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15 year old's story of Crohns - So far!

Hi, i'm new to this site! it's been great so far finding out about everyone elses experience(s) with crohns.

my name is Josh, i'm 15 and live in the uk.

since september i had been dealing with weight loss and feeling sick when eating (and sometimes being sick). we went to the doctors, who said i was "just skinny" which my mum did not believe - and neither did i!
so we went to another doctor, who just observed my weight for about 2 months, before referring me to a gastroenterologist at the local hospital. at the first meeting with him, he asked if we had been told what i "might" have - said no. he said he was 90% sure I had crohn's disease, and the reason it had taken this long to get to that conclusion was the fact that i had different symptoms than normal - no diarrhoea - just nausea and weight loss. Then he said i will have to have a colonoscopy to confirm the diagnosis, but they couldn't do it there, i would have to have it done at birmingham. So a few weeks later i went for the colonoscopy. when i woke up i was in agonising pain - and could barely move. (after very painful movements to get onto the X-ray trolley/bed) the doctors said i had a perforation in my bowel and would need surgery. (not that i remember any of this! parents informed me afterwards...)
i just remember being told we were going up to the theatre and then having a mask put over my face. woke up a few hours later..dozing in and out of consciousness.

the surgeons knew the surgery was healing well after 5 days, and so i was "signed off" the surgeons "list", and onto the gastro team's "list". after a week or two, the central line in my neck "gave up" (as apparently they have a limited life), and the doctors needed to decide what to do next. It was either to have an ng tube put in, or a hickman line(spelling?) put into my chest - which i was not keen on. so they decided on the ng tube - if i could tolerate it. which i did - luckily! after a few days they had slowly increased the ML/H enough so that it would only be on for 12 hours a day - while i'm sleeping. a couple of weeks later (5 weeks after initial colonoscopy!!), i was allowed home. so at home i'm having the overnight feed every night, and my medication - azathioprine and omeprazole. Every 8 weeks i'm supposed to have a infusion of Infliximab(remicade), but the last couple of infusions have been brought forward slightly because the effects (being hungry!) wore off. Thanks for reading and would love to hear others' stories! Josh :)
 
Hi Josh, I am also 15 and I live in the UK, in the south. I can empathise with most of the points in your story. I was given multiple vague 'diagnoses' over a period of a year or so. My symptons started in the Year 9 summer holidays, and I only got diagnosed with Crohn's halfway through Year 11! I really wish you a quick recovery. I am near the end of my recovery having endured hell during my 2-week stay at hospital. But I am only a few steps ahead of you, you will reach the end of it all soon enough. I also had an ng-tube in hospital; to be honest I never had any problems with it, just that it looked strange in public, but it came out soon after being discharged. Are you eating normally? I am currently drinking 2.1l of modulen alongside a restricted diet. Your medication is quite different to mine, probably because you had a perforation; I just had 'severe ileal Crohn's disease'. I am on 10mg Prednisolone steroids and 10mg of Omeprazole. Get well soon!
 

mikeyarmo

Co-Founder
Welcome to the forum Josh!

Thanks for sharing your story with us. So sorry to hear about all the trouble you have gone through over the past few months. I am glad the gastroenterologist you saw was able to get to the bottom of your symptoms. I was diagnosed a bit later in my teens but also had initial trouble getting an accurate diagnosis.

Make sure to check the many other stories available in this subforum. We are also always happy to answer your questions or concerns!
 

xJillx

Your Story Forum Monitor
Hi Josh and welcome! Boy, you have been through so much! You are very brave. How are you feeling lately? I sure hope better.

Praying you have a speedy recovery and are back on your feet soon!
 

David

Co-Founder
Staff member
Location
Naples, Florida
Hi Josh and welcome :)

That's quite a story you have, thank you for sharing it! As you're on Remicade, you may want to check out our Remicade support forum and we also have a private teen forum. PM me if you'd like access to that.

See you around!
 
Hi Josh, I am also 15 and I live in the UK, in the south. I can empathise with most of the points in your story. I was given multiple vague 'diagnoses' over a period of a year or so. My symptons started in the Year 9 summer holidays, and I only got diagnosed with Crohn's halfway through Year 11! I really wish you a quick recovery. I am near the end of my recovery having endured hell during my 2-week stay at hospital. But I am only a few steps ahead of you, you will reach the end of it all soon enough. I also had an ng-tube in hospital; to be honest I never had any problems with it, just that it looked strange in public, but it came out soon after being discharged. Are you eating normally? I am currently drinking 2.1l of modulen alongside a restricted diet. Your medication is quite different to mine, probably because you had a perforation; I just had 'severe ileal Crohn's disease'. I am on 10mg Prednisolone steroids and 10mg of Omeprazole. Get well soon!
Seems like we have quite a lot in common! I am still on my overnight feed (through NG tube), and just try to eat as much as possible in the day time, but sometimes don't manage to eat anything. But generally I eat a few bits!
 
