WeAreCrohns.org - The Social Support Network for People Living with Crohn's Disease and Colitis

Nicole

This disease has changed my life in more ways than I can count.  The pain, the struggles, the fears, have all increased my love and faith in Christ Jesus. 

The relationship with my son has also been impacted.  He is more loving and tries to help me out whenever he can.  Recently, when asked what he wanted to do when he grows up, he said he wants to find a cure for Crohn's and Colitis. 

Overall, I have learned life is so very temporary and not to take any day for granted.  I have come closer to family and reconnected with old friends. 

15 months ago

Jennifer

Being diagnosed with Crohn's has changed all of my relationships.  Some good and others- not so much.

My Mommy-  My mother has come to my aid so many times emotionally since having this diagnosis.  This has helped make my realtionshio with my mom better, as we struggled for many years to understand one another.

My Partner- My partner has become angry at the limitations that have come along with having Crohns disease.  Fatigue, pain, being on multiple medications.  Bitterness and anger have almost ruined our relationship.  We have since entered couples therapy with a therapist that specializes in Chronis Illness and Pain and how those affect relationships and families.

My Son- I already loved my 18 month old more than life itself- but I was diagnosed after having him and it makes me even more amazed at the miracle of life, the miracle of Cooper coming into the world (he is an IVF baby), and the amazing gift of his health. 

In general, being diagnosed with Crohns disease has made me never hold out on saying I'm sorry, I love you, I need you,thank you, I miss you  and you mean the world to me.

15 months ago

Dogletsmom

“An Alien Gift”

A= Attitude, Aptitude, and
Affection

L= Love

I= Intelligent Interaction

E= Encouragement

N= Nice

As a college
professor with Crohn’s Disease, I am often coming up with exercises and
lectures that not only keep my students on their toes, but also permit me the
flexibility to leave in the middle of a class and do my customary “mad dash”
down the hallways. Down two flights of stairs, and around the corner….  hoping and praying all that way that I “make
it” in time, and don’t end up soiling my work clothes…  AGAIN! 
One day last term, I was having a particularly bad “Crohnie” day –
diarrhea in excess of 40 times just between the hours of 7:30 AM and the start
of my class at 2:00 PM.  On this day, I was
a grumpy Gus, was weak  and dehydrated,
and just felt poorly all-around.  I know
that it takes a lot for me to teach when I am feeling that way, and thus I put additional
effort into my lecture for Sociological Research Methods

The topic of
the day was Quantitative Survey Construction – an ordinarily BORING topic… even
on the best of days when I am feeling well. 
So, I pulled out my tricks and interspersed three or four boring slides
with something off the wall like a question for a survey that might read:

Have you ever been abducted by
aliens?

The students
began to laugh, as if to say, “where did that come from, Dr. Greene?”  I chose Student X to answer the
question.  Little did I know that such a
selection was about to change my life forever. 
Student X played along…  and
responded, “Why YES, Dr. Greene.  I have
been abducted by aliens,” knowing full well that he would qualify for the
follow-up question, “Did they let you drive the space ship?”  Playing along still, Student X responded
affirmatively, once again qualifying for the follow-up question, “Did you go at
warp speed or weenie speed?”  Student X
responded, “WARP speed, of course.”  At
this point, the class was engaged and laughing and I had forgotten how poorly I
felt.  The Alien had transformed my day
and my life…  and said, “Student X” was
dubbed “Alien” forever more.

After class,
“Alien” came to my office looking sad, and saying that he needed to talk with
me privately.  His eyes were cloudy and I
could tell he was upset.  He began to
tell me that he had been diagnosed with a chronic illness and that he as having
a hard time coping with the realities enveloped within the diagnosis.  I began to talk, whilst trying to hold back
my tears.  Asking “Alien” to close my
office door, I “came out” to him. 
Telling “Alien” that I understood his plight and that I also have a
chronic illness, I explained Crohn’s Disease and showed him my daily medication
regimen.  A bond was born that day in
Sociological Research Methods, and “Alien” has become a best friend – a true “BFF.”

Since that
day, Alien and I have been each others’ support.  While our illnesses differ, our experiences
are similar, as are the emotional highs and lows that come along with living
and coping with life with a serious chronic illness. “Alien” reads my body and
expressions (as I read his) like only a fellow “sicko” can – with the caring, sensitivity,
and compassion that comes from truly “getting it.”  All that Alien does with me exhibits the
loving and supportive bond that has developed between us.  While our life partners love us both and
support us as only spouses can, nothing replaces the mutually supportive and
loving bond between “sicko Alien” and “sicko Crohnie.”

