Crohn's A Liftime Struggle

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majorcrisis
New Member


Date Joined Sep 2007
Total Posts : 8
   Posted 9/3/2007 7:27 PM (GMT -7)   

I will be celebrating my 50th birthday in the year 2008.  I have realized that I have spent my entire adult life battling Crohn’s Disease and have spent most of that time expecting to wake up tomorrow and feel better.  Lately, It has come to my attention, that it’s not going to happen.  I must live with Crohn’s Disease.

 

It is very hard, if not impossible to put into words, the deep urge I now feel to get my story out there.  One day I awoke with this deep passion to speak out.  I have tried to come up with different methods to gain awareness.  I can’t explain why I suddenly feel this compulsion.  I have spent most of my life trying to hide my disorder and fit in “normal society”.  I have really struggled through the last few years and feel cut off.  I have been isolating my self because I can no longer keep up the façade of normalcy.  My ‘flaws’ are showing and have become major obstacles; physically as well as emotionally.

 

I have experienced so much in the last 32 years.  When my journey began, Crohn’s Disease was unheard of and I did not fit within the profile of a true Crohn’s patient.  I had to validate every step along the way.  Always having to convince someone that I was really ill, really in pain.  With this disease, comes much loneliness.  It has been my experience, that most people don’t understand what it is like to live a life dictated by your disease.  Most times, they don’t want to take the time to understand, they simply write you off.  They reduce your struggles to an easy excuse to get out of an engagement.  No one wants to believe that someone could be in severe pain, most of the time. 

 

Despite  the limitations imposed by this terrible disease, I was able to complete junior college, find a full-time job, find and marry the most wonderful man.  We have been together 24 years.  During this time, we have faced many of the same obstacles, time and time again.  It wasn’t until recently that I was able to find good medical care that validates my condition and therefore, me, but it took me 31 years to find it.  31 years of rejection and living a life having to prove I was ill or apologize because I was. 

 

My husband, who is also disabled, has always supported and loved me.  Together we have achieved a lot.  I have had to break down barriers and overcome numerous obstacles.  I have lost my dignity, but I have survived.  As my 50th birthday draws near, I feel compelled to finally admit I have Crohn’s Disease.  

momoftwoangels
Regular Member


Date Joined Jul 2007
Total Posts : 222
   Posted 9/3/2007 8:43 PM (GMT -7)   
majorcrisis,
I am sorry that you have had such a long lonely struggle. I am glad that you have found validation and that you are finally feeling able to speak out about your crohns. Know that here you will find support but most of all people who understand exactly where you have been and where you are going. I just wanted to say welcome!
Heather
Living with Crohns for 1 year. I have a wonderful husband and two beautiful little girls.
 
One blessing that came with my Crohns: I thank God for each day that I can get out of bed and take care of my girls and my home.


Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 9/3/2007 11:50 PM (GMT -7)   
None of us want to be defined by this disease or whatever else we may have....and yet it is part of every minute of every day, part....only a part of who we are. ..to deny or try to hide that part is so harmful to ourselves in the longrun....I know, I have done the same for 30 odd years also. I finally accepted the fact that this part of the whole....and I don't have to justify it to anyone....anymore. I turned 50 this year....it has taken me this long to not apologize for this illness.If I have to cancel an appointment or outing, I really try my best to make it....but if I can't I simply say...sorry It's just one of those days.....those that truly care about me understand or at least accept...those who don't aren't worth the worry.
Kuddos to you for coming to this acceptance of yourself. I think it will always be a struggle with us who have chronic diseases....we have to make that conscious effort to not feel bad , or apologetic about it....it is a waste of energy and in the end, makes even more unwell.
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.
 
 


athensgirl
Regular Member


Date Joined Apr 2007
Total Posts : 254
   Posted 9/4/2007 12:26 AM (GMT -7)   
Your post brought tears to my eyes, because it's so true.... I have been struggling with Crohns for the last 9 years, and even now when I go to bed every night I dream of the times I was healthy, and I didn't have to worry about where the bathroom is.  But when the morning comes, everything is just the same and the same.....  I keep asking WHY ME whereas the correct question should be WHY NOT ME?  People struggle every day with various diseases, even small children, so I keep trying to remind myself that I'm lucky I don't have something more serious.  My sister in law is 37 years old and has breast cancer.  Now, isn't that unfair?  But she has taught me to be optimistic, and to enjoy life to the fullest every day.  I have my good days and my bad days, but it's only natural to be sad sometimes.....
 
