Collagenous Collitis Advice

[S-ved]

Hi, I’m just wondering how long you can take the maintenance dose of budesonide for Collagenous Collitis? Is there a time limit on this? I completed my 3 month course of 9mg/6mg/3mg but after a couple of weeks my symptoms came back. My consultant said that I could take 3mg for a further 8 weeks which has just come to an end and Already I’m having symptoms again. They suggested I control it with occasional immodium after the 8 weeks but wondered if this has worked for anyone else? Sorry for the long post but feeling a bit anxious about it all, especially with Christmas on its way. Thanks

[Hephzi]

Hi there. I suffer from collagenous colitis too. I have finished my first treatment and tapering off. I am a month off them and ok for now. Although I do wonder how long for, so also interested in others experience here.

My consultant told me if it comes back that another course should resolve it but didn’t say what would happen if it didn’t. I can’t see how just using Imodium as the only treatment will work.

I did read Ann’s story and video on Guts UK who seems to take 3mg twice a week as maintenance, so long term but not even daily.

gutscharity.org.uk/advice-a...

[S-ved in reply to Hephzi]

Thanks for your reply. It’s good to hear things are good with you after tapering off. I will read the link you have sent me too. I’m seeing my consultant in February but my last consultation was with one of his colleagues and not him and felt her advice contradicted what he was saying to me initially. I don’t want to take immodium as it makes me feel sick and my stomach can make awful growling noises when I take them. I’ll read Anne’s story and see what information I can gather from this. Thanks 🙂

[Eyebee]

I took budesonide for about 8 weeks, until I was switched off it. I am glad though. I put on ten pounds in that time and I'm already overweight!

[S-ved in reply to Eyebee]

Hi, yes I have gained weight too but to be honest I haven’t worried about it as I’ve just been so happy that I’ve been able to live a normal life again. If anything I’ve eaten things I probably shouldn’t just because I could 😋. Now my symptoms are back I need to watch my diet but saying that this didn’t make any difference before I was diagnosed. Can I ask what you take now and is it for Collagenous Collitis?

[Eyebee in reply to S-ved]

No, I have Crohn's. Small Bowel. I am taking Azathioprine, but they say that's not doing much either, so they're looking to start me on a biologic infusion next.

[S-ved]

I’m sorry meds aren’t helping, that’s frustrating I’m sure. I hope the infusion is the way forward. Wishing you the best of luck

[jakelayla]

Hello S-ved, it's confusing isn't it? I am on a short course of Budesonide, I started with 6mg after two weeks tapered to 3mg daily for two weeks and now take 3mg every other day. This is keeping all symptoms at bay, I will do this until after Christmas then have a break from steroids and rely on imodium, I don't like taking imodium either! We all have different ways of dealing with this condition, so would not like to advise you on how you take your medication. No one wants to feel poorly over Christmas, especially with digestive issues, so I hope you manage to get your symptoms in check. Wishing you good health and a happy Christmas.