Feeling Anxious

[S-ved]

I have Collagenous Collitis.

My Consultant wants me to start mesalazine and stop the budesonide which I’ve been taking on low dose for several months now.

I’m feeling really anxious about moving to this new drug. Does it work? I know that you can’t take budesonide forever but it really has changed my life. I’m now worried that I won’t have the freedom I get now if I swap to mesalazine.

Does anyone have any experience with it and how effective is it?

Thanks 😕

[bantam12]

I’ve been on Mesalazine for 25 years and it’s kept me in remission so I wouldn’t take anything else.

[S-ved in reply to bantam12]

Hi, thanks for your reply 🙂. It’s good to hear it works for you and it’s encouraging too. I have to wait to get prescription from my GP but will give it a go.

So pleased you’re in remission. I love to hear about peoples successes with this frustrating disease 🙂

[Hephzi]

When I was first diagnosed with UC I was prescribed salofalk granules. Unfortunately they caused my symptoms to worsen. Caused very watery frequent diarrhoea and I was practically housebound. Not what you want to hear I know 🙁

I went back before the end of my course where my diagnosis was confirmed by pathology as collagenous colitis and was prescribed a course of budesonide instead. Which has kept me in remission so far.

It does work for some though. Maybe give it a go but if things worsen go back. I should have gone back sooner than I did with hindsight.

[S-ved]

Hi there. Thanks for your reply. No it’s not what I want to hear but I need honest answers so thanks for being honest. I have to give it a try and see if it works for me.

It’s the trial and error bit that makes me anxious and the thought of possibly going back to square one, god I hope not!

I also take citalopram for anxiety which can cause this disease but trying to come off of these and going through a new type of treatment at the same time, it’s all a bit daunting today

[Hephzi]

Yes I can see your concern. It’s hard to give up something which works. But steroids can’t be long term although I read so much that a long term low dose of budesonide is safe.

I think if mesalazine works as well for you then it will be better. It must work for lots of patients otherwise it wouldn’t be used as treatment.

Try and think positive as it may work great but go back if it isn’t working after a set time.

[S-ved in reply to Hephzi]

I also believed the same, that low dose budesonide was ok. I’m having another consultation I two months so hopefully won’t have to wait long if things don’t work out. He did say to me that he has got patients on budesonide long term but they don’t advise it.

I am going to try to be positive but if it doesn’t work I’ll take my chances with budesonide maintenance long term unless they come up with another solution.

Thanks again for your reply and glad you’re still doing well 🙂

[Frasina]

Mesalazine is fine; most people can take it without much in the way of side effects. There are many different ASA's and if the one you get given does not seem to work well, they can swap you to another; although all contain mesalazine, some work slightly differently in terms of where they target etc... your IBD team will know which is best for you. Give it a try.... I have pancolitis and since Oct when I was diagnosed through a colonoscopy I have taken Mesalazine and also took an 8 week course of Cortiment (budesonide). Good luck - hope you will be fine!

[S-ved in reply to Frasina]

Hi and thanks for your response. I know very little about this drug and so this information is really useful, thank you! I will Google it and see what I can find out. I didn’t ask many questions at the consultation but I’m sure I’ll have more at my next one! I’m glad it’s worked for you and it’s so encouraging to hear. Really hoping this works for me too for Collagenous Collitis.

[Frasina in reply to S-ved]

Yes do look it up; you will read about the different ones that are available. Any form of colitis apparently needs a long term drug that most people can tolerate and mezalazine seems to be the first option.

[S-ved in reply to Frasina]

Unfortunately thats true, it’s drugs for possibly the rest of my life but in comparison to life before them I’ll happily take anything that will control this. I’ll be checking out my options as to what’s available but hopefully my consultant will try me on what he thinks is best initially. Let’s see how it goes 🤞

[Susiiscute]

When I was first diagnosed with UC, I was prescribed Salofalk granules and they seemed to work great. Then my team prescribed Salofalk foam enema as well, but it affected my pancreas, so I stopped, but I would say, try it, we are all different. I later asked to try Octasa tablets, which is a Mesalazine and I’ve now been on them for a year, with no flare ups. At first I had some mild side effects, but I lowered my dose and that worked. In my case, I felt the need to experiment, because I don’t want to rely on steroids. I did take steroids for 10 days before I started on Octasa and I have a pack of 10 days worth, just in case of a bad flare, but I haven’t had to resort to taking them. A year ago, before the Octasa, my team wanted me to take steroids for x8 weeks, but I refused, due to the side effect profile. I had a phone appointment with my consultant a year ago and he was happy for me to take a lower dose of Octasa, if that was working for me. Personally, I think Mesalazine is worth experimenting with, before any of the more invasive drugs. I prefer to be in charge of my maintenance, because it’s my body and only I know what is working. My team can advise me, but they don’t always know best.

[S-ved in reply to Susiiscute]

Thanks for your reply. I am secretly hoping that I am prescribed mesalazine in tablet form but I’ll just have to see what works for me. It’s good to hear from someone who is controlling their issue with this drug. Thanks for your input and wish you well

[Susiiscute]

To be honest, the granules are easier to take and taste nice, so give them a go if you’re offered them first, good luck Xxx🙂

[S-ved]

Ok, thanks 🙂

[Avenue1351]

I have had Crohn's Colitis for 22 years and when diagnosed was initially put on steroids for some 3 months to calm my bowel. I was also prescribed Mesalazine granules to take on a daily basis, 2g per day. However because I began to feel a bit better, I did not continue taking the granules for quite a while. I then had yet a further colonoscopy which showed inflammation again. I had to confess to my consultant that I had not been taking my medication as I should have and he expressed concern that I would need further intervention with a different drug which would possibly cause me more problems! I therefore promised him I would take my Mesalazine as I should have done in the first place! He is due to ring me in a couple of weeks to see how I am and what to do next. I have been taking my Mesalazine every day now for the last five months and I have been fine, so hopefully this will keep me in remission and not have to go down the route of further drugs which I don't really want.Hope this long reply helps you.

[S-ved in reply to Avenue1351]

Hi and thanks for replying and please don’t apologise for the lengthy message. I’m keen to hear everything shared with me. Do you suppose the steroid was doing the job and you perhaps thought why take anything else if I feel ok just taking this. I can see why you thought that. Maybe the consultant should have specified it was important to take both?

I’m really pleased mesalazine is working for you and boosts my confidence and belief this drug can hopefully help me too.

I’m waiting to hear from my GP for the prescription but hoping it will be soon so I can get this show on the road!

Wishing you all the best for your appointment with your consultant and may you continue to be in remission. Keep us all posted 🙂