Regarding friends, those who don't understand my condition are not considered friends anymore.  You are very lucky, like me, that you have a very supportive husband to share your fears with.  I don't know where I would be if I didn't have my husband and children.
 
Christina

lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 9/4/2007 3:48 AM (GMT -7)   
I think we all deny this DD to some extent. I'll be the first to admit when my last major flare started that I was The Queen of Denial! It had been 20+ years since my first flare and I just didn't want to deal with it , so I didn't until I got so bad I had no choice. Now, I take one day at a time and try not to let CD define me. I give you credit for coming to terms with CD, it truly does make it easier to deal with.

Athensgirl --- good to see you here. We've been concerned about you with all the fires in your lovely Greece.
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/4/2007 4:00 AM (GMT -7)   
Hi Welcome to HW I have lived with IBS for many years and now Crohn's I do not hide it from people knowing about it and getting good medical care is the best thing we can do for ourselves people need to be aware so they can get help by sharing there lives and problems along the way it has made be stronger and better able to look after myself.I am glad that now you too will not be alone and we all will help each other and those yet to join us along our path to better health knowing that our lives are enriched spiritually and emotionally as well as physically.Gotta love who we are, we're all loved and loving people. lol gail

prof
Veteran Member


Date Joined Feb 2003
Total Posts : 1195
   Posted 9/4/2007 5:02 AM (GMT -7)   
Wow.... you  really made me stop and think. I will also be celebrating my 50th this coming year.  Everyday I wonder if I will EVER feel well for more than one day at a time!  I have a wonderful family, children who have turned out to be great  young women and a husband who is as supportive as they come. But.... crohns has taken much of the life i want to have.  Seems like there is always something going on... I have a rectal prolaspe now on top of all the other stuff.  surgery is not an option so there is another thing I must live with.  It does get depressing but each day i do try and look around me and know that my family needs me ...and accepts me for whatever comes down the road.  Crohns for me is a life long battle...but sometimes I just wish the fight woudl be over.  Prof


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/4/2007 11:20 AM (GMT -7)   
I'm sick of it myself after 16 yrs straight with no full remission what so ever...sure I've found ways to feel better but I'm not the person I was before getting this DD, I've never had a period of time where my bathroom habits went back to what they were before crohns, and until they find a cure I'm sure I won't get to experiance the good old days again....one poop a day with full bowel control.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


majorcrisis
New Member


Date Joined Sep 2007
Total Posts : 8
   Posted 9/4/2007 3:01 PM (GMT -7)   
I agree, my life has never been the same since I was diagnosed with Crohn's. I was only 17 when my life turned upside down, there have been some wonderful moments along the way, but overall it has been cruel. I have no friends, no one wants to get involved with me. Except for my parents, my in-law's, and one younger brother, my family has rejected me as well. I come from a family of 7, & my husband has 2 siblings, none of whom want anything to do with me. They blame me for everything that they perceive is wrong with me!!! They really think that I make myself ill to get out of going to one of their parties or functions. They have never visited me the numerous times I have been hospitalized, they don't even send a card. They have written me off as if I never even existed. This is more painful that I can ever say. Who would choose to live their life like this? IT is physically and emotionally HELLISH!!! As I have said before, it is very lonely being ill. The world you live in, is quite different from the world "normal people" live in, but "normal society" is your only frame of reference. I always feel like I don't belong here. Everyday is a struggle, from the time you get out of bed until you drop back in at the end of a long day. I often wonder, what is it all for. Other than making it through another day, I have nothing to show for all of my effort, it is very discouraging!! Today is an extremely tough day, I am in severe pain and have been throwing up all day, so my attitude is a little on the negative side. My sole support is at work, so I am feeling somewhat vulnerable, here all by myself. I am my worst enemy, I beat myself up as much as my family does. I begin to think maybe they are right and it is all of my fault, they have left me with deep scars. But then I gather my senses, and get back in there fighting. Everyday is a battle in the war against Crohn's Disease.

