Hello,
How are you feeling at the moment? What sort of symptoms are you getting? Have they given you the levels of your most recent test results? When was your last colonoscopy?
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Hi, thanks so much for your reply. :kiss:
Well, I had my MRI and stool test about 1,5 months ago.
It didn't show any active inflammation.
I did try the methotrexate at a lower dose, really low (10mg) along with an increased folic acid, which didn't help with the nauseous and full feeling. Besides only the 15mg dose did help give me a better stool.
In the past three years I did have a few flare ups. I can do a few months without medication, but even then I experience a loose stool every day, exhaustion, joint pains, burning sensation in the gut and can't eat properly.
With the Aza it was all well, except for the ongoing hair loss.
Well biologicals are really out of the question, since they don't prescribe it when you don't have active inflammation & they just find my type to be less severe to prescribe it. I live in Europe, and costs also play a huge role in doctors prescribing it and getting allowed by the insurance.
Sometimes MRIs will miss active inflammation, they have totally missed a flare twice in my case. Stool tests are usually more sensitive, but can miss low level inflammation, so aren't 100%.
From the symptoms you are describing, I would be really reluctant to say its a good idea to come totally off all medications, as its sounds as though there is something going on in the background.
Have they ever told you the actual results of the tests in numbers etc or do they tend to just tell you that they are "ok" as I've had one doctor tell me I was fine and then had another doctor tell me I'm in a full flare. Different doctors will have different thresholds that they worry about and they don't always adapt them to the patient. My consultant knows my inflammation markers never show in my blood, so even a .1 raise is a lot for me, and time for action, whereas doctors who don't know me would say its nothing.
I agree with other posters that a colonoscopy needs to be done or at least considered.
I live in the UK, where things are very cost dependent, but am lucky that I have a very determined team on my side. They refused to accept no for an answer and ordered me a scan called a white cell scan.
This scan is very sensitive, more than an MRI, and is done by extracting white blood cells from your blood, tagging them with a mildly radioactive isotope and then reinjecting them. They then do a scan and see where the white blood cells have gone, if there is one area with a high concentration of them then that area has inflammation. It's a very old school scan, and isn't used as much any more, but my IBD team knew I was sick, and were determined to prove it so I could get the best meds. I'm not sure how easy it would be to get a scan like this where you are, but there can't be any harm in asking them if its a possibility.
From what you've said, I'm not convinced you are stable enough to be without medications. I know there are side effects from the biologics, but the side effect from Crohns being allowed to go out of control are much worse. I'm not saying this to scare you, but to show that the doctors need to pay attention to you.
I would recommend at least enquiring about the alternative scan. You mentioned in another post that you have ulceration, and that means active disease, those ulcers can turn into scar tissue and cause blockages and ruptures. The worst they are able to do is say no. I know its a difficult system to feel with, I know in the UK you need to have a great doctor who is willing to push the system or you hit a glass ceiling when it comes to expensive treatments.You also need to have a strong will and be willing to stand up for yourself and not just do what they say. We can ask for second opinions when we aren't convinced that a doctor is doing the right thing for us. I changed doctors about 2-3 years ago and it is honestly the best thing I have ever decided to do. I strongly believe that if I had this doctor when I was first presenting symptoms I would have avoided the major surgery I needed to deal with strictures and scar tissue. Most countries have a similar system so you should at least be able to talk to a different doctor and see i they would recommend the same course of action.
