My story, the start of Crohn's disease

Hey everyone,
I decided to join this forum after being diagnosed 8 days ago with Crohn's disease =/

To start, i'm a 15 yr old boy and last year exactly during this time of the year I had weeks of cramps and pains in my stomach. I was taken to see the Doctors and went to the hospital and everyone kept telling me i wasn't eating healthily and abs exercise was causing this (yeah right lol). There I told them I had an ulcer, heck I preached that I did and I asked for a gastroscopy but no-one believed me or took me that seriously. But after that I became well again, more or less and went through everything just fine. Well after a few weeks of being fine i came down with such a bad case of diarrhea but the doctors just told me to eat bland foods and it cleared.
3 months ago, i had sudden instances when i'd have diarrhea for just a day or 2 and i'd get better but i was sure this was because i was helping out at a fast food shop and was eating badly and so i made my diet healthier and the symptoms were gone. Then 5 weeks ago everything just went crazy: Insane diarrhea with me going 7-8 times a day, unbearable stomach pains which lead to me crawling on the floor and massive weight loss of 21kg. My life was going downhill by the second and I found myself on the floor with my arms around my stomach in pain, not being able to get up. After staying in hospital for a week, fainting from bowel prep and not being able to sleep from my stomach aches. I had biopsies and an endoscopy done. I was diagnosed with Crohn's disease and I was discharged 7 days ago and put on steroids, Pentasa, vitamin supplements and put on Modulen and only that - no food, no drinks for 6 weeks =(
After all this, I'm really depressed and sad all the time, i see and smell food everywhere and miss going to school (yeah that bad lol) and lie around stressed not being able to play sports or even do normal everyday things because I've become so weak. My future doesn't look so good and my hopes are somewhat fading away.
I was looking around online and I came across this forum, I was amazed, other people are going through this and know where i'm coming from.

it's a pain. I hope it gets better, I hope I can live life like a normal person and become a doctor someday, like I've always wanted and who knows; I may specialise in IBD someday and find a cure - i'm a dreamer

Thank you for reading, anyway, i'd jus like to say hello to everyone and hope i'm welcome here and I wish everyone the best of luck with whatever demon's they're fighting.

Adil, welcome things will get better.

My daughter was dx with crohn in January, she a little older than you at 16.

She is now back at school and has started back at swimming training.

For every dreamer out there- there are more of us who have hope someone like you will find a cure or better treatments for what we have!

Good luck- IT WILL GET BETTER1


Lauren
:thumleft:

Hey, sorry to hear the news you have crohns.
You are very positive and that's the best thing you need
A good attitude.
Everything in life is manageable to an extent and you will still live on to an enjoyable life.
It does make it hard not being able to have certain things to eat although, when all your friends get fat... They will be like.... Why do you look so good? Lol...
Hope you keep that attitude with you through the years because it makes me want to have a better attitude with my health.
All the best

Hello Adil and welcome to the forum :bigwave: There is a lot to take in when first diagnosed but you have come to the right place to get all the info and support you need Just take it one day at a time and know that things can get better. The steroids are good at getting the inflammation down and the pentesa is a maintainence drug that is used to keep things settled so hopefully you will be feeling much better soon.

Glad you have decided to join hun

AB
xx

Hi Adil and welcome to the forum my friend. I'm so sorry to hear of your diagnosis

Out of curiosity, what vitamins did they put you on? And how much of each?

It's understandable that you feel sad. I suggest giving this thread a read. I think it may help out a little

If you want to be a doctor one day, I'd start by educating the heck out of yourself regarding this disease. There's so much to learn that not only will it help you advocate for yourself to ensure you're getting the treatment you deserve, but it'll give you a good base as you start to enter into schooling for medicine.

Take care! We're here for you anytime.

they put me on a-z vitamins, i think it was because i was a bit anemic during the last few weeks.

P.S
Modulen diet sucks lol

Welcome adil
I'm new to crohns too (about a month!) so I know how you feel. I just finished my steroids yesterday and I have to say they made me sooo emotional! Crying at the drop of a hat, feeling sorry for myself and everything else. The information sheet warns of this so don't be too worried about it, just share with others how your feeling and blame the meds, that's what I did!! I have to say the grieving thing probably was part of it, its so overwhelming to be told u have this thing forever and you can read so many horror stories. But this forum is great for balancing everything out, people here are so supportive
I wish u all the best x

thanks xD
It's been nearly 3 weeks since i've been diagnosed and it's unbelievable how much better things have gotten. And yeah, steroids are a pain lol I get so angry sometimes and it's over pointless things :lol2:. How long did you need to take steroids for? I'm worried if other side effects may start coming up =/

Hi Adil !! So sorry you have this horrid disease. I am still waiting on my dianogsis so i can begin treatment.
But i keep thinking if someone as young as you can do it, then so can i!!! I hope your dream of becoming a doctor come true and you do find a cure for CD then no one else would have to suffer!!

