Almost 25 and nothing to show for it. Especially a healthy colon

Oh Kelsey,
You break my heart...First off...get that word 'Shame' out of your life forever...poop is poop and every single human being and animal on this planet, Poop! Guys do it more openly than girls, but even the Queen of Englan poops and she does it in exactly the same way that we all do...sitting down (execpt of course for us K pouchers and us ileo-geniuses...We can do it standing up )...all of us have smelly poop, stinky poop and yucky toilet seats and bowls...so there is NO reason to feel any sort of shame. Yes, it is yucky to clean constantly and I do it and have been doing it for the last 40 yrs of my life and I do not particularly enjoy checking the seat and bowl at every poop but that is part of my life...I do it automatically now, a wipe, a swish and done...forget it...it doesn't matter, trust me...After you have cleaned a baby's strained carrots out of an icky diaper you will never feel icky about your poop again!
Next, not every one has a perfect linear life that takes them to where they want to be by 25...some of us (most of us on this site) have had some pretty nasty detours on the road to life and you are one of those people. You will just have to do things differently and make it your own...find a direction that suits you, your body, your lifestyle and your health conditon...I changed many times until I found a way to live my life and health to my advantage. In my case I had to leave home and country to find a world where no one knew me and my disease (not that the disease didn't follow me to France but...) and I started all over again at 24...it took me twice the time that most people need and more time than I would have liked but I got my life.
Most people on this planet couldn't give a crap whether or not you poop normally or in a bag a box or a bottle and most people are too busy living their own crap to even notice yours...
So start living your life as best you can and don't look back. Give up the past and move forward...don't let this disease eat the rest of your life. It has taken enough from you thus far so don't allow it to steal any more.
Hugs
Sharon

kelsey-
please look at this website. Lots of young beautiful girls .. just like you.. living with a poop disease.
http://www.girls-with-guts.com/

Your feelings are understandable. But like sharon says.. look at today and tomorrow, not yesterday. wish I could take you out for a nice long walk in the sunny weather.
hugs.

Thanks so much for your responses. I unfortunately also struggle with depression and have let myself get pretty unhealthy because of my lack of dealing with things. Living your life is harder than surviving all those surgeries and I just lose the oomph for it and feel like giving into the illness sometimes. But I began to tell everyone how sorry I was for how bad things had gotten, and haven't really done anything about it. Because in the beginning that's what it's easiest to do. I remember getting sick I didn't have to care about my responsibilities--I was sick after all!
I will just have to remember the positive things, and this site has helped a lot with my j-pouch health and sanity. Especially seeing gorgeous girls with scars makes me feel a little less ugly, like my scar doesn't define me. Thanks again.

thanks for your honesty

Kelsey,
Baby steps.
Some days I get crazy glued to the sofa too and just don't want to get up and do the even most mundane things so I give myself itdy, bidy managable goals. Like water the plants or put a load of laundry in. It isn't much but it gets me started and makes me move...I give myself 10min goals. 10 mins. is just enough to force me to get up and not so much that it intimidates me...eventually I can link a few 10 mins periods together...like pick up the dead leaves after watering or...well, you get it...it is just tiny, doable chunks of motivation.
Don't Try to bite off the whole thing at once or it will depress you to death.
And don't forget to reward yourself for good behaviour too. (in my case it is ice cream but that is a whole other issue!)
Sharon
ps..you are absolutly beautiful.

Kelsey, I too had an eating disorder and suffered from UC. I felt at times the my eating disorder helped bring on UC, but I can safely say that is not the case. Like you again, I spent most of my 20's in a hospital. Either eating disorder recovery units or for UC. My life was on hold for a good 8-10 yrs, but it's now back on track. You still have plenty of time to get your life in order. Focus on where you are and not where everyone else is. That will drive you crazy no matter who you are.

As far as the poop. I am fortunate and have a great friend who I can confide in about anything poop related. This site and other j-pouch sites are also great. It helps reduce a lot of the shame that comes along with this disease.

Kelsey,

Just to let you know that you aren't alone. I'm 24 years old and was diagnosed/lived in the hospital when I was 19. I also have multiple diagnoses aside from the UC-although I can not speak to your journey with an eating disorder. When I first got diagnosed I was constantly worried what other people thought of me. I was lucky to have lots of friends that understood and were supportive. I would like to extend that support to you, if you ever need to talk feel free to message me. Just because you aren't where you thought you would be at 25 doesn't mean that your life isn't on the right track, don't lose hope it DOES get better.

If you have depression/eating disorder you should find a local center that treats that. Finding someone to talk to is a great next step. Also, find a local CCFA support group and maybe you will find a friend your age who can relate.

