Anybody with crohn's fancy a chat? Just been diagnosed and could do with some company.

[IPlayMyGuitar]

JUst got my results today and the proposed treatment plan, all by letter so no chance to talk to anyone. Just wondered if anyone was around for hand-hold & to share their experience.

I've got it, the immunosuppressant have worked wonders, but unfortunately you have to be careful around sick people in case you catch anything, eg if my husband and I get a cold at the same time, mine is much worse than his.

My son and I both have Crohn's and I have had it for 50 years and seems to have got easier for me over the years. I used to get mouth ulcers all the time, terrible stomach pains and a pain in my back passage which would make me cry for half an hour at a time. I had a part colostomy and part ileostomy surgery and no stoma and no medication as it took them over a year to tell me what I had.
My son had the same surgery and has been back and forward to the hospital, had to leave his job a couple of times and now works from home so he can work round his pain so different for us.
He stopped eating meat but I only had problems with cows milk, lettuce and mushrooms. I barely think about it these days except when I get a bloated stomach but he suffers every couple of months

I would either get a bug really bad and it would be over within 24 hours or I would just be a big off color for about 3 weeks. DS never gets anything!

So after talking to the nurse, the final scores on the doors are:
A weaning dose of budesonide for 3 months.
Omipramole and calcium pills to be taken alongside.
Infliximab Infusions
Azathioprine pills

So with my current prescription of amitriptyline for pain and my hrt, that's a total of 7 drugs.

I'm going to need one of those very attractive pill boxes to organise that lot.

And I bet they all contain lactose .... I'm lactose intolerant.

Wish me luck!

So grateful for the NHS right now.

Similar to what happened with my niece and not that long ago, they put her on steriods for too long for UC, she had to have an emergency ileostomy (she gets on great with her stoma now, changed her life for the better), but the more serious problem is she is now on steriods for life, she has to carry syringes and vials of steriods for emergencies everywhere. She has had a couple of very close calls when her steriod levels dropped dangerously low and her immune system is shot.