I found this forum just in the last week and have to say it is full of info!!! I am stilll reading and learning new things.

Good luck to you! and glad things have gotten better for you.

Thanks,
I hope everything turns out fine for you, just remember CD isnt the end of the world if your diagnosed with it, i used to think that but honestly, it's not all bad. Let us know of what happens, when are expecting ur diagnosis to come back?

No you are right. Its not the end of the world. Had a rough flare yesterday but today feel better.

I have a referral to a GI and havent gotten that appt yet. My colorectal surgeon has told me its Crohns but wont give me any official word without the GI opinion. So i am kinda stuck in limbo......Hopefully i get that appt soon. Which i will probably mean another colonoscopy , which i am not looking forward too but.....if it helps then it helps.

thanks! and good luck

Hey Adil welcome to the board. I have a brother of your age. Dont worry bro. You might feel bad initially but you'l start feeling better as the time goes and slowly you'll get back into the normal life with few changes. I was diagnosed around 8 days ago and I too am on pentasa. Make sure you contunue the medicines prescribed by the doctor and just enjoy life as much you did earlier. The good things have already started with you, the moment you joined this amazing forum.:smile:

Thanks, i hope everything works out for you too, are you just on pentasa or other meds too?

Adil said:

Thanks, i hope everything works out for you too, are you just on pentasa or other meds too?

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Nopes just pentasa....am suffering from very mild form of crohn's..thus am taking only 3 gm of pentasa a day....2 tabs x 3 times/day. part from that I am taking some med for my high eosinophil counts which I will stop from next week and also psyllium husk..which works just great for me.

I think i'm experiencing insomnia. I havent slept in 3 days - no shut eye. Is this because of Crohn's?

Hi adil,
I was on steroids for 5 weeks I think! 2-3 weeks of 60mg then reduced down. I think some people are on it for a lot longer, do u know how long u are on it for? I found steroids made it difficult for me to sleep too, although again its hard to know what to blame for all these experiences! I hope ur doing well!

that explains a lot lol i'm on prednisolone 35mg right now, i dropped from 40mg the other day and i'm going to be on it for 9 loooong weeks lol. Thanks alot, i was worried something weird was going on xD

Can anyone tell me what a pseudopolyp is? I'm worried since this is one of the things they found during my endoscopy.

Hopefully Dusty will be able to answer your question. She should see your thread soon now that I have mentioned her name.

Hi Adil,

When referring to the bowel a polyp is abnormal growth of tissue that grows out of the mucosa of the bowel. Polyps can be a concern for some people in the general population because they have the potential to be cancerous or become cancerous over time.

Now with Crohn's and pseudopolyp you have to look at the word pseudo and what that means...not genuine but having the appearance of...so that means what you have looks like a polyp but it isn't. What you have is an abnormal growth of tissue but it is due to inflammation and they may be present when you have severe active disease which I imagine is what has happened in your case.

Dusty. xxx

It is always good to have a Dusty on your team!

When I had a colonoscopy recently several different types of polyps were mentioned - Doctors will often talk with a presumption the patient knows most of the medical terms - but in reality most of us just want a straightforward, down to earth Dusty version.

So after 6 weeks of Modulen liquid diet, i'm allowed food again - its great i've had no symptoms at all for about 3 weeks, i'm completely well again but at my GI appointment yesterday, i was told that a previous MRI scan 4 weeks ago showed that my entire small intestine was affected by Crohn's as well so the GI told me to start Azathioprine 75mg for 6-8 weeks. I was wondering if this is really necessary? I mean, i feel completely fine and I heard that Aza isnt the nicest of drugs lol

the problem is even if you are feeling good, once you stop the steroids then the chances are you are going to become inflamed again unless you are using drugs to keep you in remission. so azathioprine is necessary yes. 5-ASA compounds (like pentasa) are extremely unlikely to keep you in remission, particularly as you appear to have moderate-severe crohn's (judging by inflammation in your entire intestine and them putting you on modulen diet). (have a search around for some medical journals about the efficacy of various treatments, will be good revision for becoming a doctor )

aza isn't particularly nice, but on the plus side it appears as if the majority of people either tolerate it well with very few side effects, or react really badly to it so are told to stop taking it. you might not want to take it, but the alternative is suffering repeated flare ups and courses of steroids (which have far worse side effects if repeatedly taken), and all the things that go with that (stays in hospital, possible surgery etc). I think it is quite likely that you will be on azathioprine indefinitely if it works (not just 8 weeks).

