Hi everyone, so i went to see my gi toay and my pill cam results are normal, i was not suprised seen as i was on high doseage of steriods before the test and when i had it , she said the amount of symptoms i was having it would have most deffinatly come back with inflammation can not understand this as i thought steriods get rid of it and mask it. She could not offer reasons why i had inflammation and ulcers in my sbft and why my crp levels keep going up and also why im constantly running a fever she said that i would have to have abcess and infections to have a fever and on steriods. I really am fed up, i dont no where to turn as she said she is not convinced and neither is my other gi that it is crohns right now, she has put me on nortripyline as she said people with crohns are on this and it can help with the diareah and pain? She also said she was going to have a chat with my other gi to see if they would trial me on immuno supressants. I dont no what to do i am so angry they do this everytime im on steriods do tests which are going to show nothing, i feel like i dont get the chance. What do you all make of this is this right what they are doing?
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So frustrated
- Thread starter porter89xxx
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Astra
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I'm not surprised you're frustrated Amy, I would be too!
Poor you, you've been ill for so long now, is there no way you can get to go to another hospital?
nortriptyline is more commonly used to treat diarrhea prominent IBS and it can take several weeks for it to work. I'm on it's sister Amitriptyline but this is for my neck and head pain. I do think it helps with abdo cramps and spasms tho.
Try it, it might work.
Amy have you been into the Undiagnosed Club, there are lots of people in there just as frustrated with this, they might have a better idea than me.
Thinking of you
xxx
Poor you, you've been ill for so long now, is there no way you can get to go to another hospital?
nortriptyline is more commonly used to treat diarrhea prominent IBS and it can take several weeks for it to work. I'm on it's sister Amitriptyline but this is for my neck and head pain. I do think it helps with abdo cramps and spasms tho.
Try it, it might work.
Amy have you been into the Undiagnosed Club, there are lots of people in there just as frustrated with this, they might have a better idea than me.
Thinking of you
xxx
I feel for you Amy,
If they are prepared to trial immunosuppressants then they must still have IBD high on their agenda. If they do offer it it would be worth a go if it controls things. If not then you should insist on tests asap when your symps recur and whilst off steroids....it depends if you cn tolerate the symptoms whilst waiting. Perhaps you should discuss this option with gi if they do not think immunosuppressants are suitable?
If they are prepared to trial immunosuppressants then they must still have IBD high on their agenda. If they do offer it it would be worth a go if it controls things. If not then you should insist on tests asap when your symps recur and whilst off steroids....it depends if you cn tolerate the symptoms whilst waiting. Perhaps you should discuss this option with gi if they do not think immunosuppressants are suitable?
I just dont really understand them, seen as ive been on steriods up and down on them most the time on high dosage since febuary they can say oh no even with the symptoms your getting we should of been able to see inflammation, not even taking into consideration my crp keeps raising and having fevers still which she put down sayin with crohns you dont get fevers when your on predisolone! I am looking to pay for a private consultation to get a second opinion im sorry but i read up ibs again to make sure im not going mad and it said the red flag symptoms you do not get with ibs is unintentional weight loss (lost nearly 3 stone ) in a year and half, fevers, joint pain and blood. I have had all of these, im sick to death of being made to feel like there is nothing wrong with me when i have had tests to come back to suggest something which they rubbish. I now have to wait for them to see if i can have the trial. Does this sound right. or do i have a right to be absolutly mad
I think they are messing you around and if I were you I would ask for a second opinion - and insist they explain your symptoms and response to Pred and raised markers etc.