Hi Atinkerbel and :welcome:
I am so sorry you had to find your way here :ghug: but on the good side it is a fab place for support, information and advice.
Crohn’s in the Terminal Ileum is the most common site and particularly so in adults.
Unfortunately both steroids and Exclusive Enteral Nutrition (EEN) are not long term treatments for Crohn’s.
For some people with mild Crohn’s this can be enough to put them into remission and keep with there but for most, like you, it is not enough and ongoing therapy is required.
Since you have a stricture it is important to differentiate between what is inflammation and what could potentially be scar tissue. The reason being, all the medication and good intentions in the world will not treat scar tissue, only surgery will. The fact that you responded to initial treatment is a good sign though that you may primarily be dealing with inflammation. Just bear the inflammation versus scar tissue in mind though due to your age and surgery, no offense intended!
In the step up approach the next line of treatment after what you have already tried is the 5ASA’s. The doctor has likely skipped these based on your symptoms and clinical indicators. The 5ASA’s are a very mild drug in the scheme of things and research points to them being pretty useless in the treatment of Crohn’s. That is not to say it doesn’t work for some but they are few and far between and the risk that is faced with any step up approach is that if the drugs continue to fail then damage to the bowel is continuing as the inflammation remains under treated.
Azathioprine (Imuran): Both of my children are on Imuran and have been so for 8 and 3.5 years respectively. Neither has had any issues with it but as stated by Daisy you must have regular blood tests whilst ever you on it. This is the model for testing that I prefer:
Ensure you have a TPMT blood test prior to commencing, it will establish the level of enzyme you have needed to metabolise the drug.
Be aware that it will take at least 3 months to become fully therapeutic so it is not a fast acting drug. Normally you would be on steroids or EEN and as you start to wean the drugs or complete the EEN, about 8 weeks, the Imuran is ready to start taking over.
I know only too well how scary these drugs seem but I have also seen what untreated Crohn’s can do and it is no less scary. I hope you soon have solid answers on what the path ahead is for you and sending loads of luck your way that you are soon in remission!
Dusty. xxx