your story is quite similar to mine actually, looks like we were diagnosed at almost the same time as well. i've just started on aza 100mg, and currently have 3 weeks left of the steroids. glad you are feeling good now, I am too, long may it continue

Hey Adil, glad your feeling better I can only agree that you do need to start on a maintainence med like the Aza to make sure things inside stay well. I think what the doc may have meant is that over the next 6-8 weeks you will be increasing the dose up to the 75mg as long as your bloods come back ok, it is not ideal to have to be on meds like these but it is important to keep the tum settled.

AB
xx

You don't have to take Aza for the rest of ur life do u or for really long periods of time? =[

A lot people take aza to keep them in remission. My daughter is also on aza her current plan is to use aza to get she in remission then consider a step down to lower meds in the distant future but sarah only has mild to moderate crohns.

There is blood test that should be done for starting aza, sorry l can't remember it name.

I'm going to page Dusty for you, both her children take aza to keep them in remission.

Welcome!
When you get the disease under control you can eat what ever you want, go back to school, play sports, everything. I was in remission for over 2 years and it was like nothing was wrong with me in that time. And as far a cure goes, its close! there is a company in Houston, Texas that is coming close to eliminating the gene that causes Crohn's, Rheumatoid Arthritis and Psoriasis. Its hard to imagine a world without any of those diseases but maybe someday!

Hey Adil,

Some people take Aza for very long periods of time and others for a couple or a few years. For those that don't continue with it may be the doctor that recommends it or the person themselves decides to go off it. It is difficult to say the likely outcome if treatment is discontinued as response is as individual as the disease itself. Some people seem to go off meds and do quite well but others relapse and then regret having stopped the treatment.

The test that Catherine is talking about is a TPMT blood test.

Dusty. xxx

spoke to my consultant today about aza treatment. he said that the standard treatment plan is to take it for 4 years and if you are still in remission by that time, then you can probably stop taking it. He said that of those that reach that stage, 18% relapse in the first 18 months, and 50% relapse within 3 years of stopping taking it. (and 50% are still in remission after 3 years+). Also spoke to him about 5-asa compounds. Apparently all clinical research out there other than one single "questionable" clinical trial shows that they have absolutely no benefit in treating crohn's. hope this helps.

Wow. Hey everyone, it's been a while - hope you're all doing well. I myself have been doing great, off pred but had quite a bad response to coming off. My body really went over the top with swelling and redness but I'm doing MUCH better now. Getting my life in order and trying to do well in school, catching up on the mountain pile of work I've missed lol. Wish me luck. And just to say to all my Crohnies: Life gets sooooo much better after you're diagnosed and treated so hang in there and be brave =D much love for all of u.

I am so pleased to hear you are doing better now What meds are you on now - if any - for your crohn's?

Currently, I'm taking Azathioprine - 100mg
Pentasa - 3g
Calcium chewable tablets (not sure how you measure it )
Iron Sulphate - 400mg
Doxycycline - 400 mg (For the pred reaction)

I think I stopped growing after my Crohn's, can't see me getting any taller =( But I'm good. Oooooh and from 39kg in hospital I went up to 64kg. Woot!

Do you follow anything diet wise?

Nope, thankfully, I've been eating whatever I want without any Crohn's-like symptoms reappearing but I do still have Modulen. It's not necessary but from hating it in the beginning, I've really come to love it now lol as weird as that sounds.

I must admit Modulen is that best of the shakes I have had, especially with the flavourings you can add to it.

Hey everyone Adil again Hope ur all well, I'm doing great, probably the best time of my life so far xD finished my GCSE's and got my life back together, got out for depression, gonna hopefully get a job and even got got a girlfriend =$ I think she might even be reading this

So glad things are going so well for you!!!

That's great! I'm glad to hear it

So pleased things are going well for you

Hi Adil! Welcome to the forums! Can I just say, its so nice to see someone so newly diagnosed being so positive about things. You're right, its not the end of the world. I'm so glad you are keeping hold of your dreams, remember this when you are feeling bad and know you have something to look forward to. How awesome would it be if your own doctor had crohns too? (That sounds bad, not awesome for the doctor obv, but it would make life so much easier for us!)

With regards to the Aza, this is my second time on it. I am ashamed to say, I had been taking it about a year before, felt so good and normal that I decided oh I dont need to take these anymore. And yup, you guessed it, a year down the line and I'm just coming out of the worst flare up ever, and starting back on Aza again. So yes I would say you do need it, or something like it to keep flare ups at bay.

