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He's on 20mg of oral pred. They are intending to get him off the steroids quickly as they've deemed him non responsive. Basically the IV steroids didn't produce any kind of bounce. They do want to do the enemas though as there is a lot of clustering. We are actually pushing for him to come...

Omg this is such a roller coaster ride. J has not been good at all for the last couple of days after a brief lift mid week. I don't know if that's because there was a response and it has petered out. Infliximab again tomorrow. This is so exhausting for everyone. Poor J.

So... Some positive signs for j ... The doc thinks he is doing well and incrementally improving. Tummy is soft and he is brightening up. Still up multiple times during the night but it's reduced. One semi formed poo last night before bed. Very early days but things might be moving in the right...

Nobody has mentioned tpn yet... I meant to ask the doc today but forgot... Will ask tomorrow for sure. J is actually eating relatively well even if he is still losing weight. Thanks for all the good wishes!

J is still on 20 mg of pred. And the hourly over night poos have changed to him getting a 3 to 4 hour stretch of sleep so we are hopeful. He is still going at least hourly during the day but night time feels like there is improvement. I think they are reluctant to throw cyclosporine into the...

Hi all... Thanks for the responses. So we've been in hospital for a week now with J. He is going 20 odd times a day and losing weight. He is tapering from IV steroids as they were deemed not to be working. Things have moved very quickly and we are not yet seeing a lift from the remicade...

Thanks @Jo-mom ... I appreciate the sentiment. You just gotta keep going in these situations, one foot on front of the other.

Looks like steroids are not going to work... Infliximab starts Monday.

J started IV steroids on Wednesday night and he had a really bad night last night from midnight on. His blood sugar went low and he had apple juice and a couple of candies... This led to him being on the toilet pretty constantly during the night. I am despairing here that the steroids are not...

Thanks for all the responses... So J got admitted to hospital 2 days ago. The levels show humira available and no antibodies as yet. The docs have decided he needs IV steroids and we are managing more or less to keep his blood sugars under control. We just got to hope that the steroids kick...

A separate ethnic group living in a modern western country with one of the highest IBD rates in the world that are apparently protected from IBD. https://www.irishtimes.com/news/health/gut-microbes-linked-to-irish-travellers-confer-health-benefits-study-1.4297752 It'd be great to see some...

That is positive on O.. I hope that the improvement continues. J should get his levels back today... that will tell us something of where he was 2 weeks ago with Humira. He is flaring up again unfortunately... been feeling poorly the last couple of days and he needed to go 14 times yesterday...

J had his third weekly dose of Humira yesterday. Unfortunately, he is now going 8-10 times a day and seems to be going backwards. He was up at 3am last night as well for the first time in a whlie. The pred enema's don't seem to be giving the same level of control. He had a good 3 week period...

Thinking of you and O... I hope this next move brings you two much needed relief.

@Pilgrim thanks for the tip... Can you recall how long it took to see any improvement when your daughter started? We might end up switching to infliximab soon but want to make sure that the humira is not working...

Would be interested to hear from anyone who didn't think humira would work out for them at 9 weeks but ended up having some success...

He is doing ok on food and pain... really it is just the last couple of days after a week off the enemas that blood has come back and the waking at night has started again. He has gone from going a couple of times a day to 6-8. His general health is not too bad but he is going the wrong...

Just giving an update on J. So today is week 9 since the first dose of humira. J had 3 good weeks after taking the prednisolone enemas. He stopped 9 or 10 days ago. Unfortunately, he has started to slip back over the last three days. Just chatted to the IBD nurse and they feel at the hospital...

Fingers crossed @crohnsinct ... Are you seeing improvement yet?

Hi all Just to give you an update on J... He has had a positive week. After his last dose of humira, we started to see a big shift in his general health. Mostly his appetite, which has exploded. He has had much more energy as well. We even had a couple of bike rides this week. He was still up...