Entyvio last resort

Hi Helena - everything you describe sounds the same as my experience except the final roll of the dice for me was Infliximab. I'd been on a maximum dose of Azothioprine, various suppositories and enemas and 2 reducing courses of Prednisolone. Things just got worse and I had no choice but to have emergency surgery. 6 months on I'm back to full strength, free of drugs, motivated and able to do anything I did before. Okay  I have a bag and I'd rather not but I can manage with it.  Good luck with the Entyvio, my fingers are crossed for a positive outcome.

Hi Helena your experience is very close to mine. I was also diagnosed in May last year and am Pednisone dependant but as you said doctors won't allow you to stay on prednisone for too long as they are really bad for you long term. I have tried all other options and nothing worked until my last resort, Entyvio. I have just first the first three infusions and am starting to really feel the relief. I'm not in remission yet but I feel I'm getting closer and closer and can see the light. The doctors are having with how I'm reacting to the medication and I'm now on the 8 week maintenance program. 

Dont give up, there is still hope 💐

Good luck Helena, the drugs can vary in affect from patient to patient. The problem with steroids, like Prednisolone, is that they are harmful in large doses and the Docs try to reduce the doseage quickly as possible. Sorry don't have experience of the antibody Entyvio or Vedolizumab but my son was given Infliximab instead. You could contact Crohns and Colitis Uk and they should be able to help to explain. It would appear it is one of the last ditch drugs to stop you having to go to surgery. Hopefully you are seeing a good Specialist Consultant rather than at a General Hosp, if not I would recommend St Marks London or John Radcliffe Oxford. 

My son was only a few months after diagnosis before he became so severe he was hospitalised due to a severe bout and major dehydration. He was on Infliximab and unfortunately his colon perforated so had an ileostomy. the surgery removed his colon apart from the end and he had a stoma to attach to a bag on his abdomen. He waited a year and had a full reversal and had a J pouch which has worked perfectly. I am telling you this because it is such a shock to have to face surgery but it can be a positive thing in the end. The Docs say that about a third go straight to surgery, a third choose surgery after having a diificult time with meds and flares and a third are ok on meds and the UC is under control. My son is now back to normal apart from a scar or 2 on his belly. He goes to the toilet normally and is drug and pain free, no urgency or accidents and so pleased to be able to live his life to the full.

I hope the meds work for you but if they don't the next part of your journey could be ok too.

Good luck, Sheila.