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

Lindsey

Crohns has effected my life in more ways then i can think of and its not even me that has it. Its my mom. My mom is my best friends, always has been and most likely always will be. I do have to admit that when she is in the hospital its the only time the entire family really gets along though. We all sit around and talk all day. Overall I still hate the disease and wish it would leave my mommy alone but it does keep us all close.

9 months ago

Kendra

Crohns has affected my life in every way possible - including relationships.  My relationship with my family has changed, as my parents are helping take care of me (finanacially due to lost wages from being sick) and emotionally.  My fiancee & I have a different relationship than I've had with any past boyfriend (he's more thoughtful and worried about my health, and takes an active interest in it).  My coworks treat me differently, which is sometimes great, but usually just unfortunate - I'm "sick" in their eyes, so they pity me instead of trying to understand.  Some of the effects in relationships are positive, like becoming closer to my family, but some are negative, such as those I mentioned about work...

9 months ago

Jennifer

This is not my "official entry" but I agree with Kendra and the co-worker situation.  At first I chose not to even tell my employers I was sick at all and tried to hide it.  I hate being pitied....

My "official" entry to follow soon....

9 months ago

Heather

CHICKEN BEFORE THE EGG? EGG BEFORE THE CHICKEN?

Change change everywhere for me. My now ex-husband hit mid-life crisis stage in his mid-forties and decided to be a textbook case. "Honey, I'm not happy, and I don't know if I want to be married anymore". I'm not sure which came first, the chicken or the egg... was my disease part of the reason for his unhappiness? His father had been sick for years before dying at the age of 63. Or was it truly he wasn't happy and the stress made me sick.

So I did what every IBD'er would do - I had a flare. Well, my flare was the beginning of the past 2 1/2 years of flare. Go big or go home! I was hospitalized for a month a few weeks later, then again 2 months after that. Finally he moved out. I think he stayed that long because of my illness. If I was sick and in the hospital and he left, how heartless would that look? My two kids are adults - they stepped up. They visited me every day in the hospital, my daughter (who still lived at home) became my caregiver, and my parents and three brothers and two sisters-in-law became my support group from afar. I truly am blessed because my family has been there all the way, and several friends showed their true colours by also jumping in to take care of me. Relationships with my family and friends have become stronger than ever - we all enjoy each other more, lean on each other more, and spend more time together --- not just looking after me, but living, laughing, and not taking life for granted. Yay to life!

9 months ago

Phillip

Good question.  Crohn's definitely has an effect on all the people that I am close with.  I am definitely more of flake than I care to be and that effects things.  I've always kept things to myself since an early age and I don't think many of my friends would think Crohn's has any bearing our our relationship, but that's just because I keep them in the dark about it.  I try to downplay Crohn's as much as I can, because I want to try and make it as much as a non-issue as possible.  Perhaps that is a bit of denial, but it has also allowed me to persevere in some things were maybe others would not try or give up on.  So I try not to make Crohn's an issue in my relationships, but I might be guilty of ignoring something that I shouldn't.  To me there is always the "elephant in the room", but I am probably the only one that knows about it. 

when you don't share with people they are less likely to share with you.  I think I have a lot of good friends because of that, but I don't have many close friends, which if I think about it has been my M.O.  But since I've had this disease for all of my adult life it is hard to say what I would be like if I didn't have to worry about Crohn's.  I have a hard time separating what is my natural personality and what is dictated by Crohn's.  But since this is something that I'll probably have to deal with for the rest of my life that distinction really doesn't matter.  

I feel I am a little "retarded" when it comes to relationships.  My disease was the worst from 15-20 and that is probably when you really start to develop relationships and at that time in my life being in a relationship was very low on my priorities.  Instead I had to think about number one first and foremost and I am still guilty of putting that first.  I suppose you always need to do that to some extent, but relationships have been a distant second for the most part. 

That being said, I really complain as I've done and seen many great things and personally fulfilling things.  I just need to work on evening the scales a bit more.

9 months ago

Vicki

I was Diagnosed with Crohns in 1997. Since then my family, friends and coworkers have been my backbone.

