New to crohns needing help!

Hi, im new to this site so looking forward to advice, tips and any other help! After 2 years of investigations, mri, colonoscopy (2) and a sigmoidoscopy i have now been diagnosed! Apparently my crohns has caused my bowl to 'mat' itself onto my bladder causing a small hole, so consequently air and food debris pass into my bladder! also i have alot of inflammation in the areas around the ileum. I was originally put on Pentasa and Budesonide, after approx 6 months i took myself off them as i felt well. Unfortunately even though i feel perfectly fine ive now been told i need surgery! i am terrified as never had surgery in my life, im 44. I am wondering if its worth getting a second opinion but dont know how to go about it. So i quite desperate for any advice anyone can offer. Rachel

Hi Motherbailey, unfortunately I would agree, you will need surgery. Internal fistula, unlike perianal fistula, won't really heal with medications - you will need a small bowel resection (I assume it is a small bowel to bladder fistula).

Once you've had the surgery you should be on decent maintenance medication (wouldn't rely on pentasa), either a thiopurine (mercaptopurine or imuran) or biological therapy because the fistula indicates your Crohn's is more severe and should be treated more aggressively.

Best wishes.

Hello and welcome to the forum.

Had you made your doc aware when you stopped the meds? Unfortunately it can often happen that you feel well even when things are bubbling away inside. What type of surgery are you been told you now need? Have you been put back on any meds at all?

AB
xx

Hi Rachel and welcome to the community.

I'm sorry you're having a tough time of it

I also agree that surgery is going to be in your future. I know it's scary but I'm sure you're going to do great. If you want another opinion, go for it though I'm guessing they'll say surgery as well. Where I'd get another opinion is in the treatment regimen AFTER surgery. If your current GI wants to continue with Pentasa and Budesonide, I'd get another opinion as I agree with Aussie.

I know this is all so tough but we're here for you.

*hugs*

Hi, thanks for your advice and support, i have seen the surgeon but due to being in shock at what he had to say i came away not having taken anything in so i am due to have another appt with him and i'll be taking my mum with me to make sure i ask all the things i need to know etc, i guess it was wishful thinking that i could be cured with meds! The power of being in denial!! The consultant did say that being off the streroids was good as it would mean my body having a better chance of healing better after surgery. I havent been offered any meds at the moment, Azathioprine or Methotrexate has been mentioned for maintenance post op. I originally refused the Azathioprine in the very beginning of all this due to the scary side effects, looking back now maybe that wasnt such a wise choice as maybe i might not be in the situation im in now, never mind, hindsights a wonderful thing as they say! Has anyone had this surgery? If so what im concerned about is the time of healing as i work fulltime and only have a certain number of full paid sick weeks allowance! On a positive, its great comfort to know that im not on my own and ive been surprised at the amount of people who are in the same boat. Great to be able to be part of this site! Thanks for the advice

Under "Treatment" on the main page you'll find a "Surgery" subforum. Check in there as others have definitely had the same surgery.

I'm glad they're discussing stronger meds for you post surgery