Hi all so had my Gi appointment today and all i can say is what a waste of time. She is basically saying i have to wait for my test and then if it comes back all normal then they are back to square one and it will be back to the dyfunctional bowel route. I am seething not only have my bloods been coming back abnormal i now am currently waiting for a ultrasound to see if i have an abscess on my bowel and i am not going to the toilet again. Everytime i come off the steriods i am getting my symptoms back. She also said that there was not much more they could offer me if it come back normal and that my other hospital would be able to help me more, so if it does come back and say i have crohns they wanna no and if it doesnt they dont. Im so sick and tired of being on there pedestal. They have treated me for crohns 2 times now and are still not satisfied with the evidence i dont no how much they want but this is making me more ill and i feel so much pressure. I feel so ill right now and so stressed. Sick and tired of doctors
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Arrrrgggh really... shoot me now!!!!
- Thread starter porter89xxx
- Start date
I'm getting all my medical records from my hospital and giving it to another. You should find another hospital.
That seems like all you can do, that and wait for the tests.
I feel better when I feel I have control. I can tell the doctors whats wrong but its like they're not listening. Always suggesting steriod use. With these less powerful drugs (Mesalamine), I was able to feel a lot better. It stopped the bleeding, and they wanted me on steriods to do that! ha!
Feel better, do plenty of research when you feel upset.
That seems like all you can do, that and wait for the tests.
I feel better when I feel I have control. I can tell the doctors whats wrong but its like they're not listening. Always suggesting steriod use. With these less powerful drugs (Mesalamine), I was able to feel a lot better. It stopped the bleeding, and they wanted me on steriods to do that! ha!
Feel better, do plenty of research when you feel upset.
Porter, what made them say you had it in the first place? Was it colonoscopy or scan or pill cam ? Is this lady a new gi, if so what does your first gi say?
Hi littlemissh
No this is my first gi that has said this to me im also with another hospital in london too. The reason why they said i had it in the first place was they saw in a small bowel follow through, ulcers and inflammation and started me on steriods then did a colonscopy which also showed inflammation still but the biopsys come back normal while i was on steriods this is bearing in mind. They were umming and ahhing for ages before i had this mri in jan and it showed thickening of the bowel and they again said i had crohns and treated me for it. Howeever they are now saying the mri scan could be normal thats why they are doing this pill cam. All of this inflammation has been in the terminal ileum where it most commonly affects everytime i wean off steriods i get symptoms back and i feel fantastic on steriods yet they are not listening i feel like im bangin my head against a brick wall also my bloods are coming back that something is right yet they say this crap.
No this is my first gi that has said this to me im also with another hospital in london too. The reason why they said i had it in the first place was they saw in a small bowel follow through, ulcers and inflammation and started me on steriods then did a colonscopy which also showed inflammation still but the biopsys come back normal while i was on steriods this is bearing in mind. They were umming and ahhing for ages before i had this mri in jan and it showed thickening of the bowel and they again said i had crohns and treated me for it. Howeever they are now saying the mri scan could be normal thats why they are doing this pill cam. All of this inflammation has been in the terminal ileum where it most commonly affects everytime i wean off steriods i get symptoms back and i feel fantastic on steriods yet they are not listening i feel like im bangin my head against a brick wall also my bloods are coming back that something is right yet they say this crap.
You ned to ask them what exactly they think is causing the inflamation and thickening and if it is not an inflammatory process why is it that the setroids are working ( steroids are very potent anti inflammatories and this is why they are used). Directly say to them..'surely it is possible that the biopsies could be normal because crohns is patchy and also because the steroids have resolved the inflammation' see what their answer to that is.
They need to be able to answer both satisfactorily. Is it both the hospitals saying the same thing? I find it quite astonishing you have had several abnormal tests, are better with steroids yet they say it is a NON inflammatory process.
When is your pillcam. If they are so intent on having biopsy proven crohn's then why say you must have a pillcam...they have already SEEN inflammation so what more do they hope to gain from the pill cam??
Write it all down and give it to them to read...otherwise you may be too intimidated or anxious to put it across at your consultation.
They need to be able to answer both satisfactorily. Is it both the hospitals saying the same thing? I find it quite astonishing you have had several abnormal tests, are better with steroids yet they say it is a NON inflammatory process.
When is your pillcam. If they are so intent on having biopsy proven crohn's then why say you must have a pillcam...they have already SEEN inflammation so what more do they hope to gain from the pill cam??
Write it all down and give it to them to read...otherwise you may be too intimidated or anxious to put it across at your consultation.
Im not sure why they are saying this, the other hospital has said it in the past but since i started bleeding they have taken me much seriously, and are doing the test as when they did a colonscopy they couldnt complete the second one as i was in to much pain and ende dup in hospital and this is where the mri scan comeback, i just dont understand how they can say sorry there is not enougih evidence to keep doing this to me, it is not fair at all that im having to come off of treatment so they can carry on there tests to feel like there is evidence i have demonstrated there is inflammation what else could they want. I honestly feel like not going to my hospital appointments as i just think im not getting anywhere
I would ask to see someone else in the area. Why don't you ask on here who is good in your region and ask for a referral to him/her with all results attached. The actual tests you have had can be sent electronically to the new consultant if he requests them , the reports attached by your gp.
I think you need to do this asap - ask your gp to arrange it once you have a name. Its very easy to arrange.
I think you need to do this asap - ask your gp to arrange it once you have a name. Its very easy to arrange.
Can i do that even if the other dr is still doing tests on me and can you actually change drs when you want if tests come back normal but some come back something is going on
You can change doctors at any time. Just ask your gp to arrange it. Your current consultant won't know until the new consultant asks for electronic transfer of X-rays/scans...so you can continue with pillcam and it will be available to new doc.
Make an appt with your gp, explain what has happened and where/who you want referring to. They will arrange. Its as easy as putting pen to paper and putting in the post.
If you get gp to put in your current symptoms the gi will hopefully see you soon. The other option is to see the new one privately the first time and transfer to nhs after...bit naughty but needs must sometimes.
Make an appt with your gp, explain what has happened and where/who you want referring to. They will arrange. Its as easy as putting pen to paper and putting in the post.
If you get gp to put in your current symptoms the gi will hopefully see you soon. The other option is to see the new one privately the first time and transfer to nhs after...bit naughty but needs must sometimes.