I was working in a management position and I Immediately told my Supervisor about my disease as well as my employees. They all watched out for me when I wasn't feeling well. They would tell me to go sit down and take a break and cover for me. I was going thru a bad flareup and one of my managers drove me to the hospital and stayed with me until my husband showed up.  I had the best employees as well as other managers.

My husband and family are my number one supporters. They take me to my appointments and sit with me and make sure I'm eating right and taking my meds. 

one of my daughters was diagnosed about 1 1/2 years ago and we were able to get the same GI Doctor and have even had a few of our Remicade appointments together. we share new information with each other and we even go to the CCFA Symposiums together.

Since having Crohns it has made me a much stronger person on the inside and out and I wont let this Disease run my life. I

9 months ago

Paula

Since I was diagnosed about two years ago, my whole life has changed.  My relationships have suffered greatly.  I have found that many people who I thought were my friends were unable to stand by my for the long haul. I even heard someone I thought was a close friend ask me if I was,"still sick".  I get the feeling that my illness is inconvenient and a little boring to some in my life.  I think that after the 3rd or 4th, or even 5th or 6th hospitalization it becomes not such a crisis and simply an inconvience. 

I'd like to be one of those positive happy people that writes about how wonderful and supportive everyon had been but that really has not been the case. 

I feel that I need to be careful not to let too many people at work know that I am sick, I'm afraid that I will lose my job.  I have been unable to work full time since I was diagnosed and have recently been called into a meeting with a supervising administrator who tried to intimididate into quiting or going fulltime, and now I have to fight this (luckily I seem to have the backing of my union).  Crohn's has affected every relationship in my life, and not in a good way.

9 months ago

Oka

Oh Dear-Where to even begin when this has been a part of your life since you lived with a belly ache since you were this skinny little girl. Where I was raised we didn't doctor. My mother was a nurse, and since she didn't seem to take my complaints too seriously then I felt like a hypochondriac-even at a young age. Unfortunately, this made me turn into a very charming and fake actress. I could smile during pain. Inside I was crying out for just someone to see that there was pain behind my charades. It never happened. I had to have been anemic for the most part of my life as we have pictures of me as a youngster and in the hottest weather I was loaded down with one, two or three sweaters. Again-though, this was normal. I did not do myself a favor by holding so much in as the pain was simply horrible, and mine was in my stomach. Now, mind you, it was okay to discuss my tonsils and ear aches (Which have left me hard of hearing from so much scar tissue and so many ear infections). I had my tonsils removed when I was about ten, and I even gave my mother and the doctors a scare at this time, but I bounced back, and I actually had it made while in the hospital. My mother was a nurse at the hospital that I was in as well as many of my aunts. So, by the grace of God, I did not grow up with fear of hospitals. Someone up above definitely knew what He was doing in regard to that as I have had so many surgeries over the years.

