My Story: A 17 year old with Crohn's Disease

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ev088u

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Hi all :)

im jess, i got diagnosed with CD when i was 13, since then alot has happened,
i've been in and out of hospital with absess' (size of large oranges) in my small intestine, a fistula started as a absess in my bellybutton, grew and then poped in the emergancy waiting room, it drained for 2 years, before i decided to have my operation. The operation removed 3kg of intestine, 2 absess' and they picked the fistula trackt of my abdomanal wall; Re grafted my bellybutton and stiched me all up. The operation was ment to take 2 hours, it did end up taking 4.5hours, as when they opened me up, they couldnt beleve i was still walking. 2 Years on, and i've been on Azathioprine ever since. I recently went back to my specialist, had multiple bloodtests, followed by an MRI, which they then dicovered i have 2 striches, each 5cm in length, and a streched intestine about 10-15cm from where i had my last surgery. I am now approaching my 18th birthday and my health is begining to worry the doctors again.

What i want to know is how do you manage?
What medication are you on?
Can you suggest anything for me?

And most of all, some people in the same boat as me.

<3 Jess
 
Welcome to the forum! I have also had a couple surgeries due to a really bad abcess. I have had some fistulas too.

Immuran (Aza) did wonders for me at one time. Later on in life, I got so sick I needed remicade. It has been my miracle drug. It started closing my fistulas in 4 days. I have been in remission for a year now.

I have had some ups and downs with this disease. I was diagnosed at age 18 and I am almost 30 now. In that time I have finished college, had a career as an analytical chemist, travelled, snowboarded, camped, hiked, got married, had a baby, and now live in the mountains as a stay at home mom.

In that time I have spent about 5 years in remission total, with varying severity of the disease in between.

My advice is to experiment with holistic approach with everything there is to offer. Diet, medication, supplements etc. Do not give up until you find what works for you. This disease is so different for everyone.
 
Last edited:
Hey Jess!

Sounds like you've had a really rough go! I've been in and out of hospitals myself, but I've been lucky to avoid surgery so far! I'm slightly older than you, 18 going on 19 and I was diagnosed in September of '08 right before I turned 16. Going through high school with disease wasn't fun, but I managed better once I turned to home schooling part and full time. Emotionally it's rough, I won't lie, but if you have good supportive friends and family you'll find a way through it. I can get pretty dark and mopey when I'm sick, but when I'm well it's a lot easier to cope and be vibrant!

Right now I'm on Humira and it's doing wonders for me. It sounds like you might need to go to a stronger medication and humira or remicade might be something you want to consider, but definitely make sure you look up the risks so you know for yourself the risks of what could happen.

As far as suggestions go, I would experiment with your diet and see if it can help you at all. Some people can change their diet and it helps dramatically. Others have to wait to get the inflammation down first and some it doesn't affect them at all.

Hope this helps! if you need someone your age to talk to, I'll be around :)
 
I honestly was so depressed about everything until I came on this forum. Just having people to talk to and discuss with that understand EXACTLY where you are coming from and what you are going through is amazing for coping. I have had horrible symptoms for 2 years and am still undiagnosed but recent speculation is perianal Crohn's. The best advice I have is to be proactive. Read everything you can, experiment and don't give up. You're not alone in all of this and you have so many resources right here on the forum! Good luck with everything!
 
Hi Jess and welcome! I am glad you found us. Crohn's is very difficult to manage at times, but it is nice to know you can come here and so many will know what you are going through. I hope joining the forum helps you as much as it has helped me.

As far as your treatment, I agree Toni that it may be time for you to try something a little stronger. Check out the Treatment forum along with all of the sub-forums. You will learn so much about the different options and how they have helped so many. I hope you find something that works and you start feeling better!
 
Hi Jess and welcome! You are young and have already been thru so much!

I agree it might be time to try a biologic or something to keep things under control. I'm so sorry you've had to deal with the abcesses, strictures, fistula, etc. It's so much!

I hope you are able to find something that works. In the meantime, you will find a lot of good advice and support here.

- Amy
 
Wow!

hey guys,
thanks for all the replys! i wasnt sure i was going to get any :p

its good to know what you all take to manage your CD,
at the moment my drs arnt really open minded about new medication?
well thats how i feel anyway. Have any of you heard of infliximab? not sure on the spelling but he's wanted me to go on this since i was diagnosed.

THANKSSSS A BUNCH :D
 
Welcome Jess! I'm also 17 and just joined this site. I was diagnosed when I was 11 but apart from that my story is really similar to yours! So much in common; fistulas, stoma bag, multiple MRIs and bloodtests. Im also going through a rough patch right now, which is also why I found and joined this site. But it sounds like yours is quite a lot worse than mine right now :/ I hope its all okay soon, and stay positive <3

The way I manage may sound very annoying, but I am a VERY optimistic person. I try to focus on the good things in life, and (I don't wanna sound preachy cos I'm not religious or anything, I only do this cos it releases my stress) I pray every night to say thank you, and if theres anything worrying me I ask for help. This way I get a good night sleep without any worries. It may sound very cliche and silly, but being stress-free and sleeping well reeeeally help!

