Just kind of upset I suppose.

[emmaaaargh]

I haven't posted here in so long! At least I've been checking every day :ysmile:

Okay here goes, before I explode...

I'm having a lot of issues with nutrition right now. When I was on steroids everything was perfect! Sure, we were spending more money on food, but at least I HAD an appetite. I went up to being 42kg! It was amazing, and I even started to think about doing PE again at school.

But then the course of pred finished, and a few weeks later they started me on Aza. I did alright, but as side-effects I got a bit nauseous and my appetite went down... and that never really went away. I'm having a really, really hard time eating more than 1500 calories a day, and that's being generous. Now I'm 37kg. I'm just not hungry, and it's horrible. I don't know what to do! Eating little but often is helping a little but that won't be possible when I go back to school. And another school-related thing - my teacher has Crohn's! I should feel grateful, but it just makes me feel weak because we were in a lesson (my parents didn't approve of me doing PE, but I insisted) and we were sprinting for warm-up and I just couldn't, I really couldn't, and she was shouting at me to go faster and it didn't help and I was last. I don't know why, but I just sort of broke down in tears! I passed it off as having stomachache (lie, but whatever) and then instantly felt guilty when she told me she was on Aza too and she was fine now. That's great, but I don't even know if it IS working for me. So I've just spent the entire holiday not wanting to do PE anymore and I don't know why I keep feeling so irritated!

Getting back to my original point... (sorry, I derail often) I cannot stomach any form of EN. I'm serious. Modulen was vile in every way, Elemental 028 I did for six weeks once and then was incapable of doing at any point after that. My parents have tried to buy me some fortified milk stuff from the supermarket, and that won't take either! I'm not sure what's wrong with me. Can't there be something out there I can stomach? My dietician said that since my consultant agreed I didn't need to be on a strictly elemental formula she could give me something more palatable, but now I'm so down I bet that won't even work - and I'm not going to my GP until Tuesday!

I just feel so down. Yesterday my mum snapped at me and we both ended up in flights of tears. I told her (kind of - she frightens me sometimes!) that I wouldn't mind considering an NG tube, but I think she thinks you have to be in hospital for one of those and I don't think she's fond of the idea.

I just hate thinking I'm not strong enough for this stuff. But wow, that was so long. Thank you for reading this - it was nice to get off my chest.

 

[Jennifer]

Hey emmaaaargh and welcome back.

You were doing great on the Prednisone and then once they stopped that they added Aza? Aza doesn't work as quickly as Prednisone so its possible you may need a course of steroids while the Aza gets a chance to start working. Have you ever taken Entocort? Its a steroid too but has less side effects than Prednisone. I've found it easier to take long term than Prednisone.

As for your teacher, what works from one doesn't work for another. You probably aren't even on the same dose as they're an adult. Its great that your teacher is feeling well good for them but you're not so they just need to get over themselves. You're trying to get out of a flare here and don't need that added stress. Stress makes people irritable and so does lack of nutrients,

Which brings us to the EN. To my knowledge you do not have to go to the hospital to have a tube put down your nose. Its pretty straight forward. I didn't like it personally but who knows, you might handle it just fine. You're like me to where things that taste bad just aren't going to go down. Its not us trying to be difficult or get attention, we'll seriously throw up and that's not very productive now is it?

Ah had to look it up but I knew I read about it in other threads of people putting in their own tubes at home.

Nasogastric Feeding Tube

"Benefits of this form of Enteral Nutrition include that there is no involvement of the mouth and throat in the digestion process. Additionally, a patient can be trained to connect the NG tube themselves, so that they can receive this treatment in the privacy of their own home. They can disconnect the tube for portions of the day so that they can go out in public normally." http://www.crohnsforum.com/wiki/Enteral-nutrition

Edit: DustyKat might know a member on here who does the NG tube for their child unless the child is able to do it themselves by now, I'm not sure.

When I had an NG tube put in I remember being told to swallow a lot, swallow swallow swallow. It would coil in my mouth sometimes and we'd have to start again. Sometimes I'd gag instead of swallow but we got it in there eventually. Was my first and only time I've had it done though. I'm sure you get pro with time.

 

[DustyKat]

Thanks Crabby.

emmaaaargh...:hug:

We have a number of parent's on the forum that have or have had their children on EN, both orally and via NG, of all ages.

Tesscorm, cohnsinct and imaboveitall are just three but there are many more. They will now be tagged into this post but I will also link you to a thread in the Parent's with Kids with IBD forum...

http://www.crohnsforum.com/showthread.php?t=36345

...if you look further at the forum you will find many threads about it. Also happy has vast experience with EN and elimination diets...

http://www.crohnsforum.com/showthread.php?t=31028

As Crabby has said, initially you are in hospital but that is only so they can teach you about the feeds and how to insert the tube. Tesscorm's son inserts his most nights as he continues to use EN as a supplement to his normal diet. I think there is also a video around you can watch about inserting the tube and I'm sure one of the parent's taped their child inserting the tube and sent it to another parent privately, was that Stephen Tess??? One of the parent's would know where the youtube link is.

I hope that helps hun. :heart:

Dusty. xxx

 

[Tesscorm]

So sorry you're having such a tough time and it's certainly not your fault! :ymad:

My son does insert his NG tube every night. I did try to record him and send it off to another parent but just couldn't figure out how to do it (too technologyically-challenged here! :lol but I did post a link to a youtube demo on the thread link which Dusty posted (Kids on EN).