Thanks everyone for the replies!

Hi Josh and welcome! Boy, you have been through so much! You are very brave. How are you feeling lately? I sure hope better.

Praying you have a speedy recovery and are back on your feet soon!
yes I'm feeling better now, but have on and off days. This past weekend I have been in lots of pain (wind I think!) :ycool:
 

Astra

Moderator
Hiya Josh
and welcome fellow Brit

Glad you're ok and on the mend, take care
Try some Windeeze from the chemist.
lotsa luv
Joan xxx
 
Hi Josh , Im also from Northants & went through a similar experience at the age of 15 in the middle of my gcse's ,it just shows how strong you are having to deal with illness on top of everything else aswel!

hope you feel much better soon!

Laura x
 
small world! and yeah, it's tough enough on its own - let alone loads of exams thrown in!
are you in remission?
and thanks :)
 
it is a small world indeed !
yes , in the last 6 months i have only had a small flares :thumright:
wasnt until i left school last year that i started to feel better :ybiggrin:
hope your school stuff goes ok & you feel better
Laura x
 
Hey :)
Wow, you've been through a lot! Glad to hear you're feeling a bit better now though.
Hope things continue to improve :) x
 
Hi Josh! I'm also a teen with crohns and my story is quite similar to yours! I was diagnosed the same way and when I woke up from my colonoscopy I was also in pain and very shaky. My doctors were scared I had a perforation but After blood tests, x-rays and a ct scan I found out that I had an excessive amount of air in my stomach. After a week of no eating, and an ng tube to suck out the air I was finally healthy enough to go home. It's was not easy, but now I realize it made me stronger, and More mature!!! Good luck and feel better!!!
 
I remember how horrible the NG tube was. But it was tolerable. Surgery - sucks! bad. I hope you bet better soon!! Out of curosity and sorry if this sounds dumb, but how long did you have to have that ng tube in? And also, 5 weeks is an awfully long time :( Im sorry it took that long for you to get better again.
 
Hi, still have the NG tube in. Think it is planned to stay in till I reach a decent weight (50kg+). am currently 37 but rising :)
 
Hi Josh! I had a tube feed too! So horrible. Is it to help you put on weight? Mine was just to be on an elemental diet for 3 months (which actually made my inflammation worse, but that's another story aha!). Hope you're feeling better and make sure you get some kind of special consideration for any GCSE's you're doing!
xxx
 
Hi Josh! I had a tube feed too! So horrible. Is it to help you put on weight? Mine was just to be on an elemental diet for 3 months (which actually made my inflammation worse, but that's another story aha!). Hope you're feeling better and make sure you get some kind of special consideration for any GCSE's you're doing!
xxx
Hi! Yeah NG tubes really are horrible things! Just this morning I threw up, and the tube came out! (never good news!). So after a call to the community nurses, I had it re-passed. Which I have to say was one of the more unpleasant experiences in life. But back to your question - yes I am on the tube feed to put on weight. I am also allowed to eat whatever I like.

My doc tried me on a diet of just liquid (fortisips) but they just made me throw up!

And we have been speaking to the school, who have sent off all of my doctors notes to the relevant exam boards, so they know im not my best atm. Also I am taking some exams at home this month - I'll let you know how they go! :D. Josh
 
yeah they made me throw up too! I suppose they're good for putting on weight though if you're eating food as well.
Oh no, I did that once, where I threw up the tube! :( It's so horrible isn't it. The worst was having to pull it back out through my nose, ew even the thought of that makes me feel ill. Is that what you had to do?
Hope you feel better and yeah let us know how they go :)
xxx
 
I just came across your thread after searching for info for Hickman lines. I just had one placed yesterday and it's a bit painful now, but should be OK in a few days (something to keep in mind if th NG tube doesn't work for you). I had to go the TPN route because I was having problems gaining weight on a liquid diet (tried both Fortisip and Modulen), and they made me sick after a week or so.

I hope the NG tube is still working for you; I'd never be able to tolerate that, so I admire anyone who can.
 
Hi josh ! I'm also 15 years old.
i'm actually in the hospital right now. I am on TPN because i haven't eaten in a week and a half. I cannot stomach anything !
I tried to eat last night and that was very unsuccessful !
I was diagnosed with Crohns just 3 weeks ago.
But merely 8 weeks ago I was fine and healthy:/
My sed rate has skyrocketed from a mere 20 to 91 in 3 days.
The doctors have no idea what is wrong.
Now I am experiencing severe bloody diarrhea and a lot of pain!
And it is said that I may also have gynecological as well as kidney problems.!
:/
I can't eat because I have ulcers in my stomach and gastritis.
With that being said;
my experience last night was horrible.
I had some noddle soup after being hungry for so long and whatever stayed down in my stomach has been causing me to get severe bloody diarrhea and a nurse told me that its not significant :/
Have you ever had this experience or anything of this sort?
Why are they doubting me :(
I can do with someone's help and advice !
 
