Things Ive lost to Crohns

[Zman]

I've had Crohns for 31 years and I am new to this forum. As I have read the post on this forum it started me thinking of how this disease is not just costly monetarily , but it cost much more than that. These are things I have lost through the years due to Crohns feel free to share your own. I will follow later with things I have gained due to CD.

Things I've lost ;
Hit me at the age of 16 , a chance for the olympic trials in boxing. Caused delayed puberty ( yes it can do that ) no social life in high school. Lost many days in college due to illness had to retake a semester that caused me to lose a major job with an oil company. Lost friends in high school and college to sick to hang out and party. Lost many hours in the restroom. Many hours of sleep due to prednisone. Lost out on going on many trips . Lost many feet of my intestines. Lost my Colon. Lost my wife. Lost a fiancee . Lost a girlfriend. Lost my credit.( Cant work cant pay bills many many hosp bills ) Lost my dignity. Lost my fear of needles. Lost my modesty. Lost my brother ( died from crohns ) .Lost a few jobs.Lost hope at times. Lost a few teeth ( thanks pred. ) Lost weight many times over. Lost my anus LOL illeostomy.
Well many of you can relate . We all know .

Zane

 

[danman]

Zane, good thread...

I've now lost the pleasure of sitting on the toilet and reading a good book/magazine. (ileostomy)

On that note, I lost hours of my life sitting on the toilet reading!!

I've also lost my dignity on several occasions.

I've lost blood that I was very attached to.

I've lost the respect of co-workers on occasions, that didn't understand my situation.

 

[chuckmanley83]

Thank you for posting ZMan. I always tell myself that everyone has a cross to bear, so to speak. No matter how bad someone has it, someone has it worse.

 

[MINI Cooper]

What I've Lost:

• My inhibition
• Too much weight
• My appendix
• Many meals, and for months the ability to feed myself.
• My physical strength
• A lot of blood
• A lot of veins
• Friends, who I guess were never really good friends if they didn't understand.
• A couple jobs
• Countless opportunities
• Time in general
• My mind, at times

What I've Gained:

• A new perspecitve
• A stronger self, mentally
• New friends, who DO understand!
• Battle scars

 

[Jeff D.]

I've lost:
Friends
Humility
Height
Weight
Myself at times
Soccer

But I have gained so much more. I have met someone wonderful people on this forum. I met my wonderful girlfriend who I never would have met if I didn't have Crohn's, my faith, and my love for art of all forms. It's in what you have lost that you can find what you have gained.

 

[drew_wymore]

I've lost

My home even though it was an apartment.

Most of my stuff that went into said apartment, had to sell it no room to store it and some of it was sold to pay the mounting medical bills

My job

Many productive hours/days and months that I could have been doing something else

Weight

Lots of money paid to doctors, hospitals, insurance companies and pharmacies.

What I have gained

Many new friends here on this forum.

A renewed perspective on what's important in my life

A profound appreciation for life and everything that comes with it, I try not to take anything or any day for granted.

Learning to not be judgemental of people or look down on their conditions. It may not seem like much to me for $person to have to deal with $x problem but it might feel the weight of the world on their shoulders.

How to enjoy food, it's no longer a basic part of living to just eat. Enjoy the moment and cherish the fact that I am able to eat because sometimes I can't.

 

[cheeky]

I've had Crohns for 31 years and I am new to this forum. As I have read the post on this forum it started me thinking of how this disease is not just costly monetarily , but it cost much more than that. These are things I have lost through the years due to Crohns feel free to share your own. I will follow later with things I have gained due to CD.

Things I've lost ;
Hit me at the age of 16 , a chance for the olympic trials in boxing. Caused delayed puberty ( yes it can do that ) no social life in high school. Lost many days in college due to illness had to retake a semester that caused me to lose a major job with an oil company. Lost friends in high school and college to sick to hang out and party. Lost many hours in the restroom. Many hours of sleep due to prednisone. Lost out on going on many trips . Lost many feet of my intestines. Lost my Colon. Lost my wife. Lost a fiancee . Lost a girlfriend. Lost my credit.( Cant work cant pay bills many many hosp bills ) Lost my dignity. Lost my fear of needles. Lost my modesty. Lost my brother ( died from crohns ) .Lost a few jobs.Lost hope at times. Lost a few teeth ( thanks pred. ) Lost weight many times over. Lost my anus LOL illeostomy.
Well many of you can relate . We all know .

Zane

wow... i'm sorry for your losses.

reading this made me sad... i'm starting to wonder if visiting this site is only gonna make me worry more about crohn's .... for instance, seeing your story and others, reading how bad things can get or how much hell people go through... makes me not look forward to the years to come...

on the other hand, i've been trying to think positive, and imagine that i can some how get into remission and stay there...

maybe i'm in the 'denial' stage somewhat.... i just don't want to think about the horrible potential this disease has.

i was only diagnosed dec 16th 2008...

anyway... yeah, it's probably a good idea i take a break from this site... i need to focus on positive thoughts... whenever i come here, i get really freaked out.


thanks everyone for the info and support though. best wishes to you all.

 

[Jeff D.]

Exactly kim! You hit the nail on the head and that's why I posted what I have gained. You have to look at what you have lost to find what you have gained although sometimes what you have gained can be hard to see.

 

[Jeff D.]

Thanks here is a big hug back.

 

[kello82]

aw kim that almost made me cry. seriously, it was really really sweet and touching to hear words like that.

definitly i am 100% on the same page as you guys. what ive gained from my life experience with this is so much more than what ive lost or could ever lose. for me it was my whole childhood and all the experiences, opportunities, and friends that should come with it. but when i am deep down brutally honest with myself, i would not trade it back.

losses force you to look at what youve got left. i think that makes us all better people.

