Budesonide advice please

[Jumpey]

Hi.I'm new to this forum.So thank you in advance for any advice .I'm asking for help for my son who has literally just been diagnosed with Crohn's. I'm anticipating that many people on here will be experts on this condition and how to manage it.

He has been prescribed 3mg of Budesonide.The side effects look horrendous. I'm wondering what your experiences are with this drug. Does it help? What is the downside? Has anyone avoided this medication and managed this condition with more natural approaches? I would be so very grateful for your help.At the moment my son feels really overwhelmed. X

[Valbaty54]

Hello, I'm sorry your son has been diagnosed with Crohns, and yes, it will be all rather overwhelming at first. I have the sister condition Colitis. The drug he has been given is a steroid and we have all had something similar! The side effects can be alarming but the aim is to calm the inflammation and reduce symptoms quickly. All of the meds we take can have side effects, but your son does need to take them to control this autoimmune condition. He may find certain foods cause problems so a food diary could help. At this stage, I would follow the advice of the consultant and read all about the disease, a life-long condition, unfortunately.

[Smilerdownes in reply to Valbaty54]

That is really good advice you have been given. My daughter was diagnosed 10 years ago when she was about 24 and it took her a couple of years to come to terms with it - after being told for about 8 years it was IBS. My advice to you would be to ensure your voice is heard and if you are unhappy or worried about something don’t be fobbed off get a proper answer. A food diary is vital, my daughter realised a gluten and dairy free diet definitely helps her along with juicing every morning. It’s so worrying when it’s your children BUT although it’s not cureable it’s treatable and if treated correctly your son will be able to cope and live a normal life.

[Jumpey in reply to Smilerdownes]

Thanks for your reassurance and advice.What meds does your daughter take? X

[Smilerdownes in reply to Jumpey]

My daughter was initially given Infliximab (a biologic treatment) she was teaching in China when she got diagnosed (ironically after visiting GP in England on so so many occasions and even being referred to see a specialist who still insisted it was IBS) . Because she had private health insurance out there they recommended the biologic route (NHS would not have given her that at that time as too expensive). Anyway to cut a long story short she stayed on it for a year and then came home and following a further colonoscopy it was decided she could come off the biologics as they had healed her well. She then went on azathriopine and remained on that until about 3 years ago when she was struggling and they put her on Humira - this has worked well and she has had a baby now. During her pregnancy and for 12 months after she felt great and needed only azathriopine. However about 6 months ago she had a bad flare and knew things were not right - she had a pill camera and it showed inflammation. They put her on budesonide for 3 months while they got her Humira sorted. Now weaving off steroid and on Humira. She feels great on the steroids but has gained weight. My daughter is very knowledgeable and has written a book and runs a website so if you want any information or help let me know

[Jumpey in reply to Smilerdownes]

I would love the name of her book and website. You have been so kind and helpful.x

[Smilerdownes in reply to Jumpey]

Her book is called A Balanced Belly by Jenna Farmer - I am speaking to her shortly so I will get her Instagram and emails details for you

[Smilerdownes in reply to Jumpey]

If you google Jenna Farmer you will find her on Instagram and Twitter

[Jumpey in reply to Valbaty54]

Thanks for taking the time to respond. Have you taken these long term?

[Valbaty54 in reply to Jumpey]

I was diagnosed in my early 60s and have had UC for over 5 years. I have had about 2 years on and off steroids, in short courses starting at 40g then decreasing. 3mg sounds a low dose for your son. I'm now on stronger stuff - biologic infusions of infliximab plus azathioprine. Note the increased Covid risk when on steroids. Do look at the Crohns and Colitis UK website for excellent info and a Can't Wait card for emergencies. In time you just learn to live with the condition and adapt your activities if necessary. Life goes on!

[Jumpey in reply to Valbaty54]

Thanks for your kind words.x

[Valbaty54 in reply to Jumpey]

I meant 40mg dose, by the way! Ooops.

