my revenge on life by moving to Paris but that is another story....
Sharon
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sharon i am eternally grateful i did not have this illness(colitis and thereafter jpouch) or any other serious condition until i was 60 years old..i often wondered while going through this debilitating awful illness and its consequences how young people lived with this and functioned,married,raised family worked..i am in awe of everyone who has because one has to have been so brave every single day..ever day..i think it is a testimony to the incredible human spirit and will and determination and ability to persist and overcome these handicaps..

with that said getting it later on in my life when i personally still felt young in spirit and body i lost completely some good years(8) just trying to simply getting through a day thus missing everything..even the most simple of things..
I did not have UC until in my 40s and like Rebecca, I am grateful for all the disease-free years up to that point. I only had 4 flares that were very tolerable, but the 5th one almost killed me. I was also going through a nasty divorce at the time, so I lost my home, my business, and my husband along with my colon.

During my journey of recovery, I chose to be appreciative of what I had and not focus on what I lost. I wanted the divorce because my marriage was like a rollercoaster of extreme highs and lows and I just wanted off the ride to achieve peace in my life.

God answered my prayers. My life is not as exciting as it used to be, but I have peace, family support, a job, a home, my two dogs and a few friends that bring me joy and that is enough for me. I am grateful and appreciative for all that I can do and have hung up my superwoman suit. I have also learned to say "no" and ask for help (the hardest part for me to do).
i think what you said was the key here we have to try(oft times difficult) about what we have not what we lost or do not have..

in buddism it is believed there is no good ,no bad no loss no gain ,no judging and so on ..it is just what it is..every human may experience pain but we have a chose as whether to suffer.....everyone has challenges in life and happiness is not what we get dealt but how we deal with it..heavy stuff,powerful..hard but perhaps not impossible..

"i had no shoes but saw a man who had no feet" that gets me every time...
I had UC from 11-19, and really, though it wasn't always controlled, I didn't miss out on too much in my early life. I just never really let myself see myself as "sick," I suppose... I think kids can be like that, though.

After J pouch, still never had anything that got pushed aside for my "new normal."

These days, I feel more tired, and that probably limits me more than anything, but not that much.

I've been pretty lucky, I suppose.
My UC hit at 17 but then left me be, never to bother me. So I did everything I wanted, it wasn't till my early 40's that I started to have issues, not with the UC but the may leed to's, PSC, Colon Cancer. So in hind sight the deal I made with the devil at 17 gave me 27 more good years but paying for it now. Yep would make that deal again in a second.
when i spent 9 weeks in hospital after step 1 of 2 with an ecoli infection I lost daddys little girl. My 2 1/2 year old at the time was daddy daddy daddy for everything. We have not had that bond ever since. Still trying to get it back. and all the issues i had after and still dealing with, put me in a depression that basically ended my marriage of 7 1/2 years.
I always feel I lost out in the days when my 3 year old wad just a little baby. I was diagnosed when he was 5 months and surgery started when he was just a year old. I had such horrible recoveries and was in the hospital most of that year. Being in the hospital I missed out on my first mother's day with him, my daughter's first day of kinder :'(, my son's first Halloween and almost his first Thanksgiving but I begged the Dr. to release me as I was getting very depressed and he knew I needed to be with my family. He sent me home with the picc line and it was great! It was then when I realized I missed out on a lot in my eyes, even the holding years of my son as a infant, but I'm here and I'm alive and that is what matters.

I've spent anniversaries and Valentine's in the hospital as well.
Lovedby2,
When I got sick again it was less than a 9 months after I had gotten married to my hubby...I missed our 1st wedding anniversary, our g-son's 1st birthday and so many more after that. My G-daughter barely knew me before the age of 2. I was heartbroken when her brother told her one day that she couldn't climb up onto my lap because it was 'broken'.
I missed the carrying them in my arms, the spontaneity of them rushing into my arms without fear of hurting me or going out to the park and sliding down the slide with them.
I am so lucky that I have been able to make up for all of that these last couple of years now that things have improved.
I know that my marriage paid a very heavy toll and nearly didn't make it...I was away in the hospital more than at home for the 1st 5 years and if not then convalescing in bed.
You learn to never take the good for granted and I think that we tend to live it more intensely than most. At least that is how I feel.
Right now I am away in the Middle East for a wedding and fighting the beginning of a blockage. I will be flying home tomorrow and am terrified of flying out in this condition but what choice do I have? Prune juice for breakfast and cross your fingers...
I won't let this stop me from living.
My heart breaks for those of you diagnosed young. I was 47 and my boys were 18 and 15. Although I have said no to more things than I would have liked since my diagnosis and through my cranky pouch,I consider myself blessed that I was healthy for as long as I was. My son wrote a letter to me on Valentine's Day and he said, "Mom, you were always there for me, and when you couldn't physically be there, it was because of your disease or your pouch. If you think I'm damaged because of that, don't beat yourself up because you did great." I share this because, as parents, grandparents, etc., we tend to be hard on ourselves and feel that our loved ones are suffering our absense more than they probably are. I think they really just want us well and happy.
A little update...the flight was hell with the usual airport delays and security issues...it took us 16hrs door to door and I was writhing in pain for the last 10.
The flight was, to say the least, hell.
This morning I went to see my surgeon for my pre-op visit (just a little foot surgery: bunion removals...ouch)
and he sent me for an ultrasound...So while I was there doubled over the radiologist decided to have an ultrasound of my belly done...no kidney stones, a piece of something hanging where it shouldn't around where my galbladder used to be (yep, I didn't quite understand it either but that is exactly what he said!), nothing that he could see of figure out from a simple ultrasound but if I need an MRI I will need to go elsewhere.
The pharmacist gave me a smooth muscle relaxant hoping that it will stop the spasms...not sure if it is helping or not but breathing still hurts my back and guts!
It is either a really, really bad inflamation of the sacro_illiac or something else in the region that is causing rapported pain or I have to go in for an MRI to check out the garters and guts...
For now I am hoping that the pain meds, anti-inflamatories and antispasmodics will get the best of this awful pain..
Sharon
hi sharon did not log in till today..your present experience sounds like pure hell..i am so sorry and feel for you..i can only hope by today you are better..my worst fear actually is to not be home when things turn bad..my bathroom,my bed,my house period..realize that is not always going to happen but it made me shutter for your experience..

