help!!!

[leannejoy696]

I just want some advice. ive had crohns 18 years I am 24 years old. I have had all treatments anybody can hv including liquid diets worm treatment n several operations. doctors said I hvto go on eexperimental drugs which hvnt bin tested on ppl yet . im so scared tht this is my only option bt I want kids n it means I will hv to put this on hold 4 at least 3yrs. im really struggling normally i just get on wit it. but I just feel defeated atm as drs said there is nt much else they can try

[leannejoy696]

yeh good idea n I will do so much research. I hv just been told I hv thombrist cnt spell it from hvin crohns. im basically keep gettin blood infections so hvin to start treatment for tht to. I live in da uk so I go to my local hospital, im so tempted to start to pay privately then through nhs x

[Megadodger]

Hi Leanne,

with these experimental drugs I would suggest that you look into each trial. The doctors may say it could work, but it may not.. These drugs always have a side effect and they can eventually cause more damage. BUT keep in mind that steroids and immunosuppressants were once at the point as well.

If you choose to do a trial, I would suggest the trials that have been around for a while. Talk to your doctor about this! Tell him/her that you are uneasy, but there are tons of medications that are out on the market, but you're not a test subject. You want something that has the potential to actually work and that has been shown to help similar conditions.

I had multi stemcell infusions as well as a new drug called tofacinitib. It has been released for arthritis, but not GI conditions yet. The second one helped my symptoms, but I didn't get any better. I was more willing to risk that trial though because it has been released in other countries for other conditions that are related to the immune system.

Good luck!

[Skeeter45]

Hi My name is Lori and was diagnosed with Crohn's in 1985 @ age 15.  I understand your frustrations completely as I have been treated in a "teaching hospital" IU Medical Center since 1992.  Long story short, my crohn's is very chronic and have been in several clinical trials on all the new meds that have not been passed by FDA...it is scary but we know that this disease can kill us so we agree to try anything, right? I must ask where you are being treated because I have a hard time w them telling you that there is not much else they can do. Where are you being treated? I truly have the best GI there is...in my opinion and want to hopefully give you their name if your location allows.  God bless you and don't give up the fight ok?