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Still not sure

still not sure

hi,i have written previously on her,but havent for a while..its been 9 months of this mystery illness now..i still have pain,diarhea(some blood),~night sweats,gurgle noises, and for 4 months ive had 3 cyst's in my mouth..
after,colonoscopy,in which they found chronic inflamation,but bipsies came back with non specific abnormalities..endoscopy,in which they found red inflamed duedeum..a clear ct follow thru...i still have no answers??
ive had very swollen lymph nodes on my neck for 6 months and the hospital did a series of tests for cancer.ie carconiod,lymphoma and another i cant pronounce..all clear..
but last week me and my children caught a terrible stomach bug..to which at the end i was poo~ing blood?? im feeling ok now,bug wise..
my doctor has thankfully requested i change hospitals and consultants as she feels they are dragging their feet a little...
but i just wondered..if any of you had anything like what i have??
i cant help but think..oh i give up..no more tests..i will just carry on..or should i see what the new hospital ?? im so tired all the time..
sorry to go on


Staff member
Your symptoms are all what I had when I'm having a flare except for the cysts (I have Crohn's). Everyone is different though. If the doctors are dragging their feet then I should hope you would want to go somewhere else where they will take your symptoms more seriously. Bleeding isn't normal and I do hope that someone will find where its coming from and then deal with why its happening so they can fix it. Have you had a barium swallow or enema? They did both of those tests on me which helped with my diagnosis (along with the tests you've already done). I'd say for sure a second opinion is in order. You can't let this go on forever.

There are others on the forum just like you who all have IBD symptoms but haven't gotten a diagnosis yet. Its sad and I feel for all of you that are in that boat. :(
hi crabby!
yes i had the barium follow through..it was firing out of me even before the x rays..but they said they were all ok??..
i have another thing which i dont know is connected but my bones in my hand and lower back are so painful..i wake in the night and its hard to describe the pain..but often i cant move my fingers..feels like they are grinding against each other??..
do you ever have hurting bones??


Hiya Zoe

Go to the new hospital, start from scratch. Have a load of new tests done. And mention your joint pains too, many of us suffer with them.
No need to be suffering so much, there is help out there, just hope your new consultant listens and addresses all your issues.
Good Luck, and hope you have a good pain free Christmas. And fingers crossed 2011 brings you answers and help.
Joan xxxx
Thankyou Astra!!..i am going to go to this new hospital...i have an appointment for jan 24th..so we shall see what they say.??
my doctor said exactly the same as you,so im going to just grit my teeth and hope they find out what is going on inside me!..
thankyou so much both crabby and astra...and i wish you both a painfree christmas..
love and light


Staff member
Thank you for the well wishes and I wish you well too. Let's hope you get the answers you need from the new hospital. I wish you luck and Merry Christmas! :D
hey there :0)

sorry you still don't have any answers!! You should definitely go to the new hospital and see if another doctor can give you more insight as to what is going on.

As I'm sure you have read, many of us had long, drawn-out diagnoses. It sucks, but hopefully you will get the answer you need and the help you deserve!!

Have a Merry Christmas, and keep that head up!


Super Moderator
Zoe, I feel for you, I'm undiagnosed as well and it's been 14 months and counting. I wish you luck with the new hospital, I hope they are able to give you some answers. Good luck and happy holidays to you! :)
thankyou everybody!!..its so reassuring having you guys encouragement!!..sending you love and light!!..happy christmas..and a magical new year xoxo