Mum with 14 year old son with Crohn's

[Clarej121]

At wits end as i feel powerless to help my son

My son was Diagnosed with Crohn's last November 2010, he has it throughout & was put on Modulen straight away. We were told 6 weeks which he had via NG tube because he couldn't stomach 2000mls a day. We actually did 8 weeks then introduced food in stages & slowly. Within a week pains & symptoms was back. Put on Pentasa 2g & Prednisolone which made it worse.
This went on for 2 months, colonoscopy & endoscopy repeated & so bad NG back in & another 8 weeks Modulen. Very hard on him as he loves his food & the whole social thing that comes with. Great as no pain but mentally started to hinder him, food intro didnt go well & tube back in after 2 weeks.
He is currently taking daily..
Currently recieving Infliximab.. Had 2, 3rd next wednesday 21st Sep
Pentasa 2g
Azathioprine 100mg
Omeprazole 40mg
multi vitamin
omega 3 fish oil capsule
As of this week Predfoam

NG out end of August as he couldn't go any longer without eating food.

He is in agony everytime he opens his bowels & i just don't know where to turn. I'm new to the forum & haven't spoken to anyone about this.. Most of my family & friends don't truly understand at all.
He has recently been prescribed Morphine for pain but even that doesn't help..

Is there any light at the end for my son & family

Clare

 

[Tesscorm]

I am so sorry to hear that your son has had so much trouble! It's hard, as a parent, to seem them suffer and not be able to stop it.

There are many people on this forum who will be able to give you lots of advice, many with much more experience than I have.

My son, 17 years, was diagnosed in May. He was also put on a formula diet, through NG tube for six weeks. So far, he has responded well and we haven't had to add medication (except for Nexium, an antacid). However, when he reintroduced foods, his treatment continued with the formula on a 'maintenance' level (and this is expected to continue for one year). He was on 2000ml of Tolerex (I believe it's the the same or very close to Modulen) per night and then while reintroducing food, his Tolerex was tapered down over 3-4 weeks until he reached his 'maintenance' level of 1000 ml per night, 5 nights per week.

Did your son discontinue the Modulen completely when he reintroduced food? Perhaps a combination of both food and formula might help him???

I'm sorry, I don't have any experience with the medications, just the formula...

Good luck!

 

[Clarej121]

Hi
Thank you so much for your reply, on the 3 occasions of being on modulen, once food introduced the crohn's would flare, infact after the 2nd time just being on Modulen made it worse.. Its all or nothing with my son, dont eat great no pain, eat & suffer.
Its lovely that your son has found a level with both, its the most awful thing watching them suffer. Unfortunetly auto immune is in 3 generations Husbands mum has Colitis, husband has Addison's, although we never knew this untill we had our children.. Husband only diagnosed 5 years ago & his mum too embarresed to say!!
My son has had pain for too long now & he needs some relief, he is going in for scopes again after his Infliximab infusion. So November, i bet he wakes up from theatre with ng tube in again for Modulen. He will go mad if so, knowing it only prolongs the inevitable for him.
Everything crossed for a cure hey, we are raising money for Crohn's research, so far raised £3000

Clare

 

[dannysmom]

Hi Clare,
I am sorry your son is suffering so much .. and it seems like every treatment is being tried. I do not have any suggestions, but I just wanted you to know that I really hope your son gets relief soon.

 

[xJillx]

Hi Clare and welcome! I am so sorry to hear about your son. Unfortunately, it sometimes can take trial and error to figure the right treatment plan. But it sounds like your doctors are on the ball and are really working hard to get him well.

I sure hope Infliximab starts to kick in soon and gets your son feeling better! Hang in there!

 

[Clarej121]

Hi Jill
Thank you for your message, i welled up today when i got an email showing people had replied on here.. i wish i joined sooner, felt all alone for nearly a year now! It's a long road isn't it, i know one day he will find some relief.
His pain has been so bad this week they are taking him in hospital on Monday to give him his 3rd Infliximab & monitor his pain for a few days. It's not right me giving him morphine everyday.
Possibly scoping him earlier than expected too, but i trust his consultants 100%, he is amazing.( even rights exam manuals for all the up & coming doctors.)

It's hard to believe i'm messaging you from all over the world.. Great to be part of this fab forum.

Huge thanks
Clare

 

[Tesscorm]

I really hope things start to improve for him! Sending lots of good wishes!!