Crohn's pain please help

[Leavesofautumn]

Pain is getting worse. It was on and off before but getting more pronounced now. I had a hospital appointment yesterday and they told me my blood and stool test showed nothing and no inflammation. I don't understand how this can be, as I know what my body is telling me. It alternates between a burning sensation in my intestines, and more normal pain across my lower front.

They did give me another prescription for some tablets that I started this morning, but they don't work straight away and I don't know if they'll work or not. I'm running out of options as I've tried so many medications that I've been allergic to.

My poo is almost normal, but interspersed with heavy wind and bloating so I feel like my tummy is inflated so it hurts.

I don't know what to do. I'm scared. I just want a normal life.

Why am I in pain? Does it mean there's more awful stuff to come? Does it ever go away on its own? I've had a few little flare over the years but this one feels different somehow, even though I don't have diarrhoea. I don't know what to do.

You have my deepest sympathy. I tried various tablets until I was put on Azathioprine. They had to tweak the dosage but they were amazing. I had various times on steroids when I was really poorly. The only thing that touched the pain was Coproxamol which they no longer prescribe.

I've tried Azathioprine and it made me feel awful.

What I really need is Colifoam but they've been having manufacturing problems for over a year so now nobody can get it. It's the only enema thing that I'm not allergic to and doesn't cause burning. I'm so upset that the one thing I really need isn't available.

If I'm in pain, does this necessarily mean the situation is going to get worse? I somehow don't have diarrhoea which makes no sense, just a lot of pain from heavy bloating.

I've been fine for a year now. Why is it coming back now? I'm scared.

You need a colonoscopy to be sure.

Dp has Crohns, the pain can be terrible.

The things that help him are: really hot hot water bottle, and keeping warm under a pile if duvets, paracetamol, neat vodka.

Can you try Predfoam instead of the Colifoam? Or does it burn/cause allergy? I can't tolerate azathioprine either so I have mercaptopurine instead. Hot water bottle and lots of tea is the only other thing to do! Have you got any naproxen to help the pain? Get onto your IBD nurse and nag, because you shouldn't have to put up with the pain and be fobbed off.

I won't take anything with prednisolone in it. Such awful stuff, causes mental heath problems.

Part of the stress is that the IBD nurses are so difficult to get hold of. You have to phone this hotline which is always on answerphone, begging them to call you. I've left two messages this week and they just ignore you. The same thing happens every time.

My GP can't do anything and just sends me to A&E which is always a waste of time as A&E doctors know nothing about Crohn's medication. I was there for nine hours last week, all they gave me was a phone number to ring which is constantly engaged. So of course the next day I had to make yet more begging phone calls.

I know the NHS are strapped for cash but the nurses do sod all and their attitude is so uncaring. They actually make people more ill with all the stress they cause.

My hospital is really good at dealing with Crohn's. I see my consultant either 6 monthly or 12 monthly depending on how I am doing. I have the mobile number of my named IBD nurse but I have never contacted her.

If you've never contacted her then I don't see how your can say if it's any good or not!

I'm supposed to have an appointment o've or twice a year but they always conveniently forget to send me one so I have to phone up and ask. It's supposed to be a specialist service but it's so hard to get anyone to call you. It causes so much stress.

So sorry this is happening op, but I think you're being a bit unfair. Most nurses do want to help but are in sometimes impossible situations.
Prednisolone should be ok topically, ie in an enema. Should have limited systemic effect.
Keep trying with the ibd nurse.
Could you have other problems alongside the crohns eg constipation or IBS?

I know why you're asking but this is definitely not IBS. I know what that feels like and the pain is different.

A friend of mine swears by this

www.hollandandbarrett.com/shop/vitamins-supplements/homeopathic-flower-remedies/cbd/

I strongly suspect your issues with the accessibility if the service are the fault of the commissioners not the nurses delivering the service.