Budesonide

[Sunita77]

Hi, I'm currently being investigated for Crohn's. I've had bowel issues for over 20 years and always been told it's IBS. Anyway three years ago, I had my gallbladder removed and my symptoms went in to overload mode. My calprotectin levels were in the hundreds. Since then I've had three colonoscopies. All of the biopsies have always been normal. The first colonoscopy showed ulcers in my terminal ileum, the second one was normal but the third one showed mild inflammation in the ti area and they diagnosed terminal ileitis. I was told the terminal ileitis was non specific.

I've had the capsule endoscopy twice which has shown ulcers. My consultant was bordering between BAM or Crohn's but he said there wasn't enough evidence of it but there was a possibility of BAM. Since then I have been put on Budesonide for 12 weeks. I'm on 9mg for 8 weeks, 6mg for two weeks and then 3mg for two weeks. My consultant has asked me to send in a stool sample after 8 weeks. He said if the calprotectin level normalises then he said we have enough to suggest it's Crohn's.

My question is that I've started off really well with Budesonide. I'm not having abdominal pain or cramps. The urgency and frequency of the toilet trips has decreased but I'm having some days where I'm feeling a bit rubbish and the toilet trips increase along with the abdominal pain and cramps. Is this normal? I'm getting some side effects such as increased hungry pangs, tiredness and cramps in my legs at night.

Thank you for reading.

[Frasina]

Budesonide is still a steroid although the side effects are not as severe as tasking Pred. I was on Budesonide for a flair (I have patchy pancolitis) but was given a different type of Budesonide called Cortiment as apparently this was better for colitis rather than crohn's. I also had a increase in hunger and more fatigue, however after the 8 weeks I did feel much better so it may be worth persevering if the end goal helps!

[Sunita77 in reply to Frasina]

Thank you for replying. It has been a full week since I've been on it and was surprised it worked so well so fast. I'm just having odd days where I'm about knackered and symptoms return. I also have sleep aponea which is making the fatigue worse! I will persevere with it. I'm glad it helped you!

[Frasina in reply to Sunita77]

It does take time to work so if you can persevere you should especially as you say it is helping. As said, if you were given Pred to take you would be having much worse side effects! Good luck.

[Sunita77 in reply to Frasina]

Thank you! 👍🏼😊