I just started humira two days ago (it was scary but it's already working a bit :D ), Aziothoprine, Omaprazol and I drink at least 500ml of Modulen IBD every day.

Have a nice 18th and good luck with everything, this site will help you a lot :)
 
oh and infliximab! yeah, i had about 8 of those then they stopped working. then a year after my surgery i tried again. the first few worked but then it wore off again.
its basically an injection, but its reeally slow (it usually takes about 5 hours). its not painful cos you cant feel the needle, but its REALLY boring...
 
I am also optimistic, try to keep everything in perspective.
In a way, i feel that the CD has helped me grow as a person, I was Homeschooled throughout HighSchool, So i matured alot more than my friends just because i had to. I had to grow up and manage my CD, i didnt have a choice, the day i was offically told i had Crohn's i was admited to hospital; altho i didnt go, I told the drs i couldnt, (My bestfriend was leaving for the UK) he was stuned to say the least, so i went in the day after str8 onto antibiotics, i had lost a tonne of weight! was down to 25kg, So they began feeding me through a drip, TPN i belve its called. I had my first colonoscopy a year before my surgery, and my intestine was to inflamed they couldnt fit the tiny camera through. I had a case study done on my by a couple of med students.
What is humira?
and what is it helping?
I really dont want another operation at the moment, And also want to be healthy enough not to spend another birthday in hospital :)

I hope you start feeling better :)!

I find this site is good, because i never have really talked to anyone about my CD. I like to keep it all to myself, just because people my age, dont usually understand, at highschool, i was called a hypocondriac and things like that coz i was always sick. so its helping i guess get it off my chest in a way?

<3

sparkles said:
Welcome Jess! I'm also 17 and just joined this site. I was diagnosed when I was 11 but apart from that my story is really similar to yours! So much in common; fistulas, stoma bag, multiple MRIs and bloodtests. Im also going through a rough patch right now, which is also why I found and joined this site. But it sounds like yours is quite a lot worse than mine right now :/ I hope its all okay soon, and stay positive <3

The way I manage may sound very annoying, but I am a VERY optimistic person. I try to focus on the good things in life, and (I don't wanna sound preachy cos I'm not religious or anything, I only do this cos it releases my stress) I pray every night to say thank you, and if theres anything worrying me I ask for help. This way I get a good night sleep without any worries. It may sound very cliche and silly, but being stress-free and sleeping well reeeeally help!

I just started humira two days ago (it was scary but it's already working a bit :D ), Aziothoprine, Omaprazol and I drink at least 500ml of Modulen IBD every day.

Have a nice 18th and good luck with everything, this site will help you a lot :)
Click to expand...
 
Oh right! thats good to know. i will have to talk to my doctor about it! when you say it helped the first few times, helped with what?
There is also another drug in my country (cant remember the name) but its not funded costing $12,000 per person i think. So i may have to start saving! :) Apparntly its better than Infliximab?

<3
 
wow... that sounds really rough! ah what did they do when the colonoscopy didnt fit? i had one and it was bad enough even without complications!
humira is a treatment like infliximab. it calms down the immune system, and i have it cos my crohns is flaring right now and i have fistulas...

omg you spent a birthday in hospital? thats horrible :(

me too, this is the first time ive ever really spoken to anyone about my crohns. although friends can be supportive, they just dont understand, so i dont ever bother to go into details with them.
yeah im glad youre also finding a way to get this all off your chest :)
 
it helped when my crohns was flaring; fistulas and generally feeling ill.
wow! thats a lot of money! could it be humira? it is basically an improved version of infliximab, but you have to inject yourself :/ i dont think its that expensive though so im not sure if thats it...
 
Yess! thats the one, you have to inject it yourself!
its not funded over here! so we have to pay for it.

and when the camera didnt fit, i assume they finished? im not too sure but they couldnt do anymore.

Yeah they're as supportive as they can be really, they dont like knowing the gorey details of what CD actually intails.
 
