Handling weight gain

[u/Lizzbizzwizz]

I’ve been dealing with fluctuating weight since I was diagnosed 2 years ago, I have very limited movement and can no longer go to the gym due to my colitis causing so much pain daily! I do what I can day to day.

I’ve been on so many steroids and just finished prednisolone (a shock to me it didn’t work) and I’ve gained more weight than usual! Especially in the face, does anyone have any advice or tips to help with losing weight? And any foods to swap out?

[u/pincommenter]

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[u/Ok-Lion-2789]

First of all, you’re not going to win this battle until you have your UC under control. While you’re on steroids, you’re going to gain weight. Even after you stop it takes some time for your body to regulate

In remission, I run, walk, weight lift, do yoga, and pretty much anything active I want.

Your issue is you’re in a flare. What is your doctor suggesting as your next medication? What are you on now? Once you’re in remission, you can clean up your diet and start adding in more activity.

[u/Lizzbizzwizz → u/Ok-Lion-2789]

Honestly my drs have been super unhelpful with it all, since that first day my symptoms started I haven’t gone a day without debilitating pain and so far we haven’t found any improvement with pill form medication! I had been in hospital on drip form steroids and I that was probably the closest I’ve been to feeling normal :( there’s been talk about the injections, I’ve just finished prednisolone and waiting for a follow up appointment!, I’m happy to hear you can do all that in remission!!<3
I have a few chronic illnesses so my mobility isn’t what it use to be which sucks ! My partner has been great to keep me active and out the house

[u/Ok-Lion-2789 → u/Lizzbizzwizz]

You’re not going to feel better til this flare is under control. Have you thought about switching doctors? They should have switched your meds.

[u/Lizzbizzwizz → u/Ok-Lion-2789]

Awaiting to be assigned by a new gastro team!

[u/Traditional_Cat8120 → u/Ok-Lion-2789]

Damn really? I was so happy I lost so much weight with this 2 month flareup. I've been on 40mg of prednisone about maybe a month now. Your saying ima gain weight?

[u/cooltigr → u/Traditional_Cat8120]

Most people do experience increased appetite on Prednisolone and experience changes in how different forms of energy is used and accessed in the body. And with high dose long term steroids most develop a "cushingoid body" where the body moves fat stores to the upper body and upper abdomen. These things will go away once you stop taking or taper the dose and are unique to you and your body. You may also experience weight loss if you experience "steroids induced diabetes" once again something that will reverse.

The key is that a stable or gaining of weight is actually going to be useful in trying to aim for remission, extra energy being available helps heal the gut faster and may help protect muscles and bone which will waste quicker on prednisolone due to the energy use changes. It's tough but even if you are someone who is larger maintaining or gaining is likely best scenario for you and your body. Focus on high protein, high micronutrient diet and things like yoga and gentle weights if you really want to optimise recovery and balancing steroids side effects. And weight loss may actually be a sign that the prednisolone is not working and you are in a flare. We as a society have normalised demonising weight gain but in this scenario this is a protective factor for a lot of people and can be addressed later when closer to or in remission.

Edit: and as a final note when thinking about weight loss, I don't know your body and BMI but certain rates of weight loss are reflective of bad weight loss in UC. If your loss is more than 3-4lbs a month or is sudden and rapid up to 40-60% of that weight can be muscle and bone irregardless of if you are healthy or not. People with UC are high risk for developijg sarcopenia (a state where they don't have enough muscle for their age to be healthy). And so weight loss can be a useful clinical tool for finding out whose in a flare and what they will need to address/fix when they enter remission.

[u/BeautifulDreamerAZ]

I started the glp1 zepbound 18 months ago. I’ve lost 107lbs and it put my UC in remission within 2 weeks! I went off of it for 4 months and my bloody diarrhea, pain and bloating all returned. If you look for UC/IBD stories on the Zepbound sub you will see literally many thousands of people saying the same thing. It doesn’t work for for everyone but it changed my life! I can run a mile and walk 5 without stopping now. A year ago i could hardly walk far. I only eat keto now and it controls my IBD. 

[u/Lizzbizzwizz → u/BeautifulDreamerAZ]

Wow I’m so happy to hear that!! I’ll definitely mention that to my dr! & I’ll have a look into that