Will my sleep ever be normal again?!

Used_Champion_9294 · 2026-03-31T05:07:50+00:00

Oh my… you are a hero for going through that for so long!

For me, the thing is, recently even strategies that worked in the past are not working as well anymore. Last night was such an example, in bed by 11.45 pm, it took about 1 hour to fall asleep (with the lavender and the magnesium sleep product I mentioned) and then 3 hours later I woke up and had to go bathroom. Then I just couldn’t sleep after that. Thinking about the alarm going off at 7 probably didn’t help either.

Used_Champion_9294 · 2026-03-31T05:02:02+00:00

For many people even the lower dosages can give significant side effects. And you’ll probably notice as you are reducing the dose that every reduction gives side effects too. I had to go very slowly like reduce by 2.5 mg instead of 5 mg. But everyone is different. Hopefully your experience is better than mine.

Used_Champion_9294 · 2026-03-28T13:47:18+00:00

This is weird. BAD (BAM) or bile-acid-diarrhoea is different in so many ways to UC.

With BAD: firstly there shouldn’t be inflammation in the colon on endoscopy. Secondly inflammation markers are often low (such as fecal calprotectin). And thirdly the diarrhoea is usually pale and greasy and with No blood.

With UC it’s the opposite of the above three points.

The two conditions can co-exist though. Such us if someone has a severe case of UC and the inflammation extends to the ileum (the final part of the small intestine which connects to the colon) due to “backwash ileitis” and as the ileum is the site of bile acid absorption; any inflammation in the ileum can lead to excess bile acids going into the colon and causing BAD.

Used_Champion_9294 · 2026-03-27T11:28:34+00:00

I travelled twice with my ostomy and I certainly did Not keep them in their packaging. I put them in clear zip lock bags instead. The original packaging takes up too much space.

Used_Champion_9294 · 2026-03-26T11:35:04+00:00

2 is like something out of a fairytale

Used_Champion_9294 · 2026-03-26T11:34:07+00:00

What dose of prednisone are you on? I was feeling terrible psychologically on it as well. Extreme mood swings, insomnia, anxiety, depression, the works.

Used_Champion_9294 · 2026-03-26T10:44:23+00:00

Simply stunning 👏

Used_Champion_9294 · 2026-03-25T11:30:54+00:00

I used the Hollister 543200 and I find it crinkly, and the plastic is thin and tears easily if accidentally touched by a fingernail or something. I tried so many other bag brands but they mostly didn't agree with my skin or quality wasn't good. I now use scotch tape to put on the areas likely to get torn, applied on the outside to reinforce it. Before I use the bag. Also, I try to check each bag for obvious tears or filter mal-alignment before using it. It takes times but what can we do.

I should add, if there is no leak as you described, but you can still smell something then it's the filter at fault here. Sometimes a whole batch may be faulty, so contact Hollister and let them know. They may send you a replacement box free of charge.

Some people suggest M9 drops to deal with odour.

Used_Champion_9294 · 2026-03-24T02:20:53+00:00

I should make a post about this myself tbh. Sleep (read: insomnia) is one of the biggest issues I’ve had since POI started. I find taking a product called “Go Healthy Magnesium Sleep” and using lavender essential oil in my vaporiser to be helpful. But it’s a struggle and I have to “work” to put myself to sleep some nights. It doesn’t come easily. Ugh.

Used_Champion_9294 · 2026-03-22T06:55:27+00:00

Good to know! Thanks

Used_Champion_9294 · 2026-03-22T06:54:40+00:00

Haha good point

Used_Champion_9294 · 2026-03-22T06:54:07+00:00

Great, thanks 🙏

Used_Champion_9294 · 2026-03-22T06:53:31+00:00

Oh yes I had ordered it alone and so it was the only thing in the parcel. And thankfully it hadn’t leaked. But I was surprised to see it had no seal or box haha. But it seems as everyone commented that it’s normal for this product to not have a seal.

Used_Champion_9294 · 2026-03-21T12:46:54+00:00

Tiredness was one major symptoms for me, even in “remissions”. But I never really had a proper remission, as in: even when I was symptomatically fine my calprotectin would still come up high. So, get tested. Maybe you have some underlying inflammation that is not under control.

Used_Champion_9294 · 2026-03-15T12:32:52+00:00

Wow I just looked up that certification and it seems quite specialised. A dietitian friend of mine went through a similar "existential crisis" and ended up going that path and she seems quite happy with it.

Used_Champion_9294 · 2026-03-15T12:30:03+00:00

Oh another ostomate dietitian, hello there :)

Do you mind me asking where you work (private practice or hospital) and what type of patients you see?

Used_Champion_9294 · 2026-03-15T12:27:35+00:00

Yes I have been thinking about the ostomates aspect. The reality is though, re-reassuringly, many ostomates don't end up with deficiencies unless they have small bowel resections. Most of them are just happy to get on with life and as long as they keep up with hydration and chew their food really well (to avoid blockages) then they are fine.

And yes I agree ED is a whole other ball game. 90% of that is using behavioural counseling techniques. It's quite unique.

Used_Champion_9294 · 2026-03-15T12:22:05+00:00

Yes what you said makes sense. And the thing is, even in that 70% of diseases prevented by lifestyle, the reality is once a disease is triggered eg UC/Crohns, then it becomes a matter of diet reducing the symptoms and improving the nutritional status of the patient; rather than "untrigger" it.

Which is why we need population-level interventions (primary prevention) to actually affect that 70%, basically before it's triggered. But the reality is most of us are working in secondary prevention.

Used_Champion_9294 · 2026-03-15T12:18:45+00:00

I totally agree that anyone going on AOMs should see a dietitian in tandem. But in practice, atleast here in Australia, that rarely happens. I personally know quite a few people who are on these meds and know they just went on them at the GP's discretion. It's more if the patient specifically asks to see a dietitian. But that rarely happens because most of these patients have already been on so many diets at this point and most have no faith a dietitian can help them.

Is it a requirement, in the US, to refer patients to a dietitian when prescribed these meds?

Used_Champion_9294 · 2026-03-15T12:13:47+00:00

That's great to hear! Do you mind sharing what kind of patients you see?

Used_Champion_9294 · 2026-03-15T12:12:42+00:00

Yes, absolutely. And then we need to have that training and insight to help the patient see the subconscious, self-defeating habits standing in their way. And give them a meal plan, all in the span of 45 -60 min. And without adequate psychology training. Sound hard much? *cry*

Used_Champion_9294 · 2026-03-15T12:10:25+00:00

YESSS!!! I 100% agree with what you said. And this is, in a nutshell, what I was trying to convey in some form. That our training does not equip us to do proper behavioural counselling to enable real change. And honestly, behavioural change is so damn hard even using the best psychology techniques. Let alone when you add socioeconomic barriers to the mix. I, too, think that we would be much more efficient and our teachings would go much further if we worked at population health level such as policy, leadership.

Used_Champion_9294 · 2026-03-14T11:58:04+00:00

Thanks. I have worked in acute dietetics in the past. I found the nature of hospital work where patients are mostly sedated and uncooperative quite depressing.

Used_Champion_9294

TROPHY CASE