 

[Agent X20]

I've lost a lot of ignorance about the disease I've had for 35 years (OK... losing ignorance is a bad expression... I've gained knowledge, but I wanted to fit in with the "loss" theme)
I've lost a lot of fear and trepidation regarding surgery... should it become necessary.
I'm impressed that so much positive stuff has come out of the loss thread...
Well done, guys!

 

[garygepner1]

Things i've lost to CD

Great thread.
The things I have lost due to crohn's: My continued college/Job career as an EMT/Paramedic first responder. I passed in the top ten in my class.
I also passed my fire fighter agility test and was excepted into the fire academy and had to give up my spot in the academy due to being hit with CD hard, for the first time in my life I felt I was doing the right thing for wanting a career in helping the people who need it most and now look who needs it, me(the medical Training/knowledge has helped though). I was in and out of the E.R. 32 times that year, which was my first year of being diagnosed with the disease.
I live in a small town with my wife and two kids, we went to our local resturant to eat one day and the waitress asked what my secret was for losing weight, I politely told her I was sick with CD, I went from 230 to 150 in a mater of a few months. So I lost a little self asteem that day and gained a complex about being too skinny.
I also lost my ability to plan for tomorrow as I do not know from one day to the next if Mr.CD will allow me to do things.
Its taken a foot of my intestines, so far.
Its taken my work life (money) away,now on SSI, afraid to do anything really.
Its taken some of my happiness and dignity as well.
And I am sure there is more to be taken in the future as well but I hope not atleast.
This is a great place to talk thank you for your thread FRIEND!!

 

[Zman]

Hi Guys ,
First let me say this Cheeky if your still around I use to be the same way I would never look at these forums because a lot of people had it worse than I , But since then I've experienced many things due to CD . Don't let it get the best of you always fight it.
What I Have Gained:

Much Knowledge on this disease to be able to help others , I recieve a lot of phone calls to guide people in the right direction

Empathy and understanding of people who are sick

Patience , I always believe the worst will pass and there are better days

Many friends in the medical field

FAITH if it wasn't for this I would not have made it this far

AN appreciation just to see the sunrise another day
for the small things a childs laughter the beauty of a sunset

With all the time off i was able to see a lot of this world ( yes I did travel sick )

I gained a high pain tolerance and the ability not to complain much about anything because I've been at tha bottom

I gained a great sense of humor somethings you just have to laugh

All the things I've lost have made me a better person today I don't take things for granted not even the air I breathe When something bad happens in this world or our personel space , I can look at it and say well at least I'm alive today and it can always get better.

There is a question you can ask yuorself " If you could go back in time and just change one thing in yuor life ,what would it be ? " For me not a thing my life may not have been perfect may have lost many things but it all has made me the person who I am today Have met and helped many many people because of CD have grown in so many areas . So what I have gained far out weighs tethings I've lost. I would not change or trade any of it.

We all fight for the same cause to support one anoter and to make it another day with a smile on our face because CD is not going to get the best of us.

Enjoy life while you can and smile even wit CD it does get better.

 

[Nancy Lee]

Welcome Zane...
and also a welcome to Cheeky. ...I do hope you stick around.

I have found that the most important element in fighting Crohn's
is a positive attitude.

In the 12 or 13 years since being diagnosed I don't think I have
ever sat down and listed what I have lost to this disease.

I can tell you what I have gained..
A deeper faith in God.
A fantastic support group through my family and the local CCFC Chapter.
An amazing group of caring friends.
I found a love of writing, editing and creating videos, and photography.
I found I have greater courage to face the unknown than I ever imagined.

And so much more....so very much more.

I have pretty well stayed in remission for almost 10 years..
and my doctor agrees it has a lot to do with a positive outlook.

 

[rottengutgirl]

Hi Everyone...
I can relate to a lot of the things lost as well...especially my money and friends. I lost my boyfriend of three years, 20lbs...I'm only 5'3 125 at my best, and lots of hair thanks to prednisone.

I know it sounds very superficial but I think that losing my hair was the worst part...the surgeon that removed my intestines was really good and I didn't have any pain afterward...but when my hair fell out it looked like I was sick and made me stop talking to people at my job and outside of work. I think people just thought I was a jerk....but if anyone asked me how i was feeling I'd have to lie and say "great....thanks for asking" or I'd cry and loose it completely. So I just didn't socialize at all...for like 6 months.

so I chopped all my hair off...its starting to grow back and I'm doing much better emotionally.

Living with Crohn's is a challenge....I can't say its made me a better person but I can say its made me more aware...of everything!

 

[ChronsSUCKS]

Lost; Friends who dont understand and think crohns is a big vacation.
Social life in my youth/meaningful relationships and experiences that should come with that. Big depressions and anxieties, drug addiction, hard years and wasted time.

Gained: Growing up in a poor ghetto neighborhood, losing some friends and discovering my own intellicenge and ambition kept me mostly away from criminal lifestyles. Made me a more understanding person... there are people who in their whole life cant appreciate what hey have and constantly judge others. Gained toughness wich drives me that most people dont ever have.

We all lose countless things, but like kello82 said its more important to think about what you have left. Or even what you've gained, this is what can make you a good person. The past is gone, even if it comes back in another flare...

The pain can come back, but your personality will ALWAYS have its good traits even if you sometimes forget about them. So always remember what you have gained, and try to accept what you have lost. Because you may be better off without some of those things anyway. And thanks for making this thread, i'm sure this is something thats on everyones mind pretty much!

 

[Nikki Lynn]

i love this post.

ZMAN and everyone else that has shared I love this post! I'm also a new Crohn's sufferer (diagnosed 12/23/08- SOO not what I wanted for Christmas that darn Santa must have confused me with someone else!!)

