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my doctor... just wow.

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Crohn's Disease
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Posted 8/9/2011 3:38 AM (GMT 0)
i feel like he's setting me up!

after a month of daily/nightly tube feeds, he told me i only had to do them nightly, 5 days out of the week.

that was july 7th.

i don't even know when i get to stop the tube feeds. :'(

i've had them all summer, sigh. IM TIRED OF THEM.

on top of the stupid feeds, i'm having friend drama. I'm 15, can i have a break please?

I'm so tired of being depressed.

I know, i know, people have it so much worse than i do.. but this is personal, and its not fun.

well, at least the internet listens..

 

Posted 8/9/2011 3:48 AM (GMT 0)
Tube feeds?? You mean like TPN thru a PICC line? Or do you actually have to do a nasal-gastro tube feed???

Oooh! I just read your sig. NG tube, eh? Bummer! Thank goodness they put me on TPN and a PICC line instead of an NG tube!!!!! I had an NG tube continuous for 6 weeks back in the 1970s. Not a fun time.

Forgive my ignorance: is the NG tube down continuously or do you remove and insert it each time??? I'm not sure which would be worse. Neither would be my idea of "fun".

Posted 8/9/2011 3:49 AM (GMT 0)
Hugs going out to you. I just got out of the hospital due to a blockage. This disease is frustrating but there are good days too. If we didn't have bad ones how would we recognize the good ones? Use websites like Healing Well to educate yourself about the disease. The doctors don't have time to tell us everything and we are all so different in our symptoms and reactions.
Posted 8/9/2011 3:55 AM (GMT 0)
CrohnieToo, tube feeds as in the NG tube. ):
and Noulls, yes, its VERY frustrating.
My doctors great, i'm just kinda upset because he didnt even tell me how long i would be doing these feeds, or give me a weight goal.
I'm back on the growth chart, i just wish i knew when i could stop doing this..
I'm 15, all my friends are hanging out, having sleepovers and stuff, and i have a tube in my nose almost every night.
it sucks.. :C
Posted 8/9/2011 3:56 AM (GMT 0)
Also, i take it out and reinsert it every time..
Posted 8/9/2011 3:57 AM (GMT 0)
I see you had a resection in 2011. Have you been on tube feeding since the surgery or did you have a break between the surgery and starting the tube feeding?

I was thinking that maybe you were started on tube feeing right after the surgery. If that is the case the aim may well be to rest your gut whilst it continues to heal after the surgery. I would think that would increase your chances of a long remission.

Let us hope so anyway. A long, long remission could well make this darn tube feeding bit for so long worth while, donchya think??
Posted 8/9/2011 4:03 AM (GMT 0)
yes, i had the resection in April. I started the tube feeds on May 25th because after my surgery i guess i contracted C-Diff and got down to 76 pounds. i'm about 91 pounds now, but im kinda disappointed. my doctor said "what a great therapy this is," and "it works amazingly," and i've only gained 15 pounds. I thought i could do better, especially since i eat so much..
and now i'm depressed from talking about it.
Posted 8/9/2011 1:48 PM (GMT 0)
Hugs going out to you again today.
Posted 8/9/2011 4:49 PM (GMT 0)
Today is my friend's 23rd birthday. Tonight, he and the rest of my friends will be bar-hopping, collecting free shots and generally having a good time. Normally I'd tag along and be sober cab. But I can't. Symptoms are too severe.

So at least you're not alone in not getting to hang out.
Posted 8/9/2011 5:06 PM (GMT 0)
Alliex, the Crohn's disease could be the least of your worries. Honest injun. Celiac disease can be deadly. Do be sure to follow your therapy instructions religiously. It can also be difficult to Dx.

My brother in law went unDx'd for 2 years w/Celiac and thus untreated. We've come close to losing him 3 times this past year. He was on TPN in hospital but they say he can't be on TPN at home due to blood clots. We've been told we may have him around for 2 months or if we are miraculously lucky 2 years maximum due to the damage done to his colon those 2 years he was untreated.

They just can't seem to get ahead of it now. They said his colon is now just one long tube of scar tissue and incapable of digestion. He's been living w/the symptoms for 4 years now and only Dx'd and properly treated the last 18 months.

Avoiding gluten can be a nightmare - but it is NECESSARY. And expensive.

He is in Maine and we are in Michigan so we are getting the information second hand from his wife. I don't mean to scare you. Keep in mind he is in his late sixties, early seventies and went untreated for so long.

And I HAVE to say how much I admire you at 15 downing that NG tube and doing the TPN on your own every night!!!! That is impressive! I don't know that I could do the NG tube bit one time much less night after night. You sure have my respect and admiration, girl!!!! You're one tuff cookie!!

Good luck and God bless.

Posted 8/10/2011 5:23 PM (GMT 0)
Hi Allie
I agree with the others. You are one tough cookie and you are to be admired.

Please ensure to take care of yourself. If you are in the middle of freinds drama it can be very hard on you and can make you sick.

Please remeber, that you need to put yourself first until you get bettter.

Gentel hugs and healing thoughts

Dave
Posted 8/10/2011 11:18 PM (GMT 0)
i try, but if you read my signature, i also take Lexapro for depression. I'm stressed about everything. My dad has Crohn's too and he doesn't even understand. My mom wont TRY to understand. "I'm dramatic, i'm one of the lucky ones."
I'm just ready for this to be over with..
Posted 8/11/2011 1:07 PM (GMT 0)
Allie, I take it your father's CD is not so serious and debilitating as yours. Does your mother go w/you to your gastro appointments??? If so it would be worth your while to have a good talk w/your gastro about your mom's view of your response to dealing w/Crohn's so he can get thru to her just how serious your CD is as compared to your father's and just how serious CD can get and be. IF she doesn't usually go w/you get her to go w/you for at least one appoiintment and clue your gastro in ahead of time so that he has a good talk w/her. (((hugs)))

And try to keep in mind that it is SCAREY for a parent or spouse to see their child or spouse suffer so w/CD or any serious illness and feel so helpless but not be able to express their fear properly. Sometimes they resort to trying to encourage you by downplaying your illness and response to it. A twisted form of "tuff love" if you will. Keep in mind she is living w/both a spouse and a child w/this nasty DD and quite obviously just does not know how to handle the fear of the situation. It just is NOT easy to stand by helplessly watching our loved ones suffer and some of us just have a lousy way of dealing w/and expressing that fear.

Posted 8/11/2011 9:10 PM (GMT 0)
Next time your mom says you're lucky, politely point out that you're 15 and have a lifelong potentially debilitating illness and you eat through a tube. See what she says.

If she gives you some crap about how it could be worse, tell her that just because it could be worse doesn't mean it isn't bad now.

You're a tough kid, Allie.
Posted 8/11/2011 10:44 PM (GMT 0)
Allie,
Warmest Huggzzz to you. May your weight go to were it needs to be so you can stop the tube feedings and get back to being with your friends, but first those feedings will help you become stronger everyday that you nourish you body. You have been thru a lot an I admire you!!! Huggzzz!!!

You just keep a positive outlook and stay tough.

You are young and you will find the doctors DON'T tell you things you want or need to know, and in those few short minutes they blurt out what our treatment protocol is going to be, we always have questions we forget to ask.

So my advice for what it is worth, is I keep a notebook and I journal things, like on this day this is how I felt. Why am I on this? And okay you want me to do this for how long? this way when I go to the doctor I am armed with info so I can ask about my care and keep on top of my treatment. If I don't understand something I ask tons of questions! And I write down what they tell me, this way I have the answers and I don't feel like I am left in the cloud of unknown with my treatment.

You stay strong sweetness!!! Huggzzz Leslie
Posted 8/13/2011 4:20 PM (GMT 0)
Thanks everyone, my mom says she's going to call my GI monday about seeing if i can try to ditch the tube and gain weight on my own, and she also said she's going to get me to see a therapist. I just hope that things will get better. I'm tired of being depressed and emberrassed about my weight.
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