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Hi I am having a really hard time right now and dont know where else to turn except for here since no one really knows what its like unless you have it. I have crohns diagnosed about a yr and a half ago and its really strating to where on me emotionally its has its physical too. I have not been without ain in over a year and cant seen to get a handle on it the flares come and go but the pain is always there muscles,joints, stomach etc. Saw my PCP Friday and she is sending me to an RA Dr and did a bunch of blood work waiting to hear about that and have to have an ultrasound for my gall bladder on Thursday.I just cant seem to pull myself out of this rut I am in right now and its hard to put on a happy face all the time and pretend everything is ok when its not because I dont like to complain all the time to my family.I am trying to hang in there but its hard and sometimes I just wish I would go to sleep and not wake up then I wouldnt be in this pain all the time.

 Reply posted for msalanui.

WELL i have crohn's... three sugeries, medication, and life... i am not going to lie, there are days i have had enough.  i have the 'day to day' attitude.  humor and  being hard headed have gotten me by.  (my family knows i hate to shop... bathrooms are never clean ... so i share gas and watch and grin.... i get by.) i have 100% disability from the military...they said 6 months and i would be in bad shape --ruptured, bag, and pain -- that was four years ago...i told them i was too hard headed to lay down and die.  i have worked 18 years now for the state prison in texas -- could not get hired by a non-goverment job -- for some reason convicted fellons have little or no compassion -- i just vent my bag and they leave me alone.  i wish i could say the flowers will bloom and the sun will shine...what i can say is there are good days, and then there are days i have to either be hard headed or "entertain myself"  good luck, be brave, and if all else fails laugh!

 Reply posted for love my dogs.

Hi everyone, I founded out last May that I had crohns and Sept 28th I am scheduled for my 1st surgery.  I agree it is very hard, and my family doesn't truely understand everything I go through.  Many days I'm tired and my back and legs hurt and no one can explain why.

I'm tired of the weekly blood test and change from one medicine to the next because its not working or its effecting my liver or system.

I'm hoping to improve after surgery, but still scrary.  The say it may or may not help. 

I like many of you do my best to go to work everyday, and come home and still be a good mom of two (a 16 year old and 7 year old) kids and a wife.  But most days I wish I could just stay in bed, some days I just want to cry.

I hope for a cure SOON.

Hugs and well wishes to you all

 Reply posted for paver.

Thanks for the reply I guess I shouldnt really complain it sounds like a lot of people on here have it a whole lot worse than i do. I mean 38 years WOW although I guess since there is no cure it is life long. worry about as I get older it will get worse I havent heard anything like that but.

 Reply posted for msalanui.

i hope you are feeling better now.i have had crohns 38 years and six resections nand lost half my colon so i know how you feel sometimes.talking with other crohns people help keeps me grounded.keep this in mind that it could be worse so i pray for you to hang in there better time are around the corner

 Reply posted for wesson48.

thanks Amy I will for sure email you it would be nice to have someone to talk with who really and truly understands..

Tracey

 Reply posted for msalanui.

I understand how you are feeling!! I have been diagnosed with UC in 2007 and found out a couple of months ago that it was actually Crohn's!  My doctor has made me steroid dependent, keeping me on prendisone since 2007! So with the prendisone came the 70lb weight gain and Type II diabetes.  Since this is the sixth time I will be trying to taper off the steroids, my new doctors are trying Humira.  I have been feeling depressed myself though cause the Humira isn't working.  Now I am facing the possibility of losing my entire colon.  I am very angry about that.  There are times that I have to talk myself out of bed.  It's hard because I have a 2 yr old that is very demanding.  I find it hard to put on the happy face and pretend that nothing is wrong when inside I am so angry and frustrated.  I just can't seem to see the light at the end of the tunnel right now.  If you ever want to vent, I am here for you.  Vballxchic@aol.com 

 Reply posted for Nelly.

Thanks Nelly whats funny is I tell my Dr's about my joint pain and they tell me well I don't know what it is this is the first time I have heard anything about arthritis and Crohn's going together my RA blood test came back negative surprise I think all my blood work comes back normal... but I see the Rheum. Dr in a couple of weeks.Its every joint in my body I am on Remicade too going every 6 wks helps with the CD but not the joint paim I also did Humira that helped the CD but not my joints either although my Dr's are treating my CD not joint pain since none of them seem to know whats causing it.I am trying to stay strong for my family but I sure am wearing down fast.

 Reply posted for msalanui.

I know how you feel. I was diagnosed with Crohns and Celiac disease 2 years ago. I am now on Remicade every 6 weeks. Arthritis just came into the picture in March and I am having a hard time with it more and more each day. What my Dr.s had said is that Crohns and arthritis go hand in hand. There are days I don't even want to wake up but then I think about my family and I know I have to try my best to stay positive. The Dr.s are thinking of taking me off Remicade now because it's not lasting long enough for the arthritis. My crohns is doing pretty good now but not my joints. I am scared to get off of it because of the things I have been hearing about Humria (sp?) which is what they want to put me on next.

 Reply posted for msalanui.

I completely empathize with what you're going through!  I have constant pain.  Whether it's my colitis, arthritis, back, there's always something that hurts.  Somedays, I think to myself... I just want to "go home", or as you put it, not wake up.  I want to be out of this faulty body and feel healthy and free again.  I'm not saying I would ever attempt to take my own life, but somedays I don't bother to even get out of bed.  No one can truly understand until they've experienced a chronic illness that forces you to be dependent on others.  Whether that be friends and family, or the government.  I'm not going to tell you that things will get better, and that you need to be positive, because I don't know if things will get better, and I myself can't seem to stay positive.  But I wish you the best and truly hope your pain improves.  Good luck to you!

 Reply posted for msalanui.

Sick people and well people do not mix very well. They don't understand where you are coming from. It is best to not say too much around healthy people. I have had two chronic heath conditions for twelve years and one for over twenty years. Learn all that you can about your condition and keep trying various corrections. The doctors don't know everything. Treat yourself good and don't abuse yourself. Every time that you get knocked down, get back up and start swinging. Be determined. Every time that I think that I can't go on I reach down deep inside and somehow find the strength to go on. Learn all that you can about diet and nutrition. Get plenty of sleep. Get mad. Fight. Take joy in the small accomlishments and victories.

 Reply posted for love my dogs.

I think I had it for years before being diagnosed I was diagnosed about a yr and half ago. And I know what you mean about family not truly understanding and what makes it even harder is that I am in a kind of new relationship with a gut we have been together for a yr now we do live together and I always seem to have to be happy and put on a happy face and I try not to complain about stuff my daughter shes 18 seems to think thats all I do when I really dont I think when I go for my next Remicade infusion I will take her with me so she can what I have to go thru

 Reply posted for msalanui.

I know it really sucks be trired all the time. My family, really doesnt understand nor will they ever. How long have you had crohns? Susie

 Reply posted for love my dogs.

Thanks Susie its just been so hard lately new syptoms and just the pain really sucks and its atrting to win I dont want it to but you get so tired of fighting it all the time I am jsut completely exhausted all the time I stayed home from work yesterday and I slept all day.

 Reply posted for msalanui.

hi, I know what you feel like. hang in there! There will be brighter ,better days. I'm thinking about you today. I have had crohns for 20 yrs now I was 26 when I was told that I have crohns. I didnt want to believe it. But now my crohns has gotten worse. I have alot of low days. But you always have to try to be positive. Its really hard some days, keep your chin up go outside if you can, let me know if you want to chat more. on your side!!:) susie