wishing i hear you are better..
Thanks Rebe,
Better today (sort of). Had the bunion surgery yesterday and they have put me on so many anit-inflamatories and pain meds that I feel practically nothing...Except for the pain in my foot.
They even put me on some sort of nerve/anxiety med that is chilling me out for the rest.
The only problem is not being able to walk and dealing with a pouch.
Things will be better soon. Thanks for caring.
Sharon
Oh dear god, where do I start? Ok...life was suppose to go like this..

Work for a year to save for tuition
Study music at York University for four years
Become a professional musician (vocals, trombone and keyboards)
Also become a teacher and live a happy, trouble free life.

The reality?.....

Started to work for a year to save for tuition when I got so sick I nearly died.
Was diagnosed with UC, after multiple surgeries, dying, and being unemployed for over five years, I was left in a heap of debt with no way to pay it off.
Was too ill and too broke to attend university, so went to collage instead as a medical laboratory technician. From there, struggled between sever flare ups and stagnant unemployment, until I finally got in the hospital I now work. But then, got sick gain, and again, and again.

So, to summarize, I was denied the opportunity to attend university, and instead of being the free spirit and travel the world like I desperately wanted, I've missed pretty much every major opportunity that came my way because I was just too sick to enjoy it. Dare I say, this bloody disease, and the diseases it caused, has all but destroyed my life!

Now...with all that said, who's life turns out exactly the way they planned? Yes, my health is crap, and my future very uncertain, but, I've met so many wonderful people because of my UC, found a job I love, because of my UC (had I not gotten sick, I'd have never considered a career in health care). I'd have never known who my true friends were had it not been for my UC (when push comes to shove, you discover who your real friends are). I wouldn't have my you my darling Sharon, and Jan, and Judy, and Kathy, and Shell (and that hunk hubby of hers!), and Bill, and Dave, and...well, I'll be writing all day. You are all my family (sorry if I didn't write your name, it's just too many people). You've seen me through the most difficult times of my life, and made me smile when I wanted to cry.

So.....I guess, to answer the original question, UC has taken away so many things I can't even begin count them all. BUT, it has also given me everything. Life really is a journey, you never know where it's going to take you, but knowing I have all of you, supporting me, and I you makes all the difference in the world. Had it not been for my UC, I'd be going it alone through life, but now, I'll never, ever, be truly alone, and that's a wonderful thing, probably, the best thing, anyone could ever ask for. xoxo to you all. Big Grin
I got my illness as a child, and for some odd reason I was always in the hospital during summer and february. I remember flying in from vacation early to a hospital bed waiting for me. I also remember being prepped for surgery on my sisters birthday in July, so I missed her party. I also remember being on a liquid diet during her birthday the year before, and my GI let me eat a little bit of frosting. I remember my little sister bringing in the cake and visiting me and I couldn't stop crying. I didn't let her see me because I hated having visitors with my using the bathroom all the time and having all the tubes and machines in me. I was miserable and I didnt want her to see. I also missed my friends christmas party, which was a big deal to me since I was so young. Thinking about it now makes me so sad.
I am so sorry for those of you who got this so young and/or missed out on so much. I only had UC for one and a half years in my forties til my first surgery and I was so sad when I missed the little things with my family - parties, dinners, walks. The last three and a half years with my j-pouch had great moments and bad, the last year mostly bad, hence my decision to go to a permanent ileo. Still, I feel blessed to have had no complications from surgeries as so many here have had and to have been healthy when my kids were little. I wish for you all a sense of peace.
I try not to look back at missed opportunities too much and generally try to be a forward looking person. That being said, I feel like I lost the entire decade of my 20s to ulcerative colitis. Now that I am 51 years old, I am getting to see the children of my friends and co-workers live through their 20s, and I have noticed a few neat trends which were things I never would have considered when I was in my 20s due to UC:

1. Two of the children of my co-worker studying abroad, one doing his final year of college in England and the other studying for a semester in Florence, Italy.

2. Another kid having traveled through Europe for 6 months post-graduation.

I got my J Pouch at age 29 and to some extent I made up for the missed decade of my 20s in my 30s, but I sometimes wish I could go back in time to when I was 20 and have that decade to live over again. The problem is that you wish you could do that not only without UC, but also with the wisdom and maturity that have been acquired in the 31 years since - which, of course, is impossible.

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