Hi, i'm Dana and I was diagnosed with Crohn's a month ago.
I have an NG tube in too. But i'll be going to school in a couple of months with the tube still in. I really don't know how this is going to work out especially in high school.
I'm so worried. :\
 
I'm always boggled by all of these stories of protracted diagnoses. Apparently it's very common. I was diagnosed almost right out of the gate at age 6 and my daughter was diagnosed the first time she had a bloody stool.

I guess if your symptoms are atypical it's harder, but still, it's incredible that people go so long without an answer.
 
Hiya Josh! Well done for being so brave, I'm 18 and was diagnosed with Crohn's when I was 10. Fortunately, I haven't had to have this tube you've talked about (I probably would've fainted if I did!) I hope your education doesn't suffer but even if it does, qualifications and jobs are still acheivable!
 
Hey Josh!
I was ver similar to you when I was diagnosed (though i was 11). I was put straight on Azathioprine and an NG feed of Emsogen (which was the modulen of the day), it was nasty stuff I tell ya! I learned to pull the tube out in the morning and pass it again at night before i went to bed and managed to get it down to 9-10 hours stuck on that thing. Unfortunately I don't think emsogen was the feed for me and made me sick constantly. Not very pleasent having a tube up your nose and coming out of your mouth ;)
I tried various other treatments, LITERALLY anything that would help me avoid ever having to go on an elemental feed again as I love eating too much! (even if it caused me pain). Unfortunately, all the steroids in the world couldn't save me from the impending doom of another feed haa! I tried skandishakes for a while, they were pretty nice, tasted a bit like mcdonalds milkshakes. Unfortunately they were only supplements so i couldn't survive off them!
I was so determined I was not going on the feed again that i constantly lied to my consultant about how bad I was, always telling him I felt fine, despite my weight which was down to 4 stone at 15 :/ my 35 loo visits a day (including vomitting at the same time) and the abdo pain that would have me curled up crying in agony. In hindsight I Was pretty stupid haha! Unfortunately for me, I couldn't lie about my blood tests and with an ESR of 375 my consultant told me he couldn't avoid it any longer and after trying every other treatment available, including trial ones, back to the NG feed i went.
This time i went on Modulen for 6 weeks over CHRISTMAS! now as much as I had pretty much stopped eating due to the fear of the pain it caused me. Being told I couldn't eat on xmas day was hell! haha! I tolerated the modulen much better that the last feed but unfortunately, due to my own stupidity, I had left it too long and the damage was irreversable :/ I went in for a colonoscopy to see how bad the inflammation was the week before i was due to reintroduce food again. My colon perforated and I woke up with an Ileostomy. Not very pleasent for anyone, but being 15 and starting GCSEs was not fun.
I know the story sounds pretty horrific but if there is any message I would give to anyone with crohns... Don't pretend that everything is okay if you're worried ;)
Luckily for me, the perforation and stoma were the best thing to ever happen to me and I'm now 6 years in remission, got good GCSEs, A levels and have just finished my degree (damn that's scary! I still feel like a 15 year old in my head!)
As weird as this may sound.... If i could choose not to have had the horrid experiences I've been through, I don't think I would. They certainly make you into a better person If you look at them in the right light ;)
This seems all very waffly etc... but what i really want to say is keep up with the good work on the treatment! don't skip meds because "you feel alright today". Remission is a gift and you'll reach it soon :) When you have good days, make the most of them ;)
If you ever want to chat or have any questions feel free to add me on facebook (jenny shimmin) or email me on jenshimmin@msn.com :)
much love! xxxx
 
Hi josh i also live in the uk and am 16 i was sick for a while before diagnosed and when i had the colonscopy that gave me my diagnoses of crohns i eneded up in hospital because i bleed very badly. I was put on steroids and other meds and still lost weight then to cut a long story short about a yeaar later i had terrible pain. it was so bad i was rolling aaround on the floor i was being sick and couldnt get of the toilet either. i went a&e and became seriosly ill ,i was put on morphine then i had to be resusitated and needed emergancey surgery my bowel had perfurated and i had gone into septic shock meaning the fluid from the bowel that was leaking out had poisoned my blood and was shutting my organs down i then ended up in intensive care for two days on a ventilator for one of those days.. So pretty traumatic like ur story but i also only remember bits of it.. before i was diagnosed the gp would just be like its a stomach bug or she is just naturally slim so annoying.I have had agoinising flare ups lnding me in hospital but this was scary as i remember at one point not been able to see and couldnt move my legs. It makes u look at life differently and im now more mature than others my age and from reading ur story u seem the same.xx
 
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