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05-08-2012, 10:42 AM   #31
Tesscorm
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I think Julie (imaboveitall - where are you??? ) said her daughter was sedated when they initially inserted the tube.
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
05-08-2012, 11:14 AM   #32
crohnsinct
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Tesscorm: I have been wondering the same thing about Julie and V...where are they? Probably off playing with poop! You are right she is the one who mentioned the sedation.
05-08-2012, 11:47 AM   #33
SarahD
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Hi Sandra, and Amy,
I have to say I found the Elemental 028 absolutely vile! You may be better off getting a selection of different nutritionally complete drinks to see which she prefers, as she is the one having to consume them. And I don't blame her for resisting the tube feeding!
There is research to show that feeds such as Ensure and Fortisip (which are far more palatable and have several flavors) are just as successful as the elemental feeds, and also Modulen. ('Fortisip Banana' was the only one I could tolerate long term.)
Good luck to you and your daughter.
So surprised you found the Elemental 028 vile, I like them quite a lot

Good luck with the 2nd try Sandra, fingers crossed Amy can tolerate this better.
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Symptoms from the age of 12. Mis-diagnosed with UC at the age of 13, and later diagnosed with Crohn's in January 2012 at 24 years old. Disease mainly in terminal ileum.


Current meds:
Azathioprine, Allopurinol, Calcichew D3-Forte, Fortijuice, Alendronic acid, Ranitidine

Previous meds:
Augmentin, Doxycycline, Lansoprazole, Asacol, Pentasa, Prednisolone, Entocort, Cipro, Flagyl, Elemental Extra 028
05-09-2012, 12:43 PM   #34
sandramaggie
 
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Hi everyone - just to let you know Amy now has the Elemental 028 - she was given 3 flavours - grapefruit - a big no and orange and pineapple - not to bad and berry fruits the best of the 3. Fingers crossed the things go a little more smoothly now - not eating is still a big issue but I am hoping that we manage to cope with that - once she is able to get out and about after regaining her strength it may become a lot easier. Never thought I would hear her begging for my meals!

Many many thanks for all your help advice and support - really appreciate it and I wish I could really verbalise how much better you have made me feel just by showing the interest.
05-09-2012, 01:00 PM   #35
Tesscorm
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Hope all goes well with the new shakes!
05-09-2012, 01:03 PM   #36
Sascot
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Good luck with the new shakes!
05-09-2012, 01:06 PM   #37
SarahD
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Glad to hear there's at least one flavour she doesn't mind There are more flavours which come in powdered form (banana, citrus, orange and cherry vanilla) which have a thinner consistency to the cartons. May be worth trying if Amy wants some variety.

I found the first couple of weeks on elemental really hard, but as I started feeling better it got easier. Hopefully Amy will see the benefits of the elemental diet and then it won't be so hard for her, and fingers crossed that she feels better really soon.
05-09-2012, 02:59 PM   #38
crohnsinct
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YAY BERRY!

So glad you found one she likes..they actually sound good!

Good luck!
05-09-2012, 03:11 PM   #39
sandramaggie
 
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Thanks to everybody - still having tears over the no food but fingers crossed we are strong enough to get through that
05-09-2012, 03:40 PM   #40
Twiggy930
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It is so tough because not eating is a hard thing to ask them to do.

I used a little bribery... 6 weeks of exclusive EN and we would buy him a new fish tank and get a piranha! I also used this reward to distract him at mealtimes as I got him to do all the research on what the tank would need etc. while the rest of us ate dinner.

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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
05-09-2012, 04:32 PM   #41
sandramaggie
 
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Thanks for that Twiggy930 - she wants her bedroom re doing so maybe that might get her through. Looks like we are going back to the hospital tomorrow - she is saying she can't stand taking the Elemental 028 now - not sure if it is a mental block she has about it now as when she had some earlier she said it was okay. Petrified of having the nasal tube in but maybe better of the two options for her. Going to bed now - think it is going to be another long day tomorrow
05-09-2012, 04:48 PM   #42
Twiggy930
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If she can bring herself to do it I think it is easier for the person getting the NG tube to insert it themselves. The trickiest part of the whole process is when the tube makes the turn to go down your throat. If you are doing it to yourself you can feel where this is but someone else doing it for you has to guess, which tends to involve more prodding. I know, however, that getting the courage to do it one's self is not easy. I admire all these kids for what they face and accomplish.

Re-doing a bedroom sounds perfect. Involves some research and planning, great distractions.