I realize everyone thinks its sad to think about what we've lost to Crohn's and it is. But I hate to say I find some humility in the things written, because I have been there too. Things like loss fear of needles. Lost countless hours in the bathroom. All sad but soo true.

so far i've gained:
new friends who get my pain!
courage to face things that are soo challenging
the ability to swallow 3 huge pills at a time
an ability to manage my stress much better!
a faith that i felt failed me before, but now realize I had failed it!

 

[jamie2462]

wow... i'm sorry for your losses.

reading this made me sad... i'm starting to wonder if visiting this site is only gonna make me worry more about crohn's .... for instance, seeing your story and others, reading how bad things can get or how much hell people go through... makes me not look forward to the years to come...

on the other hand, i've been trying to think positive, and imagine that i can some how get into remission and stay there...

maybe i'm in the 'denial' stage somewhat.... i just don't want to think about the horrible potential this disease has.

i was only diagnosed dec 16th 2008...

anyway... yeah, it's probably a good idea i take a break from this site... i need to focus on positive thoughts... whenever i come here, i get really freaked out.


thanks everyone for the info and support though. best wishes to you all.

Hi Cheeky,

I was also just recently diagnosed. I like coming here because it's better to hear about other people's experiences with things...I don't know about you, But I'd rather at least have heard about these things before my doctor mentions them.

'So far one surgery down (a minor one for fissures/fistulas) and who knows how many to go....honestly the only part of that whole OR experience that bothered me was waking up coughing (on account of the tube that they use of course...no one told me about a tube...sure I've watched shows...but I didn't think about a tube when they were rolling me into the OR...and THOSE HOT BLANKETS they cover you with...I cant stand being too warm...I think I must have drove the nurses crazy asking them to take a couple of those damn things off...and then a new nurse would cover me again. O LORDY!! :ylol2:

Drop me a line anytime...since we have crohn's and it's for life, we might as well be as knowledgable as we can be about it. :smile:

 

[jamie2462]

and in response to the thread...
HAVE LOST
-Blood
-shame in talking to doctors and med students about my condition...bring them on!!!
-time from work
- time on the toilet
-sleep
-time from my family and friends
-Money (WOWSERS)

GAINED
More strength
Increased my pain threshold (10X)
Friends - new
Experiences ( and wouldnt change it for anything)
Additional "holes" - which have healed but that was a rare experience for me. lol Ouchie.
Perspective
New Diet (A lot healthier and better to myself then I used to be)

 

[Zman]

Im back after a year . I was on Tysabri it caused a severe mental break down had to stop it. Disease remained in remission for another year. Now its back . Drs cant cut on me anymore , Ive grown immune to all meds, Now Ive lost the will to fight this any more so the the last thing I can lose to this disease is my life , honestly it sounds like a better alternative .

 

[ameslouise]

Zman - I am sorry to hear about the last year being so horrible.

I am even more sorry to read about your lack of willingness to keep fighting. I hope you can find the strength to seek help and not give up.

Life is worth living, but it sure doesn't seem like it when you are having endless pain and seemingly no options left.

You look young and healthy and handsome in your smiling profile pic. I hope you can find that person again. I am sure he is still in there.

Take care - Amy

 

[Claire617]

But since then I've experienced many things due to CD . Don't let it get the best of you always fight it.

Wise words there

I couldn't have said it better myself Ames!

There's a great thread around here on stem cell treatment by Mr Ziggy, he's currently undergoing it and it looks really hopeful Might be something you're interested in if all other options have been exhausted.

 

[Nancy Lee]

Hello Zman.

I feel so badly that you are having such a rough go of it right now.
I do wish you would hang on and try to find some positive things
in living with this disease.

As far as being immune to all the meds now...
there are new ones coming out all the time and I would hope
that your doctors are on top of your situation and are watching for something
you can take.

I'll be sending positive thoughts and prayers your way. :hug:

 

[Crohn's 35]

HI zman, I know what you mean and I said those words yesterday...but my husband and I are seriously looking up LDN. Cimzia isnt here, Humira didnt work, and highly allergic to Remicade and Methotrexate made me sick and flared once a week. Prednisone and other antiobiotics have done me in too.

Have you tried metho and remicade? Don't give up, there is something out there, you have to try. I know I have to fight too!

:hang:

 

[merrywidow]

i lost my belly button (ileostomy surgery)

and i want one back please.

 

[garygepner1]

Im back after a year . I was on Tysabri it caused a severe mental break down had to stop it. Disease remained in remission for another year. Now its back . Drs cant cut on me anymore , Ive grown immune to all meds, Now Ive lost the will to fight this any more so the the last thing I can lose to this disease is my life , honestly it sounds like a better alternative .

Hey buddy! Just hang in there they are getting so much closer with stem cell research involving CD and looks to be a promising cure, so you just hold on as long as you can to see this day come for you and the millions more with this disease. I too get tired of it and want to quit from time to time and I give up on meds as well especially when they land me in ICU for 17 days but i still keep truckin. You cann't put this old dog down that easy, atleast not yet anyways lol. So you just hold-up k we are hear for your support should you need it friend.

 

[Swirl]

Wow, really nice thread.
That's a lot lost.
For now I would just say lost a really good job I liked. Along with the people I worked with and the wonderful free food we had (Food Cathering company). Along with an extra $100 a week to my paycheck which I wasn't used too lol.
I kind of lost more of my mind too...
Man, lots more people out there going through it all.

This has me thinking more on where I would like to live and jobs.

 

[Mountaingem]

I'll list the things I've gained first:
Unconditional love
My husband-only he could make me laugh in the ER
My best friend-the only person that would drink Go Lightly with me
Iron will
My dark sense of humor and irony
My voice, being able to speak up for myself and others
Determination
A means to spot people's true colors quickly, and weed out the idiots
A means to spot the beauty and good in people
Empathy and compassion for people's suffering
Tons of experiences that aren't funny at the time but provide lots of laughter later on.

