Advice Needed

[rye]

Hi all i have been a member awhile but I'm not all that good at writing so i just like to read i've had crohn's now for 13 years now. And i have tried all the drugs that there is in the uk my doctor is now pushing for me to have ileostomy bag removal of my large bowel.Or they said they could try the new stem cell treatment but i don't know what scares me the worse in the two they say thats there a 1 in 20 chance of dying with the stem cell treatment but i have two young children 5 and 2 so I'm not sure if its worth the risk .Any help or knowledge would go along way these are the drugs i have been on

Sulfasalazine, Mesalamine, Azathioprine, Infliximab, Humira, Methotrexate. Currently on Tacrolimus and "prednisone " :stinks:

 

[nogutsnoglory]

I am not familiar with what's approved in the UK but there are other drugs that you could try before going for the operation or stem cell treatment. For example Cimzia which is like Humira and Remicade is used for Crohn's in the U.S. but for arthritis in the UK. Can your doctor prescribe this off-label for you? There are also other immunosuppressors but again I'm not sure what is available there.

I understand your fears and there are many variables to weigh. Can you go for another opinion to see if there might be more options?

 

[SarahBear]

Hi, rye. I'm sorry to hear what you're dealing with.

You might want to have a look around the stoma subforum, found here. There, you can learn more about what it's like having and living with an ileostomy. You can live a normal life. Maybe reading about and talking to some people who have them would help you.

I also don't know much about what is used in the UK, but I'd follow NGNG's advice and talk to your doctor about any alternative medications there may be.

:hug: I hope things go well for you!