16 and recently diagnosed

[Ben.hart]

Hi everyone. My name is Ben and I'm 16. I was diagnosed with Crohns at the beginning of October 2012 and have been on prednisolone for the past three weeks and just started azathioprine as well. Still a bit overwhelmed by everything but I'm glad at least that's its controllable. Feeling quite bad at the moment with bad stomach aches etc but trying to get through it and miss a little school as possible. (Important GCSE year).

Glad I've found this site as I can talk to other people who feel the same as me and maybe help them out too. Most people in my day to day life really don't understand what I'm going through which gets to me. Hopefully this site can help. Thanks in advance

 

[Angrybird]

Hello Ben and welcome to the forum

What dose of the pred are you on? Have you noticed any improvement on it? Have yo been given a calcium supplement to take with this? Are you due to see you doc again soon to see how things are going? The Aza can take up to 3 months to kick in so you may not feel the benifit of this just yet, I should think you are on weekly/two weekly blood tests for this at the moment?

I am glad you have decided to join, there is a lot of helpful info and support here for you.

AB
xx

 

[Ben.hart]

I was on 40mg a day pred but this had gone done 5mg every week ad I'm now on 25mg. It did initially help but now not so much. I'm on calichew as well which is just a calcium and vitamin D supplement. Seeing the specialist again soon and only started azathioprine about 3 days ago. Hate the blood tests but I guess they are inevitable. One question, I know smoking affects crohns but to what extent? I absolutely hate the whole idea of it but I've only started feeling bad again since I sat next to two girls smoking while watching racing at ascot. How badly can passive smoking affect you? Really appreciate all the support on this forum as well

 

[Ben.hart]

I was on 40mg a day pred but this had gone done 5mg every week ad I'm now on 25mg. It did initially help but now not so much. I'm on calichew as well which is just a calcium and vitamin D supplement. Seeing the specialist again soon and only started azathioprine about 3 days ago. Hate the blood tests but I guess they are inevitable. One question, I know smoking affects crohns but to what extent? I absolutely hate the whole idea of it but I've only started feeling bad again since I sat next to two girls smoking while watching racing at ascot. How badly can passive smoking affect you? Really appreciate all the support on this forum as well

 

[SarahBear]

Hi, Ben! Welcome to the forum.

Just wanted to say you'll get used to the frequent blood tests. For me, it was a lot easier to have it done often because I didn't worry about it. Just close your eyes and it'll be over before you know it.

I don't know that second-hand smoke could have that much of an effect on your health, to be honest. If it were someone in your home and you breathed in daily, possibly - but since you just sat next to them for a little while, it probably had nothing to do with it. Sometimes flare-ups come out of nowhere. It's also possible that there's another contributing factor somewhere that you aren't aware of.

 

[Angrybird]

Are you able to get in contact with your GI or an IBD nurse at the hospital? It could be the pred dose needs to be raised a bit and then they taper it down more slowly and perhaps wait for the the Aza to have a bit more time to kick in.

 

[Tesscorm]

Hi Ben,

Glad you found this forum - there's tons of information and lots of members to offer you advice and support!

My son was diagnosed in May 2011, he was 16 at the time. I don't have any experience with steroids but was going to suggest the same as AB - it seems that some people must slow down the taper when symptoms begin to return. My son's treatment to induce remission was enteral nutrition (EN). If you have problems with the pred inducing remission, do consider EN!! Don't know if your GI mentioned it but it's success is comparable to steroids and it has no side effects. However (big HOWEVER ), it's not an easy treatment - it requires that you replace all food with the nutritional formula for approx. 6 weeks. It can be used together with medications (ie Aza). There's a subforum for EN under the Treatment section and here's a link to another thread that has lots of info on EN http://www.crohnsforum.com/showthread.php?t=36345

Also, wanted to say, once you get your flare and symptoms under control, all should go back to normal! Once my son achieved remission, he was back to school (and exams ), back to hockey, regained all his lost weight, etc. I hope you're able to get there soon!!!

Good luck and let us know how things are going!

:ghug:

 

[AckMac]

Hey Ben! Nice to meet you.

I hope you feel better soon. I know it feels like it's not going to get better, but it will. You're going to be ok.

 

[FullM3lt]

Hang in there, Ben. I was diagnosed at a young age as well and it was very overwhelming. You will get used to the blood tests quickly, I'll tell you that from experience. :thumleft:

I didn't get my Pancolitis under control until I saw a naturopath...that was almost 7 years after my diagnosis. I know some people aren't believers in natural herbs but it did me a LOT of good. Just my two cents.

Hope you can find some comfort soon....We all know how big of a toll these diseases can take on the physical and mental aspect of life. Good luck and we're all here for you.

 

[Ben.hart]

Thanks for all the support everyone. My mum is a keen supporter of homeopathy and would like to explore herbal options but my specialist isn't too keen. Any good remedies that have helped you out?

 

[FullM3lt]

Thanks for all the support everyone. My mum is a keen supporter of homeopathy and would like to explore herbal options but my specialist isn't too keen. Any good remedies that have helped you out?

Don't want to cause controversy, but high cbd cannabis tincture has helped me greatly over the years. I was in full remission for 4 years and I stopped taking it for a month recently. Guess what? I flared up. I'm back on it now. Still flaring up but it's only a minor flare...hoping for it to dissipate soon.

I know it isn't legal or available in many states and you are 16...(I didn't start the tincture till I was 19) but it has really helped me out a lot. Probiotics have also helped me out a lot.

edit: I see you're in the UK...so my advice isn't much help unless you can get a doctor to prescribe sativex

 

[grannyslippers]

Hi Ben - my son was diagnosed with crohns when he was 14 and cfs/me at 15. He is now 21 and studying Archaeology at York Uni. I know GCSE's are a worry but there is help out there if you find yourself struggling as the time approaches. His crohns settled down after pred but his exhaustion from the cfs/me was so bad he was advised to leave school and rest in bed avoiding all stress, both physical and mental for as long as it took to recover. The LEA arranged for him to have home tutoring and he took his gcse's at home in our kitchen. He was then housebound for three years before feeling well enough to go to college where he took an access to higher education course. He has recently had another crohns flare and has started on Humira. The Uni are being very understanding and allowing him extensions for his coursework etc when he needs it. The AYME website is for young people with cfs/me but has some very useful help sheets regarding education. I am sure the pred will settle the crohns before your exams but I am a 'pepare for the worst and hope for the best sort of person'. That was a long winded way of saying if you find yourself getting stressed and tired ask for help, please don't try to carry on regardless - help is out there. You sound very articulate and sensible for your age and I am sure you have a bright future in front of you. All the best and take care of yourself.