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 9/4/2007 7:07 PM (GMT -7)   
what doesn't kill us makes us stronger.
Belleenstein:

30+ years living with Crohn's.


prof
Veteran Member


Date Joined Feb 2003
Total Posts : 1195
   Posted 9/4/2007 8:17 PM (GMT -7)   
Majorcrisis.. seems we have alot in common.. besides the Cd.. our ages included. My email is in my profile.. feel free to coorespond. I have found the most supportive friends thru these boards!! Prof


Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 9/5/2007 9:48 AM (GMT -7)   
I feel like this disease has totally defined me. I rarely date and am actually quite attractive, so I'm told. I do get lonely but when I meet someone all I think is why would they want to date me? I am always tired or sick, I have maybe 2-3 good days per week.  Who would want that?  I feel also like I am so boring becuase I am sick. I am just not the same person.  I do hope I will feel better on this remicade, but that day just has not come. I want to feel normal.  I don't have a husband or anyone that understands.  My family tries to but no one gets it.
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Entocort, Prograf and Remicade.


sbcgrace
Regular Member


Date Joined Nov 2006
Total Posts : 281
   Posted 9/5/2007 7:24 PM (GMT -7)   
Jenn,
I'm in the same boat as you are. I'm 28 and single. No boyfriend. Most of the time I pray that some day I will have a husband and a family of my own and then I think the same things you said. Who would want me with this struggle? It's enough that it effects my life. My parents are very supportive. I'm living with them right now because the doctor said it would be best because I've lost 50 pounds since March and since he can't find any reason in my blood work for why I'm losing weight he thinks I'm anorexic due to fear of food hurting me. I'm also getting ready to start Remicade as soon as insurance will approve me. So, not only do I have this DD but I'm the 28 year old loser who is living with her parents right now. I pray Remicade gives me back my life so that I can do the things I used to do. The other night I actually did have a date. It was good. This guy's dad has CD and he has IBS pretty severely. It's good to have someone that understands. The only thing is, when our date was ending, he moved in to kiss me and I had the worst wave of nausea hit me. I had to run behind my car and vomit. GREAT! He totally thought it was him. He asked me if he had bad breath or something. I'm not sure he believed me that I just can't control my nausea. I spent the whole next day in a phenergan stupor. I think he gets it. I hope I can hang on to this one. He's attractive, understanding, caring, sweet, always worried about how I am and how he can make things better. I like having someone worry about me and take care of me for once. I'm always so hung up in taking care of myself.
Sorry to vent everyone.
-Grace

Currently 3 x per day 1000mgs Pentasa, Entocort (3mgs), Prilosec, multi vitamin, biotin, Lortab, Librax (for spasms) & VSL#3 (for probiotics) or activia yogurt.

Preparing to start Remicade because I am steroid dependent now.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/6/2007 2:09 AM (GMT -7)   
Wow Grace hope you let this friendship work for you and I hope the Rem. helps both you and Jenn.Some lonely people would be very happy to have a few days or even hours of someones time.I am alot older but never feel that CD or IBS or anything makes me any less a person my heart is still full with the wonder of living life to the fullest.A relationship may take time and understanding but love for a mate in life is worth it if only for the knowledge of having been there .lol gail

