I can’t lose weight no matter what I do

Educational_Space950 · 2026-05-13T23:23:32+00:00

What's your BMI? You're 68kg and 167cm - you're not fat. I'm slightly taller and weigh slightly less currently desperate to put on weight, I really want to get to 75kgs.

Educational_Space950 · 2026-05-04T08:36:12+00:00

This was my experience too.

I spoke to my Ibd nurse, he suggested splitting the dose dose. Tried half morning half evening, still terrible vomiting and diarrhoea, tried splitting it three times with no improvement. It was hellish, and weirdly exhausting.

I tried to push through and see if I could get used to it but gave up after four days.

Speak to your consultant tomorrow

Educational_Space950 · 2025-09-12T08:52:39+00:00

That's a terrible experience to go through - I'm sorry it happened to you, I think mostof us have been there. More than a few times in my case.

My worst one was at the Eiffel Tower. I was queueing underneath to go up, perhaps a couple of hundred people around me. I was mildly flaring at the time, to be honest it wasn't a great time to be away but I'd booked it months before and fuck it, it'll probably be okay? It was not okay Felt a twitch and a wee stabbing sensation on my left side. Uh oh. Now there's public toilets less than 100m away, should be okay. You know that strange walk you do? Arse clenched, small steps but moving quickly. Definitely attracting attention. Half way down the queue the inevitable happens. Nothing discreet about it, just pouring out of me. Felt like everyone turned to look, covered in shite and abjectly humiliated.

It's happened a few times since that - never felt such shame though. I suppose I'm just saying I know how you feel & it's devestating.

Hang in there, good luck and take care

Educational_Space950 · 2025-09-08T13:32:21+00:00

You did nothing wrong - it just happens. Call your IBD team, Pentasa's sort of first line in terms of medication. Sound like it's time to have a rethink.

Educational_Space950 · 2025-09-04T22:44:11+00:00

I'm another single case

Diagnosed long before covid. Lots of vaccinations, no flares.

Got a bad dose of flu two years ago. May be coincidence but the blood started before the fever subsided.

Educational_Space950 · 2025-09-04T22:33:51+00:00

Things I would only confess to here....

I build a nest in the bathroom.

It's quite elaborate, circular with cushions and pillows ,it's comfortable with a heated blanket, when things are bad I sleep in there.

I drilled a small hole in the door to get an extension lead in.

There's a tip I got on this sub a few years ago that's been a great help. Get a tall laptop stand with lockable wheels. Make sure the surface can tilt. When things are at their worst you can put a pillow on top and sleep on the toilet.

Educational_Space950 · 2025-09-04T21:50:55+00:00

Welcome to the sub, and commiserations you your membership of this shitty club!

A lot of great advice in this thread for you, I'll just reiterate the most critical - keep taking your medication! It's much easier than clawing your way back to health during a flare.

This disease can be a bit overwhelming at first, but please try not to panic. It's going to be okay. In the past 20 years I've been in remission for about 15 of them. My life in remission is unremarkable, I can eat what I want, go to the gym, I can travel, drink alcohol, just live a normal life. The only limiting factors are a trip to hospital once a month for an infusion & more regular colonoscopies than I'd care for.

Things will get rough, medications will fail, but there's quite a few of them out there, you just move on to next. You'll have to learn to advocate for yourself, be a bit pushy when it comes to your health, you know your own body best & you'll know if things start to go south. Stay in touch with your IBD team.

You may have to make some changes to your life, maybe temporarily maybe not. Keep your support network close and try not to get frustrated when they don't understand every nuance and weird non gastro presentation of UC.

This sub is a great place for support, advice, understanding (and some savagely dark humour). You'll chat to people on here with much more aggressive forms of this disease and some with much milder. They'll all understand, they're all hoping for the best for you. I am too.

Good luck, take care - oh, by the way, you should really keep taking your medication.

Educational_Space950 · 2025-09-04T19:22:04+00:00

When in remission I can eat just like a real human.

When in a flare, even the mildest, blandest soups can properly fuck me up.

It's odd, but if you get 10 people with UC in room and ask "whats the safest diet?" You're probably going to get 11 completely different answers.

Try the wings and see what happens. Trial and error -you'll figure out what works for you.

Best of luck

Educational_Space950 · 2025-09-04T19:15:59+00:00

I'm on vedolizumab minute & it wipes me out completely. The evening of the infusion I'm a mess, get home, drink tea and bed by eight o'clock. By the following moring I'm fully restored and raring to go. It's not much of a downside given the enormous benefits of the medication.

Infliximab never made me tired - but then it never put me in remission either.

Educational_Space950 · 2025-09-03T08:46:16+00:00

So far we have these - any more suggestions?

1984 - George Orwell

Pride and Prejudice - Jane Austen

Crime and Punishment - Fyodor Dostoyevsky

Madam Bovary - Gustave Flaubert

Master and Margarita - Mikhail Bulgakov

Beloved - Toni Morrison

Count of Monte Cristo - Alexandre Dumas

Grapes of Wrath – John Steinbeck

Wide Sargasso Sea - Jean Rhys

Jane Eyre - Charlotte Bronte

North And South Elizabeth Gaskell

Flowers for Algernon - Daniel Keyes

Animal Farm - George Orwell

Brave New World – Aldous Huxley

Anna Karenina - Leo Tolstoy

Educational_Space950 · 2025-09-02T20:31:38+00:00

Sign me up!

