Hello!

[Lisamumofmeg]

My mother died from Crohn’s complications when she was only 33 and I was only 3. I have been told about this disease all my life, but it was never something I worried about. I had my own children when I was very young, at age 21 I gave birthday to my daughter, who until recently has been beautiful, larger than life and always full of smiles and energy which is most unlike 16 year olds. She was always happy and seemed to see the best in everyone. In October I took her to A&e with what seemed to be an abscess around her back passage. I really expected them to lance it or give us some cream and send us home, but she seemed to be in so much pain I felt I had to get it checked out. That day was the start of what feels like one long, depressing nightmare. She was first seen by the paediatric consultant, he asked the surgeon to look at in preparation for draining. While they were discussing things amongst themselves I heard them mention IBD. Suddenly I thought of my mother. I asked if this abscess could be a sign of crohn’s. They confirmed that, that might well be and explanation and explained with my medical history they do not want to drain the abscess, as this could risk further complications. She was then admitted to a ward where she remained in agony for 10days as they tried to get the infection under control using antibiotics and morphine to control the pain. After 9 day the abscess disbursed by its self and the doctor then felt it was time to use an ultra sound to see how deep the abscess was in her skin and if there was any signs of a fistula. Luckily all looked good and they drained and packed the wound so it was able to heal. Since then, there seems to have been no end of test, endoscopies, colonoscopies, MRI’s blood and stools. She has also started to experience more intense and more worrying symptoms. Such as bleeding from her back passage, pain in the right hand side of her tummy, frequent headaches and tiredness.
She has with drawn from her friends and her social life and is generally very weepy. She is terrified she will die just like my mother.

Last week we had the diagnosis we were dreading and we were informed she has Crohn's affecting a relatively small section of her terminal ileum (6CM). She was immediately prescribed Modulen and is currently on Day 4. Its been tough few days trying to make her drink these shakes. But every day she accomplishes her full quota which is 2500ml its an achievement. fingers crossed this allows her to achieve remission that is long lasting.

Good luck to everyone else out there... x

 

[nogutsnoglory]

I'm sorry for all this illness has caused upon your family. I understand her fear and yours but dying as a result of crohn's or even it's complications is very rare. Does the disease cause havoc? Yes as you have witnessed but with the right treatment remission and a normal life is possible. I wish her a speedy recovery and peace of
mind.

 

[pink&green]

Hello Lisa and :welcome: sorry your daughter is having such a hard time sending :ghug:your way. There is a lot of support and advice on this forum. Make sure you check out the Subforums for parents and also for your teenage daughter.

 

[SarahBear]

Hey there!

First of all, it's very important for both you and your daughter to understand that Crohn's is not considered a fatal disease. There's a very small chance of that. Studies show that those with IBD actually have no higher chance of death than the general population - so it's really nothing to worry about. Since stress has a huge negative impact on overall health, especially in someone with IBD, it will make a huge difference to both of you if you can confront and deal with this fear.

Would it help her to join the forum and talk with others who have IBD? In her situation, I would feel very comforted by that. It's something to think about, at least. We'd love for her to join us.

Unfortunately, I have no experience with enteral nutrition. We do have an Enteral Nutrition section of the treatment forum, which you can find here. I see that you posted this in the General section of the forum as well. I'm going to go ahead and move that one into the Enteral Nutrition section for you, where you're more likely to get well-informed responses.

I hope things get better for both of you soon! :hug: