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I'm 15 and i am suffering from crohns .....HELP?

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Crohn's Disease
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Posted 7/30/2009 4:11 PM (GMT 0)
hello. My name is Amanda, i'm 15 and i'm suffering from crohns.

 

I was diagnosed with crohns in 2007. I went through alot to get to where i am now. In fact i almost lost my life in september of 2008.  The situation was critical, and the disease was taking over. I went into the hospital for about 2 weeks and was later released with a feeding tube put in. It was alot to be thrown at me all in one shot. I in't know what to do. But after a few months i was doing really well. My doctor said i was responding really good to the treatment. So the tube was taken out in late november. I was doing good up until a month ago. We found out the details about the situation. Crohns affects your intestines cuasing inflamation, normal inflamation rate is around 3-4 . When i went into the hospital mine was 84. Then when i was doing well it was pretty close to normal, id say around 5. But now things have changed; my inflamation is rising agian ( around 13.5 last time i went for a check up) So i was given these shakes to take to kind of help with egtting nutrients so that my body can regain energy and try to heal the damaged intestines... but i just wouln't take them.  They don't taste very bad actually more like a wierd tasteing vanilla milkshake. But everytime i went to take it.. my head/concience would just say "no, dont take it, its gross", so then i wouln't take it. I want to try and get better! i want to take these shakes but it's just so stressful. I go tomorrow for another check up I'm so worried the news is going to be bad. After almost losing my life..... and going through much pain and suffering, i just on't want to do it anymore. I NEED help. If anyone out there has gone through this type of thing, or is going through it right now. Tell me your story.

 

I just don't know what to do.....

                                                    XoXo Amanda =(

 

 

 

Posted 7/30/2009 5:05 PM (GMT 0)

My heart goes out to you.

Most of us of this forum have gone through and close to what you are going through, I feel your pain. I almost died because doctor's kept telling me all I had was a virus in my stomach (it was CD all along) I've been through 3 different GI's and I'm still ending up in the hospital max every 2 months.I've tried remicade, which caused remi induced RA I went crippled for 8-9 months.Now on humira, but it's not helping the CD at all yet, was told it could take up to a year to feel the effectness of the humira.

I'm waiting to do another scope since 5 years ago. I'm and not looking forward to the news, but it may help all the pain in the end. I might have a blockage somewhere. every day of my life for the last 2 months being feeling nausea need to take gravol.

We are here for you, so vent whenever needed.

take care, hope your having a stress/pain free day!

Tracy

Posted 7/30/2009 7:18 PM (GMT 0)
Since you responded so well to the tube feeding originally, the shakes would probably be a terrific solution to keeping you in remission and avoiding having to be on tube feeding exclusively again. Maybe it would help to put them in a covered cup with a straw in it, so you wouldn't have to see or smell the liquid? Maybe also your reluctance to take them is a way of rejecting the realization that the disease isn't gone and you're going to have to live with it. As you note yourself, it's not really the taste that's bothering you, it's more of a mental block.
Posted 7/30/2009 8:15 PM (GMT 0)
Hi Amanda

  I was diagnosed my Sophmore year in highschool when I was 16.  I was sick for a couple years prior though.  I had lost over 60lbs  because I wasnt eatting hardly anything at all.  Finally it go to the point where I couldnt even sleep because the pain was so bad.  My doctor just kept saying it was just me "worrying" too much that was causin all the problems. Finally one night my Mom was fed up, and took me to the ER, there I had a colonoscopy and an endoscopy...the next morning I had an emergency resection.  I felt perfect afterwards, I was put on matience meds but after a year or so of taking them I stopped....big mistake.  Im now 22 yrs old and Ive had 4 surgeries within the last year.  1 resection and 3 for an abscess that is now a fistula...right now Im waiting for my health insurance to kick it so I can have surgery to fix the fistula.  My advice to you is to keep up with your meds, even if you are feeling good. Its a pain to have to worry about taking them but its well worth it. I hope you find comfort in this website with all of us. I know it was really hard for me to be able to talk to my friends about my condition, especially in highschool. I felt like no one understood, or that they just didnt want to know about it in general (theres a ton of gross stuff involved!)  Welcome to healingwell!

Posted 7/30/2009 8:42 PM (GMT 0)
Hi Amanda,

And welcome to Healingwell. Sorry for the reason you have to be here though. I was diagnosed just a couple months after I graduated highschool, and I too was extremely ill when first diagnosed. I was one of the lucky ones though in that I got diagnosed within 3 weeks of my symptoms starting, but I can tell you in that 3 weeks I went from 0 to severely ill rapidly.

I have to agree with MAG102886, once they get your Crohns under control, do be sure you always stay on some kind of maintenance med. I did much like she did and quit the medications. Only difference was I got an almost 20 year remission, but because it was med free, I completely obstructed and had to have emergency surgery.

Come here ask any questions you may have, even comment to other members. Welcome to our little corner of the world, where everyone understands what you are going thru.

