Advice please

advice please

hi all, i live in humberside n my 16 year old son has been poorly for 3 months our dr didnt take us seriously so i took him to the hospital, they were reluctant to admit him because of possible infection, they did! after doing various tests on him and found no sign of infection. he was in hospital for a week on a drip of steroids and a cocktail of drugs and lots of tests and a camera, the bowel specialist has said that he has ulcerative colitis or crohns at the minute hes on 19 pills a day! so if anyone can offer us some advice this would be appreciated. many thanks

ask the GI if he's going to do more tests to determine if your son has Crohn's or UC. Was an endoscopy done? What about a Prometheus blood test to determine if it's Crohn's?

Also ask what other treatment options are available such as Entocort once it's determined that he has Crohn's or Remicade, Humira, 6MP, Imuran, etc. Honestly, you'd have to ask the next course in what's going to be done in trying to get a definite diagnosis.

You can also ask if your son has any limitations when it comes to diet, exercise, school and ask for something for pain for him as he has that right to be made comfortable if he's hurting.

thanks for your response, hes waiting to see the bowel specialist again, hes had a colonoscopy and lots of bloods tests done and a biopsy. my son was on an elderly ward in the hospital because hes 16 and no longer in education, theyve treated him as an adult n every time i requested to see the specialist he was never available, so hopefully his out patients appointment should arrive this week, the dr stated it would take between 4-12 weeks before we have his results.

Hi
Look at what he eats, i know that the simplist thing like lettuce can upset me and some things i can only eat as a treat once a mth, it hard to start with but in 2006 they said they wanted to operate and i said no! and i looked at what i was eating and controlled everything making a mental note what upset me and what did not , it did not take long to work out and its only now in 2010 i have to have the op 4years on which i thing is good, i read the books of what to and what not too but they did not help every person is different ! But it will help x

hope this helps sandra

From what you have said that it seems that they have diagnosed IBD (inflammatory bowel disease) and its just a case of determining which one. The meds for both (UC and crohns) are very similar and i take it he's on steroids, probably predisonone, which should hopefully help him greatly.

Its not unusual for a diagnosis to be tricky, blood tests aren't always reliable and if the docs think he's on the appropriate treatment then thats what is important at this stage.

Hopefully they'll be able to clarify this but i reckon 4 to 12 weeks is quite long. Most hospitals have a dedicated IBD nurse assigned to the GI clinics, i think you should maybe try to get in touch with one of them, from my experience they are very helpful.

G

thank you sandra, hes seeing a dietician on the 23rd of this month but i thought that was because hes lost over 2 stone in weight not because he may not be able to eat some foods. This has come on so suddenly and so aggressive hes gone from a strapping 6.2 muscle rugby player to this ill looking 9 stone wafer thin lad. ive read quite a bit about bowel disease but most sites tell different stories. i hope everything gos well for you!

hi rossy, a ibd nurse was mentioned at the hospital but as yet hes not seen one.
jamies on
prednisolone 8 daily
mesalazine (asacol mr 800mg) 3 daily
thiamine 2 daily
vitamin b 4 daily
caleous 2 daily

Thats good, you could consider getting a contact number for the IBD nurse and give them a call. They are a fastrack to the consultant and your sons medical notes and may be able shed some light on what they are thinking at this stage and they can certainly speed appointment dates up.

Hope he gets better soon.

G

thanks rossy

Hi c1nd1 and :welcome:

I'm sorry you had to find yourself here but you have found a great place for support and info. You have already been given excellent advice so I will only reiterate that now is the time to get a firm diagnosis of CD or UC and then plan from there. Browse through the forums and if you have any questions don't hesitate to ask. As the parent of a child with IBD I would suggest you go on the offensive with this and as Rossy has suggested call the IBD nurse, don't wait for them to contact you. The same with the doctors, if you are concerned at all ring and speak to them, don't take no for an answer. You and your son have a right to be informed, there is nothing worse than waiting with no idea of what is happening. Please keep us posted on how things are going and good luck!

Welcome aboard,
Dusty

Welcome. Sorry to hear about your son but I'm glad to hear that he is on the right track to getting a diagnosis and getting treatment. I hope you stick around and get as much out of this forum as I do

Hi C1nd1, welcome!! I agree with all the advice you've received so far. I'd say make a nuisance of yourself. They shouldn't require 4-12 weeks to get test results. Good luck!!

Hey and welcome.
Nothing much more to add to the great advice already but wishing you lots of luck. Just make sure you get on the docs/nurses case!
xx

where from humberside dude? im from grimsby (dont like footy so u cant take the piss ) Docs at gy are good but very "clinical" the nurse there Jean is amazing, talks about your life in general rather than the illness, and personally i find i open up and talk more about anything to her. Shes a top star
im on 2x2 pentasa, 2 aza, and when i need it pred foam up the bum.

Great to hear from a dad here but it will be nice to hear from him as well. Im 27 and told my parents about the disease but they still dont really understand it. Only reason is because they dont have it. Very hard to explain how you feel great 1 day then crap the next. Still have trouble myself.
if you or your son wants a word and you're on fb you can find me at rygon101@hotmail.com

Hello c1nd1,

Just a quick hello and welcome to the Forum!!
You have already been given a lot of useful information
so I won't fill your head with anymore at the moment.

Just wanted to say welcome aboard.

Hugs~Nancy

Thank you all for your kind words and friendly welcome, its so nice to know that theres people who still care and can give support when you need it.
Rygon we live in Hull and im a dudette! im hoping jamie will come on here but at the moment i dont think hes really got his head round things yet!
Many thanks to you all!
cindy