Ulcerative Colitis... worried about steroids

[StillMedusa]

DS2 (adult..he's 25) has UC and has been on Pentasa, maximum dose for years and it's generally well controlled. With the odd flare up he has been prescribed Cortiment which is a targeted steroid and usually works brilliantly with no side effects.

However.. current flare, it's just not working and IBD team want him on Prednisone.

However, he is not your regular 25 year old. He is autistic, with severe OCD and anxiety. He can't even reliably report flare ups.. I have to notice a toilet full of blood and him going multiple times a day. He's verbal but almost totally lacks awareness of pain or illness. He is highly medicated for his OCD, but at the moment it's quite bad; his hands are literally raw from over washing, he's incredibly anxious, and his insomnia is bad.

Side effects of Pred include mood swings and insomnia... I CANNOT risk him being put on it. His mental health is precarious and he has done so well to stay mentally just about ok for a while.

Does anyone know what the alternatives are? Is there one? He's not capable of making an informed choice himself and I need to be prepped to talk to doctors who are IBD specialists but don't live with someone whose other needs are so so important :/

I had a drug called Clipper once. Have a look into that.

I've never had any side effects from Pred, its always worked really well.

Could you ask about biologics?

DS has a condition which when relapsing he needs to take steroids for and it really accentuates his ASD/ADHD - it’s worse then the symptoms of his condition. DS was offered a biological infusion and it works like magic and means he remains in remission for long periods so doesn’t need pred.

I might be teaching you to suck eggs here but have you tried the Low FODMAP stuff on top of medication?

works really well for my family member with UC when they have a flare up, literally have to strip anything high FODMAP out of their diet for a
few weeks or so to get on top of a flare up and they usually manage to avoid meds by doing so.

I appreciate that adding a very restrictive diet on top of ASD and OCD is less than ideal...

I have UC - massively cut down carbs and lactose during flare ups and that helps hugely. Rice and twice cooked carbs seem ok though (pasta heated next day/toast).
Anything hard to digest like seeds and nuts rips me to shreds though.
I hope he's ok. The raw hands might also be itching - I get bad hand dermatitis with flare ups. The sore hands also go away when I stop carbs/milk/soft cheese.
I'm on pentasa and managed to stay away from the steroids so far.
Good luck

I had steroid foam enemas which were very successful. I don’t know if they are still available. Also pre-biotics to improve gut health.

I agree with @pastabest - low FODMAP. It's actually quite simple and you only have to do it for a few weeks and the effect can be really big.

Unfortunately his autism simply means that the FODMAP diet just isn't going to happen. i'm well aware of how it can help, having IBS and diverticulosis myself, but most of the ok foods are in his big NOPE group . We did manage to get him off the healthy cereals (a shame but he loved museli and it was making him much worse) but his diet is typically bland and fairly high in carbs and the ONLY fruit he eats is apples. If we restrict wheat and carbs and apples he literally will not eat and he's not heavy to begin with.

I was on Pred for almost 2 years when everything else stopped working. Never had any side effects except putting on weight.

Usually they give you a tapering dose for 5/6 weeks, so not a long term thing.

Steroid foam enemas also very good if it's left sided?

Biologics very good too, I became immune to them, but when they worked they were fab. Some are an infusion at the hospital every few weeks, some are injections you do at home in a thing like an epi pen. They are very very expensive though, so you may have to push hard to try them before exhausting steroids as an option. I only moved to them after my UC became steroid resistant.

I now have a stoma, on the waiting list for a reversal and J-pouch.

I've always been advised to go on a low residue diet when in a flare. White everything, rice, bread etc. There's loads of info if you Google it. You probably know it all already. Will he accept peeled apples? No skin on fruit allowed on low residue.

Has he tried a combination of Octasa and Pentasa? It works really well for me, but not sure if he’s be comfortable with suppositories?

We've had steroid enemas before ..not fun as I have to do them for him and he finds it difficult to keep them in, but I will definitely see if we can try those again first.
I'll get peeling his apples again.. I had forgotten about that, so thank you. His diet is typically autistic.. beige bland food (despite my best efforts)

With the enemas - the first time I had them I had one that came with a syringe type applicator (reuseable) that you fill from the aerosol and then use. They were better and less uncomfortable. They're called colifoam. It might be worth asking the Dr to specify that one.

I've since had ones that have a applicator that goes straight on the aerosol and they're bloody awful. Really uncomfortable and make you immediately feel like you need the loo.

Does he manage to not go so much overnight? I used to do them at bedtime to attempt to give them chance to work.

Would he tolerate a liquid diet (ensure or modulen) might be enough to get on top of it with the addition of biologics. Less evidence in UC than Crohn’s but might be worth a try. (2 DCs with Crohn’s)

My DD15 has UC - she had pred steroids only when she was first diagnosed as she was quite severe. When she had her second flare they didn't want to giver her steroids again so soon so she was given salofalk enemas. They stopped symptoms within a few days.

Is he on any azathioprine?

DD currently on 25mg of Azathioprine per day plus infliximab infusions every 8 weeks. She has been in remission now for an entire year with no flare ups. She was taking pentassa but she has been taken off that now that she is in remission.

It's such a horrible disease for a young person to deal with. My DD has OCD too - triggered by the illness.

I'd suggest raising your concerns with his treating team.

I'm aware that they sometimes involve psych in the balancing decisions for such patients and there is occasionally the option to move to biologics earlier.

Giving Pred earlier in the day reduces but doesn't abolish insomnia side effects.

Thank you for all your replies... I really do appreciate it, and everyone's experiences! DS2 was ony diagnosed 3 years ago ( mostly because no one took his symptoms seriously, plus he doesn't feel pain so it wasn't til he was really ill that anyone noticed). So far he's had Pentasa, Cortiment, Salofac enemas and one other type.. the foam were better tolerated than the liquid ones but neither were great for him although they did help.
I'll get hold of the IBD nurses tomorrow...fingers crossed we can sort it !

You can also get suppositories which he may hold in better.

There's a steroid called budesonide, it's more expensive than pred which is why it's not always suggested but It has less side effects.

On a high dose of pred I was full of too much energy and really irritable which may not suit your son.