Wow, you've been through a lot! I'm 19 so I know what you must be feeling, being a teenager and having Crohn's. I'm on Azathioprine too :) It's worked wonders for me. I've been having a bit of a worrying time recently too, been getting symptoms again so I went on steroids and a higher dose of Aza. I've been on the steroids for about a month now and hopefully the higher dose has kicked in. Has your illness affected your studies much if you're still doing that?
And as far as how do I cope I just always try and remember not to feel sorry for myself and think about people who are worse off than me to try and put things into perspective (my best friend has cancer and is currently having chemo, so this isn't hard!). How do you feel about having Crohn's?
Hope you're feeling well
xxxxxxxxx
 
Sorry, I've been OFF the steroids for about a month now, and hopefully the higher dose of Aza has kicked in haha, need to proof read before I send!
 
has it really?
ive been on aza for 2 years nearly and i havent noticed any change..
yeah i was in the same boat about the steroids, havent had them in a long while tho, but they did keep me out of hospital for 8 months, thats how long i was on them for.
yes it did effect my studies, i got diagnosed in my first year of highschool, the other students (and the teachers) called me a hypocondriac, bascily becuase i was sick all the time, and the doctors couldnt understand why.
After months of being in and out of hospital (once i was finally diagnosed) the NZ health system FINALLY came to my rescue and i was inrolled in the "Health School" which is basiclly home schooling, they provide a teacher for 1 hour twice a week, which was great! 6months after my operation, i decided i would give regular highschool a try, however, that didnt last long. Only because i had grown up a lot quicker than all of my friends and they were just too "childish" in a way, dont get me wrong i love them dearly but i couldnt deal with it, after being around adults and being treated like one myself. So i left highschool in form12, which is one year of completing highschool, i then studied for a year and gained a diploma in culinary arts (which i gained a double distinction for :p), so i wasnt a complete drop out :D
I am now working in IT and on a service desk, as being a chef didnt really fit in with my CD at the moment, with being fatigued all the time the long hours on my feet would end me up in hosp in no time flat :)

I think of it the same way, my familys friend whos pretty much my uncle is in hospital in a coma from kidney failure. Hes in a much worse place than i am. :)
PLUS - if i didnt have CD i wouldnt be the person i am today :)
 
Just seen that you were on pentasa, I was on that when I was first diagnosed and was on it for 6 years even though I kept having flare ups! so it obviously didn't work but it was only until I changed doctors at 13 then he put me on azathioprine. I think it has different effects on everyone though. My mum has ulcerative colitis and aza has been wonderful for her too! so maybe its just our genetics or something haha.
I'm on 100mg and you're on 50mg, maybe you could ask to raise your dose to see if you see the good effects more?
And I totally agree with you, I would be a different person without Crohn's! So, something good comes out of it :)
Take care xxxxxxxxxxxxxxx
 
*Kiwi Jess*

Dear Jess,

My spouse has Crohn's. She is currently taking an anti-tumor-necrosis-factor-alpha monoclonal antibody medication called Humira. Another common anti-TNF drug is Remicade. Discuss the possibility of treatment with these medications with your GI doctor. Learn both the pros and cons of treatment before deciding.

Dr. S
 
silveyk said:
Dear Jess,

My spouse has Crohn's. She is currently taking an anti-tumor-necrosis-factor-alpha monoclonal antibody medication called Humira. Another common anti-TNF drug is Remicade. Discuss the possibility of treatment with these medications with your GI doctor. Learn both the pros and cons of treatment before deciding.

Dr. S
Click to expand...

Yeah the drugs you mentioned above, arnt funded in my country, i hvae already looked into them.
Which makes it hard, with them being upwards of $12,000
thanks for reading :)
 
On this forum I've heard a lot about a drug called 6MP which is an immune suppressant like azathioprine, by the looks of it people try this when aza doesn't work (well, from what I've read on the forum). Maybe you could ask about that?
xxxxx
 
Wow! It sounds like we have a lot of strong young girls on this forum who all chose to stay positive throughout their disease! That is great! That will honestly get you farther than any medication.

Jess, I hope you find a treatment that works for you! Is Remicade funded where you are? It really works! Where are you from by the way?

Welcome to the forum!
 
Jess- Check the Humira website - they do offer financial support to patients. Not sure if it is available overseas but it's worth looking into. Over here qualified patients can get it for like $5 a treatment or something ridiculous like that.

I know someone in NZ who is taking Humira for Rheumatoid Arthritis. But, if I remmeber correctly, she is only qualified because more than X number of joints are affected. So maybe there are similar restrictions if it is approved for Crohn's over there. I would push harder with your doc and see what they say.

Good luck -Amy
 
Jer's Girl - I'm not sure what Remicade is? so i havent asked? haha if that makes sence?
And im from little ol' New Zealand :)

ameslouise - Yesss, thats the same with Crohn's, we have to apply to the medical board of New Zealand; and you hvae to have reeeeeally bad symptoms, which i currently dont have extream symptoms, ive had worse before so they arnt willing to do anything at the moment

Thanks everyone ! :D
 
Jess -

I was diagnosed when I was 17 in my last year of high school. I ended up being hospitalized for a month for them to get things under control and get me on the road to feeling better.

I’ve been lucky in that I’ve been able to manage on medication (azathioprine and 5-ASA) for the past 20 years without any issues, but things are starting to act up again (I now know from experience - having the colonoscopy scope not fit is not fun) which caused me to do some research and find this site.

It is a great resource with a lot of good information.

I agree with what everyone has posted on this thread.

I find having a positive outlook also helps. Hang in there.

Mark
 

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