giving up

hello my name is B. I recently got diagnosed with Chron's disease and its just put me through hell and just a great amount of stress. I'm 18 and i was diagnosed when i was 17 to make a long story short, my doctor told me that i have the worst case of chrons he has ever seen, and because it took them so long to figure out what was wrong with me, i had many many problems. Within the last 2 year Ive seen 16 different doctors, had 10 different surgeries for numerous reasons. Ive been on every single medication for chron's that you can think of. I was on prednisone, methotreate, any many other ones that i cant even spell. At a moment in my life i was taking 14 pills a day and a shot once a week, and even while doing that and watching my diet i still had very bad pain. Ive been in the hospital many times and most times i would stay as long as a month. I missed a lot of my junior an senior year because i would have to have surgery and after care, and once it was time for me to go to college i wasn't able to go to the school i wanted to go to because my doctor said it would be safer for me to stay here until my Chron's was "stable" enough for me to be living on my own. I would cry myself to sleep every night and i would wonder why this all had to happen to me. I would try and talk to my family and close friends about it but none of them really knew what i was going through and plus i felt like they just looked at me different every snice i told them. never have i met anyone else that had chron's but i wish i could. i also feel like chron's is just taking over my body, as much as i try and fight it just always wins. So because things were getting really bad my doctor decided to start me on remciade. it took me awhile to get started because i have no type of health insurance what so ever its really hard to do things. so far ive had two infusions and things are getting bad..the stomach pain has gone down a little but everything else in my body is getting worst. Ive had 3 UTI's back to back within the last couple months. I just now got an ear infection and strep throat. and i started breaking out with fungi on my face and theres other things as well that i rather not say...none of these things ever happened to me before and my other doctors are telling me this is all cause of the remcaide. Ive come to the point in life were i just don't know what to do or who to talk to. I really feel like im alone on this and i dont care weather i leave or not. I deiced on my own today that im no long going to take the remcaide. if all this can happen from just taking it twice im pretty sure its going to get worse. i don't know how or even if im going to tell my doctor. but i wonder if i just out of no where stop if something else will happen. I just dont know what to do. If anyone can help me or give me some kind of advice it would mean the world to me. thank you.

its ok and thank you, but no i have never heard of that. what is it?

Well, at least an elemental diet won't give you infections! Your immune system has probably been so compromised by the surgeries, meds, uncontrollable Crohn's and stress, that's probably why you're getting all the infections. Anyway, I'm on an elemental diet: an elemental diet is one where all the nutrients have been broken down into their simplest, most easily digestible, forms. The idea is to give your bowl a rest while you're on it and get you into remission. You can't have anything else except the elemental formula for as long as you're on the diet, which normally lasts from 4-8 weeks. You can drink them or have them delivered via a nasogastric tube. I've just finished the first week of an elemental diet and am drinking something called Elemental 028. (I don't think that's available outside Europe; if you're from the US, I'll look up US alternatives for you.) The drinks are pretty revolting, I have to say; just about drinkable without gagging, that's about the most I'll say for them.

Anyway... The advantages of an elemental diet is that it won't give you side-effects and it has a good track record of getting folks into remission. The disadvantages are that it's difficult to follow and the Crohn's tends to come back after the diet is over. Not always immediately, but sooner or later. (Same goes for Pred or surgery, though. Nothing knocks Crohn's on the head forever, unfortunately.)

I dunno if that is a feasible option for you. I hope so because it seems like nothing else is working and I feel for you: no teenager should have to go through that :-/

The elemental diet is hard to follow, I can't lie about that. One way around it may be to have nasogastric feeding done at night time, so you don't have to worry about eating anything during the day. I've not had a nasogastric tube put in, so I can't tell you what it's like from personal experience. But in a way it has to be easier than trying to get 8-10 cartons of a liquid that you really don't like down you every day. An alternative to the rather grim elemental drinks are the somewhat more palatable polymeric drinks. They aren't elemental - they have whole proteins instead of amino acids in them - but apparently recent studies have shown them to work about as well as elemental drinks. An example of polymeric drink would be Fortisip and it doesn't taste too bad; bit like Ensure. Again, don't think you can get that outside of Europe, but you could get an equivalent to it.

There is also the SCD. It sorta works similarly to the elementary diet, not by resting your bowel, but by eliminating all the foods you could possibly be intolerant to. The idea behind that is that complex carbohydrates are poorly digested in the bowel and thus provide 'food' for the bad bacteria who live there - the bad bacteria are basically the ones who attack your gut, leading to the Crohn's disease we all know and love. In practice, that means eliminating from your diet all grains, all dairy, and all sugar apart from honey. Again, you have to be pretty motivated to stick to it, but at least it involves food this time!

Moving away from food at long last, LDN = Low Dose Naltrexone. (Don't forget the 'low dose' bit. Naltrexone means something quite different. I found this out the hard way years ago when I asked a doctor about it, she looked it up, and gave me a funny look.) I can't remember that much about LDN anymore, but I was interested in it a while ago, obviously. Anyway, as an alternative therapy it is safe and it works for some people, so it is definitely worth a try. The only thing is, GIs seem strangely reluctant to prescribe LDN; I don't know why. You might have to search for a GI who will agree to prescribe it for you.

Anyway, to sum it up, I think you are virtually at the point where you can/should start looking into diet and other options. I don't know if the surgeries involve having bits of your bowel removed, but if it does I'm a bit worried you might end up with short bowel syndrome, not something you really want to get, unless completely unavoidable.

That's a bit of a pessimistic note to end on, so I'll finish by saying I hope you get into remission instead!

pmedic thank you for letting me know those things..i will absolutely look in to those ideas as well. its crazy how i thought that i would always have to be on some kind of pills or shots or infusions for the rest of my life and then i find out about this site and all these people are using so many different other ways to control their chron's that are so much better then those hard core drugs....

Tsitodawg i really want to thank you for taking time out to write that for me, and actually caring.. I know i don't know you but based off what you told me and the amount of things that you went through i kind of feel like we are connected in a way. I'm really glad that i did find this site and that I'm not alone. it seems like you went through a lot but you found a way to still be happy and not give up..that's what I'm trying to do. I'm trying to find a way to not let this thing beat me and just try and live my life. i never knew about the scholarships and grants but now that i know I'm really happy and i want to go for that. i will say that yesterday when i made this first post i was at the lowest point i have ever been in my life and i was honestly thinking about throwing in the towel..i just couldn't take it all anymore but when i started to get reply's on my post and i heard other peoples stories i wasn't as sad as i was. It made me feel so much better and so happy, i was almost on this site all day. but from the bottom of my heart i want to thank you and i want you to know that you really, really helped me a lot with your post. My whole view point is different. I don't necessarily have a question about remicade but i did just start it and i got my second does just a while ago but its not working for me and the side effects are showing and my other doctors are telling me that the reason that these new things are happening to me is because of the remicade and i should stop. so what i was planning on doing was just going to stop it without telling my doctor and i don't know where it was going to go from there. but after i thought about it i didn't know if i just stopped it if that was such a good idea because something could happen you know? so i decided to tell my doctor so i went to his office today and i told him i no long wanted to take the remicade and i gave me my reasons why and i also told him that my other doctors told me to stop..but he said that i couldn't stop and that i shouldn't because my chron's is really bad remicade is the only choice that i have but i knew that wasn't true so i kept trying to prove my point and he ended with saying that if i choice to stop the remicade that he does not support me and that i should find another doctor. so I'm just going to keep my head up and look for another doctor....