I feel the same way as you in a lot of ways. I'm 25 now, been going through uc and surgery rollercoaster since I was 13. I am not even close to where I expected and hoped to be by this point in my life and it couldnt be more frustrating. I TOTALLY understand where youre coming from! Private message me if you ever want to chat : )

Just want to follow-up. I'm not totally clueless. I've been in therapy for my eating disorder since I was sixteen, I'm doing much better now. I've been seeing my therapist for six years, she started out as an ED/Depression therapist but was there through my whole surgery. My medications help me a lot, if you looked at me you wouldn't know I'm crazy, and if you didn't ever go to the bathroom with/after me you wouldn't know I didn't have a colon. I have tried e-mailing/PMing a couple of you, if you still want to chat I am still open to!
This is all just a work in progress! I wish I could just tell everyone I was 23 because I lost (at least) two years to the surgeries, obviously more from the UC itself. Am I going to age faster now that I don't absorb as much water? That's going to make it especially difficult to keep up the "I'm really two years younger than I actually am" facade. I'm not ready to settle down yet. And I don't have to (do I?).
Thanks!

quote:

Am I going to age faster now that I don't absorb as much water? That's going to make it especially difficult to keep up the "I'm really two years younger than I actually am" facade. I'm not ready to settle down yet.

If you mean are you going to look like Lindsay Lohan who was a pretty girl but now looks like she aged 15 years in the last 5 despite not having IBD, I would say no. I am 49 but look 40 according to most people, this mainly due to genetics on my father's side of the family in which everyone seems to age well and the males do not get gray hair until their 70s. But I have had no colon for 20 years and I look better now than I did when I had it out at age 29, this is the honest truth. I still have eyebrows and body hair which mostly isn't gray (it's dark brown with a slight reddish hue). There are a few random gray hairs here and there, in my beard and chest which, if I was really vain, I could easily make disappear.

Lindsay looks the way she does because of too many pills and too many parties and not living a healthy life. As long as you do not live your life in the same fashion, your chances of looking good for a while are pretty good. Honestly I think it is mostly genetics in terms of how most people preserve their looks as they age. But how you choose to live your life is a factor. If you look at mug shots of street people, drug addicts, street walker prostitutes etc., you will see what I mean.

My skin happens to soak up all the sun I get so having that healthy glow always helps.

As far as not absorbing water as well, without a colon, you drink a little more fluids and make sure your electrolyte intake is at a healthy level. If you do this, then not having a colon will be a non factor in impacting your appearance going forward.

Kelsey,
Life is not linear...sometimes we need to step back to move forward...I have lived colonless for the last 33yrs of my life and now, at nearly 52 look about 40...healthy living (other than the bulimia of ice cream, chocolate etc)...I lost years...high school, university etc...I used to tell everyone that I was 39 when I was only 25...everyone told me how great I looked for my age!!! I felt 39 in my head so for me it wasn't a lie (not exactly)...you are how you feel and it doesn't matter if you are 15 or 50...just live your life forwards and not backwards...you will never get those years back but end up destroying the future worrying about it...it is over...And no one cares about those years but you...others look at who you are not who you were...it is finally time to let go and enjoy your life...I am giving you the permission...go forward and be young, happy and healthy and don't let anyone or anything stop you...just heal your body and mind.
Hugs and hopes that things will get better
Sharon

Thank you DJBHusky and Sharon! I am always up on pedialyte and smartwater and coconut water and--suffice it to say I do make an effort to stay hydrated, so that's encouraging. I think I will look better once I feel better!
And Sharon--once again you are right! When I was 21 and coming out of surgery I felt about twice my age! By twenty two I felt thirty, and maybe that's why I have a problem with getting older, because I missed those years in terms of what my friends do. But there's a lot I did experience that no one else ever will so I'll try harder to count blessings I had with my colon, how awful it was being sick, and how far I've come.
I think finding a friend my age with UC or a J-pouch would be beneficial so we can avoid the drinking that some of my friends still do. I can only hang out with them a few times a month at most because of this. I could definitely eat better and work out more. Pizza is another big thing in your twenties. It's all a work in progress, things are going well now that I'm back in school. Although I could have better managed symptoms... but, again, so much better than two years ago.

Kelsey,

Don't choose your friends, or boyfriends, based on health issues or lack of health issues. Friendships are built on common interests, loyalty, trust and mutual respect. Those should be the only criteria in choosing your friends.

I feel as though I lost my entire decade of my 20s due to UC. Specifically, not being able to travel with my friends. I more than made up for it in my 30s and 40s. Kelsey, you have many years in front of you to live, too many to worry about what you may have lost already. There is more than enough time to make up for it!!!!!!!!!!!!

As far as pizza and drinking I still do both. I am not a big drinker but I went to a military funeral on Saturday (for a co-worker's father) and afterwards went to a reception at which I drank a "Blue Hawaiian" and 2 "Blushing Irishmans."