Good luck tomorrow!
05-09-2012, 05:43 PM   #43
my little penguin
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hope the NG tube goes smoother this time.

things to ask your GI for:
Gum chewing
dum dum lollipops most will ok
plain sugar- you can make cotton candy plain or pure sugar candy or sprinkle on shaved ice.
shaved ice is good for dinner since we all have "chewing" needs beside the actual food.
05-09-2012, 07:23 PM   #44
handle
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There are many unwell children who find enteral nutrition extremely difficult, and many who can be traumatized by tube feeding. It may be an unnecessary ordeal for them. In most cases there is no extreme urgency to immediately exclude all foods. A low residue diet (toast with cheese, scrambled eggs, boiled skinless chicken etc) can often ease symptoms enough to at least stabilize the child. Different types of liquid nutrition can then be added, and, if/when any are well tolerated they can be increased, and the low residue diet stopped.
Elemental feeds, which consist of broken down proteins, are notorious for being unpalatable, and hence often result in tube feeding. The 'polymeric' feeds such as Boost and Fortisip are far better tolerated. They taste a lot better because the proteins remain intact, and they are equally successful in achieving remission.
I wish hospitals/G.I's would take a gentle approach, finding a well tolerated drink before excluding all foods or resorting to tube feeding, particularly when it is not urgent.
Perhaps a few days on low residue foods, whilst trying out different options for the liquid diet, would be possible in her case.
All the best.
05-10-2012, 02:08 AM   #45
sandramaggie
 
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Thanks for the replies - will discuss food options - like the sugar for making candy floss - gave her candy floss making machine away only a few months ago -

will keep you updated but maybe at the hospital for 3 days as they train us to do it ourselves - just hoping they can give her some sort of sedative beforehand or it will not happenx
05-10-2012, 09:51 AM   #46
S mom
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Hi - I'm jumping into this conversation a little late but I just wanted to join in to say good luck with this treatment. My son (16 yrs) did 12 weeks of exclusive EN via an NG tube in the fall and, although it was a long time and took a lot of perseverance and dedication, it worked great in the end for him. There is no way he could have drank enough of the formula (he was on Peptamin 1.5 - totally yucky tasting).
He had no interest in inserting the tube himself so he left it in all the time. It needed to be replaced every 4-5 weeks and we went in to the hospital clinic for that. He was already in the hospital the first time the tube was inserted and we asked for sedation - they gave him an Ativan which basically knocked him out for the day - it was probably good, he slept through the first part when the feeling of the tube in the throat is so uncomfortable. He adjusted to it quickly after that and didn't really mind having the tube hanging there all of the time. His friends were great - no problems with going to school with it in... amazing.
As far as food goes, we did jello, soup broth, hard candies, gum (not peppermint), juice, pop and tea (he liked some of the flavoured ones). But, to tell you the truth, he rarely felt hungry once he was getting the full 3000 cal. per day and he got sick of the taste of jello and soup so he usually just avoided food altogether and just drank water. I think he actually did better with these restrictions when we all stopping trying to "feed" him and he just found other things to distract him when it was mealtime.
I asked him recently if he would do it again and he said that although he hopes he never has to, he would for sure.
05-10-2012, 02:04 PM   #47
sandramaggie
 
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Hi - not the update
05-10-2012, 02:07 PM   #48
sandramaggie
 
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start again - not the update i wanted to give - again problems with the nasal tube - think she must have a very small opening and wouldn't go through easily - after the first try failed she again said no why. She is now prescribed 60g Prednisolone tablets for 2 weeks. I don't feel comfortable with it but it was her decision - can't take the drinks or have nasal tube. she is happy she can now eat
05-10-2012, 02:30 PM   #49
Twiggy930
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So sorry to hear it didn't go well. EN takes such will power that if the person doing it isn't 100% on board it really isn't an option. The docs wanted our son to go on EN right away at diagnosis but he just couldn't come to terms with it at that point. I think that the combination of being recently diagnosed and being asked to do this really difficult treatment was just to overwhelming.

We went for a 3 month course of prednisone as his first treatment. We saw immediate improvement on prednisone. It cleared up much of his diarrhea, gave him a huge appetite and greatly reduced much of the pain. This was a big relief. Unfortunately we didn't see much more improvement after those initial improvements so we tried EN as well. At this point my son was totally ok with trying EN. I think he was totally fed up with feeling unwell and was desperate to get better. So you never know, her thoughts on EN might change in the future. We can only do what we can do at the time.

05-10-2012, 02:45 PM   #50
Tesscorm
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I'm sorry it didn't work and that she had to go through that again... brave girl after that first attempt.

As Twiggy said, it's a tough treatment if you aren't 100% onboard with it, especially as they get older... hopefully, the pred with get her into remission and you can revisit EN at a later date.

Good luck! I hope she's feeling better soon!
05-10-2012, 02:52 PM   #51
sandramaggie
 
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Hi - thanks - just don't feel comfortable with the drug she has been given - she keeps telling me that it must be safe or else she wouldn't have been given it
05-10-2012, 03:18 PM   #52
SarahD
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Ah poor thing! I completely agree with Twiggy here, for me I jumped at the chance of going on EN but I've had Crohns for 12 years so have had more time to get used to the idea of it - as someone newly diagnosed I can imagine that it can be too drastic a change too early on. Might be something to come back to at a later date.

