Colitis how bad is it taking the steroids

[itscomplicatedlife]

My husband was diagnosed with colitis a year ago, he has had just 2 bad bouts/flares, he's in one now started over a wk ago, needing the toilet roughly 15-20 times a day, has lay down for 4 hours earlier, shi consular advised he double his Salofalk intake and advised against taking steroids but has issued his Gp authorisation to issue if he needs. He's had a miserable wknd tired, unsociable abs very depressed, it's been hard also for as well have a high energy 2.5 yo, it's getting me down, my dad can't undertand why he won't just ask for steroids as his mother had it for years and it worked quite quickly. He thinks it'd save him a lot of pain and tiredness if he just took them when in a bad hour esp considering this happens maybe 2-3 times in a year since this began. DH said I have no idea what I'm taking about and said it's not that simple to take them as they come with a lot of risks, I am probably clueless and apologise if I am but feel like is he blowing this up a bit or should just get on the steroids then return to usual medication after this? TIA!

He's understandably feeling very sorry for himself and I feel sorry for myself too as it's awful happening to him and affecting plans well hve to now cancel right before Xmas. Just feel like the steroids are the answer to slow this but he's trying to avoid them due to these risks but he last had a flare 3.5 months ago and prior to that it was almost a year ago

I am personally finding this myself so distressing esp with our young daughter as hubby looks so ill, it's just so hard to get my head around

Well there are risks with steroids but there is also misery and risks with untreated colitis so it’s important to weigh up those…! A few courses of steroids, even at a high dose, over a year or so won’t do any harm long term. My mum had Crohn’s disease and took 10mg prednisone long term as that’s the only thing that she found helped her - she couldn’t get on with any of the immunosuppressive medications. However, yes long term there are risks like osteoporosis (although you can take preventative medication for this) and the risk of secondary adrenal insufficiency- I have Addisons / adrenal insufficiency myself and have to take daily life long steroids, without them I’d go into adrenal crisis which is fatal..

What particularly is your dp worried about? It’s really important he gets the flare under control.

Hi - I've had UC for over 10 years now.

I went on steroids early with one consultant - and stayed on them for far too long. I stopped them and went into a flare and ended up in hospital.

I changed consultant who was horrified I'd been on steroids for over a year - and tried all sorts of other treatments - but gave up and referred me to a surgeon.
I changed my diet drastically- and got another new consultant who said...yes come off the steroids but really really really slowly. And if you have a flare they are available. It took over 4 months but he's still my consultant- and kept me stable for over 5 years

So ime - take the steroids...they worked within hours for me. Taper off them as soon as possible but do it slowly. And investigate all possible options for the future (not everything works for everyone)

And contact the Crohns and Colitis Foundation- lots of advice for him and you.

Thank you both! His consulatant has auth his gp to prescribe the steroids and he's finally called the drs about it this morning but has to wait up to 2 days for response. But he's saying I don't know what I'm talking about as said his consultant told him not to unless it was really bad as there are lots of risks! But in my view when you're going up to 20 times a day surely if it's just a short course to nip this in the bud to prevent it making the issue worse this is the best solution but apps I don't know what im taking about except he has asked for the tablets!

Just furstruating as we've gone through hell for last wk and to me it seems sensible to have just taken them and try as he's never tried them before and rhis isn't happening all the time either it just explodes when it does but the last bout of this was 3.5 mths ago

I think he's being a drama Queen but maybe I'm being too unsympathetic I don't know

Steroids can be a very effective and fast acting treatment for UC

They are only ‘dangerous’ if tolerance is built and the patient has to take ever increasing doses where side effects can be unpleasant or when a patient suddenly stops taking them rather than tapering off.

What dose is it suggested he starts on? I suggest he speak to his doctor for reassurance - the steroids may be just what he needs to feel better over Christmas

He is absolutely right to be cautious and isn't a drama queen, but it sounds like they will be really helpful at this stage.

The trouble I had was trying to come off them. It was weeks of slowly and very gradually reducing the dose, but whenever I got down to a certain level, I would start flaring again.

I was on the steroids for too long, including a week in hospital having them intravenously. Eventually I had to go on a low dose of chemo pills to suppress my immune system and get me off the steroids. After several years, I am now off these now too and managing the UC with salofalk only.

Thank you new repliers much appreciated!

I have no idea on the dose atm, but I think it's got to be worth a try and see how he goes.

