New to this. ....

http://www.crohnsforum.com/showthread.php?t=18502&highlight=tube

Hiya Dana
and welcome

You might be interested in this thread ^ if you've not already found it!
Lots of teens on here for you to talk to. You can PM them and ask lots of questions, glad you found us, hope you enjoy the forum.
lotsa luv
Joan xxx

Edit, I see you've already found them! send a few PMs to them if you don't get a reply. xxx

thank you so much

Hi Dana and welcome to the forum.

scott

Hi Dana,

I'm so sorry you were diagnosed with Crohn's! My son was diagnosed with Crohn's in May; he just turned 17 in July. He also did the tube feeding for six weeks with no food through an NG tube. The 'no food' is tough, eh? :yfrown: My son actually started watching the Food Network - said if he couldn't eat it, he could at least enjoy looking at it! (couldn't figure that one out??? :ybatty: )

It sounds like you're keeping the NG tube in all the time (my son inserted it each evening and removed it in the morning). But, if you're wearing it all the time, I can certainly understand that it'll be a bit awkward at school at first. But, I'm sure people will only ask about it at the beginning and will stop noticing it fairly quickly, especially as it'll only be for a couple of weeks (right?). Everyone's different but my son was really open about his diagnosis with everyone and, I think, because he was so 'casual' about it, everyone reacted the same way with him. But, I can still understand that it will be a bit hard.

He was able to adjust the speed on his pump so that his feed would run 7-10 hours per night (which could accommodate a 'later' evening). Each evening he inserted the tube and removed it before school. Certainly wasn't his favourite thing to do, however, he managed it without TOO much of an impact on his life.

While I can't speak from personal experience, only from watching my son, it honestly only took him a 2-3 days to really get the hang of inserting the tube each evening and it truly doesn't bother him at all to do it. Initially, I helped him each evening, but now he inserts it in less than 10 seconds (had me 'time' him once! :ylol: ) using only one hand. He is still doing it as a 'maintenance' treatment (does 1/2 dose, 5 nights per week). Let me know if you have any questions about trying it and I'll answer as best I can...

He has done really well with this treatment, so I hope it works well for you as well! :rosette2:

Good Luck!

Tesscorm said:

Hi Dana,

I'm so sorry you were diagnosed with Crohn's! My son was diagnosed with Crohn's in May; he just turned 17 in July. He also did the tube feeding for six weeks with no food through an NG tube. The 'no food' is tough, eh? :yfrown: My son actually started watching the Food Network - said if he couldn't eat it, he could at least enjoy looking at it! (couldn't figure that one out??? :ybatty: )

It sounds like you're keeping the NG tube in all the time (my son inserted it each evening and removed it in the morning). But, if you're wearing it all the time, I can certainly understand that it'll be a bit awkward at school at first. But, I'm sure people will only ask about it at the beginning and will stop noticing it fairly quickly, especially as it'll only be for a couple of weeks (right?). Everyone's different but my son was really open about his diagnosis with everyone and, I think, because he was so 'casual' about it, everyone reacted the same way with him. But, I can still understand that it will be a bit hard.

He was able to adjust the speed on his pump so that his feed would run 7-10 hours per night (which could accommodate a 'later' evening). Each evening he inserted the tube and removed it before school. Certainly wasn't his favourite thing to do, however, he managed it without TOO much of an impact on his life.

While I can't speak from personal experience, only from watching my son, it honestly only took him a 2-3 days to really get the hang of inserting the tube each evening and it truly doesn't bother him at all to do it. Initially, I helped him each evening, but now he inserts it in less than 10 seconds (had me 'time' him once! :ylol: ) using only one hand. He is still doing it as a 'maintenance' treatment (does 1/2 dose, 5 nights per week). Let me know if you have any questions about trying it and I'll answer as best I can...

He has done really well with this treatment, so I hope it works well for you as well! :rosette2:

Good Luck!

Click to expand...

