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Hello to every one !

Hi,
Really pleased to find this forum, i think is very helpful to IBD and relevant diseases.
My son has been diagnosed three month a go with Chron"s , he is 19 and never been to a hospital before.
It started with anal fistula , first they thought was nothing serious but soon after colonoscopy was certain that is Crohn's .he lost about 18 kg of his weight in two month .
At that moment he was in Greece for summer holidays but we all live in UK so he returned soonest he was out of hospital. (one month) This happened in September, we are in November now and we have the first appointment with the hospital in January . Long way to go ! But this is NHS , so there is nothing we can do.
We went to see a GP because his bones and joints was hurting really bad, suddenly he couldn't get off the bed one morning. The GP prescribe him OCTASA three times a day and a pain killer with paracetamol. The pain was gone within days, and he stooped having diarrhea, but now another problem show up. he is got some spots on his body , went again to the GP and he said is from Crohn's , is called Erythema nodosum. He prescribed steroids 6 tablets a day for 5 days.
As we don't really knowwhat is going on, and we are new to this disease, My first question is that " he is having a flare now?" The GP has restricted time with one patient only 10 minutes.
I read a lot on line about this disease and I am coming across articles with natural remedies, to be honest i trust more the nature rather than doctors and drugs . The problem is right now that i don't know where to start from. I already bought him Manuka Honey, and I just order some CBD OIL high concentrate, and I read here about turmeric.also about oregano oil.
I want to help him but not sure how to do it and where to start from.I
If he is having a flare or not or what we should expect from the hospital appointment I really don't know. I am trying to give him only chicken, fish, rice , pasta , potatoes, some time some mince , it look like he can eat so far , he doesn't have any pain on his stomach, he is taking that OCTASA tablets three times a day , and now the steroids for 5 days.
I will be very grateful if I can get some advise, I am trying to read all posts in here but they are so many, and every case i can see that is different .
For us is very hard to know that he was healthy all his life and suddenly he is got a life time disease, everything is up side down, his career, his studies. He was going to become an engineer , we have been advised that he should think of something lighter, as will be very hard to keep a job like that.
Please any advise will be very helpful, Thank you very much for reading my post and please excuse my English ,
I hope every one have a nice Christmas and God bless you all !
 

DJW

Forum Monitor
Hi and welcome.
Sorry about your sons diagnosis.

My first suggestion is to get a referral to a gastroenterologist. Crohn's can be tricky and really should be handled by a specialist.

The doctor is working to get him into remission but one remission is achieved he needs follow up care. Crohn's can silently simmer with no symptoms while causing damage to the intestine.

Has he had scopes and biopsies to determine location, severity, ect?

Hope he feels better soon. Sending you both my support.
 
Thank you for replay.
We are still waiting for the biopsy, next week we should have it, we have the colonoscopy images and magnetic scan pic, the appointment in January is with the gastroenterology so we will ask everything, I am still thinking that is a bad dream and we wake up ! I never knew about this before , never heard and here it is ! Thanks again !
 

DJW

Forum Monitor
I understand. It takes time to come to terms with this psychologically.
It does get better. And life goes on.
 
You might want to ask about a fecsl calprotectin. You also might want to keep a food diary to try to determine what foods he is safe with. By the way, the fecal calprotectin will measure the amount of inflammation. God bless you and Merry Christmas also.
 

my little penguin

Moderator
Staff member
You really need a Gi and unfortunately most of crohns needs meds to be effective .
Once you hit remission which he isn't near yet then things tend to calm down and you can move on with life
I wouldnt change careers
If he wants to be an engineer let him
Just realize natural can be used to help things but you still need a true med to treat it.
Sorry you have to wait so long to see a Gi even though he is dx
Untreated crohns can get ugly fast
He currently is untreated and high fecal indicates inflammation which is a flare
Fistulas/joint pain etc all signs of a flare

The steriods will help but after 5 days he may seem worse since you won't have any meds keeping his inflammation down

EEN nutrition works the same as steriods but less side effects

Formula only no food for six to eight weeks - Modulen is in the UK ask your GP about it

There is also the partial en with crohns exclusive diet
50% formula with a list of exclusive foods
Ds does this in addition to drugs
http://www.crohnsforum.com/showthread.php?t=71686

In addition we have a parents group section
Lots of parents of over 18 kids still hang out there
http://www.crohnsforum.com/forumdisplay.php?f=49

Join us
Hugs
First year is the hardest
Ds was dx at age 7
And Is now 12
 
Because of the joint pain, would you have access to a rheumatologist? Right now, you should start with a gsstroentologist.
 
he is taking octasa for now from the gp, he is going to have another test tomorrow after one month from the previous, so we just have to wait and see
Thank you every one for replaying , Merry Christmas to all !
 
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