Aunt looking to support teen newly diag w/CD

[esmall65]

Hi All!

I'm not a complete newcomer to chronic GI ailments (my sweetie has IBS) but my fave nephew's recent diagnosis with Crohn's has kicked me into Learning Mode.

He has just missed three weeks of school, with two hospitalizations in the past two months, and a colonoscopy and endoscopy revealed that he has Crohn's - I'm not sure which specific areas are affected.

He is on mesalazine (Asacol), Famotidine (acid reducer), and Prednisolone (steroid - short-term).

He also has epilepsy, so I'm wondering about drug interactions, etc, and reading Toney Allman's book on CD just to get myself up to speed.

His Mom reports that he is a bit overwhelmed with info, so I'm trying to find other folks to talk with about what I'm learning - a place where I can worry appropriately!

I'm old - well, 48 -, and would love to hear from teens about your experiences - what do you wish older folk would do to support you? What shouldn't we do?

Thanks for being here - seems like a great forum!

E.

 

[valleysangel92]

Hello!

First off, you sound like an awesome aunty! I hope I would be as supportive of my nephews and niece in a similar situation . My extended family really don't have that much to do with me or my illness, so kudos to you.

Try to find out where his disease is located if you can, this can make a big difference to the treatments recommended..

The mesalazine drugs are the most gentle ones that are used to treat crohns , unlike other medications they are topical and only treat surface inflammation and so they are used for mild cases or in conjunction with other medications (including steroids) I think Asacol is usually used for crohns in the colon but I'm not 100% sure on that.

I am 21 now. But I had symptoms at 15 and was diagnosed at 19 . I can recall the overwhelmed feeling, it's hard for anyone to get their head around, so just offer him a shoulder if he needs someone to have a bit of a moan to, let him know that your there for him. Also, I would say to keep things as normal as possible, I know it might sound obvious , but my family treat me like I'm still a small child at times, as they worry about me suddenly getting sick, I know it's because they love me and I've been through a fair bit, but it's nice when people treat you like just a normal person.
Try to help him keep in contact with friends (maybe offer a place to hang out etc if he's not up to going out) and let him be as normal a teen as possible ( obviously with less junk food etc) .

Let him know you're proud of him if he's remembering to take his meds or admitted a horrid symptom , or if he's just getting on with things and being brave. This is really important I think.

Show him this forum, and show him the success stories so that he can see there's a better time to come, and that there are others going through the same.

You are welcome to inbox me if you would like to, or you can get him to as well

 

[SarahBear]

Welcome to the forum! I agree with Nicola - it is awesome that you're here and so dedicated to supporting your nephew!

First off, encourage your nephew to join the forum (if his parents allow it)! It's a great place for advice and support. Dealing with Crohn's as a teen can be rough, and many of us here have gone through it as well, and many more currently are.

Nicola's run-down on his medications is correct. I suggest you have your nephew or his parents contact the pharmacist about drug interactions, as they're better informed on the subject than doctors. I know Rite Aid pharmacies have computer systems that tell them if any of the patient's medications react negatively together (all chain pharmacies probably do as well, but that's the only one I know for sure). As long as he keeps all doctors he sees informed as to what medications he's taking, there shouldn't be any issues.

I'm 22, was diagnosed at 16, and started showing symptoms at 8. It's very difficult to deal with at any age, but I did get particularly overwhelmed after my diagnosis as well. The steroids definitely contributed to that in my case.

You're both more than welcome to contact me any time, as well.

 

[Essieluv]

You rock! I wish my aunts were like this when I was first diagnosed. I got diagnosed when I was sixteen, and spent a month in the hospital. I think the thing that I wanted people to understand was that, even though I was sick, I was still the same person. And I was also still a teenager, and wanted to do things that normal teens did. I still wanted to go to movies and the mall, but it was a lot harder. I needed people to help me, and that was hard to accept. I think you need to just focus on letting your nephew keep his dignity (this is big with Crohn's because doctors steal our dignity away). And ask him what he wants, even just in little things. This is important because we are so often forced into things, such as medications and procedures, that we DON'T want.

 

[pink&green]

Hello and :welcome: you definitely come to right place lots of support, advice and information.