Things I've lost:
My lunch,(dinner, AND breakfast)
Control of my bowels
Many people I thought were friends, who weren't really my friends at all
My dignity, at times
M inhibitions
My uterus and appendix
My sense of self
My misguided pride
My career as an artist
The ability of have children
An ocean of tears

 

[ameslouise]

i lost my belly button (ileostomy surgery)

and i want one back please.

I have one... it's just moved over a bit to the right!

I've lost some body parts, but luckily can live without them
I've lost any inhibitions I had about sh*tting in public
I've lost my fear of dying
I've lost the notion that work takes precedence over my health
I've lost a bunch of weight and love being skinny!
I've lost any self-pity I felt at my initial diagnosis
I've lost the misguided notion that this disease can control my life

 

[EthanPSU]

I hate to view things negatively so this is what I gained....

Gained my positive thinking lifestyle
Gained my outgoing behavior
Gained my maturity at a young age
Gained more social skills

Sure there has been things that I lost.....But as lost means...they are lost and are gone. So I stopped thinking about them and am just looking forward! And I cant wait to see what is ahead of me

 

[Procyon]

That's a nice way of looking at things, Ethan. I wish I could. I feel like I'm bummed out all the time and too negative. People off the net have always been telling me I need to smile more lately, haha.

So I guess, to that effect, I've lost my ability to think optimistically a lot of the time. I've lost my ability to be outgoing and now I have like no friends, so I'm kinda lonely. And I've lost my social common sense. I'm kinda paranoid and I feel like everyone hates me for some reason. I've lost a lot of self-confidence. And I've lost an awful lot of faith in my Catholic religion. I've lost any sense of normalcy in my life. I feel so different from other people my age, like Kel said above, I kinda feel like I lost my childhood. Well, this is turning out to be a pouty post. :crab: I'll think about what I gained now.

I have gained this sort of funny gallows sense of humor. And I've gained this sense of purpose and determination, I guess...I know exactly what I want out of my life, and the Crohn's certainly helped me to figure it out. (My bucket list includes two items: have a (hopefully) long career as a doctor and try to improve the quality of life for people who deal with crap like this. Marry a wonderful woman and have a cute family.) The ability to see the best in people. Even if I am a bit more shy now, I definitely feel like I love people more in general. And the little things never bother me anymore. I feel like I've pretty much become the chillest guy in the world from this, because I've just had to roll with the punches so much. So that's a good thing, I guess.

This was a good thing to think about... As much as some of the losses hurt, it's good to know that there are some things which I gained.

 

[EthanPSU]

I've lost a lot of self-confidence. And I've lost an awful lot of faith in my Catholic religion.

Ok...That made me relize thats the one thing Ive lost also. Ive lost all religion, labeled as agnostic now. But thats a whole other issue lol

 

[xxNoGodxx]

I've lost

My home even though it was an apartment.

Most of my stuff that went into said apartment, had to sell it no room to store it and some of it was sold to pay the mounting medical bills

My job

Many productive hours/days and months that I could have been doing something else

Weight

Lots of money paid to doctors, hospitals, insurance companies and pharmacies.

What I have gained

Many new friends here on this forum.

A renewed perspective on what's important in my life

A profound appreciation for life and everything that comes with it, I try not to take anything or any day for granted.

Learning to not be judgemental of people or look down on their conditions. It may not seem like much to me for $person to have to deal with $x problem but it might feel the weight of the world on their shoulders.

How to enjoy food, it's no longer a basic part of living to just eat. Enjoy the moment and cherish the fact that I am able to eat because sometimes I can't.

Was going to post darn near the same thing as you, so I'll just go *ditto*

 

[Kate77]

what i've lost-
a chance to be a professional dancer.
friends
my childhood
my mind at times
almost my life

what i've gained-
perspective
friends (that understand and accept and love me for who i am)


i always feel that crohns has stolen a lot of things from me, but then i always think it could be much much worse.

and i've gone back to ballet after 7 years. it feels amazing.

 

[phillycrohns]

Zman:

Your post brought tears to my eyes. I am so sorry that you are not doing well. My heart aches for you. I hope you somehow regain the fight in you along with your will to live. With all that you have been through, I know you are a better person for it. And we need more of those kinds of people in this world. So I am rooting for you. Please don't give up.

Chris

 

[Silvermoon]

i lost my belly button (ileostomy surgery)

and i want one back please.

I have 2 - one from a feeding tube when I was younger... you can have one of mine!!

All my surgery scars manage to detour aound my actual bellybutton....
:frown:

 

[semicolon306]

Colon
Sitting on toliet
being the quickest to find a rest room in a public place

It has honestly made me a stronger person, more then a negative person. Everything happens for a reason. Have to play the hand you are dealt, even if it is all jokers - JUST bluff WELL

LMPO

 

[Aura]

Interesting thread

I need to be mindful of the past to be better prepared for the future. I look at my life holistically:

I have lost:
My dignity to many doctors, the guy the sexually abused me and that guy that raped me
My husband who thought I could not communicate
Respect from colleagues that just dont get it
A business, money and my house
my good health

I found:
Strength and resilience when I learnt to like who I am as a person
Another husband who loves me very much
Happiness in having nothing material but so much that is intangible such as true love, friendship, coming to terms with my own thinking about my thinking and knowing about my knowing
Respect from colleagues when there see you come through and be positive
that i now collect 'ologists (Gyno, gastro, uro, neuro, psych)
a group of new friends that are very supportive - right here in cyber space
Thanks to you all :rosette1:

 

[SilverWillow]

Hmm luckily, my body parts are intact as yet. But there's time.

