Frustrating!

[sam1]

Hi, my son has had bowel problems for 3 years. He's had a colonoscopy and biopsies done, which came back 'normal'. He's also had an MRI, Ultrasound and Endoscopy which all came back 'normal'. He then had a pill cam (Capsule Endoscopy) which came back with ulcers in the terminal ileium. So he got diagnosed with Crohn's disease, as he also had inflammation showing in his blood and also the stool sample was very high. So the consultant started him on budesonide, which made him dangerously depressed. Next they tried Azathitrapine, which made his liver enzymes high, as did 6mp (Mercaptopurine). His consultant had a year off, so was given a different consultant, who didn't know what to treat him with, so had to have another colonoscopy (after the first one, which was painful for him and didn't get to the terminal illieum) and small bowel meal, which both came back 'normal'. The consultant has prescribed for us the same budesonide treatment a few times now, which has been, what I would consider, very irresponsible and unprofessional. We have explained, in detail, what happens when he takes the budesonide but they just don't listen! He is now due to try budesonide again, but he is worried because he felt so awful on it. He has an appointment in six weeks time, and hoping to try methotrexate. The consultant did mention Humira, which did sound somewhat promising, but they are refusing to acknowledge any mention of it now, which we believe may be due to the cost. We have had a whole year just wasted. Ever since the consultant changed, everything had just gone down hill and stood still. Don't know what to do next. Thanks for reading. :rosette1::sign0085:

 

[David]

Ugh, that's terrible Sam I'm so sorry you're having to deal with such BS.

If they do have him go on Humira, make sure they give him a test for TB first. Since your son's disease isn't confirmed by biopsy, I'd want to make sure that it wasn't intestinal TB. I'd also suggest researching enteral nutrition and low dose naltrexone. Both are listed under our Treatment section.

 

[braveheart]

I am sorry about your son's problems with CD.
Isn't it possible for you to consult another professional?
I've had crohn for more than 20 years and I've visited a lot of doctors until I found the right one.

 

[sam1]

Thanks for the replies, have had a chat with my son's IBD nurse today (who's just come back from maternity leave) and she's sorting out a treatment plan with my son's consultant (who's just come back from a year's sabatical), so fingers crossed might be getting somewhere! Will definately ask about enteral nutrition and low dose naltrexone

 

[David]

Good luck and let us know if you have any questions!