You are way too young to be having thoughts of having wasted portions of your life! Get on the horse and ride girl!!!!!!!!!

Great advice for all of us! "Get on the horse and ride!!!" Thanks, Husky!

Sometimes I feel a bit behind as well. I look at my friends and where they're at and I think "well damn, seems I missed a step somewhere". I think that for a moment but then I think this:

I can be delayed, deterred, postponed and paused, but I will not be denied. I may be a few years behind, but the hell if I'm not going to get to where I was going.

You'll get to where you're going too.

Heck, there's plenty of "kids" of 25 with nothing to show for it, and they don't even have an excuse! Even without obstacles like health issues, I think it is getting more and more difficult to navigate the world and become independent. In my parent's generation, you could graduate high school and learn a trade as an apprentice with nothing more than an invitation. For my generation (in California at least) virtually anyone with a pulse could go to college and earn a degree or certificate leading to a career. Now, they have lotteries, sky high tuition, and serious competition.

So, don't be too hard on yourself. Two years will seem like a moment in the grand scheme of things. It just seems terrible now when you feel like life has been passing you by. Don't think of it as a total waste either, because conquering an illness does have its rewards. You learn about resources within you that most young people never have to know about until they are much, much older. Believe me, it will make you a more mature and grounded person in comparison.

Jan

quote:

I think it is getting more and more difficult to navigate the world and become independent.

Back in the 1980s my sister left home at age 18 to attend Georgetown University and she never returned home. I think that is exceedingly hard to pull off now, even for those who are extremely independent minded like my sister is, and was. It helped that she got a few scholarships along the way including one to attend grad school but absent those things happening, it's insane what has happened with college and grad school tuition.

I paid off my law school loans exactly 6 years after I graduated. I spoke to a recent graduate of my law school and at $45,000 per year, he is $135,000 in the hole, plus interest, on his loans. He and his girlfriend are roughing it in a cheap rental until they can get these loans paid off. What a brutal prospect.

On the other hand, I think it is also forcing our young people to grow up earlier which in some cases, may be a good thing.

Kelsey mentioned in an earlier post when is it time to settle down. If by settling down she means getting married and having a family, it's hard to do that when encumbered with such debt.

My best friend in high school took 10 years to get through medical school in Europe. There were times when his family was thinking it was never going to happen for him. I recall many conversations with his father in which he expressed to me his bitter disappointment in his son.

Then, after 10 years and 3 different medical schools in Europe, he finally graduated. After he graduated and came back home, he almost immediately met and fell in love with a local girl. Before he got engaged to her, he called me up and asked me to go out for lunch with him and we discussed whether he should get engaged. I told him not to do it until he passed his exams and had a job. He didn't listen to me, or his family who told him the same thing.

He got engaged, and his fiancee immediately got pregnant. It then took him a full 3 years before he passed his exams and got into a good residency program. He still did not know what area of medicine he wanted to specialize in. Amazingly, he was accepted into the residency program for psychiatry at one of the top schools in the USA, which has a teaching hospital. I don't know how he pulled it off, but he is a really good talker but at the same time has a professional demeanor, and they must have sensed he wanted it.

After rising up to be Chief of the Dual Diagnosis unit at a very prestigious, well known mental hospital that caters to celebrity clients, he is now an extremely successful psychiatrist in private practice. His success was a VERY LONG time in coming, and it both surprises me and doesn't at the same time. He is probably the biggest success of all my high school friends who have all gone on to have decent careers in their chosen fields. I think in my psychiatrist friend's case it was a combination of a good work ethic instilled by his family, and a personality that I believe is perfectly matched to that profession.

The hardest thing for most young people is to find their niche. My friend took 13 years after starting grad school before he discovered his, but as the saying goes, better late than never.

I'm just curious about sharon having "bulimia" of ice cream and chocolate?? Do you really purge those things? Isn't that really sick? I mean that's like saying you have a healthy lifestyle but shoot up herion occasionally. I take exception to someone advocating bulimia to a 25 year old girl who has clearly struggled with an eating disorder.

I think she probably meant just the binge part, not the purging, but a valid point...

