Just back from my GI Specialist

[SarahDub]

Well that was a total waste of time. I've come home feeling so lost, alone and ANGRY:yfrown::yfrown::yfrown:

After him telling me at my last appointment that it was Crohns they are now back tracking and saying they don't believe it is. They say my symptoms are confusing them, they mentioned a possibility of it being a parasite or IBS or mild Crohns. Which is why it's so confusing? I'm angry because they won't make up their minds, they said the MRI was normal but they then showed me ulcers and bleeding in my small bowel from the MRI.

they want me to taper off all meds, I am worried if I do this I'll get worse and I don't like it when it's bad. I don't want them to test me, I'm scared and angry:mad2::mad2:

I always knew it was too good to be true getting a diagnosis so early on.

 

[littlemissh]

This seems to be a popular thing to do for some obscure reason. Surely they would have seen a parasite, ulcers are not caused by IBS. What is their plan if your symptoms get worse with med reduction? When are they reviewing you.
I am sorry you are in limbo. Waiting without a diagnosis is so hard.
Best wishes.

 

[Terriernut]

Sarah, wow, that IS frustrating! They actually said stop all meds? I think they must think that the meds are masking symtoms. And they need to see it without meds in order to make the correct diagnosis.

This is a bit absurd for you the patient. So, are they going to keep seeing you very frequently while they do this? Are they going to be checking your bloods on a very regular basis to see how you are doing?

Lastly, have you considered getting a second opinion?

 

[SarahDub]

See that's the thing about the parasite, they are only saying that because I travel to Thailand once a year to visit my cousins, but I've spent 5 years travelling the world and never once got that sick, I've always had these symptoms only they have gotten worse in the last year. I doubt it is the parasite but if they thought that's what it was they could do a simple blood test, which they didn't do.

They want to see me in 3 months, the plan is to taper off the Entocort for 4 weeks and then two weeks later stop taking the pentasa. They also want me to start a lactose free diet.

My B12 was at 346 which I feel is low but they seem to think its normal.

 

[Terriernut]

Nuh huh...dont let them get away with this 3 month thing. And MAKE them test for parasites. Tell your GP what they are up to. The GP can hopefully get you to another GI as well.

Fight. You need a diagnosis and treatment. There are folks on here who have fought a long time. Hopefully you will be able to find a GI who will really get the 'bottom' of it. (pardon the pun)

 

[SarahDub]

Yeah I need to get my head around this, the thing is I know if I taper off the meds I'll get worse. If I get worse I'm walking straight into the A&E and there will be no more quiet shy me and I'll drag that specialist from his cozy office.

 

[Catherine]

Sarah, I do know one boy (he is the older brother of a child that my Sarah swim with) he had only one 1 cm patch of crohn's. His dx was from colonscropy, this child only treatment has been a 3 months course of entocort but his doctors did make sure that this had works by doing a CT scan and repeat colonscropy to much sure it had clear up completely. He if not on any maintence meds.

All scopies were still clear 18 months on and he has no symptoms, and his GI has put him on another three month course of entocort to hopefully clear anything they can't see.

This is just question. Why can't they make sure the ulcers clear up before taking you of meds? What is their treatment for the ulcers?

 

[SarahDub]

I have a theory about this (my mother thinks I'm mad) I think they are taking me off the meds to see what happens. If I get worse it's crohn's if I get better it's nothing and all in my head.

 

[shazz]

Oh Sarah hun. I am sso so so sorry.
Don't put up with it like misty says and no way should you wait for 3 months.
My gastro doc stopped all my meds to 'see how you go' and it was horrendous. Not saying that you will be the same.
Keep phoning them until they give you some answers.
Xxxxxxxxxxxxx