Teenagers dealing with ANGER

[Hummingbird]

My son was diagnosed with auto-immune liver disease and sclerosing cholangitis when he was 10 years old. Up until he was 15-16years this remained reasonably managed with medication but then he started to experience portal hypertension. He was in hospital a lot due to the banding programme not working and had a stent fitted in 2012. This has relieved the portal hypertension and my son has physically been as well as he can be........ However emotionally and psychologically he has internalised his feelings and does not like to think about his chronic illness. He is transitioning into young adulthood at 17 years old now and feels angry he is not the same as every one else. His temper and ability to control it is becoming harder and I wondered what other people have experienced or have any coping suggestions please? He refuses to talk with a counsellor or support worker all help greatly appreciated!

[jenniwren]

Hello,

I was diagnosed with AIH at the age of 13 and since then have also developed portal hypertension and a number of other side effects. I too had difficult times. I would not take my medication and tell everyone that I had and ended up very unwell a number of times. I didn't want to see a counsellor at that age either, I just wanted to be normal. I am now 27 and there are still times when I struggle with AIH. It is a difficult condition to live with. If you think it might help, I am happy to answer any questions your son has, or just be there as someone who has experience of AIH. He might prefer being able to talk to someone who has experience or he might not want to. Either way, I am happy for you to message me

Jenni

[Hummingbird in reply to jenniwren]

Ah thank you Jenni, that is really helpful and considerate. Can I ask what helps you? I think it would be great for him to know he is not alone but it is getting him to talk to some one so I will have a think about this. Thank you

[jenniwren in reply to Hummingbird]

hi Hummingbird,

I think one of the most important things I have learned is that, whilst my friends will never fully understand what I go through on a daily basis, or the difficulties thatI face that they don't have to worry about, they are still there to listen and can provide support. I have also learned that talking to others is not a sign of weakness, nor do real friends object to listening to me grumble.

I've tried to lead as normal a life as possible and as a teen, my parents let that happen- that meant letting me go to house parties etc. and trusting me not to drink. I know this was really hard for them. They also encouraged me to keep active (before I was diagnosed I was part of a regional swim team, a hiking club and took dance and theatre classes!). Maybe it would help your son to do something where he can get involved without being singled out because of the liver disease- music is a really good outlet and is something I have always turned to in one way or another at high and low points.

Recently, things have been pretty tough and I have learned that asking for help is also not a sign of weakness. I am going to a 'long term health' support group, and hoping to take CBT and Wellness at some point. I am also trying to help the british liver trust bring together a liver support group in my area.

There's quite a lot there to think about and that's barely scratching the surface! please do keep in touch if you need anything else!

Jenni

[LizNatt]

Hi hummingbird, my little boy was diagnosed age 9 last year with ulcerative colitis and primary sclerosing colongitis we thought he had it under control however are having to return to hospital to be admitted again this week it must also be really hard for you too trying to help your son deal with his emotions. I hope you find the answers you need.

[Hummingbird in reply to LizNatt]

Ah thank you and my older son has ulcerative colitis and he has learned to manage this quite well. I hope your son is out of hospital very soon

[Sleaford]

Hi, my son was diagnosed with the same as yours last October, he was 16 in December, currently his condition is being managed with medication. He gets very depressed when we mentioned his illness and like yours does not want to talk about it. When we have hospital appointments it really upsets him and I feel so guilty as I do blame myself in a way for his illness, after all I did bring him into this world! Every time we suggest he talks to someone he won't. Clearly your son has been through a lot with the ph and subsequent stent, and I really feel for you all. Our son often states he just wants to be normal and hates his school being informed of medical appointments.

I think a lot is to do with age and the transition into adulthood not that it makes things any easier to live with. I wish my son had a friend with the same condition as maybe it would relieve some of worries/stress he is clearly bottling up inside, assuming they talked! Im sorry I have no real answer to your question but you are not alone, I think boys just don't want to open up. I do hope your sons temper will subside soon.

[Hummingbird]

Ah I also felt guilty but because I had not recognised earlier that my son was not quite right but it is so hard to diagnose a liver problem. I am at the moment in the process of trying to find some online counselling as I think boys may feel a little more receptive to this and I will keep you posted. I know CLDF have different events on but trying to get my son to go is difficult. They have residential's so maybe your son would be interested in going? Do you go to the Birmingham hospital? It would be good if they had a chance to meet one day as they are similar in age too who knows! Thank you for your reply and I am going to see if complimentary therapy will help too like massage. I will keep you posted of any break through's

[Sleaford in reply to Hummingbird]

Dear Hummingbird, I had taken my son to the doctors several times, for one half years before he was diagnosed. I think they thought I was an overtop parent, it was only when one doctor decided to run a liver function blood test they realised the problem, so you shouldn't feel guilty about not picking it up as even my doctors couldn't. My son thought I was over reacting to his weight loss, and was not happy that I kept taking him to the GP, and that's putting it mildly. I have already approached him with the CLDF residential idea - completely a no go, I think the thought of going makes his illness more apparent and I think he would rather ignore it 99% of the time (1% time taking meds!) Strange thing is he wears the CLDF yellow wrist band to school every day! It would be lovely for them to meet one day but sadly he is under Kings in London and we live in Kent, I assume you are somewhere near Birmingham. I don't suppose you son is into xbox as mine plays over the internet sometimes and that could be a way of getting them talking. Good luck with complimentary therapy, I think you could do with a massage too. Keep in touch and I am always happy to chat x