Crohn's Disease

[lawyered07]

Is there anyone on here with Crohns? I was diagnosed a while ago now (13 years i think) but apart from a year or so after being diagnosed haven't needed significant hospital treatment. However over the last 2 or 3 years things have worsened after the azathioprine stopped working. Since then I have tried all biological drugs available on the NHS and had courses of prednisolone now and again to calm things - they have been the only thing that consistently helps but i notice they do less and less and side effects are more obvious with each course.

So now is crunch time and since the stelara isn't working it leaves surgery as the only medical option. So i am trying to control by diet which is a struggle for me as food has always been a big part of my life. I have cut out proper meals... generally over the last 2 weeks I am living off actimel, complan, plain biscuits for some texture (hobnobs mostly) and an evening meal of soup or a half size dinner (usually reasonably healthy).

It hasn't so far had as much of an impact as i thought it would. I know that everyone's triggers etc are different, but I am always interested to read other people experiences - whether there may be better liquid diet alternatives to complan that is easily accessible, maybe liquid isnt the answer? My bowel definitely needs a rest!

Open to any suggestions as I am willing to give anything a try now.

[lawyered07]

Thanks all for the replies. I'm certainly not in a terrible state, but if I can do anything to avoid surgery I'll do it. Not just because its surgery, but because it may just come back any way.

Drugs-wise (ignoring the bad phase of diagnosis 13 odd years ago) I spent a few years on asacol, then about 6 years on azathioprine and then mercaptopurine for a year or so both with very occasional steroids. Over the last 3 years it's been humira for 12 months, infliximab for 6 months, vedolizumab for a year and ustekinumab which I started in july and has had no effect so far. Also regular 8 week steroid use for 2 years on and off. I think that's everything.

I've never had a good diet. But always thought it's worth a bit of pain/bout of the sts...that is definitely no longer the case!

[lawyered07]

thanks. fruit has always been my only properly healthy eating (with only a little veg), but has always caused me issues which is frustrating. plant based might be my next trial but cutting out meat entirely will be really difficult and probably a true test of how much i want to avoid surgery.

[lawyered07]

forgot to say i have been referred to Addenbrookes where i believe (having looked at what i can online) there are quite a few trials running. i am not expecting anything to come from that for the next couple of months based on what my gastro said though.

i am pretty confident it is current inflammation rather than scarring - never thought of it that way. previous colonoscopys have been reasonably clear of scarring but I've never been this bad so who knows. I've got an MRI on Friday which may show more, and a colonoscopy to be booked.

[lawyered07]

How do you find them? I do like my gastro and ibd nurses but I feel like I always know what they are going to say. And maybe now the normal regimented steps haven't worked they aren't sure where to go (maybe there just isn't anything). Just feels like there must be other less traditional methods but what do I know

[lawyered07]

That's the thing...its such a struggle finding triggers. At the moment everything is a trigger.

I've got my referral to addenbrookes in January so hopefully something will come of that and I can keep experimenting with diet until then