I'm sorry to hear you had to take chemo that must have been difficult to go through! Ill be glad when a cure can be found but am so glad at least for now there are treatment options available so life can resume as best possible until a cure or close can be found 🙏 x xx

Dh is 10 months down the line from his first flare up and still on 40mg of pred., As soon as he starts dropping he flares massively.

Mercaptapurine?! Seems to be working a bit better for him atm.

I am no expert but once had a colitis flare up - 9 week course of steroids took it right down.

I do know there are risks with no treating colitis, so if steroids are what he needs to get it down, then that’s that. Certainly he needs to do something - for your family’s sake he cannot refuse treatment and remain unwell.

I'm a colitis sufferer.

Steroids really do help to bring a flare up under control. Yes, there are downsides, but there are also risks involved in leaving colitis untreated (It is more likely to spread along the colon and damage the lining. It also becomes harder to get under contol).

Your DH will probably be prescribed a course of steroids to get it under contol, and then taper off them. It is highly unlikely he will just be left on them for ages.

When I was first diagnosed (17 years ago) I generally just needed a course of steroids once in a while, and was in remission the rest of the time. Over time though, it developed to a stage where it flared straight up as soon as the steroids wore off. That was when my consultant moved me onto a more permanent imunnosuppresant. That also brings downsides (being immunosuppresed in a pandemic isn't great!), but the colitis has been very nicely under control for five years, and I am well.

My DD13 has UC and had a flare up in the summer. She was terrified of having to go on steroids again as she hated what they did to her face and body. Her consultant at GOSH is very reluctant to use steroids unless absolutely necessary.

After two weeks of suffering while we awaited blood test results she was prescribed the rectal foam salofalk and the flare cleared up within days but she took it for a couple of weeks ( dose gradually reducing ) to make sure.

We now have to keep a stock of it and have been advised to use it at the first sign of a flare up.

DH has colitis, which is in remission now and has been for 7/8 years. He had 3 flare ups, one of which lasted a week and he lost 1 stone in (already very slim so looked skeletal) - on the toilet all day, in pain, couldn't even keep water down and his hands and feet were blue. It was horrific.

So, he was prescribed prednisone and some sort of anti spasmodic for his bowels but he took them a few days and then refused as he doesn't like to take medicines if he can help it and felt that they were making him worse. I was at my wits end researching and ended up doing a bone broth diet and no word of a lie, within 2 days he was fine and has been fine ever since. He has changed his whole diet, no mega spicy foods or greasy foods, absolutely no alcohol (wasn't a drinker really anyway so not a hard change), a lot less meat, healthy foods and careful with which veg he eats.

This is just my anecdotal experience. I think medication and following doctors advice is extremely important but so is really giving your diet an overhaul

His sibling also has it, didn't change their diet, continues to drink alcohol frequently and ended up in hospital on a drip, steroids and now has an infusion every month or two (can't remember name of infusion but it was new-ish and they said it had a fair few side effects so was a big decision for her)

"His sibling also has it, didn't change their diet, continues to drink alcohol frequently and ended up in hospital on a drip..."

I know you mean well, but please don't do the blame thing. Colitis is primarily thought to be an autoimmune condition. For some diet changes can work wonders. For others, we can mess around with our diet all we like and nothing works...

Thank you all this is all very helpful! He has tried the foam and abs hated it but very useful to know if he wasn't aware but sadly he didn't do well with that one at all, he has taken a raft of probiotics but I think we need to try the bone broth! I will ask my dad to make one he's very good at that and it's def worth a try. My DH doesn't drink a lot so that's helpful and he has tried various diets but it doesn't seem to make a difference what he eats and leaves atm, we can certainly try the broth I've heard it's very good. Just tricky and hard to live with for him and hard for me to see him like this esp at just 38 the sooner a cure is found the better!!

X x

@ApplePippa Very true, I don't mean to blame her it's just so frustrating to see her so unwell with her colitis after heavy drinking nights out etc.
Totally agree that everyone's body reacts differently though, we were so lucky to be able to fix DHs with diet.

He really isn’t being a drama Queen. I’ve been on steroids for five years. Low dose with an increase when flaring. Colitis is mentally and physically exhausting. I had an emergency sub total colectomy in June and am now a stoma wearer, colitis can be life threatening.
As for steroids, yes lots of really nasty and very serious side affects, BUT we don’t all get them so std a case of looking at quality of life. I couldn’t leave the house without them.

I was given a steroid called Clipper once. It is specifically for UC sufferers.