recently disgnosed

[caruzzo22]

Hi all,

I have been recently diagnosed with Crohns disease after a bowel test kit was positive/colonoscopy/ endoscopy/blood tests/ MRI. My Gastro has recommended the medication Mercaptopurine which is an immunosuppressant with a list of what I think are scary possible side effects. I have limited Crohns symptoms at this stage. Only some bouts of diarrhea, which along with the fact that my Dad died of bowel cancer, lead me to have a bowel test kit and following it up after it came back positive. Gastro says by starting to take this medication now I can hopefully protect myself in the future. Which I understand but I am still concerned about this medication.
Is anyone on Mercaptopurine and could you please tell me how you go with it?
Thanks

 

[Catherine]

Hi, I am bumping the thread for you. Sorry you haven't received a response.

I don't know the med but I do know under treated Crohn's can have very bad outcomes.

 

[my little penguin]

My kiddo was on 6-mp for 8 months.
From age 7 to 8
He is almost 18 now

It is no longer recommended because it significantly increases the risk of lymphoma.
Most Gi use methotrexate instead
Since it does not have the same risk

Undertreated crohns does have an increased risk of cancer due to cellular changes from inflammation
So it does need treated

Can you get a second opinion Gi from another hospital?

My kiddo never reached therapeutic levels
Every time we raised the dose his liver enzymes went up .
They added allopurinol to shunt it away from the liver but still was an issue so after 8 months of trying 6-mp was dropped and methotrexate was started by injection
That resulted in under treated inflammation and he developed vasculitus
Steroids added plus mtx
Never got off steroids without vasculitus
So switched to remicade

So even though he has mild crohns
He has major extra intestinal manifestations

He currently takes Stelara and methotrexate
And has since 2017

Good luck

 

[Delta_hippo]

I was on it for a while but didn’t get along with it so ended up on biologics. All the Crohn’s meds have scary side effects (as do most drugs) but lots of people take them with no problems. The one to avoid is azathioprine if you are a teenage boy as for some reason that group are particularly vulnerable. Aza is a similar drug to mercatupurine.

If you have Crohn’s it is important to keep it under control and stop intestines becoming damaged through inflammation as that can cause real problems.

When I was newly diagnosed you look at the different drugs, diets and quackery so called cures and think this one or that one sounds least scary. But in reality it is more trial and error finding an option that works for your body.
It is also a disease that is being researched in many countries so there are new approaches being trialled and reason to be hopeful that new treatments will emerge that don’t seem so scary. For me the scariest option is rampaging Crohn’s.

Have a look at basic stuff as well for risk reduction like vitamin d, anti inflammatory diet (less sugar, more veg, swap to gluten free alternatives), sleep, stress. And worth checking iron levels when you get bloods done as low iron is frequent with Crohn’s and can make you feel grotty.
Best wishes

 

[dianasgarden]

I was just diagnosed 3 months ago. My doctor does not recommend 6-MP because of the cancer risks. I am also mild so far, just bouts of diarrhea. I have been taking sulfasalazine and now in the middle of a 3 month tapering course of budesonide. I am definitely doing better. Best of luck to you.