My 15yr old daughter Amy was diagonised with CD last Friday - started her Modulen liquid diet last Tuesday - only managed 250ml - then made it 1000ml - yesterday 1650 ml - have to get it to 2000ml per day. Trouble is she has always hated milk shakes - hot chocolate. She is finding it really hard not to have any food - help - how can I get her through this. She is allowed water and yesterday she has sparkling water which she prefers - will this cause problems - is there anything at all she could have - have seen that others have taken jelly babies, haribos, clear mints - can she do this or will it completely make using the modulen ineffective. Any tips on how to overcome the need for food
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Food cravings whilst on modulen
- Thread starter sandramaggie
- Start date
DustyKat
Super Moderator
Hi sandramaggie and :welcome:
I'm so sorry to hear about you daughter.
No real experience with Enteral Nutrition (EN) at our end but we have some fab parent's here with load of experience. Some have had their children do the diet the way your Amy was prescribed and others have their children do it via NG tube, with the tube either insitu 24/7 or inserted for overnight feeds. Many are on EN exclusively but not all. No doubt the experts will be along to help you out! :thumleft:
Good luck Mum, I hope all is going okay with Amy. :hug: If you have any other questions please don't hesitate to ask and if you just want to talk or vent then we are here for that too!
Welcome aboard!
Dusty. xxx
I'm so sorry to hear about you daughter.
No real experience with Enteral Nutrition (EN) at our end but we have some fab parent's here with load of experience. Some have had their children do the diet the way your Amy was prescribed and others have their children do it via NG tube, with the tube either insitu 24/7 or inserted for overnight feeds. Many are on EN exclusively but not all. No doubt the experts will be along to help you out! :thumleft:
Good luck Mum, I hope all is going okay with Amy. :hug: If you have any other questions please don't hesitate to ask and if you just want to talk or vent then we are here for that too!
Welcome aboard!
Dusty. xxx
Dusty - thank you - just tried the special edition vanilla - yukky! but maybe better as an ice lolly so have frozen some. Tried Amy with hypnotherapist yesterday - think it made it worse as she expected to come out liking the shake and not being so preoccupied with food. She cannot understand why it tastes so horrible but told her its a bit like going to the dentist - thought they might have invented a silent drill by now!
DustyKat
Super Moderator
Some do overcome the taste but many don't which why a tube is resorted to if not suggested straight up. Also other preparations are available via tube that would not be tolerated orally.
EN is certainly a wonderful treatment if your daughter is able to tolerate it as it has an equivalent success rate as steroids at inducing remission, particularly in children, has no side effects and provides all the nutrition that is necessary.
Do you think your daughter would be open to the idea of a naso gastric tube? Feeds can be given overnight via a pump.
Dusty. xxx
EN is certainly a wonderful treatment if your daughter is able to tolerate it as it has an equivalent success rate as steroids at inducing remission, particularly in children, has no side effects and provides all the nutrition that is necessary.
Do you think your daughter would be open to the idea of a naso gastric tube? Feeds can be given overnight via a pump.
Dusty. xxx
Hi sandramaggie,
Firstly, welcome to the forum and sorry to hear that your daughter has Crohns.
There are other EN options available in the UK if your daughter struggles with Modulen. I'm currently on Elemental Extra 028 and I find the taste is pleasant, most of the flavours are more like fruit juice than milkshake, so she may find them better. I've never tried Modulen, so can't say how they compare.
The pre-occupation with food thing does settle down with time. I found the first 2 weeks were the hardest for me with food cravings. I found it hard to distract myself but found that if I gave myself little (non-food) treats every now and then it helped a bit. Something like going clothes shopping, a magazine, some bubble bath (Lush is one of my favourite shops for this!)...something I wouldn't often treat myself too.
Do you know how long your daughter will be on this diet for, and what are the plans for afterwards?
Good luck!
Sarah
Firstly, welcome to the forum and sorry to hear that your daughter has Crohns.