I've lost:

Dignity
Money
Time
White cells
Blood
Freedom

I've gained:

A new perspective on life
Spirituality
Support
Friends (who undersand)
A whole new attitude - I never know when i'm gonna be laid up with this crappy disease so now I do what I want to do, lifes too short to worry about what other people think

 

[silver]

I've lost:
My faith,
My blood (on many occasions)
My confidence
A first on my degree

I've gained:
Hope,
Respect for others no matter what
Friends (on this forum )
Perspective

Crohn's is hard, but if I could do it again....I probably wouldn't change it, like my surgery scar it's part of me and tells my story

 

[dustydshook]

the ability to wear blue jeans. and sooo much more but I really miss my jeans!

 

[Billie Selene]

Je*us! After reading this thread I got to agree with Cheeky.... what's the sense of hanging around for all this.... I have been suffering thru the symptoms of "sumthin" for like a year now and just got diag'd that it is Crohn's - took a 1300 DOLLAR blood test to diag me too.... and now I get to look forward to all this? Short Answer is starting to look better and better!

 

[Jennifer]

All my surgery scars manage to detour aound my actual bellybutton....
:frown:

Mine too. People tell me that it looks like a peace sign but when I look down at it all I see is a little butt. It used to be a perfect little inny. I should show a picture of it some time. Is there a battle scar thread anywhere on here? If not maybe I'll make one.

Edit: @Zman, I don't understand why doctors can't cut on you anymore. Why is surgery out of the question if I may ask?

 

[Jerman]

Really interesting thread Zane. I am sorry that both you and cheeky are in such a sad spot. I truly understand that feeling and hope that you are both able to feel better about things really soon. It is hard enough to deal with the physical issues as it is, then when the emotional/mental health issues hit as well it can feel insurmountable. There are many days when i feel like the poster boy for depression and anxiety. Additionally, the tv bombards you with commercials about how hard depression is and i then I remember that Elvis shot his TV. seems to make good sense at times. If either of you need an ear, pm or email me, I can at least offer a sounding board and the voice of experience. I really hope that you are both feeling better soon.


Back to thread:

Things I have lost to my abdominal disease.

My Career, My pride, sense of purpose, My role as "the man of the House"- not meant in a sexist manner at all but bringing home a paycheck and lifting, moving, and being able to have my kids think I am in-destructable. I remember as a kid thinking my dad was the strongest person in the world and could do anything he wanted whenever he chose. My kids look at me sometimes like I am a fragile invalid and I frikkin hate that feeling.

I have lost my extended family- Mom, Dad, Brother and cousins. Some people just can't handle sticking around when the fairy tale craps the bed! I now know that spoken decrees of love and loyalty can be as insincere and repulsive as seeing film maker Michael Moore in spandex!

***What i have learned from the above aside from the eye gouging visual- is to teach my kids the importance of family and unconditional loyalty and love.

I have lost friends, both new and old due to my challenges with socializing. When the phone rings, I rarely if ever pick it up even if it is someone close to me, just can't do the "how ya feeling?" discussion yet another time. Even when it comes to the friends that had stuck around I have offended some by my terse nature and sometimes snappy remarks. I always seem to have a brisk current flowing through my consciousness carrying frustration, feelings of inadequacy, as well as lots of anger and self-loathing for not being strong enough to "beat this" and be OK.

I have lost physical strength, muscle mass, and stamina and am mortified by just how little i can do physically. I want and need to work but know that my feelings of being a shell of the man I was- are just too easy to see right now.

Things I have learned from this disease:

how to kindly but firmly tell a creditor that they are as likely to get paid as I am to start laying golden eggs.

How to be a bulldog of an advocate, not at all intimidated by docs and simply do not tolerate being talked over or dismissed.

I have learned that my wife has a very strong dislike for me being impatient and beginning to walk home from the hospital when I have decided I was "finished" with the docs BS

I have learned that there are many many things out of the realm of my control right now and that trying to reach for anything that i can control only exaserbates the whole effin thing.

I have completely lost faith and belief in a higher power. I was raised Roman Catholic and many years ago when my son was ill, i prayed to god and to Saint Jude (patron saint of hopeless causes) every day without fail. Now I would just as soon pray to the Underdog float in the Macy's Thanksgiving Day parade. :grumpy:

 

[Crohn's 35]

Have lost my independence, and freedom. Those things tend to snow ball and causes a wide range of other things, like some friends, ability to just do somenthing spontaneous and not have to plan for every little thing.

Trying to think of things I gained. I do have some friends I can count on and a supportive husband. Just want to see a remission for a spell, trying....:yfaint:

 

[MapleLeafGirl]

I have completely lost faith and belief in a higher power. I was raised Roman Catholic and many years ago when my son was ill, i prayed to god and to Saint Jude (patron saint of hopeless causes) every day without fail. Now I would just as soon pray to the Underdog float in the Macy's Thanksgiving Day parade. :grumpy:

This likely wasn't meant to be funny, but it made me laugh my ass off and I must say I hear you. While I still believe in a higher power, I don't think it's the same type of higher power I grew up believing in. It is more like what you talked about in your epiphany post.

Being a relative newbie to the forum, I had no idea you had been through so much and am very sorry to hear of some of your struggles. I do believe it all happens for a reason and hopefully that becomes clear at some point.

I am thinking of you buddy! Does the fact that hockey season is just around the corner, make it any better?

