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Anyone else shattered all the time?!!

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Crohn's Disease
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Posted 4/29/2012 3:15 PM (GMT 0)
Hi all

New to the forum..have had Crohns since '87, aged 18, & have tried EVERYTHING! Have a wonderful specialist in Dublin & he is doing his best to keep me off the op table. He feels the Crohn's has spread so far, it would be a huge op & no guarantee it won't recur. At the moment am on PROGRAF, which has kept me out of hospital.It helps patients to accept transplants but Prof has found it can help Crohns as well.

Have just been confirmed with a slipped disk L4/L5 so have had to cut down on all exercise- love walking, swimming, pilates. May have to face surgery but just can't think about that at the moment.

It's been an extremely difficult year, both physically & emotionally, but am just wrecked all the time.

Would appreciate any tips on getting a bit of energy or just knowing I'm not the only one who feels like a bit of a waste of space!!

Thanks a mil
Posted 4/29/2012 7:03 PM (GMT 0)
Welcome Shelly,

I am so sorry that you are feeling so down in the dumps, we all get that way sometimes, some more than others.

I am also feeling bad for you that you have had to cut down on your exercise, I know how that feels.

You should not be afraid of getting surgery if you need it and most of us are told the exact same thing; you might need additional surgery. The time between surgeries is completely different for all of us, if you read the other posts you will get an idea of their experiences with surgery.

I myself have not heard anything about the drug you are taking, but now I am going to research it.  On this forum you will find everyone is on lots of different drugs and most everyone takes the one that suits them best.

I really hope you find some help from other people and that their input helps you in some way.

As for fatigue  we all suffer from it, but speaking for myself I take alot of iron and find it helpful, but the most important thing is to just love yourself, try to keep healthy and like most of us always say "you are not alone".

Try and keep your chin up and take care Shelly.

P.S. I am really glad to hear that you have a doctor that you like, it sounds like you feel comfortable with him and that is so important, especially when you have to talk about POOP!!

 

Post Edited (cleanfreak) : 4/29/2012 1:11:10 PM (GMT-6)

Posted 4/30/2012 2:11 PM (GMT 0)
I just want to say you're not alone. I've been severely ill now for 18 months. My whole life has turned upside down. I wouldn't wish this darn disease on anyone, yet it does help put life in perspective for me. I am taking time for myself, doing things I like to do when I feel well enough. I am surrounded by family and friends who love me and I am getting better at asking for help and admitting I can't do it all. People like to be able to help others, so don't be afraid to let others know what they can do for you.

My son was recently in the ER and the nurses there gave him a handmade fleece blanket that was donated by someone. My goal is to make several tied fleece blankets to give back to the hospital. Knowing that in little ways, I can make someone's day brighter with a small gift or even kind words makes me feel like I'm still a valuable member of society.

Hang in there. Many others on here have surgery and state that they wish they would have done it long ago. A good friend of mine got an ostomy as soon as her CD got bad - she's never once regretted it and lives a good, full life - eating whatever she wants, unlike me. :-)
Posted 4/30/2012 3:08 PM (GMT 0)
Hi Shelly, Im living in Limerick but had my op in Dublin, whats your prof name?
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