To say that
I don’t know what I would do without Alien would be a gross
understatement.  He calls to check on me
every day, if not several times per day. 
We have our daily “bitch sessions,” and remind each other to take our
meds (he’s a lucky “duck” and only has to take meds once per day, whereas I
need more reminding with my five time per day medication schedule).  He is my sounding board when my partner doesn’t
understand or isn’t around.  He is my
pal, my buddy my confidante, my support… 
and, of course, my fellow “sicko.” 
But most of all, he is my “Alien.” 
“Alien” is truly a gift from G-d.

15 months ago

Melissa

When I think about it, how HASN'T Crohn's affected my relationships.  It has had both positive and negative affects on my relationships. When I first saw this discussion I immediately thought- initimate relationships. The symptoms of Crohn's can be quite socially emabarrassing and require a certain amount of empathy and compassion from a romantic mate. When I was 19, I had my first "serious" romantic relationship. I also had one of the worst flares of Crohn's since being diagnosed.  My boyfriend at the time was extremely unsupportive and would act as if  I wasn't sick. He couldn't deal with my pain, both emotionally and physically. He would get angry and told me that he had thought of ending the relationship due to my behavior during a flare.  After a few more months of dating, I realized that he was not the right person for me. We broke up and I knew that if I ever wanted to be with someone seriously again, how they treated me when I was sick would be a major determining factor.I found him :)

15 months ago

Cheryl

Being diagnosed with Crohn's has an affect on any relationships, sometimes good, some not so good, but in different, unique ways, depending on the person.

I always took my spouse for granted, especially our physical relationship, until it came that Crohn's symtoms prevented me from either wanting or needing him in that sense.   It was hard for both of us to deal with, but through his always positive attitude, we have been reminded that we have so much more than a physical relationship and while there are often times that I can't be there for him in that sense, I can be so much more for him in other ways.    There to give a hug when needed, there to listen, there to love.   

My son understands that sometimes "mommy's belly hurts" and that I just need to lay on the couch and veg - and God love him, he's only 8.   It's not fair that he has to see me like that, I should be an active, go to it mom.   But he's so sweet and asks me if I need anything and is like a little miniature nurse.   I love him even more for being the mommy sometimes.

My mother, going through her own personal hell this year after being diagnosed with breast cancer, has taken time out of her treatments to make sure that I'm taking care of myself and taking my meds and is there for me to vent, cry and sound off to.    After all, sometimes we just all need our mommy, right?

And my best friend is there to remind me that with every new needed treatment and struggle comes progress, even if it means some added days of heartache and pain.

With Crohn's you learn that any relationship worth having will understand and cope with your disease, as it so much affects them as well.   And you come out stronger and better because of them.      And you cherish those relationships even more.   At least that's my experience - I could not have made it this far without them.

15 months ago

Jennifer

Having been diagnosed with Crohns disease at the age of 15 (way back in 1984) the relationship that was most affected was my relationship with my mother, who has Ulcerative Colitis herself.

She took care of me, drove me to all my doctor's appointments & this is no small feat with the traffic in downtown St. Louis!  She injected me with B-12.  She was always there & was ready to do whatever it took to help me deal with the disease.  She has definitely been my role model.

She has been by my side through many tests, ER visits, hospitalizations & surgeries.  She was there for me when both my children were born.

Who would have known that we'd be in the same situation 23 years later when my 16 year old daughter Katie was diagnosed with Crohns disease in 2007?  Again, my mom has been there for us.  I don't know what I would do without her support.  In 2008 Katie had bowel resection surgery and my mom was there in the waiting room with me and relieved me after the surgery so I could go home & care for my son.  She made sure Katie was not left alone.

Katie missed alot of school during her junior & senior year of high school and an opportunity arose where Katie could make up her work by going to school half days.  This was perfect because she always got ill after lunch.  There was only one problem: how would she get home?  The buses didn't run at that time.  Again, my mom came through & went the extra mile (literally) and drove to the school & picked up Katie & took her home EVERYDAY before she went to work her 2nd shift at the hospital.  Seeing Katie graduate two weeks ago was a proud moment for myself & my mom.  It wouldn't have been possible without the help from my mom.

