How has Crohn's changed your life?

[Karissa]

How has Crohn's changed your life?

Pick one negative effect and one positive effect!

Crohn's has taken time from me. I feel like I missed out on so many experiences because I was stuck at home on the couch. I couldn't fully experience my life since I was so preoccupied with the pain. I wish I could get that time back. Post-surgery, I am living my life without boundaries.

Crohn's has shaped me into the person I am today. I honestly cannot imagine my life without it. I have known such excruciating pain and have conquered so many hurdles that have made me a strong, caring person. I am endlessly grateful for the life that I have, including Crohn's. It is a part of me.

Your turn! I am excited to hear everything you all have to say

 

[Jennifer]

Only one negative?

Negative: Crohn's has made me self conscious about my body because of taking Prednisone (gave me stretchmarks) and because of my surgeries (central IV scar on left breast and absolutely ruined bellybutton with a slash through my stomach from my resection). I can't stand wearing shorts, short skirts, low cut tops and bathing suits.

Positive: Because I have Crohn's I have free health care (Medi-Cal) that covers almost anything under the sun (besides cosmetic fixes) which saves me a lot of money and worry.

 

[crazycanuck]

Negative: Missed opportunities, especially in high school. Missed a lot of events with friends, missed my dry grad, missed a lot of high school sports.

Positive: Confidence. Crohn's has forced me to be more confident with myself. You really just have to be able to laugh at yourself no matter how embarassing your situation. I can honestly thank Crohn's for my amazing and loving girlfriend. Now if only I could somehow have Crohn's make me money...

 

[lulu2]

Negative: It has affected my career possibilities (among many other things such as missing out on things cos Im sick).... but most importantly surgery has always been on my list of career possibilities, but now i have crohns and I've realised how sick I can get with it and how sudden that happens, I doubt a career in surgery is feasible. I can't be elbow deep in someones chest then run off to the toilet!!!

Positive: It makes me a more caring and empathic Dr I think; I've experienced excrutiating pain and what its like to be sick and have Drs and nurses poking and prodding you so I understand my patients much better.

 

[handle]

negative: my life is fuc#ed
positive: I'm positive my life is fuc#ed.....haha...I don't take myself so seriously these days.

 

[ekay03]

negative: I no longer work and I have no social life

positive: no work drama, no social drama when I say drama I guess what I mean is stress!

 

[closedingirl]

Negative: Loss of social interaction, school, jobs, etc.

Positive: I'm much more caring and understanding.

 

[sunluvva]

Negative - Missing out on some special occasions as I daren't be too far away from the loo and also not being able to run long distance (yet) for the same reason!

Positive - Given up a job I hated to be a foster mum - I can cope just fine at home and luckily don't have such bad symptoms as some people, but if I do have a bad couple of days I can rest at home and still manage caring for a child with my husbands help

 

[Astra]

I've had to think about this for ages and I think my answer is.....
No it hasn't changed me at all, I'm still the same!
And the only positive thang is..
I found this forum!

 

[Terriernut]

Negative: It took alot out of me. Before Stan, I couldnt hardly even manage to go to the grocery store, let alone have a social life. Thank goodness for deliveries and the internet! Although still managed to work full time, it wasnt easy! Still the same way, been so long a hermit now, it just seems easier to stay that way!

Positive: What doesnt kill you makes you stronger. I was close to death twice, that'll teach ya a thing or two! I'm back, stronger, tougher, more determined. More assertive, less willing to take crap and much more willing to take a more firm grip on my life. One step at a time though. I am also very much more willing to step in and help folks, whereas before I was afraid to. As I've learned, helping others makes you forget your own troubles, and as you help others find the positives (even just to give em a giggle) the more it helps me to feel better.

Misty

 

[Karissa]

I loved reading these! Thanks for sharing everyone. I know that seeing the positive is difficult sometimes, but it can make the world of difference.

 

[mom2twogr8tkids]

Negative: I've almost died several times and I'm so self conscious bc of everything I've been thru (what Crabby said pretty much sums it up for me too).
Postive: Well I can't list just one...I'm so much stronger now bc of everything that has happened to me. And I realized that the Lord wasn't finished with me yet and my near death experience gave me a new out look on life. It also led me to the greatest husband on the planet.

 

[Snookums]

Negative: Not being able to do as many things with my husband and daughter as I would like to do, due to fatigue, pain and symptoms

Positive: Appreciating those moments when I can do things with them more than anything in the world. Not allowing silly things to wind me up the way I used to. Understanding that behind every face is someone with their own story and we really shouldnt judge someone when we do not know what their individual story is.

 

[lookame]

Negative: Embarrassment--crapping your pants in front of your coworkers isnt fun
Positive: It's made me go through life tying to put a smile on my face...Optomism!

 

[AndiGirl]

Negative- It has caused me plenty of worry; will I need to run to the bathroom at an inopportune time, puke in front of people, and what will others think of my actions or reactions? I feel like I've lost some friends because I've have been home-bound on several occasions, or had to cancel out on plans. Even though my doctor told me it probably isn't the cause; I kind of blame the Crohn's for two of my late miscarriages. I don't feel that I can enjoy typical fun events like others: movies, eating out, theme parks, dinner parties. I do enjoy those things, but I have to be aware of how I feel, what I eat, and where the bathroom(s) are located. I wish I didn't have to think about that like others who are healthy. I hate my chubby face from the Prednisone. It makes me look fatter than I really am.

Positive- I have learned to be truly grateful for my blessings. I have learned to trust in God. I have learned to see the good in people. I feel that I am a lot more sensitive, caring, and understanding of others. I see that life is precious and fragile. I no longer have a fear of doctors or medical procedures. I've been poked and prodded just about everywhere and have survived. LOL!