My son was in the hospital when he started EN and was taught by the nurse two or three times, after that, he did it on his own. He actually had very little problem with it... was very comfortable with the insertion (removal is nothing...) within a few days. As Crabby said, you have to 'swallow' the tube - he would insert the tube while drinking water and swallow the tube together with the water (now, he doesn't even use the water). I think the hardest part is getting over the 'gag reflex' when the tube reaches a certain point in your throat (the reflex passes once you pass this spot). The girl who demonstrates it on the youtube link does a great job, the only thing is she is so precise that it seems to be a long process; in reality, it takes my son seconds to do before bed.

He ingests his formula overnight so there is no issue with taste! Some people do have some nausea but I believe this can be alleviated by slowing down the speed of the pump (there is a pump that pushes through the formula). Make sure that they use a small tube - some people have said the tube aggravates their nose - my son's size is 6-FR (this is infant size but has worked for him for over a year - by the way, he's 18 years old).

Hope that helps (and that the EN can help you!)... let me know if you have any other questions :ghug:

 

[Jennifer]

Ya I think mine was going too fast but I also didn't get up and use the bathroom when I needed to. I was on the phone and decided to hold it. BIG mistake. Everything happened pretty fast. Needing to pee quickly turned into emergency poop but before I made it to the bathroom I threw up. Threw up the tube, peed on the floor and well crapped my pants. Was all clear fluid (was a HUGE prep mixture of 2 gallons of nasty drink before my resection) though so that's good. Point is, if you need to go to the bathroom, GO. Obviously prep is different than EN though so I had other forces working against me.

Also, there are products out there that help reduce if not get rid of the gag reflex for a little while. I wasn't given any back then and didn't know about it. There are numbing throat sprays and numbing oral gels (for tooth pain and I hate mentioning it here but adult stores carry flavored ones). If I hadn't gagged so much inserting the tube would have been a lot easier.

 

[Tesscorm]

Oh my that sounds like it was a horrible experience!!! But, good point! My son has never had urgency problems but while he was on formula only, he did have diarrhea for the entire six weeks. This doesn't seem to be the case with everyone but our dietitien had warned us it could happen - in her words, what's going in is all liquid so what's coming out...

 

[UnXmas]

I'm having the same problem. Being underweight has been a problem for me for years. I don't know what to suggest. I started a thread in the diet forum about weight gain.

I'm sure you know all the normal stuff: high calorie foods, finding what's easy for you to suggest, supplements, eating little and often. I used to find a med called domperidone helped my appetite but somewhere along the way it stopped working.

Do you think your main problem is lack of appetite or malabsorption? Is there a specific complication of the IBD causing the problem now?
What medical assistance are you getting?

I was almost given a feeding tube once, but wasn't in the end. It sounded scary to me: I imagined the food being forced in when my stomach couldn't take it with no control over it. The problem was that nothing was being done to address the actual problem that was making me so full. (I have gastroparesis - my stomach literally does not empty its contents to the next part of the digestive tract like it should.) You need to have confidence your doctors are taking care of the problem and are looking at why you can't stomach the things they're giving you.

It's scary being underweight and feeling like you can't stop losing. Sometimes I just have to keep calm and take it one meal at a time. And if it's really not working remember it's a medical issue that doctors should adress seriously rather than leaving us to wonder and manage on our own. Diets are patients' responsiblity, but when diet alone isn't working, we need some professional input.

 

[emmaaaargh]

Thank you, to all of you! I've seen that video of the little girl giving instructions on how to put her NG tube in and I actually cried when I saw it because it was so inspirational.

I think the main issue is lack of appetite, which I've read can be caused by the Aza. My dietician has prescribed me almost every flavour of Fortisip and Scandishake and I just... I don't know, it just doesn't help that my mum keeps saying "there's got to be at least ONE you can stomach" because what if there isn't? I still haven't brought up the idea of an NG tube with her. I think she's afraid - one of the girls in my class suffered from an eating disorder and she's terrified I'm turning into her.

Apricot Fortisip and possibly Forest Fruits are out. The texture is like drinking yoghurt, although I think it'd be easier to chuck the straw in this case and just down it, even though that's always been IMPOSSIBLE for me. We're trying mocha in the morning, and it says a lot that I don't want to get out of bed because she's like a drill sergeant. I know with all my heart she wants me to get better and doesn't want to nag but I've always had issues with taste and texture and when she nags at me (and then says things like 'don't turn me into the bad guy') all of a sudden it's back when I had my surgery and I was more miserable than I've ever been.

I'm going for a blood test next week to check my 6-TGN levels. My gastroenterologist is still pushing Infliximab and I'm so tired of fighting with him I just want to give up and let him put me on it. I know you can go back on Aza, unlike the biologics, but I don't know if 2 months at a higher dose is enough time to have a noticeable effect and I don't want to give up until it's really been exhausted as a route. Or maybe I just don't want to admit that I've failed, since I'm still getting pain.

Wow, I only ever seem to post when I'm feeling negative! Oh well. I guess whatever happens, happens. If I get put on Infliximab, then that's that! Anyway, I'm pretty sure my parents won't complain about driving to London and the extortionate parking prices if I eat like I did when I was on steroids. Thank you guys again :ysmile:

 

[Absentminded]

Hey,

I'm so sorry that you're having such a tough time at the moment.

I've been on the fortisip and fortijuices for 8 weeks now. Uh huh! And I've found that the strawberry fortisips are pretty good. I don't know if you've been given any fortijuices, but I find that they do go down better, they're not so thick. I have apple, tropical and forest fruits. If you get them really cold they are much more palatable!
One other tip, my IBD nurse told me that I could freeze them, then let hem defrost slightly and eat them with a spoon like a slushie. Haven't tried it because I don't actually mind drinking them, but it's an idea.
I've got used to them now, I went 6 weeks with no food at all, just the drinks, but have been having a bit of food over the last 2. I've got less that 2 weeks left now, when I'm booked in for surgery.

Anyway, ramble, ramble....
Hope you find something that you like! Good luck and take care!