There are other EN options available in the UK if your daughter struggles with Modulen. I'm currently on Elemental Extra 028 and I find the taste is pleasant, most of the flavours are more like fruit juice than milkshake, so she may find them better. I've never tried Modulen, so can't say how they compare.
The pre-occupation with food thing does settle down with time. I found the first 2 weeks were the hardest for me with food cravings. I found it hard to distract myself but found that if I gave myself little (non-food) treats every now and then it helped a bit. Something like going clothes shopping, a magazine, some bubble bath (Lush is one of my favourite shops for this!)...something I wouldn't often treat myself too.
Do you know how long your daughter will be on this diet for, and what are the plans for afterwards?
Good luck!
Sarah
crohnsinct
Well-known member
Hi Sandramaggie - Sorry I don't have a lot of advice as we also started EN last Thursday with my 12 year old. Just wanted to say welcome.
Our doc was pretty strict about absolutely nothing other than water or Boost shakes. Our daughter says she is hungry and she is surrounded by food. We are treating her each week to a manicure and pedicure and I have said yes to a few more things than I usually would have...oh and she had a banquet the other night and I let her get her hair done...anything to take her mind off the food and being different and make her feel special. I am going to ask the doc about chewing gum next week. Good Luck!
Our doc was pretty strict about absolutely nothing other than water or Boost shakes. Our daughter says she is hungry and she is surrounded by food. We are treating her each week to a manicure and pedicure and I have said yes to a few more things than I usually would have...oh and she had a banquet the other night and I let her get her hair done...anything to take her mind off the food and being different and make her feel special. I am going to ask the doc about chewing gum next week. Good Luck!
:welcome: sandramaggie
Sorry to hear that your daughter has been diagnosed with Crohn's. My son is 10 years old and was diagnosed with Crohn's in February. He has just completed a 6 week course of enteral nutrition using Modulen and we are now beginning to re-introduce food.
My son found the taste terrible. We only had the plain (sort of vanilla) flavor available to us but we tried adding flavored syrups (used Nesquik). No matter what flavoring we added my son still disliked it. We had intended to use a NG tube all along as I kind of expected him to not like the taste, he is very picky. He did find that using a straw helped when trying to drink them as did having the shake very cold. I have also heard of someone who covered the top of the glass with clingfilm so they couldn't smell the shake as much and that helped.
My son was allowed to have clear fluids, hard clear candies (such as lifesavers) and a small amount of gummy bears. The gummy bears helped with the desire to chew something but they weren't all that satisfying. He also found clear broth (beef or chicken) to be helpful as it was a way of tasting something savory. On the suggestion of Tess, another EN mom on the forum, I flavored the broth by simmering it with various herbs (cilantro, rosemary or basil) and then straining it. He also enjoyed weak iced tea, Sprite (small amounts), jello, and freezies.
We were really amazed at how easy the NG tube was for my son to use. He inserts it every night, still doing this as we re-introduce food, and the Modulen is pumped in as he sleeps. He learned to insert the tube very quickly, it only took a 1 hour session with the IBD nurses to learn. He can do it in 13 seconds flat with no help from me whatsoever, he doesn't even gag. It really has been a much less arduous way of ingesting the Modulen.
Another thing we did was during the day, if he still felt hungry, I allowed him to drink Boost. Boost is similar to Modulen but less broken down. We were given the option of doing the whole EN diet with Boost but we chose Modulen as it is easier to digest. The advantage of the Boost is that it tastes way better. We did find it handy to have some sort of formula available to him during the day as the clear fluids do nothing to alleviate hunger.
The beginning of the EN diet was by far the hardest. My son often said he felt hungry but it was more a desire to eat than true hunger. Distracting him, especially at mealtimes, helped a lot. After a while he became more used to not eating, almost like the habit of eating had been broken, and the diet was easier to follow.
Good luck with the EN. It is a hard thing for these kids to do but the benefits are well worth all the hardship.