My husband did not even realize the pain I endured, and I was a perfectionist. I worked with pain, and if only I could go back in time as I am so close to living life as an invalid. I become angry with my body now, but in my heart I know that I was the only one who knew something was seriously wrong. I will not go into detail, but a wonderful gyn who I could pour my heart out to was discussing my stomach pain. He explained the difference in duodenal and gastric ulcers. I had the old type of hemorrhoid surgery one year prior to this conversation, and no one noticed that all of my trays went back to the kitchen in this hospital barely touched. I could not get food to go down, but-the usual feelings had surfaced that I was really not important and who would listen anyway. The day the wonderful gyn and I had our conversation was to change my life forever. In fact, I give him credit for saving my life. After he had explained the way each type of ulcer operated, more or less, he told me that if the pain ever began in my back to not fool. I was astonished & told him that I had been walking the floors during the night for months. I had no idea the ulcers were ready to perforate. I will shorten details, but I did not even have a chance to become stronger when I was placed in the hospital as the scope would not even go down. I had complete blockage. My poor husband and sister waited for 23 hours to even see me (I know my husband thought he would never see me again.) when he had to go and get some sleep and check in with his mother and 3 children. I did not think I'd ever raise my three little ones, and that was such a horrible and empty feeling. Well, as you obviously know, I made it and if I can simply get one person to take care of themselves and make a doctor listen to you. Again, after so many years of being told that I was fine then it was actually a relief when days later I realized that I had lived. I knew things were bad just by the looks of people's faces. I was in for three weeks, and I simply did not want food. I had to learn to eat again and to know what foods to avoid and that I learned the hit or miss hard way. I was not told. Boy, actual stomach dumping is extremely painful. I had not been diagnosed with Crohn's Disease for many years. I continued to have repeated bouts of this, and I will forever be grateful to have been given a second chance to raise my children. I worked when I should not have though, but I definitely was obsessive compulsive. I am now, but unfortunately, my body doesn't behave. It even ignores me. (ha) I know it was most difficult on our marriage, but I will forever be grateful that neither Larry nor I would give up trying to keep us going as a family. Not to say that it was not very trying! I always gave him a very long rope to stretch as I knew how easy it would be to not wish to be around a sickly person and a complainer. Sadly, I had no one through those years to pour my heart out to. One great compliment to CCFA is that was my turning point-such as this site will be and has been to bring those together who would know what the other is and has experienced. It is wonderful! I must admit that Crohn's Disease has most definitely proven to me who my real friends are. I love people, and I would be a social butterfly if possible, but when "supposedly" friends realized that I could not plan from one day to the next all but a few of the people from our music family pulled away and stopped asking me to go places, etc., I have severe chronic fatigue, and I never know how long it will last. I could have it for one day or all the way to months which is the norm.

If this testament of a sad life due to withdrawing and not letting others in on my physical problems then and now will help even one person open up and do not feel ashamed nor weak then I have accomplished what I have been hoping for. I felt less of myself as a person, but I finally know that I am a worthy person, and I have many friends who have finally accepted me and it is only due to my finally letting others know from the get go that there would be times they will hear from me and that there will be other time frames which I do not know, but I will always bounce back. I have a great desire to live and I will go out of my way to help others. I truly can't imagine anyone who belongs to this huge site who can't help but say that IBD has made an impact on the way they live their life and that there will always be a rainbow after the storm. Our individual personalities will contribute to the way we handle these diseases which is Crohn's Disease and/or Ulcerative Colitis. It has brought a friend into my life who I have never met and pray to do so one day, although many odds are stacked against us, but Lynn Peterson and I have our dreams. Even in your darkest hour, please know that any one of you could write to me, and I would never do anything but try to show you I understand and will never condemn as I am only human myself. Perhaps CD has in a very bizarre way been a gift as I certainly care deeply for others. I have my dark days and don't invite others to my pity parties, but I do try to be positive. My greatest prayer would be to not have the fatigue as there have been many episodes this past winter that I have not left my home for up to three weeks at a time. I thank God also that I do have this line of communication which I would have given anything to have had when I had no one. I am 62 years young, so if I can make it then so can you. I invite anyone who wishes to talk in private to contact me inbox, and I will give it my best shot. All who have been most involved with this program will note that I tend to stay out of the limelight. I don't need it. I know that Lynn took that job upon herself, and I am so very happy and proud that she was chosen to be a site leader. What more could one ask for when you see one who has so many battles to fight, but you will see her in that chat room and making it a point to welcome all newcomers. God gave her a great gift, and I hope this We Are Crohn's .org realizes it. Okay-Marriage is work, keeping or not keeping "firends" and many other challenges will be your cross to carry, and that part is up to you. Windy will finally release you, and I assume by now that you realize that one thing I do enjoy is I love to write. However, I realize that I get on this subject and my fingers do not know when not to do the walking. ha-I wish you well. Sincerely, Oka

9 months ago

Katie

Your true friends become quite clear through the years. Crohn's has both ruined and strengthened certain relationships for me.

9 months ago

Diane

I was diagnosed with Crohns in 1997 at the age of 41. When I was first diagnosed my husband was very supportive. It has caused some upsets in our relationship but overall he stays by my side. We recently did the Crohns Walk here in VA and several members of my family and friends attended. We had a great time. It was so wonderful to have such great support!  I am on disability and it makes it hard financially, but we manage to cope.  Over all the support and love is there but only I know what its like to have Crohns!

over

9 months ago