Jan

Sorry Sam, maybe I was not clear...I do not and never have 'purged' in my life...binge, yes...but no purges...and I did not suggest it as a lifestyle choice for others...I use ice cream or chocolate as a reward to get myself moving...or for having accomplished something great...but I am far from most 'clinical bulimics'...my spluges resemble a tripple scoop or a chocolate bar and not a gallon or 3lbs.
Sharon
ps...not all bulimics purge...some of us just comfort eat.

quote:

at nearly 52 look about 40...healthy living (other than the bulimia of ice cream, chocolate etc)

Thanks Jan, but if you look at the quote from her above she's claiming to look years younger and the next thing is bulimia. Usually it's those that think they look young are the ones who purge and do weird destructive things to stay that way. If you are correct and she meant binge then I have another point about her I would like to make. She throws out advice OFTEN it seems before really thinking it through. For example she gives advice to pregnant women w/o ever having children and advice to men on adult circumcision w/o having a penis. That's just the tip of the iceberg. I would hope people would give thoughful pause before giving support and more so when giving advice. You Jan are an RN with a lot of experience and know the difference between bingeing and bulimia. Sharon just seems to stand out to me as a loose cannon when it comes to advice and repititious about getting up and going because she does. Not everyone is able. There are a lot of really sick people that can't get out of bed or leave the house because of fear of accidents or pain. Her advice more often than not is to do a rigerous work out to get through the pain. I also see her often jumping right on the sex stuff. Like what positions work or how soon after takedown to have sex or alternatives to penetration after a jpouch take down--she has a kpouch. I can't tell you how often I see her advise on jpouches where she has NO PERSONAL EXPERIENCE!! Sorry for the rant but this bulimia comment finally was the last straw. I also apologize for going off topic on this thread.

Bulimia Nervosa does include bingeing and purging ALWAYS, either by vomiting or laxatives. Get over it and admit you used the wrong term if you aren't bulimic. Look it up!

Not a problem Samantha1803...then I just binge...here where I live (France), bulimia is classified as an uncontrolable urge to eat (linked to the psyco-sympathetic system and not the cognitive system therefore considered an axiety disorder and not a mental disorder)...It is believed to be part of a natural survival instinct to procure food and binge while it is availible and can be directly linked to PTSD, childhood trauma or a lack of Anchorage (feeling tethered to this life).
Don't know what the definition is over there but these things vary country to county...I neither purge nor do I use laxitives (I have a kpouch...I can not throw up other than post-op (and wouldn't want to nor can I use laxitives...What would be the point?)...but I do exercise a lot.
But this post is not about me or my medical terminology. It is about someone else and their issues. Sorry for the miss...won't repeat it.
Sharon

Yep....get rid of that word "shame"....I didn't start feeling better and get my life back until I started "pooping" in a bag...while I don't love it...I got my life back.

For the record, I knew what Sharon meant. People get bingeing and purging confused. It's not really a part of my life anymore, anyhow. After throwing up involuntarily so much after the UC and screwed up surgery I don't think I'll ever purge again.
Eating Disorders are confusing conditions, as a girl who dealt (and deals) with the treatment of eating disorders, I know this happens all the time to people. Bulimia and Bulimia Nervosa are two different things. Much like how Anorexia Nervosa is an eating disorder, while anorexia itself just means you have no appetite.
And just to stand up for Sharon, you're posting or reading threads on a public forum, you can choose to ignore something you don't want to see, because it has all the right in the world to be posted. I think the problem is that you've developed a hatred or annoyance of an online user open enough about her own experience and willing to help others in similar situations. Personally, she has been helpful to me in the past. And I'm offended you're having this argument here, it's immature and you can send each other PM's if you like.
That said thank you again to everyone for the encouraging advice, I will come back to this page often for reassurance that my life is not over at 25!

Kelsey, the fact that you want more out of life is a testament in itself that you are probably healthier both physically and mentally than you give yourself credit for. It seems like you have a lot of insight, which many folks your age do not. Sure, you had to deal with a lot of crap to get there, but certainly not years down the drain.

After a UC diagnosis just shy of my 16th birthday, and a month in the hospital recovering, I had gone from 120 pounds to 89 pounds in less than 3 months. I was binging like crazy, but no purging. It was all UC. Even though I did not have to have surgery for decades, UC still impacted my life. But, it also made me be able to prioritize and set goals. I was able to get through high school, get my RN, get married, put my husband through law school, and have two children. All normal stuff.

It's OK to hate your predicament, but you cannot let it define you.

Jan

Well said Jan,
I am presently dealing with my 16yr old cousin who was diagnosed with a rather nasty sarcoma...he is in grade 10...I have been trying to find the words to give him some sort of hope and solace while he goes through his chemo...trying to use my experience of years spent in the same hospital at the same age...and how to make him feel that he has not lost his "youth".
The only word that I have come up with is, Dream.
You have to have dreams...little ones in the begining...not going to the bathroom 20xs a day or not vomitting your guts up at every smell...then being able to go to school, have a friend or drive a car...and finally the big ones...
It doesn't matter what you lived through as long as you have a dream to live for. There are days when you won't be able to get out of your pyjamas and others where you think that you can take on the world...it is the dreams that we dream that help us to make it to the next day.
You sound like a girl who has a lot of dreaming and living in you...so go for it. Even if you still have some of those pyjama days...just keep your eye on the dreams.
Sharon