I'm so glad your sons going well. And it is really hard not eating food for such a long time. I'm only on my 2nd week and 6 weeks just seems so far away.
I started watching the food network too. I usually watch it when I take my formula, it makes me think that im actually eating the food on tv and not my formula. It's kinda funny/weird, but it helps.

I think i'll try what your son did for school; have my tube taken out in the morning and have it back in at night.
But what did your son do during the afternoon at school? :confused2: Did he just drink water all day? He must have been really hungry. :\

And I just want to say thank you, this was alot of help to me and my parents. This is all new to us and we were trying to figure out what to do. So thank you again :rosette2:

Hi Dana,

My son was allowed clear broth (we used the Campbells chicken or beef broth), freezies, gatorade, clear juice (apple, white grape), jello (altho he doesn't like Jello). During the day, I would send him broth to have at lunch and the school's office kept freezies for him. He was hungry but it seemed manageable during the day - he would get hungrier into the evening (if he was staying home, he usually started the feed at 9pm). At 'dinner' he would have broth again - sometimes for variety, he would mix chicken AND beef together. LOL I really felt for him and feel for you! I didn't enjoy one meal during the six weeks knowing he couldn't eat! You guys are incredible to be able to do this! If you are allowed broth, it might help a bit. Just a heads up, the dietitian warned us about this and she was right - at about 3-4 weeks, it got more difficult for him to go without food. It was just a bump in the road and he got through it but, it was a bit harder for a week or so.

The visiting nurse also told us that the feed did not have to be 10 hours straight, that it could be split up. We didn't learn this until he was almost done the six weeks but he did come home a couple of times, do one to two hours of the formula and then go out and continue the balance when he got home. He wasn't sure if it helped take the 'edge' of the hunger as he was out and busy so wasn't really thinking about food during those evenings. And, I think he just didn't want to bother putting the tube in, taking it out, and putting it in again... but, if you're hungry after school, you could try it for an hour or two and see if it helps. (But, ask your doctor first! It was just the visiting nurse who suggested this, not his GI!)

If you have questions re inserting the tube, let me know... if I don't know the answer, I'll ask him. The nurse told him he might find one side (of his nose) easier to use than the other... he did and only does it on his left side. So, if you have problems with one side, try the other. Also, insert the NG tube while drinking water... helps you 'swallow' it.

Hope this helps... I know it's a lot to learn and adjust to... for you and your parents!

Good luck!

P.S. Forgot to mention... He is EATING now... the maintenance therapy (formula) is in addition to regular food.

Tesscorm said:

Hi Dana,

My son was allowed clear broth (we used the Campbells chicken or beef broth), freezies, gatorade, clear juice (apple, white grape), jello (altho he doesn't like Jello). During the day, I would send him broth to have at lunch and the school's office kept freezies for him. He was hungry but it seemed manageable during the day - he would get hungrier into the evening (if he was staying home, he usually started the feed at 9pm). At 'dinner' he would have broth again - sometimes for variety, he would mix chicken AND beef together. LOL I really felt for him and feel for you! I didn't enjoy one meal during the six weeks knowing he couldn't eat! You guys are incredible to be able to do this! If you are allowed broth, it might help a bit. Just a heads up, the dietitian warned us about this and she was right - at about 3-4 weeks, it got more difficult for him to go without food. It was just a bump in the road and he got through it but, it was a bit harder for a week or so.

The visiting nurse also told us that the feed did not have to be 10 hours straight, that it could be split up. We didn't learn this until he was almost done the six weeks but he did come home a couple of times, do one to two hours of the formula and then go out and continue the balance when he got home. He wasn't sure if it helped take the 'edge' of the hunger as he was out and busy so wasn't really thinking about food during those evenings. And, I think he just didn't want to bother putting the tube in, taking it out, and putting it in again... but, if you're hungry after school, you could try it for an hour or two and see if it helps. (But, ask your doctor first! It was just the visiting nurse who suggested this, not his GI!)

If you have questions re inserting the tube, let me know... if I don't know the answer, I'll ask him. The nurse told him he might find one side (of his nose) easier to use than the other... he did and only does it on his left side. So, if you have problems with one side, try the other. Also, insert the NG tube while drinking water... helps you 'swallow' it.