 

[hunniebunn88]

What I have lost...
- my self-esteem is one of the biggest ones now for me. after being on prednisone I have ballooned to the biggest i have ever been in my life. my cheeks have puffed out like a chipmunk, and i look like i am 5 months pregnant. i do not like to go out anywhere anymore because i feel like people are staring.
- my potential carreer as a paramedic, realized it wouldn't be possible to do the best job i could if i was constantly thinking about where the closest bathroom was.
- lots of blood
- my fear of needles, i used to pass out to needles, now i can take them like a champ
- fear of being alone
- my friends, or people who i thought were my friends
- my dignity
- my mind
- time; spent in the bathroom, clinics, emergency rooms
- love for myself
- lots of beauty sleep
- my faith


What I have gained
- a new perspective in life and that not everything can go my way
- the way to zero in on a bathroom within a 5km radius of anywhere
- a new relationship with my mom
- the love of writing
- the "wantingness" to be the best i can and not letting anybody stand in my way
- the ability to judge somebody's character very quickly

 

[Crohn's 35]

=hunniebunn88;215479


What I have gained

- the "wantingness" to be the best i can and not letting anybody stand in my way
- the ability to judge somebody's character very quickly

Good for you!!! You go girl!:hang:

 

[JoeUK]

Great thread, I'm reading it in the loo I've lost similar things but gained loads as well. I'm the best person to ask about the pros and cons of the latest toilet paper on the marker. I'm always the one who knows where to find a loo in town - I think it is like a new super power I know all the places to eat that are crohns and dairy-free friendly. I always encourage them to ad one dish on the menu that I can eat where ever I go. I'm great at training new nurses how best the extract my blood - beware if you tell me I'll feel a little prick when you approach me with a needle! I know all the costs of parking at different hospitals. I know just how late to arrive for my GI so not to be told off too much. I know which blood tests to tick on the sheet when a new nurse crashes the computer. I know how to plan a day around bowl movements and I'm soooo empathetic towards mums who have to change nappies. I have developed microscopic vision to be able to read all the small print ingredient lists on food labels. I know where to buy all tenors things I eat and how to interrogate and threaten waiters in restaurants to make sure they don't poison me. I know how to pesist when I call food companies to ask them if their products are really dairy free. I have leaned how to growl to ward off any potential food manners when I have a special meal booked at a conference. I know all the nice excuses to use when I'm having a crohns day when friends insist that we go walking for miles. I have learned not to feel guilty when I use the disabily toilets at the cinema and to cope with the glares from "normals". I've learned to say "whatever" a lot. I've learned that sometimes my body will do what it wants to do regardless of what I want it to do. I lost the ability to eat whatever I want to eat when I went intonremission and I've gained a wardrobe full of different sizes - I think I'm more fashion aware now I've gained many sleepless nights but I'm able to identify many more of the night sounds and I can tell the difference between a police and ambulance siren 2 at 3am. I've discovered day time tv during my recovery times at home and I now know that Dr. Phil knows interesting stuff. I've learned which friends to call on and meaning of support - how wonderful! I've learned tomtlak to my neighbours and that some people are genuinely kind. I've also learned the life is not fair - who ever said that it was must have been intoxicated. Anyway, I'm sure I could think of load more to say but I'll save that for another thread. Hope you are having amreasonanle day!

 

[JoeUK]

I've obviously not yet learned how to type on my phone!

 

[LtHuff]

What I have lost:

Although recently diagnosed in Oct-Nov 2009 it took away my dream job. Flying for the military. I got lasik so i could see, strived to be one of the top officers in my class read aircraft manuals to be prepared for flight school for 3 years and then have it all swept away with a diagnosis of Crohn's Disease. Have lost time with the family from ER trips and the ability to get life insurance (so far been turned down by 3 companies, put on hold for now but will try again soon). Hopefully i can get it into remission and quit worrying about going out running and mountain biking then having a flare or the need to find a the nearest restroom.

Reading through this thread I know lots of people have had it worse than me and I feel for each and everyone of you. Its extremely hard to imagine what a lot of you have gone through and can only hope and pray its better for all in the future.

 

[scifi-enthusiast]

-the ability to drive (I totaled my car because of the pain).
-A foot of my colon
-lots of college credits
-several packages of underwear
-the ability to be an organ donor (so I'm donating my body to science after my death).
-my teeth pretty soon (having to get dentures once I get on SSD).
-and if I'm not careful in the coming months, college financial aid.

 

[Jerman]

This likely wasn't meant to be funny, but it made me laugh my ass off and I must say I hear you. While I still believe in a higher power, I don't think it's the same type of higher power I grew up believing in. It is more like what you talked about in your epiphany post.

Being a relative newbie to the forum, I had no idea you had been through so much and am very sorry to hear of some of your struggles. I do believe it all happens for a reason and hopefully that becomes clear at some point.

I am thinking of you buddy! Does the fact that hockey season is just around the corner, make it any better?

Thanks Kelly, I appreciate your kind thoughts. Yes, the fact that both football and hockey are around the corner is helpful. :hug:

 

[kello82]

-the ability to be an organ donor (so I'm donating my body to science after my death).

how come? does CD prohibit your organs from being viable for transplant? i am registered as an organ donor on my drivers liscence thing but idk if thats official i mean you dont have to go thru any health checks to have that on there they just ask if you wanna be a donor, maybe they do those sorts of checks after death?

 

[Astra]

I've lost my uterus, cervix and ovaries
I've lost my fear of dying and surgery
I've lost my Mum & Dad
I've lost my marriage, husband and house
I've lost my mind many times
I've lost faith in religion, God etc


but
I've gained much more
I've got Crohn's!
I've got a new partner
I've got a new house
I've got independence, money and a secure job
I've still got a wicked sense of humour
I've got dignity, pride, integrity and trust
I've got two incredible children
I've got my life back!

I've got you lot, my friends, my life savers, you are my retreat, my sanctuary, you're where I go to find peace, thank you
xxxx

 

[scifi-enthusiast]

how come? does CD prohibit your organs from being viable for transplant? i am registered as an organ donor on my drivers liscence thing but idk if thats official i mean you dont have to go thru any health checks to have that on there they just ask if you wanna be a donor, maybe they do those sorts of checks after death?