I think Crohns is a very very confusing disease. I work with a chap who also has it, but he has completely different symptoms, is on completely different medication and it doesnt seem like we have the same condition at all, but we do. Best thing to do would be to read read read up on everything, but remember it is a very individual condition, and not everything you read will concern you.

Good luck shorty keep us posted on how you get on.

K xx

Aphrodite_x said:

Hi Adil! Welcome to the forums! Can I just say, its so nice to see someone so newly diagnosed being so positive about things. You're right, its not the end of the world. I'm so glad you are keeping hold of your dreams, remember this when you are feeling bad and know you have something to look forward to. How awesome would it be if your own doctor had crohns too? (That sounds bad, not awesome for the doctor obv, but it would make life so much easier for us!)

With regards to the Aza, this is my second time on it. I am ashamed to say, I had been taking it about a year before, felt so good and normal that I decided oh I dont need to take these anymore. And yup, you guessed it, a year down the line and I'm just coming out of the worst flare up ever, and starting back on Aza again. So yes I would say you do need it, or something like it to keep flare ups at bay.

I think Crohns is a very very confusing disease. I work with a chap who also has it, but he has completely different symptoms, is on completely different medication and it doesnt seem like we have the same condition at all, but we do. Best thing to do would be to read read read up on everything, but remember it is a very individual condition, and not everything you read will concern you.

Good luck shorty keep us posted on how you get on.

K xx

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I'll keep that in mind, I admit I've slipped up once or twice with my medicine but I'll be more strict with myself. I've read pretty much everything on the internet haha my mum keeps telling me I overdo it. Scholarship papers, medical reports, youtube vids and so much more, I can't help it, its so interesting. I hope everything goes well for u in the future and the same for everyone else. Best of luck :smile:

Adil said:

I'll keep that in mind, I admit I've slipped up once or twice with my medicine but I'll be more strict with myself. I've read pretty much everything on the internet haha my mum keeps telling me I overdo it. Scholarship papers, medical reports, youtube vids and so much more, I can't help it, its so interesting. I hope everything goes well for u in the future and the same for everyone else. Best of luck :smile:

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Its not easy, suddenly having to wake up in the morning and take loads of tablets. Think my counts on about 18 at the moment, and its the last thing I want to do when I first open my eyes, but I have to make sure the pred has kicked in before I attempt driving to work!

The pentasa are just horrible to take though arent they should half them if you have trouble with them, although that just gives you more to take! I'm not the greatest at taking my pentasa, bad girl.

Hi Adil,

Just read your story and so very happy to read your happy ending! I'm glad everything is coming together for you, including the girlfriend!

Just FYI, my son also did six weeks of formula only when he was diagnosed (May 2011) and still continues to supplement his diet with formula. He's also on remicade but I do think the supplement provides him (and you ) with an extra boost of nutrition! :thumright:

Hope all continues to go fantastically for you!!!

Oooh and Hi Adil's girlfriend!!!

Aphrodite_x said:

Its not easy, suddenly having to wake up in the morning and take loads of tablets. Think my counts on about 18 at the moment, and its the last thing I want to do when I first open my eyes, but I have to make sure the pred has kicked in before I attempt driving to work!

The pentasa are just horrible to take though arent they should half them if you have trouble with them, although that just gives you more to take! I'm not the greatest at taking my pentasa, bad girl.

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YES! YUCK TO PENTASA. So hard to gulp down, it's like it scratches your throat on the way down >.< Haha but you gotta do what you gotta do I guess

Tesscorm said:

Hi Adil,

Just read your story and so very happy to read your happy ending! I'm glad everything is coming together for you, including the girlfriend!

Just FYI, my son also did six weeks of formula only when he was diagnosed (May 2011) and still continues to supplement his diet with formula. He's also on remicade but I do think the supplement provides him (and you ) with an extra boost of nutrition! :thumright:

Hope all continues to go fantastically for you!!!

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I actually really like Modulen now xD Couldnt stand it at first, even threw up from it at times but its so nice now. I think Crohn's has made me a little delirious

Adil said:

YES! YUCK TO PENTASA. So hard to gulp down, it's like it scratches your throat on the way down >.< Haha but you gotta do what you gotta do I guess

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Haha its trying to swallow a lump of chalk!

Oh you are such a breath of fresh air Adil :hug:

Aphrodite_x said:

Haha its trying to swallow a lump of chalk!

Oh you are such a breath of fresh air Adil :hug:

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You too haha