The emotional side of this disease

I don't have a bag yet. But personally, when I read the patient submissions on the Crohn's and Colitis UK facebook page, I feel almost excited to get one. They're almost always young beautiful people who talk about how their bags saved their lives and they're proud of it and are doing better than ever, and that makes me feel less scared. Of course what your son is feeling is perfectly natural, and as someone who is bagless I cannot comprehend it, but I'm just saying that seeing people in the same situation overcome the obstacles is something that has helped me. It's important he knows he's not alone. He is brave and he is a fighter and a blessing and this should be acknowledged.

After he understands this, it's important for him to then realise that this doesn't have to define him. Jobs/school/pets/volunteering are all great ways for him to prove his self-worth to himself. I'm sure he's an amazing kid, and he's so much more than his digestive system.

Tell him it could have been Crohn's and he could have wound up with a bag for the rest of his life instead of a few months.

It sounds like he is in bad shape, and of course there are different levels of depression, and so we can only guess at which level he is at, but do I like the idea of a pet for him if that's possible, perhaps you could surprise him with a puppy, as pets offer unconditional love that can be very helpful to people with depression, and having a pet could gently push him into more social contact as it will need walking.. If a dog is out of the question perhaps a cat? as there is something very soothing about the company of cats.

Oh the poor, poor thing :(

What a dreadful thing to have to cope with anyway, but teenagers have virtually no self-esteem as it is.

I can totally understand him not wanting to see his friends, he doesn't want them to see him differently, and he is ashamed of the bag.

I really disagree with the 'Fault in Our Stars' or 'Tell him he could have had Crohns' ideas. That will only make him angry that you are belittling his suffering. He has every right to be upset and angry after what he has gone through, and is still going through, it's a huge ordeal that many adults would struggle to cope with.

I totally agree with Guardian7, I think many of the replies in this thread are very insensitive.

Sorry if this offends you, but you're totally in the wrong to accuse him of self-pity. No wonder the poor boy cried. Self-pity is for people who don't deserve pity, for example, if he had a cold. He has a life-changing, incurable disease, and he is going through what many of us would class as the worst case scenario for someone who has UC. He absolutely deserves pity and sympathy. He needs love, sympathy and empathy now, and he will do for a long time. You cannot possibly expect him to be able to cope and deal with this yet. I'm sure he does understand that he could have died, but why should that mean he has to be grateful for the crappy deal he has been given?

Why on earth are you rushing him? He has many more awful things to go through, he is probably really frightened! He needs time and understanding to process this. You have no right to expect him to come to terms with this until his next 2 surgeries are complete, and he is physically healed. Even then not for a long time, I would give him at least a year. Yes counselling may help, but don't expect any results until he has been through everything, and had time to process it in his head, and put it behind him.

Him spending time with your dog would be a great idea. Animals don't judge you, they love you for what is inside, in a way that humans aren't really capable of. After my first hospitalisation, spending time with my horses helped me massively. It made me realise that I was still a person, because they only saw me as me, and treated me as 'Mummy', not a UC patient. It's hard to explain in words, I'm not really sure how to express it.

I was not being insensitive to my sons feelings when I mentioned the self pity. The Dr's have been stressing how important it is for him to start some mild exercise to build strength for the next surgery. I was telling him that he has this disease and we can't change that. What we can change is if it is going to control our lives. I have been down the self pity road with a different disease and it made things worse for me. We are heading to see his surgeon this morning and we will talk things over. Yesterday was as good of day we have had since Christmas Day. I am very grateful for that

Dizzy2002 said...
I really disagree with the 'Fault in Our Stars' or 'Tell him he could have had Crohns' ideas. That will only make him angry that you are belittling his suffering. He has every right to be upset and angry after what he has gone through, and is still going through, it's a huge ordeal that many adults would struggle to cope with.

Look, I know the lad is only 17 and I feel sorry for him. He has every right to be depressed and angry after what he's been through.