majorcrisis
New Member


Date Joined Sep 2007
Total Posts : 8
   Posted 9/6/2007 4:13 PM (GMT -7)   
Although I was lucky to find my wonderful husband, I know what it is like to be rejected by a guy. Until I found my Jay, I never thought I would be good enough for someone to love, especially if and when they found out about my disease. I hid it from most of the people I associated with. I never got too close to anyone, male or female. It was hard work keeping a major part of your life hidden. I did manage to get close a few times, but at the first sign of trouble, they bolted. One guy, had the nerve to break up with me, actually he told my Mother, the night before I was to undergo surgery. He told my Mother, that it was too much for him to deal with and that he had to move on. Needless to say, I was crushed!! We were pre-engaged, whatever that means. That was my last real relationship until I met the man who was to be my husband. I was not looking to get involved with anyone. Fate just stepped in and here we are 24 years later, still madly in love with each other. Yes, we do have our moments, as any long married couple, no kids, sorry to say, do, but we really do care about and love each other. He is my strongest supporter and my best friend. He is also disabled, so he completely understand the frustrations of trying to live in a "normal society". We are a team, in the truest sense of the word. We often say, that although we are two broken parts, fitted together, we make a whole unit. When it comes to my Jay, I feel that I have been truely blessed. He is a gift, that I cherish dearly. He makes all of my suffering worth something. He is always there for me, no matter what the day or night. He makes me feel loved!!!!
crohn's dx: 1976; 10 surgeries, 1 intestinal by-pass, opened in 1985, 1 temporary ileostomy, removed in 1991; Entocort,Metoclopramide,Flagyl,6MP,Protonix,Oxycodone(10mg),Oxycodone CR(20 mg) for pain.


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 9/6/2007 9:30 PM (GMT -7)   
i've had crohn's for ten years, was diagnosed at age twenty, and I feel as though I've missed my entire twenties. I'm now 30, I haven't been able to achieve my dreams, my career dreams, which really sucks because I'm ambitious and there's alot I want to do in life. Having another child would be nice, too! :-(
 
I've been trying to implement more natural approaches like the maker's diet and probiotics, and I'm feeling a little more optimistic. I have my days, though, you know?

majorcrisis
New Member


Date Joined Sep 2007
Total Posts : 8
   Posted 9/6/2007 11:06 PM (GMT -7)   
I feel as though I missed my 20's, 30's and my 40's. Not intentionally of course, but all of your energy is spent just trying to get thru the day. You put everything off until tomorrow, and then one day you look up and thirty years have slipped by. This is simply survival, as dramatic as that sounds. I can't remember what a good day is. Yesterday was always better, but you don't know that until tomorrow. There are so many things I thought I would do. I was not fully grown when I was diagnosed, I often feel that the choice to do what I wanted with my life, when I grew up, was taken away from me. I don't think I even know what I wanted to be or do at that time, I was just being a teen-ager, actually I was in my senior year of high school, and I was at my best. I enjoyed school,being with my friends, deciding where I would go to college and loved playing field hockey and softball. I thought the world was ahead of me. I was never extremely out-going, but I had enough confidence and self-esteem, that most young people seem to possess. One cold night in February, 1976, any hope and dream that I thought I might have had about my future, vanished. It seemed to have been ripped out from under me. So close, but never to touch. This was the night, I had to undergo emergency surgery for a ruptured ileum, which they initially thought was a ruptured appendix. This was also the first time, I heard of crohn's disease and that this was the cause of my perforated intestine. That was all of the info that was given to me at that time, other than this was a lifelong incurable illness. My local medical community was not knowledgable of crohn's disease, as most small town, local medical care were not. They tried to convince me that everything was alright and I should resume my life as it was before. No one addressed the emotional aspect of what living with crohn's disese or any other incurable illness meant. They just kept telling me that I was all better now, and the fact that I still felt ill, was unacceptable. I was doing something wrong or faking it for more attention. No one could explain what was happening to me and I had better snap out of it real quick. I was emotionally traumatized and a part of me shut down. No one believed me (medical personnel, that is), I started to not believe me either. Why was I doing this terrible thing to myself? I must be a terrible person to have this awful pain and feel so sick, yet everyone says it is not true. I started to hate myself. I no longer held my head high, I cowered in shame. My pain, angony and confusion became loneliness and disgust. What little self-seteem I once did have, was no longer there. 32 years later and I still wrestle with some of those inner demons, they are so deep rooted. I still often feel like that lost 17 year old girl struggling thru. I am finally trying to crawl out of this black hole and let that little girl finally grow up, at least to the same numeriacal age as me. I have wasted precious time. I want to get as much as I can out of what is left!
crohn's dx: 1976; 10 surgeries, 1 intestinal by-pass, opened in 1985, 1 temporary ileostomy, removed in 1991; Entocort,Metoclopramide,Flagyl,6MP,Protonix,Oxycodone(10mg),Oxycodone CR(20 mg) for pain.

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