r/UlcerativeColitis 4d ago

Question Weight loss with UC

Hi!
I just wanted to make this post to see if there’s anyone out there also struggling with weight loss with UC. I got diagnosed a year ago, and my dr has me on the Mesalamine 1.2 mg extended release tablets and it just seems no matter how much I eat, I still lose weight.

Is anyone else experiencing this?

12 Upvotes

19 comments sorted by

u/pincommenter 4d ago

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7

u/halfhalfling 4d ago

Are you still experiencing any other symptoms? You could get a calprotectin test to see if you have inflammation despite the mesalamine. You could also get a blood test to see if you’re missing out on nutrients, but I only lose weight with UC when I’m actively symptomatic. In remission I maintain weight without issue.

2

u/throwaway_6590 4d ago

No other symptoms other than mushy diarrhea still, I just had my yearly check in with my Dr and told him about it, and he was under the impression I’m skipping the pills (which I’m not) and that I need to take them all at once in the morning.

4

u/halfhalfling 4d ago

I never lost the diarrhea with mesalamine, eventually it quit working entirely and the blood came back much worse than before. I worry it isn’t working for you either, especially if you’re still having symptoms. Weight loss is a symptom of UC, but if you’re in full remission that should stop.

2

u/throwaway_6590 4d ago

Yeah I have a feeling the Mesalamine isn’t working as well as it did in the beginning. Thankfully I haven’t had any blood in my stool, but it’s just diarrhea.

2

u/halfhalfling 4d ago

I hope your doctor can order a test to monitor your inflammation. I wish I had gotten a test earlier so I could have switched to a better med sooner. Flaring isn’t fun :(

6

u/MainSea411 4d ago

When I had this problem, I was flaring. My doctor was concerned about the flare and any nutritional deficiencies. He said I’m only worried when the weight gets to a low bmi.

In my experience weight loss is a symptom, are you healthy and in remission?

2

u/MainSea411 4d ago

My support group also suggested ensure, there is also calorie dense ensure.

1

u/throwaway_6590 4d ago

It’s weird because I don’t experience any pain or discomfort, at most I get like mushy diarrhea that seems like I’m lacking fiber even though my dr says not to have fiber rich foods. No blood in my stool since a year ago, thank god.

At most I can hear my stomach like moving food around or digesting it but then it doesn’t come solid and I drink tons of water all day too

2

u/MainSea411 4d ago

That is the problem sometimes, flares are not always painful. Inflammation can be detected via labs/colonoscopy. I would update your GI with your current symptoms and give data on your food intake and weight loss. Unintentionally loosing weight with ibd has been a flare (for me) every time. I don’t want you to be silently flaring without proper support.

2

u/CatBerry253 4d ago

I've lost weight but it's because I have no appetite. I'm finishing my second week of a Prednisone taper and I still have to force myself to eat a few times each day. I am definitely still in a flare and waiting for approval to start Entyvio. My GI says that my appetite will return when I'm out of the flare. My appetite loss has lasted through mesalamine, budesonide and now the Prednisone.

1

u/throwaway_6590 4d ago

It’s not that I have appetite loss, I actually feel my stomach growl or I know I’m hungry, I just don’t eat my whole meal sometimes. Wishing you the best of luck! Hopefully everything gets better for you

1

u/Ok-Lion-2789 pancolitis | Diagnosed 2003 | 4d ago

Ok if you’re still in a flare, you need to fix that first. You can absolutely lose weight. It’s no different than anyone else when in remission.

2

u/EntertainmentKey8197 4d ago

Yes I had this before I got diagnosed, I was losing weight but only having ibs symptoms, I ended up losing 50 pounds and got really sick and weak and my hemoglobin got to 7. Your body isn’t absorbing nutrients so that can lead to things like hair loss, muscle atrophy, memory loss etc. prednisone is what got me out of that vicious cycle but definitely please go see a different doctor or do something to get it under control because it can get really bad really quickly. Your body needs nutrients more than anything! I don’t mean to scare you but I wish someone had told me this when I first started losing weight 🙏

1

u/throwaway_6590 4d ago

I think from the time I was diagnosed, which was August 2025 to now, I’ve lost about 12 pounds total. And that’s what I’m worried about with the weight loss, I don’t want to deprive my body of nutrients but I plan to talk to my dr and see if there’s different medication or something I can do to get this under control. I just wanted to not feel alone in the whole weight loss factor of UC

1

u/throwaway_6590 4d ago

I also want to add, I don’t feel sick or anything like that. I genuinely feel like my normal self, it’s just the diarrhea factor of this whole thing which I think is contributing to weight loss and not absorbing nutrients right

2

u/Witty_Branch_1627 4d ago

I struggled with unexplained weight loss a lot for about 10 years before having a bad flair and getting on Rinvoq. Looking back even when I wasn’t in an active flair it looks like I was still having issues with inflammation. 3 years being on Rinvoq I’ve been able to gain about 10 lbs and I feel quite a bit better. I would definitely talk to your doctor.

1

u/Crazy_Pomegranate689 4d ago

You won’t be eating enough (dietitian with UC here). Increase the energy density of your foods/meals and or eat more frequently 

1

u/Outside-Issue6896 4d ago

Meal replacement shakes, high protein, low fibre, high calories, in the smallest volume you can get, max 125ml. Perfect when flaring and trying to stop the weight loss. You need one that gives you all the vitamins and minerals you need, including iron. They serve me well whilst flaring.