In hospital again

[CDJ]

Well, that's Josh in hospital again. Flare up has got worse as the week has gone on and he was admitted today. His bloods still show raised levels of inflammation and he has lost 1.5kg in weight. They are monitoring overnight and then possibly putting on iv steriods tomorrow.

I sometimes feel like I am hitting my head against a brick wall as it takes so long for his doctors to take it seriously because he never looks like a "typical" crohns patient so they tend to put his symptoms down to something else like a sickness bug. I worry that things will get left again as they did last year. No one took it seriously until he had lost 16kg and could hardly move:thumbdown: and I can see this happening again.

 

[SupportiveMom]

Oh poor Josh & poor you! I hope you can stay away from the iv steroids! Keep advocating. Someone is bound to listen. I hope they listen very soon. Is there room to up a med he is on to hopefully starve off the flare? Big hugs to you both.

 

[Sascot]

Poor boy. Just keep reminding them he doesn't have typical symptoms. My son usually doesn't either, it does make it harder. Hope they can help him now

 

[AZMOM]

Gotta trust the mom.........seriously. We know!!!

Hugs and wishes for a plan and speedy improvement!

J.

 

[DJW]

Sending you and Josh my support. I hope he feels better soon.

 

[sadjourney]

Are you ready for help?

 

[my little penguin]

Big hugs
So true mom knows best .
Hope they get a good plan together for your DS .

 

[CDJ]

We are now home again. We have to wait for stool tests. I did hand these into GP earlier this week, but somehow between there and the hospital they got lost!! So these need to be done again.
Josh has been put onto the antibiotic metronidazole [ flagyl ] as the doctor says this has been giving good results and avoiding steriods for now.

He is going to have to have an MRI on his small bowel to see if the crohns is spreading further [ it is already in his small bowel, but want to see if it is any further in there ], also being booked for endoscopies. They seem to think the the azathioprine has probably stopped working which is causing this flare. Until they get all results back nothing will be done, but they are talking of him going onto inflixamab.

I think that I made myself very vocal yesterday on their handling of the whole process and told them they need to start remembering that Josh has crohns disease which they do seem to forget when he doesn't present typically. At least we are going forward slightly, just hope things don't take too long and we get some answers soon.

 

[my little penguin]

Glad they are at least doing the imaging /scopes
Hope you get in quickly .
Remicade was a miracle for DS .
The results were night and day compared to 6-mp.

 

[Sascot]

Good luck for all the tests. If they don't get organised quickly just keep nagging. It is sometimes the only way to get things quicker on the NHS. If you can get a secretary on your side and to remember you, they try harder to push things through

 

[Pilgrim]

It is terrible when Crohn's disease is right there, on the chart no less, and your kid doesn't "look too sick". Sending my support your way.

 

[positivemum]

Just to offer my support.

Such a minefield.

My DS looks like he flaring. Bloods done today but inflamatory markers do come back normal even if he doesn't feel so good. hsve just put a call into IBD nurses with symptoms

Good luck

 

[SupportiveMom]

I am sure Josh is happy to be home. Can they up his Aza? Remicade isn't too bad. A bit of scheduling planning, but if he goes that way I am sure he will adapt quickly and he can go back to being the smiling boy he was when he was here during the summer.

positivemum - I lost count of how many times the markers come back normal for my kid. I have been blessed with docs that understand that is not the only way to show what is going on. If I waited for my kids inflamation markers to spike enough to cause alarm she would be a wafer and she would be barely existing. Trust your instinct and push forward.

 

[SupportiveMom]

How is Josh doing? Any change?

 

[CDJ]

Hi, supportivemom. Josh is still having the same symptoms despite the antibiotics. He has now lost 2kg, so going down steadily. We seem no further forward. Still waiting test results. We were told they can't up the aza anymore due to his wait. I think he is on the highest mg for that already. We are also still waiting for an MRI scan.

I had a letter this morning for his clinic appointment which is for a month away. I have emailed the IBD dept to say I am concerened that his symptoms are no better and feel that he should be seen sooner. Still waiting for a reply! No one, apart from me and Josh seem to be in a hurry.

How is D doing now?

 

[SupportiveMom]

Ugh I hate that! Waiting a month, stinks....
D is starting to slide faster. We are hoping to regulate her fast but the antibiotics are making it difficult. Down 6 lbs in 5 days. It is the dreaded "Nothing stays in during the morning, race to get calories in during the afternoon/evening all while pooping 10x a day" routine. It is a routine we know way too well. Going to try to tweak pill times again in hopes to kill nausea...

 

[Catherine]

Have they tested the aza levels? They maybe able to up the dose aza if levels are low.

 

[SupportiveMom]

Aza has been tested in August. We need to go up on Aza slightly but we are changing too many things at the same time so we are worried we won't know enough if that helps/hurts. She has gone from a change in antiTNF, dropping 2 pills and adding 14 in 45 days. A lot of change is really tough. The plan is to revisit Aza level after this new treatment settles or after surgery.

 

[sadjourney]

Are you serious? I don't understand this site anymore. I post THE CURE for IBD and it seems like no one sees it. I don't get it. Why are people deluding themselves and using all that toxic medication? Why not just heal your intestines like I did?