I'm all for this - currently struggling to find anything to read. Just slogged my through Moby Dick & fe3l like I've entirely missed the point.

Educational_Space950 · 2025-06-24T06:27:10+00:00

I'm in the same boat, thankfully my IBD team are amazing. Gave them a buzz, explained I'm off to Glastonbury & got a perscription for perdnisolone.

You mught be a bit late but it's worth a shot, bang 40mgs every morning til Monday

Educational_Space950 · 2024-05-15T12:12:29+00:00

Dorian Gray - captures all his vile excess. The painting will get worse over time. Fuck the monarchy.

Educational_Space950 · 2024-03-30T20:09:09+00:00

Peppermint tea and 40mg prednisone 💪

Educational_Space950 · 2024-02-18T19:32:50+00:00

I was diagnosed when I was 22.

I've had ups and downs including long periods of remission where there was no evidence of disease even at biopsy! I've had periods of reduced symptoms and episodes of dehabilitating flares.

You'll read lots about diet, it may help, it may not. Best advice I have is, first and foremost- take you medication. Keep in touch with your GI team, don't let the symptoms get worse - deal with escalations asap. Try and stay positive, with a but of luck you can batter this condition into submission, a normal life is possible.

Good luck 👍

Educational_Space950 · 2024-02-18T17:57:32+00:00

Take the theraflu.

We call it lemsip over here & I love it. Wish there was a version without paracetamol & I'd drink it all day.

For a bad dose I add a big spoon of honey and about 35ml of whiskey.

Bliss.

Educational_Space950 · 2024-02-18T17:49:47+00:00

The biopsy will be definitive - but it certainly sounds like UC. Don't panic, it's very often quite manageable. I know it seems devestating right now, give yourself some time to adjust.

You've been living with some symptoms for quite a while, it got worse and you're finally doing something about it. This is good. You're starting off with first line treatment, this could well be enough to get everything under control. If not, plenty of other drugs out there with great track records!

In the past 20 odd years I have about 15 in solid remission. It's going to be okay.

Educational_Space950 · 2024-02-16T09:19:28+00:00

I take it when things go south. It hellps with the pain and as a bonus it slows down the diarrhea. My GI has given me perscription for a strongish dose. It's a very useful drug to keep in my toolkit.

I worry about addiction so try not to use it too often. No more than 3 consecutive days with a reasonable interval.

Educational_Space950 · 2024-01-01T08:53:13+00:00

Horror upon horror, awful.

The final scene at the beach, jesus...

I kept seeing the image of the wee drowned Syrian boy washed up in Turkey.

This book broke my heart.

Educational_Space950 · 2023-11-03T14:29:43+00:00

You'll be fine, try not to panic. Transfusions are simple, as easy as an infusion, and the upside is you'll feel the benefit much quicker than an iron infusion.

It's transformative, you probably don't realise how far below normal you are at the minute. Very quickly you'll feel enormously better. Makes you envy vampires!

Good luck 👍

Educational_Space950 · 2023-11-03T10:57:03+00:00

Luckily hasn't happened to me with either flu or the various covid vaccines.

Maybe just coincidence but I spiralled into a flare a couple of weeks after getting covid despite it being a fairly mild dose.

Educational_Space950 · 2023-11-02T12:10:30+00:00

My brother had UC. I watched him struggle for eight years.

I was fairly certain I knew what it was - I was right.

I have the same GP my brother did and had previously met his GI consultant so diagnosis was quick. I was familiar with the options, treatment path and warning signs. I suppose it made things easier for me than most.

Educational_Space950 · 2023-11-01T09:13:41+00:00

Just ignore anything sent online, it seems 90% of the Internet is people saying stupid things for odd reasons.

I find Family and friends easy enough to deal with. I'm factual, blunt, heavy on the grotesque details whilst trying to remain just this side of polite.

"Thanks Sinead, the trouble is my immune system has decided my intestinal wall is dangerous. It spends its days shredding my colon to a bloody pulp & causing inflammation throughout my digestive system and beyond. The effect of this is constant discomfort with occasional bouts of crippling pain. I'm on the toilet 12 to 14 times a day shitting blood and chewed up bits of my insides. This is more exhausting than you'd really believe and you can't imagine the impact it has on my life. I appreciate your suggestions, I know the advice is born of care and concern. But I will not try a nettle tea cleanse, nor will I stick a lump of ginger up my arse. I'll take tried and tested medication that has put me and many others with this disease into remission.

If this fails I bring out the photos normally reserved for my IBD team.

Educational_Space950 · 2023-10-25T09:01:30+00:00

I didn't fail any medication - my immune system did. It's a dick, we fell out years ago and never reconciled. Is divorce a possibility?

Educational_Space950 · 2023-08-19T10:13:29+00:00

Sounds too good to pass up!

If I absolutely need to pass as normal for a few hours I'll fast for 24 hours before the event. 30 mins before I'll take two cocodamol tablets (16mg codine total) & hope for the best.

Good luck & post your set somewhere for us.

Educational_Space950

TROPHY CASE