If there was one thing I would wish for my mother it would be for her to worry less.  But with a daughter & granddaughter with Crohns disease who wouldn't worry?  I just want her to take care of herself & enjoy her life.

As you can see, Crohns disease & Ulcerative Colitis has had a huge affect on my relationship with my mom, Lynn Durbin.

She also told me about this website "WeAreCrohns" and joining has been one of the best things I could ever done.

15 months ago

Jennie

Crohn's has changed my relationship with everyone around me, myself and life in general. BEFORE I got sick I was not a happy person at all. All I did was hurt myself inside and out as well as all the people around me. I had no respect for anyone or anything. I drank, did drugs, cut myself and ignored or disrespected my wonderful family and true friends. I wasted years and years being angry, depressed and high. My body meant nothing to me, I couldn't of cared less what happened to it.

After getting sick everything changed. I still have my bad days, everyone does; but on a whole I am happy now, often blissfully so. Even though my body is far from perfect inside and out I've learned to treat it with love and more like a temple than a trash can. My family, TRUE friends and beloved pets are all that matters to me now. I love them soooo much and try to let them know it as often as possible. I have so much love and joy in my life now thanks to Crohn's. It's given me back my spirit, my soul and the ones I am suppose to take this great journey called life with.

15 months ago

Nichole

Crohns has affected every single relationship in my life; even before I knew I had it, it affected me and those around me. In middle school and high school I felt isolated, no one wanted to be friends with the “sick girl”, I got bullied a lot (ate a lot of lunches in the bathroom alone). I was very pale and very skinny; kids made fun of me and called me a ghost or just thought I had some weird eating disorder so they spread rumours said mean things. One year even (on my birthday) they decorated my locker with trash (literally picked things out of the garbage and stuck them on my locker). As you can imagine I do not look back on those days with any fond memories.

However, one thing is for sure, having a condition like Crohns really shows you other peoples true colours and really shows you who your friends are and who are just faking. University was better with friends, but still it’s always been hard making and keeping friends who love me for who I am, however I have several close friends who love me for me, and see through the Crohns and will always be there for me. They have come to the hospital to see me on more than one occasion; they have researched Crohns so they know more about it (without any prompting from me), they always make sure I’m ok, and I feel so blessed to have them in my life.

Crohns & Colitis suck, and I don’t think anyone with either disease can say it hasn’t affected the personal relationships in their life. We are strong, and those who by choice stay by our sides through this all are strong and faithful and amazing people. I thank those people in my life every day, I’m so glad they are here with me, and will always be.

14 months ago

Ruth

Crohn's disease was the greatest thing that has ever happened to me, because it brought me to my true love. When I was in the hospital this past September, still unsure of what was wrong, my mother was very worried and insisted I come home, 4 hours away, so she could watch me. I refused, as I had responsibilities to attend to. The next day she called to tell me my close friend, now my significant other, was on his way. He emptied my garbage, watered my plants, packed my clothes, and brought me home. I was diagnosed with Crohn's weeks later and given a medical leave of absence from my graduate program. My doctor told me to reduce the stress in my life and only do things that bring me joy. For the next several months my friend was always at my side. He learned how to make the food on my "safe" list, he made me laugh and let me cry. He would stay up until dawn watching movies with me when the prednisone kept me up. He would act goofy and make me feel/seem less crazy from the steroids. He rubbed my belly when it hurt and sat on my feet when they were cold! All this before we were together! We finally started dating my first day off the steroids, at the peak of my withdrawal, and have been together now for 6 months. Through this difficult process I found who my true friends were, who I could depend on and what brings me joy. I think I found my true love as well.<3

14 months ago

Kristen

I was very good friends with a colleague who also had Crohn's Disease.  I sat with her every day in the hospital right after my diagnosis for a week when her mom was not in town, when she was diagnosed with a blockage.  But as I got sicker she became indignant.  She was quite into the dramatics at work about Crohns, where I am more of a straight forward person.  If I was sick, I just said it, I didn't make people guess.  Our "different" coping styles became too much of a difference.  She called and wanted to talk for two hours a night about her disease but never really let me open up about my own, I mean really, how could you when someone else is going on about how much worse theirs is in comparison to yours....  In the end we no longer speak.  I realize that she probably wasn't my friend to begin with, but it was an interesting learning experience to see how sometimes a similarity can be threatening for someone who has not really ever learned to cope with the emotional piece to having a chronic illness.

14 months ago