As for the pred, it does have some side effects but can also be very effective at reducing inflammation too. The important thing is to get Amy's symptoms under control quickly and then a maintenance drug can be used to hopefully control things longer term.
05-10-2012, 04:37 PM   #53
Sascot
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It's a pity she never managed with the NG tube and I can understand you not being happy about the drugs (I am not happy about ours either)! However, with a disease that (from what I've heard) can really flare up when under stress, it is probably the best thing for her to be more relaxed and not have to worry about drinking "the vile stuff". My son wouldnt' have managed drinking it - he actually said he would rather have a blood test than drink them!
05-10-2012, 04:38 PM   #54
DustyKat
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I can fully understand your desire not to go onto Pred or any of these drugs for that matter but as SarahD has said it does have the potential to be a very effective drug at inducing remission.

EN is a wonderful treatment due to its obvious benefits but as Twiggy and Tess have pointed out it is only as effective as the person undertaking it and that can be applied to all treatments really IYKWIM.

Amy gave it a good go, bless her and at this this point in time it wasn't her thing but that doesn't rule it out as a future treatment or ongoing supplement. The fact that she has made the decision to go on to Pred means she has overcome half the battle to maximising the success of any treatment...compliance.

Good luck hun......I hope the Pred does the trick for Amy and she soon finds lasting peace and relief.

Dusty. xxx
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05-10-2012, 04:41 PM   #55
sandramaggie
 
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Ah poor thing! I completely agree with Twiggy here, for me I jumped at the chance of going on EN but I've had Crohns for 12 years so have had more time to get used to the idea of it - as someone newly diagnosed I can imagine that it can be too drastic a change too early on. Might be something to come back to at a later date.

As for the pred, it does have some side effects but can also be very effective at reducing inflammation too. The important thing is to get Amy's symptoms under control quickly and then a maintenance drug can be used to hopefully control things longer term.
Sarah - thanks again for all your support and advice - I will hang on to the 15 tins I have left just in case! take care of yourself - Sandra
05-10-2012, 04:45 PM   #56
sandramaggie
 
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I can fully understand your desire not to go onto Pred or any of these drugs for that matter but as SarahD has said it does have the potential to be a very effective drug at inducing remission.

EN is a wonderful treatment due to its obvious benefits but as Twiggy and Tess have pointed out it is only as effective as the person undertaking it and that can be applied to all treatments really IYKWIM.

Amy gave it a good go, bless her and at this this point in time it wasn't her thing but that doesn't rule it out as a future treatment or ongoing supplement. The fact that she has made the decision to go on to Pred means she has overcome half the battle to maximising the success of any treatment...compliance.

Good luck hun......I hope the Pred does the trick for Amy and she soon finds lasting peace and relief.

Dusty. xxx
Dusty - thank you so much for your kind words - don't know where I would have been without this forum to turn to -
the word compliance makes me smile at the moment - trying to get her to go to bed!
take care - Sandra
05-10-2012, 05:07 PM   #57
DustyKat
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the word compliance makes me smile at the moment - trying to get her to go to bed!
Good luck with that!

Dusty.
05-10-2012, 08:53 PM   #58
crohnsinct
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Aw Sandra I am so sorry things didn't go better for you guys today but I say a big DITTO to what everyone else has said.

My daughter tried it a full 3 months after diagnosis and after she has already been on two different drugs that have had some success getting a bit better. Therefore, she was in a much better place to go ahead and give it a try.

It must be very difficult for Amy to deal with feeling like crap, be handed a difficult diagnosis and then to try a very difficult treatment.

I would hold out hope that in the future if you ever have to try something else she may be more receptive.

The important thing is hopefully she will start feeling better soon and you will have your girl back.
05-11-2012, 01:35 AM   #59
sandramaggie
 
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Thanks - it seems that it is only a few that can go straight onto the liquid diet so yes I am hoping that if needs me she can do it when she feels stronger in herself. The doctor did say that at some point she would have had to go on steroids. I didn't give her them last night as it wasn't long enough before going to bed - heard about people not being able to sleep - night sweats etc so thought better to take in the morning.
05-12-2012, 02:15 AM   #60
Ms.Pickle
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Hi,My son,David was diagnosed with Crohn's 2 months ago. He has just weaned off predisone. He is taking the Modulen shakes and for those worried about cost after much research i found out that you can apply for a card where they can be paid for. Many of the medications for Crohn's can cause cancer in teenage boys. This is our reason for choosing the shakes. David will start weaning on to food after his 7th week. He has been on the Modulen shakes for 3 weeks now. He has had nothing else but water. He is getting used to the shakes. I flavour them with chocolate, strawberry or rolo Nestle Quik or a mixture of two flavours. He says they taste much better cold. The doctor was not very good at promoting the shakes and at first did not tell me they could be flavoured with Quik. David is 13 and says he is used to the taste of the Modulen now.
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