Being 19 with Crohn's and Celiac diseases

Allright, so my name is Miley and I am 19 years old. I have been diagnosed with Crohn´s disease back in November.2012, and with Celiac disease some months after.
I have been having symptoms for 4 years (lost 15 kilos (33pounds) in 3 moths solely because of diarrhea which caused weakeness in my body resulting anemia) and nobody could have figured out what it was. One day, I noticed blood in my poop and I was terrified because doctors always told me that if there is no blood that its ok, and up until then there was none. So in October I was hospitalized and the best doctor in our region did my kolonoskopy, gastroscopy, and after it he told me that it looks like crohn´s, so I was released home with a therapy of Nizon,Salofalk,Imuran, and there was soo many other but I cant remember.
Month later, the results came in and they all asummed it was Crohn's,but nobody was sure because it wasn´t clear I think.
So after six moths I did kolonoskopy again, and so they saw another sign of another disease and it was celiac. I did got bloat in my stomach because of bread but I never realised why so it kinda cleared it up for me.
Now I am taking pills Folacin,Salofalk, Imuran and some other supllements. All in all I am feeling well, and I do not look like most od Crohn's or Celiac disease patients thank God. I am 176 cms and weigh like 66,67 kilos(which can be changed in days of flares where I can lose up to 5 kilos in one week).
The biggest problem for me is the bathroom, and going places, because of so many years of diarrhea my bowel muscles have loosen up so I need to find a bathroom in minutes and I really do not want to tell what happens if I don´t so... :S

hi, im 20, and was diagnosed with crohns September 2012, i lost 20 kg in a week
ive had all the medication with no affect, so had surgery, and now im back on my feet

its a horrible disease and very hard to diagnose, took my doctors 8 months to find out :/.

Oh my God that is really terrible Well I do hope that your remission phase lasts Anyway, do you have some problems that you have to cope with day by day?
I have problem with tiredness and constantly low iron level in blood. When I do try to lift it up, I get diarrhea,and ofcourse lose all of it

I like to think im cured, doctor and nurses said I should stay in remission for a very long time (or they hope so) due to how long and bad my flare was. Just last month I was told by my surgeon that (surgeon or specialist I cant actually remember with all the appointments I had) I dont have a mor signs of crohns, which was great news he said im no longer anemic (I used to have iron infusion at the hospital to boost my iron levels as I was too moody and stubborn to take iron tablets mysefl lol, but yea I got moody and upsett and angry and everything and myself for being so weak, as a guy, who used to go Gym lifting a decent amount and then to find I could barely lift a glass for water was something that put me in tears :'(

So problems day by day that I had before surgery, tiredness, sleep all day pretty much, unlike most people I had trouble going to the toilet as I had constipation, weak, low iron, and encourage myself to stay alive let alone keep in contact with friends or anything, I left uni because of it. And constant agony like theres something inside me tying to rip itself through my abs, you could actually see lumps and bulges moving, as I was skinny not pretty)

Now after surgery, I feel back to normal albiet with some difference, I have a Stoma, (which basically means I wear a bag to collect my shit. Just Google ileostomy/ Stoma etc if you dont know what it is, you dont have to though)
I take azaithroprine tablets everyday, I acidently missed one day and had a flare up, then Mum got mad at me 'dont forget to take your medication its important bla bla'
If I dont eat for a long period of time I get pains and start having flare ups, so I make sure I eat within 4 hours , I have to go toilet 6-10 times a day to empty my bag, gotta change the bag everyday, took me awhile to get used to it by staring in the mirror and crying at my appearance, only recently managed to gain confidence to go out with friends

I cant eat healthy have to eat junk food basically, its a bit more to it than that but thats the jist of it In one sentence.

Other than that all is well ( had a flare up twice since operation, not had one for 6 months, hopefully never again)

Oh I dont get tired now, and im back to normal iron levels and I go Gym, not like I used to but its a start :dance:

Hey Mylo, welcome to the forum. Im sorry you're dealing with this, but very glad you've found us. Your story sounds pretty similar to mine, except I was diagnosed with coeliac frst not crohns.

Your doctors can prescribe medications to help with your bathroom issues and iron supplements to help to get the aneamia under control. I find the white, sugar coated ferrous sulphate ones are the only ones I can tolerate. If you can't tolerate any of the tablets then you can ask your doctor about injections of infusions that go straight into your bloodstream and so shouldn't cause the digestive side effects.

