Why is this still so hard?
Sat, December 25, 2010 12:44 AM
Ok so I've had Crohn's for practically my whole life, diagnosed 4 or 5 years ago, and I'm young yet so I kinda grew up with it. I should be use to this by now. In fact I'm a major Crohn's advocate and I help other people with it and most of the times I'm fine, but not always. I know I'm not suppose to have it together all the time but I think it occurs to me that sometimes/ a good amount of the time I act like I feel better than I do just because I don't want to talk about it. I've done the therapy route but in the end it doesn't help because I just want someone who doesn't pity me, and truly understands what I'm dealing with but no one really does...
My whole body hurts. I can't keep relationships because with my disease I'm too high matience. My family never asks me besides anything else about my health, and when I say not good they are obviously disappointed and say things like 'arn't you ever gonna be better?' I know I've missed opportunities of a lifetime because of my disease. I've had to take major life risks for treatment options.
I want to live a fulfilling life- more than any healthy person to prove to myself and everyone else that I can but part of me just wants to do nothing and let myself become really sick because deep down inside its engrained in me that that's who I am- a sick kid, someone who is not worthy to take the time for.
shouldn't their be a middle road that doesn't involve me feeling like I'm living a life that isn't mine?
rachjJoined Jun 2, 2008
Wed, January 12, 2011 8:55 PM
Reply posted for rina.
Rina, I am so sorry you had to put your doggy down. 
Joined Jan 12, 2011
Wed, January 12, 2011 8:53 PM
Reply posted for rachj. I can relate to that. When people ask you about your health and act like they totally pity you because of the disease.
And I hear you about the relationships as well. It sucks that people don't understand or looking at personal profiles that say they're looking for a "healthy" person. It makes me want to cry.
Joined Jan 12, 2011
Fri, January 07, 2011 4:32 PM
Reply posted for writeractor.
Having quite a rough day myself, rough week actually. It is so hard dealing with something no one around you understands. I have tried so hard to keep my head up. I had to put my dog down tuesday due to many many seizures she was having, she just couldnt go on like that. And the stress and guilt have made me so sick that im in so much pain. And noone gets it, i am the saddest ive ever been but reading your posts helped me more than u will ever know. So nice to have people to understand what youre going thru.
Joined Dec 17, 2010
Sun, January 02, 2011 11:21 PM
Reply posted for writeractor.
PART 2 of my response:
A friend of mine who is a former alcoholic says it isn't unlike living a 12-step program. Having to choose, every waking moment, not to take a drink. For us, we have to choose, every moment, to participate in life, extend forgiveness to those who do no understand, communicate to them that while we appreciate their concern for our disease, please don't let it be the first thing they ask us about.
I don't know how I am going to battle the constant fatigue I've been having lately. The symptoms I'm trying to pretend aren't increasing. The sadness I feel about it all. But I do know this: reading this here has helped me a lot, and I hope that by sharing, I might have helped someone else.
It is not enough, ultimately, as it is not a cure. And I am not satisfied with ANY balm unless it is a full out CURE. But for today, at least, it is going to have to do. And, so, it does...
writeractorJoined Jan 2, 2011
Sun, January 02, 2011 11:20 PM
Reply posted for rachj.
I completely hear you ALL and am, frankly, relieved I happened upon this message board tonight, as it is a bad night for me. (So much physical pain right now in my colon and joints.) I was diagnosed in the early 90s and have been living with UC for 18 years now. I've had three hospitalizations. The first two were relatively minor, 2-3 weeks each. The third, in 2006 was horrific. Nearly 4 months long. I hemorraged repeatedly, received countless blood transfusions -- was ALLERGIC to the blood transfusions and to the Remicade that ultimately saved my life.
One day during that last stay, one of my favorite nurses, Linda, walked in to find me sobbing uncontrollably. She sat down on my bed and hugged me for several minutes. When I could finally talk, I said, "I know there are 400 people in this hospital with worse diseases than mine. I should be thankful it isn't worse." She said, "You are very sick. This isn't a contest. And their suffering does not negate your own." In that moment, merely getting the permission to be sick and at my lowest point EVER saved me.
But I understand your desire to just get sick again, my friend. In that moment, we know what life is about. Things are VERY black and white: Get better or get sicker. Dealing with life's petty issues is VERY hard for me since that hospitalization. I sometimes want to scream whenever people freak out over the small things in life.
Ultimately, however, we are not our illnesses. Yes, they are a large facet of our lives, but we have to choose to live life as much as possible. It's so hard when those around us do not get it; when we are in constant pain; when our greatest hope seems to be to accept our circumstances and press forward in spite of them-- and BECAUSE OF them. But that's the hand we've been dealt so we're gonna have to play it if we want to stay in the game. AND WE MUST STAY IN THE GAME!
writeractorJoined Jan 2, 2011
Fri, December 31, 2010 9:55 PM
Reply posted for rachj.