Any autoimmune disorder disqualifies you from being an organ donor. Even though you may have it on your license, they won't be able to use any of your organs after death because of the disease. This is because the recipient's body is more likely to reject the organ.

Donating my body to science seems like the next best thing. If it's not used in Crohn's research, it can at least be used to teach a med-student the effect the disease has on the human body, especially if their trying to become a GI. Also, this way my family won't have to pay for a funeral.

 

[Genio]

I have lost my ability to be embarrassed.
So many jobs I lost count.

 

[tiloah]

I love this thread. Here's my list:

My energy
My strength
My ability to feel sympathetic to people who get "the stomach flu"
Money
Time
My willingness to take risks
Possibly my ability to tryout for and play for Rat City this season
Tears
Bile
Blood
Ability to eat my favorite vegetables
Balanced diet
Motivation

 

[crazycanuck]

Ive lost many things although being younger still nothing to the extent of most of you thankfully so far. Ive lost a decent gpa in uni, friends, a lot of sleep, and respect of those who don't understand....

I truely believe though that Crohn's has made me a much better person. Without Crohn's I wouldn't have:

My girlfriend who I plan on marrying
My closeness with my family
My confindence in myself and what I can do
My appreciation for the simpler things in life
My job
My navigation skills (finding bathrooms anyway)
My creativity
My time management
My planning
My pain threshold
My ability to work a full day on just 2 hours sleep
My appreciation of doctors
My appreciation of healthcare in Canada
My knowledge of how much sickness can affect a family
My want to give back to a community that has done so much for me
This forum
My new and entirely different life.

 

[kittykat92]

What i've lost:
- dancing (i used to do ballet)
- friends (well obviously they weren't the friends i thought they were)
- shame ( I have none haha bring it on)
- time (quite a bit is spent on the loo xD)
- energy ( I swear imuran makes you tired)
- blood (im a pin cushion!!!)
-the ability to enjoy food
- my appendix

What i've gained:
- numerous scars ( i have a peace sign around my belly button)
- TRUE friends (the kind that will be there for you always, no matter what)
- organisation (how else would i remember to take all my meds??)
- a JOB!!! im actually working as a vet nurse and they are so understanding (always asking how i am and how my health is going)
- a puppy (my best friend and pain manager - whenever i have cramps she will lie on my stomach!!)

Thats about it and it feels really good just to get it out there ^^

 

[Pirate]

Things I've lost

1) My teeth. (thanks pred)
2) 2 jobs (not such a big loss)
3) My chance to try out for the Olympics. (distance runner- wasn't diagnosed yet, just the symptoms)
4) the chance to coach all 3 of my sons in Little League.

Gains
1) The ability to laugh at myself
2) The knowledge of just how much my wife loves me and that she is in for the long haul.
3) My friends from all over the world from this Forum.

 

[AndiGirl]

Things I've Lost

1) Some friendships and social outlets
2) Weight- I was heavier before (I did gain a fatter face though)
3) The ability to eat without pain or nausea (some foods are worse offenders of course).
4) The ability to be totally carefree in many situations business and social.
5) I haven't lost my teeth, but I went from having terrific teeth in my early 20s, to having cavities popping up during every visit. I take good care of them too.


Positives

1) I see how fragile and precious life really is.
2) My faith in God has grown.
3) I am more empathetic/sympathetic towards others and problems or conditions they may have.
4) I have learned that I am stronger than I thought.
5) I have learned not to fear doctors, procedures, needles, or dying. I've had all of them, and almost died in 2006.
6) I have developed a better relationship with my family.
7) I have a good husband and two of the most precious children.
8) I've met so many wonderful people here at the forum, who unfortunately, can share my pain.

 

[Scifimom]

Lost
My ability to trust doctors, heck I dont even like doctors anymore and my brother is one of them
45cm of my terminal Ileum
Weight
My clear skin
My thick hair
Salads-mushrooms-popcorn etc.

Gained
Weight (Yes now that I am in remission)
Rash
headaches
scars (Not only the surgery scar, I have a scar from the folley tube and scars on both legs from the anti-clotting socks I was wearing at the ICU)
Fear of getting infections-cancer-flares
Hate for blood works
My family knows were they can find me all the time... In the bathroom!
My tattoo
My trip to USA
I always had a good sense of humor now I mastered poo jokes too.

 

[Karissa]

Lost:
Fear of needles
Fear of swallowing pills
Fear of surgery
TIME
Weight

Gained:
Strength
Compassion
Scars
Increased pain tolerance
Knowledge of medications and natural remedies
A deep understanding of my body
My friends (I have never lost a friend due to Crohn's. I am so lucky to have friends that understand and take care of me)
Complete support from my family
A yearning to LIVE and experience EVERYTHING (I'm going to Italy next May and I'm going to get a tattoo next month for my 21st birthday)
Thankful for my life- I NEVER complain

Thanks for this thread

 

[lookame]

Well what I've lost(in the short while I've had crohns and the yr I suffered before)
-time
-sleep
-time at work
-money
-a week of my life due to hospitalization
-friends
-dignity running out of work blood all over your pants isnt the way to leave
-digesting food(dumping syndrom)
-will to eat at times
-will to do things, especially if I don't know I can make it to the bathroom
-lost a lot of blood
-lost my trust in doctors
-lost my trust in drugs
-lost being able to do massage therapy

I gained
-a new respect for my fiance
-a new attitude
-hurt feelings(someone said I could work cause stage 4 cancer patients work full time jobs)
-a new hope
-compassion
-scars(from small cuts since the 6mp killed my platelets)
-bruises
-infections
-frustaition

 

[Cordillia16]

great thread. really enjoyed reading it.

merrywidow** so sorry for your lose. can't imagine loosing the belly button!

this thing that i miss the most that is lost is my appetite for food. i hate food now. i don't want to eat and i don't like to eat and i don't enjoy the taste of food the way i used to.

i also miss not having to talk about my rear end. i'm so sick of talking about it!

