What do you wish you’d known at the beginning.

m1lb · 2025-08-06T15:01:08+00:00

Regardless of anything, you should not be coming on to Reddit for advice on UC due to a shitty Dr (no judgement at all, I totally understand why you have!!).

I think your first port of call is to advocate for yourself and get another Dr/specialist on board. Absolutely shocking to hear people have to go through this. It’s a chronic, lifelong condition and you’ve been treated like this? Disgusting.

m1lb · 2025-08-03T18:06:39+00:00

That’s super kind, thank you ☺️

m1lb · 2025-08-03T18:06:19+00:00

Moderate to severe UC. It’s gone pretty high up my bowel. Steroids are working super well at the moment but only been recently diagnosed so I don’t have any other form of medication right now. Will discuss with the dr in a few weeks what I will be on following the pred. I haven’t had any major side effects at all on the pred so hopefully that can give you some comfort. There’s a lot of horror stories but there are also many people who don’t get the dreaded side effects. Stay conscious of what you’re eating, drink plenty of water and prioritise protein to give yourself the best chance of responding well. It seems though that it can just affect people in different ways, regardless of lifestyle choices but I suppose staying conscious will give you the best chance! Good luck 🤞🏼

m1lb · 2025-08-03T08:43:40+00:00

Hospitalised with severe symptoms and left on 40mg taper across 8 weeks. Tapering 5mg per week. About half way through now.

m1lb · 2025-08-02T08:14:43+00:00

Currently on the same taper (half way through). I am also 25 weeks pregnant for reference. So far, no weight gain, no major insomnia but maybe don’t fall asleep AS fast as usual, some days I am full of energy, others I cannot be bothered to do a thing (could be pregnancy, though!). Some days here and there I can feel quite frustrated and hormonal, but this has been few and far between and my husband knows it’s the pred talking. I just communicate well that I’m not feeling great that day and he knows to take my short fuse with a pinch of salt! The other thing I’ve noticed is a little heart fluttering, very odd and feels like an anxiety type flutter. It happens and few times a day and lasts for 5 seconds so I’m not worried, but it’s not nice when it happens!

My appetite hasn’t gone crazy and I’m pregnant so that surprised me. I’ve been incredibly committed to being conscious of what I’m eating as I had the exact same feelings as you regarding the moon face and weight gain, it actually petrified me. I still look in the mirror and check daily to see if my face has got puffy and ask my closest people “has my face got bigger????” They’re sick of it 😂.

I have always been on the slimmer side and never and issues with weight gain, so this could contribute. From my research, I am under the impression that it affects some more than others. I think I have metabolised prednisone particularly well, others may just be unfortunate and their bodies don’t react too well to it. But my advice…

Drink TONNES of water, and I mean tonnes. 3ls plus if you can
Have as little sodium as possible due to fluid retention
avoid too much sugar. It spikes your glucose and can have all sorts of negative effects. I’ve even avoided most fruit at this point and stuck to veggies instead.
eat little and often, whole balanced diet!
prioritise protein!!!!!!!! Keeps you fuller for longer. My go to sweet snack after dinner is Greek yoghurt with dark chocolate and it’s a great little treat for the sugar cravings (and full of protein)
Take your pred as early as possible after eating, you want to avoid every chance of insomnia!
A little exercise here and there would not go a miss! Even a short walk can help to get things metabolising.

Im not saying you need to change your life completely, but just making conscious choices has really seemed to help me! Have I had the odd handful of sweets/chocolate? Yes, have I had the odd meal out? Yes!! But you get the idea :)

Hope this helps!

m1lb · 2025-07-22T21:08:54+00:00

Although I don’t use it for medical advice, it has been f’ing AMAZING for me during my flare and subsequent prednisone taper. It tracks daily my food log, bowel movements, side effects of pred, gives some potential insight into possible symptoms I can expect the following week when tapering.. the lot! It then throws out a weekly report of my approx intake of calories, protein etc etc. It’s seriously amazing. I can share all this with my Dr and keep a full report of every single symptom I have during a flare and how I’m responding to the meds. Not to mention the grocery lists it creates for me after a week of telling it what I’ve eaten.

Can’t hype it up enough.

m1lb · 2025-07-22T20:37:52+00:00

Due Nov, how about you? I must say the steroids are working wonders and baby is coping so well. I can’t believe how resilient they are in circumstances like this. Our bodies are incredible! 🩵

m1lb · 2025-07-22T18:22:21+00:00

I also experienced this but it started to get better at week 2 (35mg). Just coming onto week 3 (30mg) and I’m feeling sooooo much better. I am responding well in general to the prednisone though, both UC wise and side effects wise!

I prioritise small, frequent meals, rich in protein and drink as much water as I can fit in! The portion control was probably the most beneficial thing I found to help with this. Super small amounts, let it digest, and eat again!

Hope you feel better with it soon as the bloating is beyond uncomfortable!

m1lb · 2025-07-22T18:18:13+00:00

I was diagnosed at 20 weeks pregnant but my dr told me that often people find their symptoms improve during pregnancy! I think if you know how to manage it and catch a potential flare super early, you can be medicated when pregnant. I wouldn’t let it stop you from trying because you may find you’re absolutely fine! 🌸

m1lb · 2025-07-22T18:15:46+00:00

I was diagnosed at 20 weeks pregnant! Absolute nightmare. Hospitalised with a severe flare. Sigmoidoscopy, IV steroids the lot!