[jakelayla]

Of course you feel overwhelmed, this is a confusing and difficult condition. But you have over come the really difficult part...getting a diagnosis. The vast majority of people manage this condition, and lead normal lives. Your son will get used to living with Crohns, and he will be able to follow all his dreams. I took Budesonide when first diagnosed, 9mg daily reducing the dose over three months, it is a milder steroid. Within about two days of taking it, I felt back to normal. I always have some in the house, in case of severe flareup. Sending all my best wishes to your son, and your good self.

[Jumpey in reply to jakelayla]

Your words are so reassuring to me.Thank you dearly.I'm so glad you are coping well.x

[jakelayla in reply to Jumpey]

You are welcome. I was diagnosed with collagenous colitis about two years ago and budesonide has helped whenever I suffer a flare up. Good luck.

[leonnsworld]

I have Crohns for years.. I was started on buedesonide ( my pharmacy compacts it so it’s not a suppository) at first to get it under control and then was weaned down and switched to Salofaulk which has less side affects but doesn’t work as good as buedesonide 🤗 I find a lower carb diet helps and stay away from refined sugar so I can avoid switching back to the steroids ... persist on his subscribed treatment.... things should sort themselves out that way...and remember everyone is different so not all will work for your son but they will get him on the road to maintaining it 👍

[Jumpey in reply to leonnsworld]

Thanks for your help.x

[Akido in reply to leonnsworld]

useful, thanks!

[Lindaspinda55]

I’ve been on budesonide for years. All my doctors want me on Humara instead and keep telling me the budesomide will do a lot of harm. I still have inflammation and diarrhea most mornings but as long as I take it I do not get blockages. I’m scared of Humara. This isn’t the best post but I thought I’d share.

[dwillend in reply to Lindaspinda55]

I realize your post is from 6 months ago. But it is nice for me to hear that someone else is on long-term budesonide. I also have been on it for a few years. I did take a break and try Humira for 9 months, but it did not work. My doctor wants me on entyvio and says I am "willfully non-compliant" for refusing to go on an infusion drug. But he is also kind and has agreed to keep me on budesonide. He is retiring in 3 months, so I do not know what my future holds. Cheers.

[Jumpey]

Thanks for sharing.And huge good luck.x

[RuthRob101]

Hello. I’m sorry to hear about your son. I was in the same position with my 15 year old daughter 8 months ago and found it all very overwhelming. My daughter was in hospital for 5 weeks and we were only allowed to leave hospital due to covid even though she was still bleeding. Again due to covid we did not start any biologics like infliximab or humira, but instead had a long course of antibiotics and a liquid diet of Modulen IBD, an anti inflammatory milk formula. A drug called azathioprine had already been started and stopped as it gave my daughter acute pancreatitis. After a few weeks we then replaced the antibiotics with mesalazine ( also known as pentasa). After a few weeks on no food only the milk formula, we then made smoothies by adding things like chickpeas, soaked walnuts, fruit. Solid foods, mostly fruit, vegetables and nuts have been gradually introduced. The Modulen IBD is still incorporated into her diet and the only weakness she has is coffee. She has been in complete remission for a few months now, much to the surprise and amazement of her gastroenterologist who simply can’t believe it. He is not comfortable with the fact that my daughter is not taking much stronger drugs and I think that is a problem now, as doctors are reluctant to let patients try a more natural recovery. It is slow, takes determination and perseverance but it clearly can be done. My daughter’s case was extremely severe, her calpro was in excess of 6000 when normal is below 50 and her CRP was nearly 400, normal below 10. There was talk of a stoma if we dared to resist the ‘gold standard treatment ‘ of immunosuppressants. Maybe we are the exception, but it’s worth a try, as there are risks whichever way you go. I wish you every success whichever road you take. It’s a stressful journey but life will get better.

.

[Jumpey in reply to RuthRob101]

Thanks so much h for sharing your daughter's a d your journey. It's inspiring g and I'm so glad she's well. XI don't know about the figures you shared and what they mean. X