My Story.

[SophieG1993]

I'm Sophie, I'm 18 and live in Burnley, Lancashire I was diagnosed with Crohn's when I was 10 after falling ill in Florida. I've had countless tests and quite a few treatments which have included hundreds of blood tests, barium X-rays, 3 colon/endoscopies, the liquid diet, steroids twice, 3 courses of Infliximab (which I actually became immune to) I'm now on Humira injections, 40mg, once every two weeks. They hurt like HELL and I've actually developed a fear of injecting myself, but I'm sure that can be overcome!

I've been told that I have a stricture
(a.k.a narrowing/scar tissue) in part of my bowel, this is what gives me pain if not controlled.

It's been a tough 8 years, I had a lot of time off high school and ended up having to go to a very small school for ill people, where I managed to get 7 GCSE's despite only going to school for 3 hours a day. I managed to make a new start at sixth form and did a full year, also coming out with half decent results. However, I became ill again in my second year and had to drop out.

I currently have a job at Halfords, 5 days a week, 3 hours a day. It's all I can manage really, as I get tired quite easily.

My hobbies include partying like the typical 18 year old, watching films, listening to music and meeting up with friends. I'm willing to talk to anyone, especially those in my area! Thanks for reading xxx

 

[Josh's mum]

Hi Sophie I'm in Bolton so not too far away from you. I don't have crohn's but my 14 yr old sons been diagnosed since March this year. Josh has missed most of school so far this year and it's heart warming to know just how much you've achieved despite missing so much school........ 7 GCSE's is fantastic!!!!

Janie xxxx

 

[SophieG1993]

Hi Sophie I'm in Bolton so not too far away from you. I don't have crohn's but my 14 yr old sons been diagnosed since March this year. Josh has missed most of school so far this year and it's heart warming to know just how much you've achieved despite missing so much school........ 7 GCSE's is fantastic!!!!

Janie xxxx

Aww thankyou so much for replying! How's he finding it? It is really hard to deal with at school, but support from parents, teachers and friends is what got me through it all! Qualifications and jobs are definitely acheivable for him in the future If I did it (a stupid blonde) then I'm sure anyone can! xxx

 

[Astra]

Hiya Sophie
and welcome,not so far from me too!

Sounds like you've a rough trot! Hope the Humira will be 'The One'
Lots of teens on here, we also have a Teens Only sub forum.
We have a Humira Club too! Lots of tips on how to inject such as using ice to numb the area.
Enjoy the forum!
lotsa luv
Joan xxx

 

[SophieG1993]

Hiya Sophie
and welcome,not so far from me too!

Sounds like you've a rough trot! Hope the Humira will be 'The One'
Lots of teens on here, we also have a Teens Only sub forum.
We have a Humira Club too! Lots of tips on how to inject such as using ice to numb the area.
Enjoy the forum!
lotsa luv
Joan xxx

Thanks Joan! I'll make sure I add you and look at the other advice forums! The Humira is working really well! I've been catching more bugs than usual, but nothing I can't handle Hopefully I can pluck up the courage to start injecting again soon xx

 

[Josh's mum]

He's struggling a lil bit at the moment Sophie thanks for asking......I think he's still trying to get his head around his diagnosis and cope with the tiredness side of things thats what causes most of his missed time at school and the fact his flare-up wont b*gger off!!!

Did you find yourself angry with life, parents , school at times? Josh gets down on life so easily and I'm struggling to lift his mood some days..........any suggestions of what helped you would be muchy appreciated!!

Janie xxxx

 

[SophieG1993]

He's struggling a lil bit at the moment Sophie thanks for asking......I think he's still trying to get his head around his diagnosis and cope with the tiredness side of things thats what causes most of his missed time at school and the fact his flare-up wont b*gger off!!!

Did you find yourself angry with life, parents , school at times? Josh gets down on life so easily and I'm struggling to lift his mood some days..........any suggestions of what helped you would be muchy appreciated!!

Janie xxxx

Don't worry, he will accept it all one day. He just needs to look at the bright side - there are much worse off people than him and there's plenty of medication and treatments around that can help! What treatment/medication is he on at the moment? It can take a while to find one that works, but it can be worth the wait! But trust me, the flare up will go away eventually and he just needs to look forward to that day really, whether it's in 2 months or a year!