Hugs
Gail*Nanners*
Posted 7/30/2009 9:18 PM (GMT 0)
Hello and Welcome, though I am sorry you have to be here. I was about 13 when I self diagnosed. My Mom had CD and I basically grew up watching what it could and would do to a person, so I was pretty aware of what was going on when my symptoms started. I was officially diagnosed 10 years later. I am 44 now and have gone through a lot of good times and a lot of bad times. I can understand you not wanting to take the nutritional drinks. Its hard to take things that we have to. It can be the fear of what it will feel like going through our guts, or just the icky after taste, or just the basic rebellion of not really wanting to admit that we "have" to take something. But in the long run, you really will be better off if you can head off a major flare by taking some minor precautions/medications.

One thing I have learned after all these years is that if you can't smell something, you can't taste it. So try holding your nose as you drink. You may look funny, but it works. This also works for all the nasty stuff they throw at us for preps and tests!
Posted 7/30/2009 9:47 PM (GMT 0)
Hello and welcome...wow, such a difficult thing to have to face at such an early age. I took it hard when I was diagnosed and I was a decade older!!! I have to agree with everyone here...keep up with the meds...and listen to your body...

Hmm...the shake thing...can you mix it with something else? Are these the only things you can have? (If it is the Ensure stuff, yuppers, that is sooo disgusting, but you may be able to use other brands, like carnation instant breakfast) I was wondering, cuz you might be able to make a "smoothie" of sorts and add something that tastes better ala Jamba Juice. There are a lot of different recipes, you can use soy milk, or yogurt or whatever your body can tolerate. Oh, there are things like "Juven" or "Benecalorie" that are given to patients who need to keep calories and vitamins up, but can be mixed with anything like cereal or cottage cheese...just a thought...

We're here to listen and give support. It can be kinda scary...and there are people who have gone through so much here...so just ask...
Posted 7/30/2009 10:23 PM (GMT 0)
thnx guys i didn't think i'd get this many replies so quickly lol. Its hard to talk to people especially your friends becuase, 1 they don't know anything about it (and it is hard to explain just like MAG102886 said it is pretty gross) 2 they havent experienced it so they can't really help you through the emotional part. which my main problem. I suffered depression my second semester of grade 9 and it brought my school marks down . I am trying my hardest to get better and stay happy. But i thank you for helping in response to the mixing the shakes idea. It is very hard to do so. when we went through the tests for crohns they also iscovered i am severly lactose intalerant, this also made the crohns worse. So this kind of eleviates the whole making smoothies idea . also i have a reatcion to lactaid milk ( naueasea within an hour of taking it) so we use soy sometimes. just like MAG said about her doctor saying it was her worrying, i know how you feel, i had symptoms when i was 11 and my doctor kept telling us " your just getting ready to menstrate" well thank you doctor! Thank you for not even bothering youve made this disease as harse as it is. but hey, doctors can't always be right, afterall they told my mom she'd never have kids, and she was blessed with three of us (me being the first =D) so i guess if we try hard enough we can be blessed to , with a almost normal and healthy life :)
Posted 7/30/2009 10:25 PM (GMT 0)
I recommend being open and honest with your doctors, and asking for their advice and help.

It may be that you have an aversion to this one product, and that you may be more able to swallow a different brand or flavour. If your doctors know you're having trouble drinking those shakes, and why, they may be able to help you find a substitue.

I remember, when I was your age, they were trying to make me drink Sustagen in hospital, and I simply couldn't - it was so foul it made me feel like gagging every time. So, the dietitians did a bit of thinking, decided to try the Sustagen "pudding" instead and lo! suddenly I could eat it... and I actually really enjoyed it :-). Moral: don't be afraid to admit that you're having trouble, because it may be easier to find a solution than you expect :-).

Big hugs to you,

Ivy.
Posted 8/3/2009 11:02 AM (GMT 0)
Pudding actually sounds like a really good idea... dont suppose they have Scope-Prep-Pudding? Or Jello?

Anyway, you should talk to your friends. They may not understand, but they can still be a huge source of support. You can always find creative and sometimes hilarious ways to phrase whats going on with your Crohns so that they don't get grossed out. If my friends weren't willing to put up with the occasional rant about Crohn's, they wouldn't be my friends. After all, even though I don't center my life around Crohn's, it's still an important piece of my life.

As you learn more about what you can and can't tolerate (I'd start by avoiding caffeine, alcohol, and chocolate), you will be able to control your symptoms more directly. For example, the one food I can always rely on to make me feel better is spaghetti with mozzarella cheese on top. If I have a big day planned and haven't been feeling well, I'll have a big bowl of it for breakfast, and that usually blocks me up for a day, giving my guts time to get through the rest of my food before I need to use the restroom. You will eventually figure out your own versions of tricks like that to get yourself through the days when your meds just aren't cutting it.

My point is, the first couple years or so are the hardest. Once you get used to the idea of being a Crohnie, things like watching what you eat and talking about how colorful your poop is become second-nature. Your friends and family will adjust as well. Even if your symptoms don't improve, your life does.

edit: Also, I second the notion that you should be open with your doctors. Tell them EVERY disgusting little detail. They need to know! You won't gross them out.
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