Hi new to the forum!

[sam1]

Hi, my name is Sam, I'm 44 had ulcerative colitis for 24 years, haven't had a flare up for years, thanks to Asacol! It runs im my family; I had a aunt with ulcerative colitis, my sister has ulcerative coltis and unfortunetly she's allergic to all the medication so she has to take prednisolone and colifoam when it flares up, which is quite often as she can't take any maintance pills.

My son, 21, has been diagnosed with crohns 2 years ago. He's got it in the small bowel. He's tried azathiroprine and 6mp but had to stop taking them due to his liver results going crazy. He's also had budisinide which he couldn't get on with, now waiting for consultant appointment end of October to see bout starting anti-TNFs. He's also waiting on a surgeons appointment about having surgery though he would rather try the anti-TNFs first, but this is all taking a long time. Its like he's had to put his life on hold, he was suppose to start uni this year but he had to deffer this year to try and get the Crohn's in remmission. I so hope he will get on okay wth the anti-TNFs but I'm worried that he won't as he didnt get on okay with 6mp and azathioprine! Has anyone got on okay with the anti-TNFs that didn't get on okay with 6mp and azathioprine? Thanks for reading xx

 

[Astra]

Hiya Sam
and welcome

We have a few peeps with IBD who go to college and Uni on here, we also have a Remicade Club (we call it Infliximab in the UK) which is infused every 8 weeks in hospital
There is also Humira, which is self admin with a syringe every 2 weeks
We also have a Humira Club on here!
Lots of reading for you both, to weigh up all your options, to which TNF (aka biologic) to go for if he's successful.
Bit of a postcode lottery going on in the UK regarding the biologics, depending on your PCT (Primary Care Trust)
Also, your son will have to meet the NICE guidelines to fit the criteria.

Glad you found us, lots of Crohnie friends here for you, and ask your son to join us too!
Lotsa luv
Joan xxx

 

[sam1]

Hi Joan, Thanks for your message, Lots to think about dont know if he will meet the NICE guidelines, weve got appointment end oct so will ask the consultant then x

 

[Jessi]

Hi and welcome! I have UC, too. I wondered about the genetic thing. I am the only one I know of in my family and family history with IBD. My question was if a relative could end up with a different IBD than I have. I figured any of the colitis IBDs could be in one family, but I did not know that one person could have UC, and a relative have CD. So, you've just answered that question for me.

My 11 year old daughter has many signs and symptoms of bowel problems, but nothing has been diagnosed. It's not a huge worry for me, but that thought is always in the back of my mind.

Again, welcome to the forum.

 

[xJillx]

Hi Sam! I am happy to hear you haven't had a flare in years, but I am sorry about your son's struggles with his Crohn's. What biologic is he going to try - Humira or Remicade? I sure hope it will do the trick, so he no longer has to put his life on hold.

Keep us posted!

 

[sam1]

Hi Jill, I dont know what biologic Scott will be trying got appointment in couple weeks just hope they will start him on them as soon as poss, he seems to be having a lot of pain lately,

Sam

 

[David]

Hi Sam and welcome

One thing that popped into my mind as you were writing about your son is our enteral nutrition section. If EN is stuck with, it actually has about the same remission rates as Prednisone. Just something you may want to check out

I wish you and your son all the best!

 

[sam1]

Hi David, will diffently look into enteral nutrition, ive been reading up on it, will get my son to read all about it, thanks for the suggestion