Sorry to hear that your daughter has been diagnosed with Crohn's. My son is 10 years old and was diagnosed with Crohn's in February. He has just completed a 6 week course of enteral nutrition using Modulen and we are now beginning to re-introduce food.
My son found the taste terrible. We only had the plain (sort of vanilla) flavor available to us but we tried adding flavored syrups (used Nesquik). No matter what flavoring we added my son still disliked it. We had intended to use a NG tube all along as I kind of expected him to not like the taste, he is very picky. He did find that using a straw helped when trying to drink them as did having the shake very cold. I have also heard of someone who covered the top of the glass with clingfilm so they couldn't smell the shake as much and that helped.
My son was allowed to have clear fluids, hard clear candies (such as lifesavers) and a small amount of gummy bears. The gummy bears helped with the desire to chew something but they weren't all that satisfying. He also found clear broth (beef or chicken) to be helpful as it was a way of tasting something savory. On the suggestion of Tess, another EN mom on the forum, I flavored the broth by simmering it with various herbs (cilantro, rosemary or basil) and then straining it. He also enjoyed weak iced tea, Sprite (small amounts), jello, and freezies.
We were really amazed at how easy the NG tube was for my son to use. He inserts it every night, still doing this as we re-introduce food, and the Modulen is pumped in as he sleeps. He learned to insert the tube very quickly, it only took a 1 hour session with the IBD nurses to learn. He can do it in 13 seconds flat with no help from me whatsoever, he doesn't even gag. It really has been a much less arduous way of ingesting the Modulen.
Another thing we did was during the day, if he still felt hungry, I allowed him to drink Boost. Boost is similar to Modulen but less broken down. We were given the option of doing the whole EN diet with Boost but we chose Modulen as it is easier to digest. The advantage of the Boost is that it tastes way better. We did find it handy to have some sort of formula available to him during the day as the clear fluids do nothing to alleviate hunger.
The beginning of the EN diet was by far the hardest. My son often said he felt hungry but it was more a desire to eat than true hunger. Distracting him, especially at mealtimes, helped a lot. After a while he became more used to not eating, almost like the habit of eating had been broken, and the diet was easier to follow.
Good luck with the EN. It is a hard thing for these kids to do but the benefits are well worth all the hardship.
Hi, my son was put on Modulen as soon as he was diagnosed in August last year. He couldn't stand the taste of it :ybiggrin: so ended up with the NG tube inserted for the full 8 weeks. I fed him through the gravity bolus feed at his regular meal/snack times.
Our docs were very strict on him only being allowed chewing gum, full sugar 7-up and foxes glacier mints (weird combination).
I have to say Andrew never really made much of a fuss about not eating - only mentioned it a couple of times.
Good luck - hope she manages to stick to it, it really is worth it and at least there are no side effects.
Our docs were very strict on him only being allowed chewing gum, full sugar 7-up and foxes glacier mints (weird combination).
I have to say Andrew never really made much of a fuss about not eating - only mentioned it a couple of times.
Good luck - hope she manages to stick to it, it really is worth it and at least there are no side effects.
Thank you everybody for all your replies - we seem to start off well in the morning but after about 3pm hit the low when she has only had 1 litre or just over. She is now refusing to take the Modulen at all - doesn't want a nasal tube - this is just so awful - I cannot force her to take it - is 2 litres the normal amount that the children/young people are having to take?