I completely get you, I had surgery 6 weeks ago. Guess what still in pain, and having issues. I have a two year old daughter who depends on me 24/7 and a husband, but with this stupid disease it keeps me down a lot. Right now I am still having issues and I'm starting to get depressed. I just want to feel better, my doctor thinks the chron's is attacking my liver now, so it is one bombshelll after another. Trust me I get you. I wish I could go back to when I wasn't diagnosed with this or having issues.
smaciasJoined Dec 31, 2010
Fri, December 31, 2010 12:59 AM
Reply posted for rachj.
So lets be clear about my post, I am in no way a depressed person even though that post was extremely depressed. In fact I lead a life that I am extremely proud of and would not change much if anything if given the chance BUT that does not mean living with IBD is easy.
It is something that is the biggest part of my life that none of my loved ones relate too and even though there are places like this forum it does not even begin to compare to having someone who knows what you go through everyday. I've seen counsolors and in the end it was a mutual agreement that given what I'm dealing with I'm fine. I like talking it out with someone but at the end of the day wasn't what I needed and here's why- they don't know what I'm dealing with beyond what I can explain in a way they can understand, my physical needs change by the hour so setting a clear medical path is practically impossible, and in some ways learning on your own to deal with new situations is how people become better.
The overall reason for posting is I've dealt with this for years and my experienced doctors and former counselors ect have all agreed given the circumstances I'm dealing better than expected. THAT DOESN'T MEAN ITS EASY! I still wake up disappointed in the middle of the night when I have to throw up. I'm still sick of running for bathrooms, I'm still sick of constantly being in pain. I deal fine, that doesn't mean it isn't a battle everyday! I seemed to always imagine that slowly my standards would change and I would be ok with the pain or if not ok at least familar. I'm at the point when its old hat but it doesn't stink less- in fact I'm annoyed that I want to be ok with feeling icky. Its still hard. I wish it wasn't, I wish I could accept this as my new standard of living but its the desire to get better that created medicine itself so maybe everyone of you feels exactly how I do.
rachjJoined Jun 2, 2008
Tue, December 28, 2010 7:09 PM
Reply posted for alivein315.
continued response ........
The best thing for you to do is to stay positive, focus on yourself and helping others (giving back is always a great feeling). Get acceptance from God (I beleive He is the only one who truly understands me). Also, come to accept the fact that your family just isn't going to get it.. Have no expectations that they will and you won't get let down. Oh and yes, get out there and try not to be a home body/hermit hahaha I am a total home body because I work at home but also because I'm not into going to bars/clubs anymore. Meet your friends for lunch (yikes food, i know) or go to their house to visit.
I hope that some of my words have helped you a little. I'll be there for you and I'm sure other people in this community will too. Just know you are not alone. :)
Joined May 30, 2009
Tue, December 28, 2010 7:08 PM
Reply posted for rachj.
I can totally relate. I've had intestinal problems since I was 17 years and I'm 32 now. I have been REALLY sick for the past 3 years and at this point in my life, not even my family as how I'm feeling/doing. No one really "gets it" because they don't have it. If it weren't for this CCFA COMMUNITY and support here, I would be TOTALLY ALONE. These autoimmune diseases are difficult to understand for the people that don't have it. People think I don't want to get better, or think I like the attention I get from being ill, they think I'm lazy and don't want to work, they think I don't take the medications or follow the directions of the doctor. The list goes on and on what people think about me & this illness. I know that I'm never going to be understood by my family and friends and I have come to accept this. I still love them, but it makes it hard to have a relationship with them because it's like I have this part of me that puts a divider between me and them due to the illness.
You have to seek understanding from people that you know will understand, like this forum and or groups that offer help for people with chronic illness. I know it sucks but it's our reality. I am sorry you have had a lifetime of dealing with this illness, but like our friend said, someone else somewhere has it worse.
Joined May 30, 2009
Tue, December 28, 2010 11:03 AM
Reply posted for rachj.
i understand how you feel, but since you are participating in this forum you must see that you are not alone. you also must realize that even though you might have it bad, there is always someone out there that has it worse than you. if everybody was to throw their problems in a pile and asked to switch, you would *** yours back in a hurry. this disease has really got me down at times and still does. i would recommend getting some mental health help. it has helped me significantly. i find it important to try and participate in the outside world on a daily basis. staying home puts you in a rut thats hard to get out of. keep your chin up.
Joined Dec 10, 2010