Ulcerated colitis help

[Remmy123]

My son was DX with colitis and started on Pentasa 3 weeks ago.

He has never struggled or been in pain so far.

He has been complaining of sore ankles and knees ( all at the same time) enough that he had to stop playing football.

Is this the medication or UC - and only happened when doing sport?

He is also anemic and due an infusion Wednesday so I hope it's that lack of iron

But even when his flare started he was still doing hours of football!

His bowel movements are back to normal and now this

I am sick with worrry he is only 12

Thanks

[LoveFall]

I have ulcerative colitis. I have had it for 40 years.

Try not to worry too much and let the medication work. It could well be the UC causing the joint pain. Joint pain is common. I have taken the medication in Pentasa and not noticed joint pain linked to it,

Fatigue is also a big issue, much bigger than most people think.

The best thing you can do right now is make sure your son is getting proper care, including diagnostics like colonoscopy. Then they can give the best treatment. The treatments are much, much better than they were in my early days. The new biologics have been life changing for me.

I am sorry you and your son have to go through this.

[Londonnight]

My son was diagnosed with crohns when he was 8. It is a very overwhelming time trying to understand everything at first. My son went straight onto steroids, pentasa and azathioprine.

Pentasa is one of the milder ones to treat IBD [ crohns or colitis ], they may be waiting to see how he responds before trying stronger medication. The sore knees and ankles are more likely to be because he is low in iron rather than the pentasa. Speak to your IBD nurse.

Have your joined crohns and colitis UK or CICRA? Both are excellent at giving advice. CICRA is aimed at children.
Also look up UK parents of kids with IBD on facebook, this is an excellent group for parents where you will get lots of help and advice.

My son is now 20 and doing amazingly well on infliximab infusions. He is working full time and enjoys his life despite have crohns. If you want to chat PM me and I'll help as much as I can xx

[Remmy123]

Thanks both

@Londonnight thanks for your insight! I'm panicking thinking he won't be able to run and play football or sport - I sound dramatic but broke my heart watching him limp around the pitch 🥲

[Remmy123]

I've found the FB site but in wary of joiniing as some of those forums are making me feel worse!

[Londonnight]

@Remmy123 honestly it will get easier, it is still early days for you both. There are lots of professional sports players with IBD who manage really well.

The FB site I recommended won't make you feel any worse, they can be really useful with help and information.
Another one to try is U.K Crohns and UC Support & Friends on facebook

[Remmy123]

Thanks - I'm struggling so much with the not knowing and worry for his future

It's a rollercoaster really

[LemonSherbetFancies]

Crohns can cause inflammation in joints, very common.
I would though check his inflammatory levels and even his anti ccp. Unlikely but my relative has the same condition and had terrible joint pain. Her doctor tested for rheumatoid arthritis and it came back as very high. Unlikely in your sons case but thought it worth a mention x