To be honest, I was just a bit shocked, but I accepted it within days because I was so young and realised that it doesn't have a cure, I just had to deal with it, and somehow looked on the bright side of things! I had a very supportive mum who informed all my teachers of my illness and was in contact with IBD nurses at the hospital if she had any concerns. There is one thing I can suggest - rather than trying to cheer him up all the time, just give him time to himself more. It's just a normal teenage thing, mum's nag and it makes the situation worse. Maybe some time alone will help him come to terms with what's happened. He can talk to me sometime if he wants over Facebook or here? But obviously that's up to him. I rarely talk to people with Crohn's because I don't really feel the need to, but sometimes it's good to let it all out xxx

 

[Josh's mum]

I think he'd appreciate a chat thanks Sophie, you can give him the kick up the ass he needs to put his face straight & smile for once!!! I must admit I do nag him all the time about taking tablets, eating enough, toilet habits, how does feel just to name a few......I'm actually guilty off nagging full time thinking about it!! Will cut it down I promise ha! He's on omeprazole 40 mg, pentasa 1g, azathioprine 100mg daily at the moment. Which hospital are you being treated at? Josh is at Manchester Childrens and the IBD nurses are great xxxx

 

[xJillx]

Hi Sophie and welcome! You have been through a lot for your age, but you still have such a positive attitude. This is really important, as this disease can take its toll on you emotionally as well as physically. Keep looking at the bright side!

 

[scottmyster]

HI Sophie, welcome to forum , bye god you have achieved alot and overcome so many obstacles epecially been diagnosised at a young age. way to go. and i am glad your doing well. i have had it for 21 years now and off and on i struggle with it especially the fatigue part of it. it completely drains you. but, i try to fight it off as much as i can. i have had a recent flare up and i am on predisone and other ant-inflammatory drugs to hopefully calm it down again. This place you will find , it's like being part of one great family and a great world of knowledge. so, if you have any questions just ask and the forum will respond quite quickly.best wishes :rosette2:

scott

 

[guambelle]

This is a very good blog! I was diagnosed with mild Crohn's in my mid-30's (now 52), and for the most part, have survived on prednisone for flare-ups. Unfortunately, about 2 years ago, my the opening between my stomach & duodenum (very critical!) became affected by Crohn's. Under threat of a gastric bypass, I tried Humira--which didn't work, actually my inflammation levels shot UP!--and have been off/on Cimzia since last Fall. So far, pneumonia, then a sepsis infection/hospital stay (gained a nice blood clot for free)...it appears now that it may be the Cimzia is working on my disease but the rest of my body doesn't like it. I've had a sudden onset of extreme fatigue & extreme nausea rather late in the game--not sure why--and have dropped from 139 to 123 in a little over a month. NOT FUN. I have a roster of tests and my gastro dr is trying to refer me to Cedars Sinai in LA. I'm still taking prednisone and as of this past weekend, I upped it from 10mg to 15mg. Sad but what can you do? I try to stay optimistic, a sense of humor is important when a garden hose is up your privates...but I like the camaraderie of the patient population, and how everyone share tips. I learn more from other patients than from my own doctors! Now...why is THAT? I always tell people: do your research before you try anything new. Talk to other patients, like everyone does here. I find doctors unwilling to divulge all the details all the time, so you have to be your own best advocate. When you can sit up & see straight, that is.

Hope everyone has a great day today. Or tomorrow...or the next....
Guambelle

 

[SophieG1993]

I think he'd appreciate a chat thanks Sophie, you can give him the kick up the ass he needs to put his face straight & smile for once!!! I must admit I do nag him all the time about taking tablets, eating enough, toilet habits, how does feel just to name a few......I'm actually guilty off nagging full time thinking about it!! Will cut it down I promise ha! He's on omeprazole 40 mg, pentasa 1g, azathioprine 100mg daily at the moment. Which hospital are you being treated at? Josh is at Manchester Childrens and the IBD nurses are great xxxx