Now it is the bank holiday weekend and not sure who I can contact
Now it is the bank holiday weekend and not sure who I can contact
Hi Sandra,
I'm so sorry that you and your daughter are struggling with this! It can be a very difficult treatment but, if she can do it, I think it is so worth it. :ghug:
My son has his formula through the NG tube. Exactly as Twiggy described, he learned to insert the tube very easily (removing is simple) and, literally, takes only seconds to insert. When he did his initial treatment, six weeks of no food, formula only, he did it thru the NG tube overnight. He removed the tube each morning. He is also picky and I know, that even if I could convince him to drink one or two shakes, he would never have managed the daily full amount, especially not for that time period. I just looked up a demo of an NG tube insertion on You Tube for you and found a great demo, link just below. (And, this girl is AMAZING!!! What a great kid!) Just one comment, she did the insertion slowly (demo reasons??), it takes Stephen only secs.
http://www.youtube.com/watch?v=YJIFOCbPTjo
As far as the quantity, when on formula alone, Stephen's dose was 2000 ml. (3000 calories). As he did it overnight, his flow rate was 200-250 ml/hr (he did bump it up to 300 if he was in a real rush...), it normally took 8-10 hours. His current maintenance is 1/2 dosage, 5 nights a week with all regular foods added back.
Re the food cravings, my son was allowed clear fluids - broths, jello, popsicles, gummy candies, lifesavers (or other clear candies), gum (I was told to avoid gum with sorbitol as it can cause GI issues). He took broth to school to eat lunch with friends and I arranged for the school to keep some freezies for him.
If your daughter can manage the treatment, it is well worth the effort. My son responded very well and quickly and, thus far, his only medication is an antacid. He'd lost 20 lbs before diagnosis, and within 3 months had gained 30 lbs. Being a picky eater, I've always been concerned with his nutrition - this concern, at least, is now gone! Also, a small bonus... if she has problems drinking the preps for MREs, she can ingest the prep through NG as well...
Good luck! I'm sure there will be even more parents who can offer their advice!
:ghug:
I'm so sorry that you and your daughter are struggling with this! It can be a very difficult treatment but, if she can do it, I think it is so worth it. :ghug:
My son has his formula through the NG tube. Exactly as Twiggy described, he learned to insert the tube very easily (removing is simple) and, literally, takes only seconds to insert. When he did his initial treatment, six weeks of no food, formula only, he did it thru the NG tube overnight. He removed the tube each morning. He is also picky and I know, that even if I could convince him to drink one or two shakes, he would never have managed the daily full amount, especially not for that time period. I just looked up a demo of an NG tube insertion on You Tube for you and found a great demo, link just below. (And, this girl is AMAZING!!! What a great kid!) Just one comment, she did the insertion slowly (demo reasons??), it takes Stephen only secs.
http://www.youtube.com/watch?v=YJIFOCbPTjo
As far as the quantity, when on formula alone, Stephen's dose was 2000 ml. (3000 calories). As he did it overnight, his flow rate was 200-250 ml/hr (he did bump it up to 300 if he was in a real rush...), it normally took 8-10 hours. His current maintenance is 1/2 dosage, 5 nights a week with all regular foods added back.
Re the food cravings, my son was allowed clear fluids - broths, jello, popsicles, gummy candies, lifesavers (or other clear candies), gum (I was told to avoid gum with sorbitol as it can cause GI issues). He took broth to school to eat lunch with friends and I arranged for the school to keep some freezies for him.
If your daughter can manage the treatment, it is well worth the effort. My son responded very well and quickly and, thus far, his only medication is an antacid. He'd lost 20 lbs before diagnosis, and within 3 months had gained 30 lbs. Being a picky eater, I've always been concerned with his nutrition - this concern, at least, is now gone!
Also, a small bonus... if she has problems drinking the preps for MREs, she can ingest the prep through NG as well...Good luck! I'm sure there will be even more parents who can offer their advice!
:ghug:
Thank you so much - it looks like we will be making the visit to the hospital tomorrow to have the nasal tube inserted - also many thanks for finding the you tube clip for me - just going to watch it now!
Good luck with the tube! Not sure what your daughter's docs said, but when we were given the Modulen there was no choice given. If he couldn't drink it then he HAD to get the NG tube. It annoyed him for 3/4 days but then got used to it. My son did wear it to high school and as far as I know no one ever teased him about it.