 

[sparkles]

positive: I have learnt more about 'who I am'. I have learnt the difference between love and kindness. There is finally something interesting about my life.

negative: missed opportunities and general ******-feeling.

 

[fromthegut]

Actually somethign surprising has happened to me. My life changed and that changed my Crohns.
I quit a job that was not good for me. After recoverign for many months I took a temporary job which changed my life. I met my current boyfriend and I feel safe and secure in the realtionship. I don't knwo why but that has changed my stomach.
I still get a knawing in my stomach but taht is usualyl at night. Also I am nto tolerating behaviour that I use to elt roll off my back.
I met an old friend tonight and he sadi I did seem different. He said I am a lot more mellow. He said I seemed anxious before.
I think he's right. I have calmed down a lot. I am goign to have to go to my GI..or mayeb a new one ??!! I am going to change to a town that is clsoer to me and has a nice hospital.. just in case I need surgery or something. Who knows.. we shall see ???!!

 

[Aloysius M]

I'm with handle on this one however...

Negative: I've turned into a recluse, introvert, etc that doesn't like to leave the house anymore and basically don't know what the heck I'm going to do to maintain any quality of life because living and taking care of myself has become my full time job.

Positive: Erm, nothing really. Most stuff that used to bother me doesn't anymore so I guess that could be a good thing. All though I'm adding a line to an interesting saying. "Idle hands and a wondering mind are the devil's playground"

 

[xoxava]

Only one negative?

Negative: Crohn's has made me self conscious about my body because of taking Prednisone (gave me stretchmarks) and because of my surgeries (central IV scar on left breast and absolutely ruined bellybutton with a slash through my stomach from my resection). I can't stand wearing shorts, short skirts, low cut tops and bathing suits.

Positive: Because I have Crohn's I have free health care (Medi-Cal) that covers almost anything under the sun (besides cosmetic fixes) which saves me a lot of money and worry.

hahahaha, only one negative
hm. negative.. i agree with being extremely self conscious and having low selft esteem.

positive: ive learned to live life day by day and appreciate everything. life is a gift and you shouldnt stress about the small things.

 

[Joleen23]

Hey
Negative : like lots of you , seem to have missed out on a lot of events due to either being in hospital or not being well enough
Positive : now know who my real friends are (there the one's who stuck around) Also know im a lot stronger than i thought i was

 

[Grant]

Negatives, fear of the future. Fear of more surgeries & all that entails. Having incredibly tough times, depression, unable to work.
Positives, knowing that I married an absolute angel who's stuck with me through thick & thin, knowing who my real friends are, finally realizing just what a gem of a service the NHS provides.

Grant
1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs

 

[xJillx]

Negative: Fear and anxiety over when the next flare will hit and my disease progressing.

Postive: I used to stress about the smallest stuff - keeping the house tidy, work, social obligations, etc. Now, I really don't freak out so easily anymore.

 

[DustyKat]

Positive -
Early days with Matt so I have yet to see what path this leads him down. He did say to me early on in his diagnosis that he was never going to waste his time again. Funny thing is I didn't think he was! With Sarah I truly believe that she would not be as determined or committed as she is did she not have Crohns. She has gone on to do things with her life that I never dream't she would. I am so in awe of what she has achieved and the life she is creating for herself and for that I am forever grateful.

Negative -
The constant fear and worry of what lay around the corner. Every pain, niggle, innocent comment...the first thing that comes to my mind is...I hope it's not Crohns. The fear of the future and what that holds for my children. I'm like a gazelle that knows there is a lion somewhere in the grass, but where. I hate it.

Dusty. xxx

 

[Terriernut]

Dusty...you've made those kids...into survivors. They are going to come out of that cacoon...one way or another, as beautiful butterflies. With strong spirits, stong wills, and a huge survival instinct. YOU did that. And the hardest part, is going to let them fly. And they will SOAR!

Misty

 

[kildare crohnie]

negative: have to giveup the job that i liked... missed 2 many nites out,sessions, concerts festivals etc.. havin to luk at my **** every day worrying is there blood in it, never knowing wen a flare can arise, worring if my son will get it etc...the list could go on forever
positve: im positve my life wud be a million times better if i didnt have this disease..

 

[bruscar]

negative : Hospital, surgery, meds, ileostomy

positive : No more Colonoscopies !!

 

[DustyKat]

Dusty...you've made those kids...into survivors. They are going to come out of that cacoon...one way or another, as beautiful butterflies. With strong spirits, stong wills, and a huge survival instinct. YOU did that. And the hardest part, is going to let them fly. And they will SOAR!

Misty

Godammit Misty, I just put the tissues away and now I have to go get them again!

Seriously though...thanks hun, those words really mean the world to me...:hug:

Much love, :Karl:
Dusty. xxxxxxxx

 

[outlier]

Postive!
I'm more empathetic when other people are sick.
Also I have an amazing understanding of biology and anatomy now
(I know how eyes, feet, and guts are connected!)

Negative!
I now worry over every ache pain and sniffle
My first thought of anything involving the future is how will i get healthcare.

 

[kllyeve]

Negative - Right now there are so many. I may have to give up a career I have loved for 20 years because I can no longer physically tolerate the shift work required. I have no energy to even clean house(we have had to hire a housekeeper). I ache all over so I am having difficulty getting anything done or getting any sleep.

Positive - Ummmm, At least now I know that I am not just lazy or imagining how tired and awful I feel - it is not in my head.