Has he got Facebook? Don't worry, my mum's always nagging me even though I'm technically an adult now! She's always forcing me to drink, go to bed earlier and she always has to remind me to have my tablets! I was on Azathioprine for years! And when I had flare ups, I was put on Pentasa too. But once I started my injections, they said I didn't need to take Crohn's-related tablets anymore I'm just on multivitamins and CalciChew tablets for Vitamin D deficiency at the moment. It makes a nice change not to be having 12 tablets a day! I've found that Codeine is actually a really good painkiller, but it can be quite addictive. If I have any twinges of stomach ache now, I just take Co-Codamol I used to be at Manchester Children's Hospital aswell, until I turned 18. I'm now at Manchester Royal Infirmary under Doctor Campbell, who's REALLY helpful and takes action if there's any little problem. The IBD nurses there are really good as well xxx

 

[no :]

Sophie! As long as I've had you on Facebook (it's Jenny Shimmin btw) I had no idea that your crohn's was still plodding on.
I'm looking at probably starting remicade or humira soon. Think I'm starting with a stricture and fistula! Gah! Any advice on either drug? Things like side effects worry me! I'm at hope in salford at the moment who are amazing! (heard bad things about the MRI so got referred elsewhere) but I live in Bury! Apparently the PCT makes the choice on which med they're willing to pay for!
Josh's mum... Sorry to read things are tough at the moment I updated my story today on the forum, but briefly I was diagnosed when I was 12. Missed probably a year of school in total and ended up with an ileostomy in year ten! School were very supportive (I went to the derby high in bury) and I managed to get my 13.5 GCSEs, did my A levels at holy cross in bury and have just completed a 3 year degree training to be a dental hygienist and therapist
It's a horrible time but it does get easier, like Sophie said, you just kinda accept it when you're so young! It's sort of "oh well better just get on with it". I know it's probably had more of a psychological impact on my parents who still can't deal with talking about my emergency surgery. Bless them every teenager is short with their parents at somepoint it's normal. I was never really a moody teenager but it used to drive me mad When I was asked "how're you feeling" ALL the time!
It does get easier. And isn't always bad. I'm a town away from you guys and would be more than happy to meet up for a brew or lunch one day if you or Josh fancy a chat if not feel free to add me on Facebook!

 

[SophieG1993]

Sophie! As long as I've had you on Facebook (it's Jenny Shimmin btw) I had no idea that your crohn's was still plodding on.
I'm looking at probably starting remicade or humira soon. Think I'm starting with a stricture and fistula! Gah! Any advice on either drug? Things like side effects worry me! I'm at hope in salford at the moment who are amazing! (heard bad things about the MRI so got referred elsewhere) but I live in Bury! Apparently the PCT makes the choice on which med they're willing to pay for!
Josh's mum... Sorry to read things are tough at the moment I updated my story today on the forum, but briefly I was diagnosed when I was 12. Missed probably a year of school in total and ended up with an ileostomy in year ten! School were very supportive (I went to the derby high in bury) and I managed to get my 13.5 GCSEs, did my A levels at holy cross in bury and have just completed a 3 year degree training to be a dental hygienist and therapist
It's a horrible time but it does get easier, like Sophie said, you just kinda accept it when you're so young! It's sort of "oh well better just get on with it". I know it's probably had more of a psychological impact on my parents who still can't deal with talking about my emergency surgery. Bless them every teenager is short with their parents at somepoint it's normal. I was never really a moody teenager but it used to drive me mad When I was asked "how're you feeling" ALL the time!
It does get easier. And isn't always bad. I'm a town away from you guys and would be more than happy to meet up for a brew or lunch one day if you or Josh fancy a chat if not feel free to add me on Facebook!

Oh hiya Jenny! I have no idea what remicade is, but Humira really does work for me. I haven't had an injection in about 6-7 weeks though, so my abdominal pain is slowly creeping back. I've developed a fear of having it done for some reason, even though I used to be able to do it fine. Plus, when the drug was being explained to me by a nurse, she kinda played down how much it actually hurts. I cried the first time I had it done :/ Hopefully I'll be able to have another one soon, probably gonna have to book an appointment with a nurse to do it for me! xxx

 

[haley1991]

Hi Sophie, I know this is an old post so not sure you'll get it.. & kind of a weird reply.. but I just had to reply with you being from Burnley! I live in Clitheroe but my boyfriend is from/lives in Burnley! I've just been diagnosed with Crohns! Not on any meds yet, See the surgeon next Monday so still trying to get my head around it atm!
Who knows I may see you out sometime!
xxx

 

[robbo87]

Hi Sophie welcome to the forum! quite a few of us from the north west on ere!