Hope this helps... I know it's a lot to learn and adjust to... for you and your parents!

Good luck!

Click to expand...

Hi, :bigwave:
I'll ask my GI if I can have broth for the last week. I miss the taste of food so much.

Re-inserting the tube scares me abit. I'm used to having the tube in but taking it out and putting it back in is a bit hard. I just hate the feeling of something going down my nose and down my throat. :yfrown:

Thanks

Hi Dana
Sorry to hear of your dilemma. I have periods on enteric feeds from time to time when the Crohn's flares up but take these orally. Can't you just drink them? I know the stuff generally tastes awful but it might be better than having an NG tube in.
Best wishes

Hi Dana.

This will probably sound trite, but believe me, high school only matters while you're there. All those social circles that seem so important to you right now will be the shadow of a memory in your mid twenties. You'll still have some of your old friends and you'll still remember some of your old enemies, but none of it will be relevant to your life anymore.

So, while it's undeniably tough right now, there is light at the end of the tunnel. High school stinks for EVERYBODY. It just stinks a little more for chronically sick people like us.

Good luck to you, and don't take abuse from the unenlightened too seriously. It ends. People grow up.

Hi Tay - Unfortunately, I don't think we have the drinkable formulas available in Canada. My son's dietitian told us that she was hoping that Modulen would be launched in Canada sometime this year (hasn't happened yet). I've seen some people mention Peptamin (spelling???) but these members were all in the US so I'm not sure if this is available in Canada. But maybe someone else on the forum has found some in Canada???


Dana - I think the tube is sort of like learning to put in contact lens or giving yourself a needle. Its really scary and hard :yfaint: the first few times but then becomes really easy. Do you have a visiting nurse (or can you get one)? We had the option of having one come daily for a few days (through a government agency - can get you the name if you'd like). I've never tried inserting the tube so I really don't know what it feels like but, my son said it sort of feels like when you get water in your nose (not sure if he still feels that or if that was just the first few days...). But, with no exaggeration, he really did have the hang of it within 2-3 days and inserting the tube really doesn't bother him at all to do it now. (And, apparently, removing it is nothing at all...)

Good luck, hon. Its really tough for you guys (teens/kids) to have to deal with this stuff! Sucks, eh!!!! :voodoo:

Tay said:

Hi Dana
Sorry to hear of your dilemma. I have periods on enteric feeds from time to time when the Crohn's flares up but take these orally. Can't you just drink them? I know the stuff generally tastes awful but it might be better than having an NG tube in.
Best wishes

Click to expand...

Hi, Tay
the formula I have to take is all broken down so it taste awful and yucky. :thumbdown:
It would take me forever if I had to drink it.
Thanks for the advice though.

Tesscorm said:

Dana - I think the tube is sort of like learning to put in contact lens or giving yourself a needle. Its really scary and hard :yfaint: the first few times but then becomes really easy. Do you have a visiting nurse (or can you get one)? We had the option of having one come daily for a few days (through a government agency - can get you the name if you'd like). I've never tried inserting the tube so I really don't know what it feels like but, my son said it sort of feels like when you get water in your nose (not sure if he still feels that or if that was just the first few days...). But, with no exaggeration, he really did have the hang of it within 2-3 days and inserting the tube really doesn't bother him at all to do it now. (And, apparently, removing it is nothing at all...)

Good luck, hon. Its really tough for you guys (teens/kids) to have to deal with this stuff! Sucks, eh!!!! :voodoo:

Click to expand...

Good morning,
We don't have a visiting nurse, but my mom was taught how, cause I was too scared to do it
Good luck to your son and you and your family. :hug: and it does suck, your life changes when the doctors tell you that your sick with something serious.

HI tesscorm, i am take modulen right now by tablet form. along with other medications. i don't know if you meant tablet form or liquid form.