If you have problems with fruit and veg, some people find it helpful to juice them so that it breaks down the fiber, meaning that its easier to digest and you still get all the good natural vitamins and minerals.

Don't be embarrassed to talk about your symptoms and ask questions here, we're all in the same boat and we're all here to help you the best we can and give you lots of support.

Dude,I can only think what you are going trough.
Well during my flares, I can not even get out of bathroom, and can only wish to go on a concert or something.
Going to public places is really difficult for me, because I always have to look for bathroom, and if I am with somebody that I have started seeing only recently, because of how long I stayed in bathroom(10 to 15 mins) I have to make up things like I got sick and so on so on.
But other than that, those are some of my troubles, that is the problem of bathroom I just hope that it does not get any worse.
Doctors say to me :"stop stressing out and etc "because I also have Gastritis and they relate it somehow to flares too. I admit, I am really sensitive person, but I do not think that it has that big effect of flares and everything. :ack:
Anyway, hope you will get better ika:

^^ thats good advice
I did find ferrous sulphate the nice iron supplement, but due to puking everything up, it had no affect

Mylo said:

Dude,I can only think what you are going trough.
Well during my flares, I can not even get out of bathroom, and can only wish to go on a concert or something.
Going to public places is really difficult for me, because I always have to look for bathroom, and if I am with somebody that I have started seeing only recently, because of how long I stayed in bathroom(10 to 15 mins) I have to make up things like I got sick and so on so on.
But other than that, those are some of my troubles, that is the problem of bathroom I just hope that it does not get any worse.
Doctors say to me :"stop stressing out and etc "because I also have Gastritis and they relate it somehow to flares too. I admit, I am really sensitive person, but I do not think that it has that big effect of flares and everything. :ack:
Anyway, hope you will get better ika:

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Yea Im in the same boat, when im out im not as confortable as I used to be, always looking for public toilets even if I dont need them, I get paranoid aswell, but you get used to it after awhile.

And you shouldnt hide your troubles, just tell the truth, you will find that people are actually very kinda and helpful if they know your problems, saying that I know it can be hard to let it out in the first place as its in the nature to think some people will 'not' be helpful.

Thats my advice, its what I did as tbh I dont give a dam what other people think, if they dont like me for who I am then screw them, its not like I chose to have crohns is it lol, and guess what everyone I knew beforehand are still my friends and treat me the same as before

I would definitely ask your doctor to help control the D. Its not a long term fix but it will help while you get things under control so that you can at least leave the house. I know its hard to talk to people about the condition but people are generally very understanding of illness, and if they aren't then they aren't worth your time anyway.

Stress can and does have an effect on IBD, even if we dont see it directly, however just telling you to "stop stressing out" isnt going to help. Feel free to voice your concerns, even if you just have to rant, we will all understand. If your doctors aren't up to scratch you are always entitled to a second opinion.

Feel free to PM me if you'd like to chat about anything.

Shaanaleem92 said:

Yea Im in the same boat, when im out im not as confortable as I used to be, always looking for public toilets even if I dont need them, I get paranoid aswell, but you get used to it after awhile.

And you shouldnt hide your troubles, just tell the truth, you will find that people are actually very kinda and helpful if they know your problems, saying that I know it can be hard to let it out in the first place as its in the nature to think some people will 'not' be helpful.

Thats my advice, its what I did as tbh I dont give a dam what other people think, if they dont like me for who I am then screw them, its not like I chose to have crohns is it lol, and guess what everyone I knew beforehand are still my friends and treat me the same as before

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Thank you very much, and I do realise that, but it is still so uncomfortable and embarassing no matter how close I am with a person

valleysangel92 said:

I would definitely ask your doctor to help control the D. Its not a long term fix but it will help while you get things under control so that you can at least leave the house. I know its hard to talk to people about the condition but people are generally very understanding of illness, and if they aren't then they aren't worth your time anyway.

Stress can and does have an effect on IBD, even if we dont see it directly, however just telling you to "stop stressing out" isnt going to help. Feel free to voice your concerns, even if you just have to rant, we will all understand. If your doctors aren't up to scratch you are always entitled to a second opinion.

Feel free to PM me if you'd like to chat about anything.

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I guess you are right Thank you for your support