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new chrons sufferer things are hard

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Crohn's Disease
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Posted 10/4/2008 7:51 AM (GMT 0)
shakehead  i have only been diagnosed for 14 months but suffered for years. i am waiting to have my third op in 8 months (seton drain) and feel sometimes like this disease is holding me to ransom. i'm tired of taking time off work, needles, hospitals, pills,surgeries and a sore bum! mad at first i felt releved to have a diagnoses but i did not know how much my life was going to change. my boyfriend of 13 years is finding it hard to cope with the scars and dressings and we now have separate bedrooms and no sex, i know he still loves me and i love him too. i'm seeing a counsellor who says give it time for everything to settle down.  but right now life is hard cry

everyone says how brave i am but really what option do you have with this disease you just have to cope and deal with each thing as it happens.  this is just a rant on a bad day but it is nice to finally have a place to say these things to people who might understand what chrons is really like and not just think that i'm brave and dealing with it all so well.

plus i really hate rectal exams by cute docs smhair

 

Posted 10/4/2008 8:43 AM (GMT 0)
hi wendy, welcome to our little corner.. things will get better, just hang in there!
Posted 10/4/2008 11:01 AM (GMT 0)
Hi I hope today finds you in better spirits. You been threw alot and as Randy says give it some time. Are you on any meds that might help heal up the fis.? I am glad you have someone to be with and hope you both can hang in there till things improve.Perhaps a good cuddle on the couch will get you some relief from your woes,some days are hard. lol gail
Posted 10/4/2008 1:04 PM (GMT 0)
PLEASE Rant on, we do it often here, and highly recomend it for venting Crohn's frustration ad staying somewhat sane. I know people here will listen, and offer the very best advise. I just started butting in several
weeks ago, and everyone here has treated me like family.

I would suggest you check out the resource center. Some of the suggestions offered there can improve quality of life a great deal for us, and some diet changes may help heal the fis and surgery sites somewhat more quickly.

My family has learned new ways to love me. Sometimes I cannot stand for them to even touch me, but they remind me to eat well, hold me accountable, and remind me that most days are still good. Oh, we are brave warriors,but I hope as fellow Cronies,we have more to offer you. Just ask.
Posted 10/4/2008 2:51 PM (GMT 0)
im sorry, i went threw the same thing in my old marriage, you will be fine no matter what happens...

btw whats so wrong with rectal exams by cute docs :)
Posted 10/4/2008 3:52 PM (GMT 0)
better then ugly docs in my book...
Vent away!
Posted 10/4/2008 5:17 PM (GMT 0)
Welcome Wendy to our poopy little corner of the world. There are so many wonderful folks on this board and we all know how you feel. So vent away, we do understand.

God Bless,
Gail *Nanners*
Posted 10/4/2008 8:39 PM (GMT 0)
It's always hard when the docs have big fat fingers too! Thankfully my GI has thin fingers, and I haven't had a rectal for quite a while now. LOL.
Posted 10/5/2008 12:28 AM (GMT 0)
wow, my GI has never even gotten near me with a finger. what's up with that?
vent away, wendy, you are in the right place. by the way, i was pretty newly married when I got sick and thru surgeries, meds, pucking, and more, I just kept having sex. find a way--it will do you both good. hugs, yp
Posted 10/5/2008 12:59 AM (GMT 0)

blush   thanks for the replies it is nice to know there is people who have some clue what it is like. i will be a regular member and i'm glad to not have to act like all is well.

today is better day off work and good long sleep in cool

Posted 10/5/2008 4:04 PM (GMT 0)

I know the comments are well meant, but sometimes the "this only makes you stronger" stuff drives me nuts.  I don't want to be stronger!  I want to be normal.  I want to be healthy.  I don't want to have to pack my own personal roll of toilet paper everywhere I go.  The only meant-to-be-encouraging comment that bugs me more is "well, at least it's not cancer!"  Gee, thanks.  That helps a lot.  I try not to let the comments bother me, because I know they're trying to be supportive.  But sometimes I have to hang on to my temper with both hands.

Posted 10/5/2008 7:51 PM (GMT 0)
Bektold, I know what you mean! I have those days also...
Posted 10/5/2008 8:06 PM (GMT 0)
Why are you sleeping in seperate rooms? Even if you can't have sex you can still sleep in each others arms. Hope things get better!
Posted 10/5/2008 11:10 PM (GMT 0)
i know exactly what you mean about the cancer comment i was just talking to my nurse this morning during yet another dressings change and said to her the worst thing i think people can say is ''at least it's not cancer''. just cause it not cancer does not mean it is any easier.

the sleeping in separate rooms thing started when i had my first surgery and i had to wear a very noisey vac machine on my wound and he was afraid he would bump me or hurt me. now he says i need to make sure i sleep well and concentrate on gettin better.  i think maybe it is easier for him to avoid the reality i'm not the same i was if he does not have to see it.  it has been 9 months since first surgery and he still has not seen my scar.

don't get me wrong i understand his way of dealing with it is to avoid it and let face it if we had that option we would take it too but i just hope he will learn to accept it. sad

Posted 10/6/2008 3:05 AM (GMT 0)
Gotcha. My hubby almost had to start sleeping in another room because I move a ton when I dream and punched him a couple times in his sleep, in addition to saying all kinds of random stuff. He got used to it though and its now our excuse wehnever he has strange bruises.

PS: maybe a good way to start repairing stuff is to tell him "I know you aren't ready to see it yet but if I still change when you are not in the bedroom and sleep in PJ's can we start sleeping (really sleeping) together again?"  Work back into it slow.

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