 

[25times]

This thread is sad, but also pretty inspiring.
Things I've lost:
Weight
Friends (can't ever go out or drink)
Ability to eat most food (just for now, hopefully)
My sex drive
My big boobs and my nice butt
My double chin (YES!)
Tons of clothes
Time
Money
Ability to travel
Great experiences that I should be able to have because I'm young and not tied down, but I can't because I'm so sick right now.
A few jobs (although they weren't that good anyways, but still)
Tons, and I mean TONS, of toilet paper

Things I've gained
Knowlege
Better friends than I had before
A fear of some foods, due to the symptoms I might get from them
Respect for other people with chronic illnesses, especially arthritis, since I've developed that, too.
Compassion
A new perspective on life.
Better priorities. I put my health first now, because I can always get a new job, go to the next party, see my friends another time. I can't get back a foot of my intestine.
The ability to swallow pills. I hard a really hard time before (still not easy) but now I don't gag.
A healthier liver, since I can't drink anymore

I can't believe that so many people on here have such a positive attitude towards life while dealing with this disease. Granted, I'm not in remission yet, and there's no real hope for it in the immediate future, so obviously I'm going to feel pretty negative about it. But lately I just feel like there's seriously no point to my life anymore. I can't do ANYTHING. I'm not even remotely the same person I was 6 months ago. I used to have fun, and go out all the time, and see all my friends, and eat anything I wanted. Now I'm constantly worried, constantly in excruciating pain, and always dealing with bullshit from doctors, nurses, pharmacists, even random people. I feel like no one understands what I'm going through, and how unbelievably hard it is. I'm so frustrated and hopeless. I feel like I'll never get better. None of the treatments I've tried have worked at all, and they just keep telling me to take more pills, stop these pills, start those pills again, get this test and this one too. Like, oh my god, just stop! It hurts so bad and I feel so shitty ALL THE TIME. It never stops! What else do I have to do?! I'm spending hundreds upon hundreds of dollars (that I don't have!) on prescriptions that my doctor just tells me to stop taking after a week. And supplements. And special foods. And parking at the hospital. And toilet paper.
There's nothing else to say. You've all been here before. You know what I'm going through and you've gotten past it, so I should too, right? I'm just not sure if I can.

 

[Karissa]

There's nothing else to say. You've all been here before. You know what I'm going through and you've gotten past it, so I should too, right? I'm just not sure if I can.

Trust me. You can. We're all right there with you.

 

[ShanBanana]

Since I am STILL undiagnosed, but still sick and tired, I have lost:

Respect from "friends" who tell me to get over it already
My sanity (am I sick or just crazy)
My boyfriend of two years (who can't handle it anymore)
My sex drive (another reason for losing the boyfriend)
My apartment- since we broke up I have to move. Hope I can make it
on my own since I still have medical bills and now more bills on my own
My ability to eat without throwing up :yfaint:

Things I still have:

A great job, hopefully I can keep it if they keep working around my
illness
A great boss (see above) who really understands and cares for me
My beautiful and loving cat, who loves me no matter what
An awesome family and loving parents who are always there to listen
to my tears
The real friends who have not deserted me
My Savior, Jesus Christ, who will NEVER leave me nor forsake me :emot-dance:

Things I gained:

All the awesome people on this forum!!! Thank you all so much!! :ytongue:

 

[pea]

Things I've lost to Crohns;
My Husband (just thought I was being lazy all the time and then left once I had an ileostomy bag saying he was never going to go near me)
My company
So much time
Blood
Being able to eat out
my large bowel (to an ileostomy bag)

Things I've gained
Inner strength
Understanding
Hope
Living day by day

Things I still have
my kids
my parents
my cat
my family home

 

[KazT17]

Are you there Zane? Would love to hear that you are ok?

Love Kaz xxx

 

[julie.bulie]

What I've Lost:

• My inhibition
• Too much weight
• My appendix
• Many meals, and for months the ability to feed myself.
• My physical strength
• A lot of blood
• A lot of veins
• Friends, who I guess were never really good friends if they didn't understand.
• A couple jobs
• Countless opportunities
• Time in general
• My mind, at times

What I've Gained:

• A new perspecitve
• A stronger self, mentally
• New friends, who DO understand!
• Battle scars

I love this response. You definatley gain a new appreciation for little things in life that some healthy people take for granted. When not in an active flare up a good jog or big portion meal or just socialising with friends really make my day.

 

[Dr.Who]

Lost my brother ( died from crohns )

i didnt know.. you could die from crohns??

 

[tiloah]

i didnt know.. you could die from crohns??

Crohn's is not considered terminal or anything, and life expectancy of people with Crohn's is not considered reduced. But that doesn't mean that complications of Crohn's can't be fatal.

 

[Dr.Who]

Crohn's is not considered terminal or anything, and life expectancy of people with Crohn's is not considered reduced. But that doesn't mean that complications of Crohn's can't be fatal.

i still find it hard to imagine.

 

[tiloah]

i still find it hard to imagine.

One example would be bowel perforation. That is an emergency situation that can lead to death if not taken care of immediately.

 

[djpoptart92]

I was diagnosed with CD in 1994, and since then, some things I have lost thanks to this "crappy" disease:

Family (They seem to have alienated me)
My Friends
My Love Life (Can't seem to find that one woman thats willing to understand my illness)
My Job
My Wanting To Live
My Money
Most of my large bowel
My teeth (Prednisone)
Ability To Father A Child (Part due to Prednisone, and another part due to infection from the first ulcerization collected in my scrotum, 500cc's of infection and puss killed my family jewels)
Now starting lose my hair(think my age is doin that tho)

There is soooo much more..............

In a nutshell, Crohns took about 89% of my life.