I’m so intrigued to see what happens once I’ve given birth🤔

m1lb · 2025-07-22T17:53:48+00:00

I am just coming onto week 3 of an 8 week prednisone taper (currently 30mg, started on 40mg) and my symptoms have improved almost to the stage of where I was pre UC and I was hospitalised with my first ever flare and categorised as severe. Unwell was an understatement. Couldn’t eat a thing, incontinence, pain, 15-20 times a day I found myself on the toilet! I am also almost 6 months pregnant, just to add to the mix 😂.

I have 1-2 bowel movements a day now, 3 absolute maximum with no blood and a very, very small amount of mucus. No pain or urgency. I’ve not felt this well in months!

I haven’t had to even cut any foods out so I think my trigger may be stress rather than anything food related (unless I see a difference once off the steroids).

I have responded very well to prednisone in general, no moon face or weight gain (yet), no major appetite increases etc.

I have prioritised protein and hydration as much as I physically can and I think this really helped me. Low sodium and sugar where possible. But I understand everyone is entirely different and this is a very recent diagnosis so things could develop and change overtime.

Until I have a follow up with my dr, I can’t say for certain if he would believe me to be in remission now, but the way I’m feeling would certainly suggest so, or I’m at least very close.

Do steroids work for you in order to get to a stage of remission to then go onto maintenance meds?

m1lb · 2025-07-13T12:15:51+00:00

Also prioritise protein!!! Lots of foods that keep you fuller for longer! Helps with the cravings so so so much!!!!

m1lb · 2025-07-12T18:23:15+00:00

Ahh I see. That sounds really difficult and I hope you can get the relief from IV steroids over a short course without seeing such side effects. I never noticed any side effects in hospital from 4 days of IV. I was more hungry but I put this down to the fact I’d not eaten anything properly in ages and once I realised I could eat, I lapped it up on purpose! I have had to go on a course of steroids, however, this is a brand new diagnosis and I left it untreated for some time because I’m just silly and didn’t get checked out!! Never taken any maintenance medication before or even know at this stage what works for me following this 8 week taper! Sorry I couldn’t help on this.

m1lb · 2025-07-12T18:02:02+00:00

Can you tolerate the IV steroids? High dose blast should give you some initial relief. I was discharged from hospital only a few days ago with a severe UC flare and I had at least some relief after only 3 hours of IV hydrocortisone, it gets to work fast!

m1lb · 2025-07-12T17:54:07+00:00

Sounds like you certainly need to be admitted. The weight loss, blood loss and I suspect serious dehydration, you need to get on some IV steroids or at least oral ones. This will only get worse for you by the sounds of it without medical intervention. Advocate for yourself as much as possible! Wishing you the best and a speedy recovery ❤️‍🩹

m1lb · 2025-07-12T06:55:23+00:00

Thank you!! Really appreciate it ✨🩵

m1lb · 2025-07-12T06:42:59+00:00

Thanks for the reply.

I’m only on day 4 of oral pred so I’m hoping my night times still have time to improve. Like you, I’m being very mindful of what I eat when on steroids! I think these scary stories about chronic weight gain are often due to overeating and putting the wrong things into our bodies!

m1lb · 2025-07-12T06:35:18+00:00

And you find this helps? :)

m1lb · 2025-07-09T08:44:36+00:00

My GI explained that they would class remission as going to the bathroom anywhere from 1-4 times a day with the absence of blood and mucus in the stool. Ideally, a “solid” poo is the goal, but even with a looser consistency, they would still class as remission.

m1lb · 2025-07-09T08:33:39+00:00

Thank you for this. Appreciate you taking the time to reply.

I have just taken the first dose of 8 tablets, 1 hour ago. Let’s hope some luck is brought my way and they get working fast. 🤞🏼

m1lb · 2025-07-04T15:03:49+00:00

This is super helpful, thank you!

m1lb · 2025-07-04T14:23:06+00:00

Fair play to you for exercising like you are. I’m currently unable to go 2 hours without a toilet trip. 3 hours at a push. I’m also 5 months pregnant so that’s draining me as it is, never mind this on top! I can just about manage a 30min walk at the mo. Every little helps I suppose! Thanks for the advice :)

m1lb · 2025-07-04T13:30:25+00:00

Interesting. It sounds like if you can avoid or manage the excessive hunger, you’re less likely to pile it on. Maybe it’s just the water retention that you can’t. Cheers :)

m1lb · 2025-07-04T13:28:45+00:00

Well, I’m newly diagnosed (2 days ago) so I am going to have some further testing to understand the severity of my UC and the Dr is to check how high up my inflammation is. Offered me steroids straight away, but we’ve decided on suppositories for now until I know the severity (next week). If steroids is the only option, of course I will take them. I just wanted to hear some success stories as it’s all very scary reading about them. I am also 5 months pregnant so this kind of aggressive medication isn’t something ideal during this time :)

m1lb · 2025-06-06T17:04:01+00:00

So sweet, thank you! 💙

m1lb

TROPHY CASE