I am undiagnosed..have had colonography, colonoscopy, biopsy all negative, waiting for capsule endoscopy (see specialist in October). The last year and a half I have been really ill, since last summer I have been collapsing regularly and as well as bowel symptoms I have tremendous pain in my body, inflammation of my eyes, skin (genital area at times), severe nausea and migraines. For the last 6 months I am so sick i can't go to work and have been forced to take sick retirement from my career..Last January I could still run and swim, now I can't even walk to my local shops some days. I am starting to feel really suicidal at times...because my day to day life is so unbearable...and my doctors wont do anything because i dont have a diagnosis. I was given steroids last week because my breathing became affected through my facial uticaria. Now the steroids have finished and my symptoms have returned..reading the forum helps me...but at the moment I just don't see a way out of this...Jan
Feeling pretty desperate
- Thread starter Campbell
- Start date
Help Support Crohn's Disease Forum:
- Joined
- Aug 10, 2012
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- 138
As I am only new to all of this, all I can offer is hugs from across the pond xoxoxoxo
Dear Campbell..I know that feeling of desperation! You are not alone. Crohns wasn't even on my radar when I was diagnosed at 39 even though I had had a ruptured appendix at 20 with many surgeries following in my 20s. Thank goodness my 30s were healthy years. Listen..there is something obviously not right in your body with all the inflammation. Is there any way you can seek a second opinion? Could you go to a and e to be treated? No one need suffer like you are at the moment!
I also understand feeling hopeless and like things won't change. I promise..they always do.i am so sorry you are suffering like you are but am so glad you found this forum. I've only been here a little bit and it is helping me tremendously!
Have you looked under undiagnosed club?there are so many who are in the same boat as yourself.its a confusing illness and not being diagnosed and treated appropriately just adds to the frustration!
All of us want to be taken seriously!
Hang in there and don't give up!seek professional help if you really find you are feeling suicidal..you don't have to hurt in that way either and you deserve a life worth living! Cindy
I also understand feeling hopeless and like things won't change. I promise..they always do.i am so sorry you are suffering like you are but am so glad you found this forum. I've only been here a little bit and it is helping me tremendously!
Have you looked under undiagnosed club?there are so many who are in the same boat as yourself.its a confusing illness and not being diagnosed and treated appropriately just adds to the frustration!
All of us want to be taken seriously!
Hang in there and don't give up!seek professional help if you really find you are feeling suicidal..you don't have to hurt in that way either and you deserve a life worth living! Cindy
- Joined
- Dec 31, 2010
- Messages
- 3,118
Hi Jan
So glad you have found the forum, but so sorry it is because you are so ill :-( A browse around will show you that unfortunately the road to a diagnosis is often a long and rocky one. Hang on in there.
Did you find that your bowel symptoms improved when you were on the steroids? That's often an indicator that you do in fact have IBD and is something I would stress to your doctors of you can.
So glad you have found the forum, but so sorry it is because you are so ill :-( A browse around will show you that unfortunately the road to a diagnosis is often a long and rocky one. Hang on in there.
Did you find that your bowel symptoms improved when you were on the steroids? That's often an indicator that you do in fact have IBD and is something I would stress to your doctors of you can.
Thankyou for your replies...they ahve been really important! Its made me realise I have to take some action..and that this awful disease is making me really down...My GI I cant see until October but he is sure I have Crohns...I think I will try and make my GP give me some antibiotics...The prednisolone did make everything better including my bowels...so I will stress that...Thankyou again for your kind replies...Jan
- Joined
- Aug 30, 2012
- Messages
- 8
Dear Campbell,
Reading your post made me want to give you a big comforting hug!
I'd say most people on this forum can relate to most of your experience that you've described, IBD/IBS is a sneaky and awful condition that really wipes out your body. If you've noticed many improvements with Prednisone, then definitely keep on taking them until you see your doctor in October.
I'm no doctor but I have heard that long-term use of prednisone can be bad, and can cause cataracts, and osteoporosis. That's the problem with many drugs these days that help us with IBD, they help IBD symptoms, but may create new problems in our bodies.
In the meantime I definitely think you're in the right place for support. Do you have any relatives/close friends that could come over to cure the loneliness for a while? Best wishes to you, keep us updated on how you are doing
:hug:
Reading your post made me want to give you a big comforting hug!
I'd say most people on this forum can relate to most of your experience that you've described, IBD/IBS is a sneaky and awful condition that really wipes out your body. If you've noticed many improvements with Prednisone, then definitely keep on taking them until you see your doctor in October.
I'm no doctor but I have heard that long-term use of prednisone can be bad, and can cause cataracts, and osteoporosis. That's the problem with many drugs these days that help us with IBD, they help IBD symptoms, but may create new problems in our bodies.
In the meantime I definitely think you're in the right place for support. Do you have any relatives/close friends that could come over to cure the loneliness for a while? Best wishes to you, keep us updated on how you are doing
:hug:
