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It's official: I hate Crohns

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Crohn's Disease
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Posted 9/30/2013 11:34 AM (GMT 0)
I just hate the way Crohns is getting in the way. I have so many things to do, and sometimes it seems impossible. I hate that it is so unpredictable. I hate being just fine one day, and the next I'm totally exhausted. No reason, nothing "bad" I did, ate etc, it just decides to appear out of nowhere. I hate sitting at my desk and hearing my stomach making horrible sounds as if an alien is about to appear. I hate feeling nauseous and having no strength at all. I hate not being to able to sit in the middle seat when I go to the theater or movies or concert etc, just so that I can be near to the toilet. I hate having to explain how I feel. I hate seeing the anxiety in my daughters eyes when I'm not feeling good.I cannot plan anything because I don't know how I will be feeling that specific day. I hate that food is a mystery, one day I can eat whatever I want and be fine, next day I'm sick just by drinking tea.
Omg, sorry for ranting, I feel so much better, and all of you are the only ones that truly understand every single word.
Anyway, chin up, try to smile, that's the only way I guess.

Christina
Posted 9/30/2013 2:32 PM (GMT 0)
I'm sorry you are having such a hard time. I don't have any words of wisdom but I understand where you're at mentally and physically. Don't be sorry for ranting. If that helps you and gives you any measure of peace or comfort... Rant away.

New meds, diets, understanding is happening all the time. Even 10 years ago cd had a lot less treatment options then today. Things will improve.

I hope tomorrow is a better day. Hang in there.

Sandy
Posted 9/30/2013 3:48 PM (GMT 0)
I agree with you. I HATE CROHNS! Hopefully I get to start Humira this week. Chrons is running my life not me. Went grocery shopping yesterday. Had to go to the rest room 3 times while there.
Posted 9/30/2013 5:27 PM (GMT 0)
I couldn't agree more, it's a very nasty and ignorant disease with an ugly mind of it's own that grips us and has us at it's mercy...it's disgusting on every level.
Posted 9/30/2013 5:28 PM (GMT 0)
It's nice to know that I'm not the only one who gets sooo frustrated with this disease. I'll add to your rant list that I hate how the seriousness of the disease is belittled. I've had so many insulting remarks and comments not to mention the downright goofy advice on how to "cure" Crohn's throughout the years. Maybe I'm just touchy, but when someone tells me eating Archway coconut macaroons will cure me, it's hard not to want to sit down and cry. Seriously, that happened.
Posted 9/30/2013 7:57 PM (GMT 0)
You are not alone. It's been a rough 3-1/2 year for me and I get mad every time I have to rush to the bathroom or the pain for no reason.
Posted 9/30/2013 8:15 PM (GMT 0)
I hate having a stoma about as much as I hate having Crohn's. I actually had one massive advantage with the Crohn's; I was still continent. Ill and in pain, but continent.
Posted 10/2/2013 12:37 PM (GMT 0)
So nice to know that there are ppl out there who really understand... Thanks for your replies, I'm in a better mood today, but I still hate Crohns wink

Few days ago I had this dream, I was feeling just fine, somebody called me and said that I didn't have crohns and I could relax and enjoy life to the fullest. Woke up in misery. Reality hit me once again! So many years with this disease (almost 15!) and still cannot accept that it's part of me.

I really hope all of you are well, and symptom free 3>

Christina from shiny Athens

cool
Posted 10/2/2013 5:01 PM (GMT 0)
At least you can escape from your CD when you're dreaming...I dream a lot about trying to find a bathroom that isn't filthy dirty and/or completely public (having to "go" in front of strangers in my dreams) it's like I can't escape it even when I'm sleeping...it's very stressful to live this way (exist this way is more like it, cuz this isn't living). It's torture.
Posted 10/2/2013 8:54 PM (GMT 0)
I hate this disease to. I hate the " you don't look sick" and the "your bloodwork was fine" and the " at least you don't have cancer".
I know there are people who are way sicker than me, and I feel sorry for them too. I think it's only human to feel bad for ourselves when we feel so ill and have to be oh so strong.
Posted 10/2/2013 11:39 PM (GMT 0)
Oh, pb4 I have the same type of dream! And always where the toilet is open to everyone walking by, or I can't get into it. I usually wake up needing to go.
Posted 10/3/2013 11:26 AM (GMT 0)
Just once I'd like to go shopping without having to rush to the nearest toilet! DH knows when I disappear in public where I've gone and I'll catch up with him as soon as I can.
Posted 10/5/2013 1:10 PM (GMT 0)
I noe I noe, its bad fr all of us "Crohn-ians".. Even when I have high will power, my horribly low stamina lets me down... And then there are other symptoms which keep pestering...
But whatever its done to me, I dont hate it, I dunno why... I noe I have certain limitations, but dont these limitations make me out of the ordinary?? Doesnt every victory of mine mean more? If all of us try to be a bit optimistic abt this, I think its gonna be easier to continue with life.. Cuz im just 16, lyf has just started, and I hv to deal with "Mr.Crohn" here who does keep pestering me..

(did this help? 0:)
Posted 10/5/2013 1:11 PM (GMT 0)
Btw, loved the title!
Posted 10/5/2013 3:38 PM (GMT 0)
I recently had a dream that there was a toilet paper shortage and I only had 1 roll left. Considering that I don't get D very often this was a strange dream for me.
Posted 10/7/2013 2:52 AM (GMT 0)
Yeah, no optimism about this disease for me. It's robbed me of too much for any of that. Right now a victory for me is making it to the bathroom with massive diarrhea, when I could barely walk because my ankle joints hurt so much. Barely have the energy to do basic every day stuff. Yeah, hate is a good word for it.
Posted 10/7/2013 7:45 PM (GMT 0)
I agree! And have those same bathroom dreams too!! Weird. Lately I am bummed that my whole summer was ruined by a huge flare and surgery. And now I am plagued with tapering off oxycodone and prednisone before I can return to work. Add to that the constant D from my resection. But despite the negatives I am optimistic things WILL get better or I will just have to adjust to my new normal. If this is the worst thing I ever have to endure then I am pretty lucky.

But we all deserve pitty parties once in a while, so rant away! :)
Posted 5/5/2014 11:57 AM (GMT 0)
I have had crohns for 12 years, my children call me "bubble guts". I hate having this disease. I hate the noises my insides make when I am speaking to people. I hate the pain, not being able to work, running to the toilet umpteen times a day, the depression, the swelling, not knowing where the toilet is always, running out of toilet paper, the not knowing if I am going to run to the toilet when out for dinner, the inability of eating certain foods that are going to make everything worse, being scared of using a toilet outside of the home, the pain brought on by the drugs the doctors give me, being scared of travelling because of unknown areas, not knowing if my insurance protection payments are going to continue. Yes, I look healthy on the outside, but inside, my joints are aching, my muscles hurt, I am often asked "when is your baby due?". I don't have any energy, it takes me 2 hours to get out of bed (and yes, accidents occur), if I stay still for more than 20 minutes then I can't move. I won't win any marathons to get to the toilet because everything else hurts. I can't make love to my husband because of the pain, that kills me. I am so very, very sad. I cry alot. I just wish this horrible disease would go away. I hate it. And, I lost my job because my employer couldn't cope with my hospital absences, or the fact I was in the toilet so often. On Humira injections, methotrexate and other drugs (got severe joint pains after Infliximab infusions). The joint pains continue, the muscle pains are bad, and it all just sucks.
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