But I'm sick of people acting like IBD is so much more tragic in younger people than older ones. I lost my entire 30s to Crohn's disease, and I have an ileostomy which is irreversible. Would I rather have had a year of UC at the age of 17, followed by a year of having j-pouch surgery? Yes, especially as I wasn't exactly living the life of riley at 17 anyway!! Sorry if it offends anyone, but it's how I feel.

Guardian7-You're welcome, and I agree with you again.

Jcljag-I'm sorry but I respectfully disagree, in my opinion that was insensitive. You and your son are different people, and what has worked for you may not work for him.

I also think it is going to control his life, to some extent. It's not going to control your life in the same way, as it isn't your body, but he is your son, and as he lives with you, it will affect you in many ways. Not forever, but at least for now, and I think that you should let him grieve. It is healthier for him to let his feelings out and acknowledge his pain, that way he can begin to heal, rather than bottling things up and trying to 'get over it'. This is why I think counselling would help, as he can talk about his feelings and let out his anger, fear etc.

I also appreciate that you have had health problems of your own to deal with, but as you said yourself, it was a different disease. He will be experiencing issues that you didn't face. I don't want to offend anyone on here, but personally I am hugely ashamed of my UC. I can totally imagine your son feeling that way, as he is a teenager, and also has the added stigma of the bag to deal with, even if it is temporary.

I'm not trying to attack you, it's obvious that you love him and are doing your best. I'm just trying to represent your son's position. I know that I couldn't possibly know him the way that you do, but I have suffered depression and UC for years myself, and know how it feels.

I can imagine it must be difficult to get him to exercise when he is depressed. All you can do is try your best. Would it help if he could exercise at home? Perhaps you could get him a cheap exercise machine, or he could walk up and down the staircase? Obviously it would be best if he could take your dog for a walk, and get some fresh air, but he may not be up to it.

I wish you good luck with the surgeon, and I am very pleased to hear that your son had a good day yesterday.

NiceCupOfTea-I am very sorry for everything that you have had to go through, and are still going through. It must be awful, and I know that you have suffered a lot. You have every right to be angry about the cards you have been dealt. I'm not denying that you have it much worse, and I'm sorry if I offended you or upset you, it's just that knowing other people are in a worse situation will not make the boy feel better.

Jcljag's son might be one of the lucky ones, and might feel cured after surgery. He might never have digestive problems again after he is all healed. But many young people with this disease will have to deal with UC for most of their lives, which is why people feel sorry for them. They have had less disease-free years than older people. The teenage years are very difficult as it is, and teenagers do not have the mental or emotional resources to cope in the same way that an adult does.

Also many teenagers are bullied by their peers. The majority of adults have passed through that stage in their lives, and are generally treated better by their peers, than most teenagers are. I was diagnosed at 22, and was lucky enough to be treated with sympathy and respect by the people that I told. But I can imagine that if I had been diagnosed when still at school, I would have gotten a very different and extremely unpleasant reaction.

Hi juststud. No I wasn't saying that I know how Jcljag's son feels. I am lucky enough to have not been in his position. I was saying that I know how it feels to have UC and depression. Sorry if I was unclear.

JCJag, you do not have to apologize. I hope you have gained something out of this experience.

JC, we are a bunch of people with really bad stomach aches that make us really crazy and cranky!

;-) Too funny!

Wow!

Jcljag,

I feel your pain...
Seeing the dear ones going down day by day is the worst thing to deal with.
My DD was diagnosed during HS. The adjustments and accommodations all of us had to make was very stressful and painful. Slowly slowly we got used to the diagnosis and the new restrictive life style.
I appreciate you and your wife for being there for your son. He will value it and appreciate your caring when he gets back on with life.

For your son- as many said - give time, be consistent,let him vent out- even its anger, or emotional melt down. I know its easy to say than done- but when that happens remind yourself that its good to release his stress than holding inside.
Try your best to get caring friends spend time with him at home.That way slowly he can get back to his pace.
Let him take his own time to catch up. If workable give him the assurance that you both will be there for him until he is ready. At his age he may be worried about college and moving out.

As we all know- Nothing in this world is constant- things will get better -Your Patience,perseverance, positive attitude and empathy will definitely help your son to change his attitudes.

Prayers and wishes for better....