Hi Scott, hmm, that's interesting about the Modulen tablets, I'd never heard of a tablet form at all. It's certainly something I'll look into... my son prefers the tube to any shakes, however, I'm sure would prefer athe convenience of a tablet to the tube! If you don't mind me asking, 'why' do you take the Modulen? Only asking because I've never received a clear answer as to what this therapy is actually meant to do???

Maybe you can enlighten me a bit regarding this therapy. When my son was initially diagnosed, he was prescribed six weeks of enteral therapy (with Tolerex). Other than Nexium (antacid), he has been prescribed no medication. My understanding of the initial 6-week treatment was that the formula was well tolerated and easily digested, would allow his bowels to rest while giving him necessary nutrition and helping him regain his weight. Once the six weeks ended, his maintenance treatment has been to continue the Tolerex at 1/2 dosage daily, 5 nights per week for one year. At the time, I asked what was the reason for the continued Tolerex as he had already gained some weight back and would now able to eat all foods (obviously no longer giving bowel rest) and how it would keep him from having another flare. The answer I was given was that they (doctors, dietitian) didn't know exactly why it worked but that studies had shown that continuing the Tolerex at the maintenance rate maintained remission.

My 'guess' is that the continued nutrition helps his body fight inflammation and is continuing to help him gain weight; I'm also thinking that perhaps the formula provides a 'coating' for his intestines. Is this, at all, what you've been told?

I'm am very, very happy to keep going with this treatment as its allowed him to completely recover without medication side effects. But, I wish a had a better understanding of why it's working???

Also, thank you for mention the Modulen tablets! - my son is currently at a children's hospital and will be transferred out next year. His dietitian has 'warned' me that many adult GIs do not follow the nutritional therapy so I've been worried about what will happen to him next year... so am glad to hear about a Canadian adult on this treatment!

(Sorry Dana - didn't mean to steal away your thread onto slightly other issues but hopefully this info will also help you!)

Tesscorm,
Don't worry about it. I'll take all the info I need to understand.

Good luck Dana you can always tell people the tube is there to keep you inflated since you sprong a leak. LOL
No all jokes aside, I wish you best with this treatment, teenages are funny people I know I have 2, but for the most part share your thoughts with people when thay ask, crohns is a debilitaing issue and we need to share our issues with other so they get an understanding of it. I personally would rather have my leg cut off than have crohns at least the problem would stop.
Hold up your head high and and carry a small air pump and when they stare get it out and act like your pumping yourself up, laughter is one of the best ice breakers.
May your high power be with you.
Eric

HI tesscorm, the drug modulon generic name (Trimebutine maleate) is a antispasmodic agent with some affinity for opiate receptors and significant anti-serotonin activity. Serotonin neurotransmitters are stored in CNS but is mostily stored in the gut. when activiated they can stimulate intestinal smooth muscle contractions causing painful cramps.
Modulon works against the sertonin receptors which is responsible especially pain relief and controls spikes and contractions. it works by decreasing the bowel motility and relieves of the spastic colon. So basically they help in stomach pain and bowel cramping that's why i take it three times with meals. you can get in tablet form or liquid form which ever you perfer. best wishes

scott

Eric B said:

Good luck Dana you can always tell people the tube is there to keep you inflated since you sprong a leak. LOL
No all jokes aside, I wish you best with this treatment, teenages are funny people I know I have 2, but for the most part share your thoughts with people when thay ask, crohns is a debilitaing issue and we need to share our issues with other so they get an understanding of it. I personally would rather have my leg cut off than have crohns at least the problem would stop.
Hold up your head high and and carry a small air pump and when they stare get it out and act like your pumping yourself up, laughter is one of the best ice breakers.
May your high power be with you.
Eric

Click to expand...

Thank you.
That joke made me laugh and it made me feel alittle better. :ybiggrin:
Dana

Hi Scott,

Thanks so much for all the info but I think we're speaking of two different treatments. The Modulen I am referring to is a nutritional therapy. It is the 'shake' (drinkable) version of the formula he is now using through an NG tube. It is not a drug. But, thanks again for your reply! :ybiggrin:

T