Hi there - telephoned hospital this morning - they said to keep trying with the drink as it was not nice having the nose tube! discussed it with Amy and we are trying again today - going to do 3 x 500ml so that there is plenty of time between doses. She is supposed to have 2litres but I am never going to get that down her - although 15 she is only petite anyway - she always seems to manage first off but hits the low point mid afternoon when the food cravings come and she is sick of the taste and smell of the drink. Lets see how we get on toady but thanks for your help and advice - it is much appreciated and it is just nice to talk to people who have / are experiencing the same things
crohnsinct
Well-known member
Tesscorm - Thanks so much for the link to the video. She was adorable and very articulate. All the other video's I found were in hospitals and too scary to show Liv. Did you see the Mom part? LMAO
Still can't believe your kids all get this done in 13 or 8 seconds but O.K. I'll bite.
Still can't believe your kids all get this done in 13 or 8 seconds but O.K. I'll bite.
Crohnsinct - The actual insertion takes just a few seconds. But, according to how we were taught, she did give very detailed, exact instructions! And, I certainly don't want to discourage anyone from following the exact directions but, as time goes on, you may find you'll change some things... i.e. Stephen doesn't use the gel anymore nor drink the water (although he did exactly as she did at the beginning).
Also, the measurement is only done periodically. In Stephen's case, as he's already 5'10", he's not growing much more or quickly, we've checked the measurement only once or twice and it hasn't changed (But, if Stephen were younger and growing more quickly, I would be checking it much more often.)
Also, the tape... the size/amount of tape she used is what Stephen would use for the whole week. We pre-cut a bunch of pieces of tape and have them ready for the week.
So, it seemed like a lot of steps but it really doesn't take that long...
Yeah, the mom part was funny! :lol:
Sandra - I hope the hospital didn't discourage you or Amy from trying the tube. They may not think it's 'nice' to have the tube but it's certainly not 'nice' to have to drink 2 litres of milkshakes every day if you don't like them! In all honestly, given the choice, Stephen would definitely choose the tube over drinking the shakes. And, if her GI doesn't allow any other clear fluids like broth, what about flavoured/herbal tea?
But, according to how we were taught, she did give very detailed, exact instructions! And, I certainly don't want to discourage anyone from following the exact directions but, as time goes on, you may find you'll change some things... i.e. Stephen doesn't use the gel anymore nor drink the water (although he did exactly as she did at the beginning).Also, the measurement is only done periodically. In Stephen's case, as he's already 5'10", he's not growing much more or quickly, we've checked the measurement only once or twice and it hasn't changed (But, if Stephen were younger and growing more quickly, I would be checking it much more often.)
Also, the tape... the size/amount of tape she used is what Stephen would use for the whole week.
We pre-cut a bunch of pieces of tape and have them ready for the week.So, it seemed like a lot of steps but it really doesn't take that long...
Yeah, the mom part was funny! :lol:
Sandra - I hope the hospital didn't discourage you or Amy from trying the tube. They may not think it's 'nice' to have the tube but it's certainly not 'nice' to have to drink 2 litres of milkshakes every day if you don't like them! In all honestly, given the choice, Stephen would definitely choose the tube over drinking the shakes. And, if her GI doesn't allow any other clear fluids like broth, what about flavoured/herbal tea?
Good Morning tesscorm - guess were we are going this morning ?- yes we are going to the hospital - Amy again tried to drink it but only managed 1 litre - so the only solution is the gastric nose tube. We have decided that we will take our own bottle of water and straw so that she can sip it whilst the process is being carried out -
sorry only half did my message! She is not sure that she would want to put it in herself - would she have to - or can she keep it in all the time? for the next 5 weeks. i daren't try her on the broth but she did have some mint tea yesterday but that just caused stomach pains- not sure it was that but it got the blame and me of course!
Once again thanks for help - it is much appreciated - I just want it to be the middle of June when she can eat again
Once again thanks for help - it is much appreciated - I just want it to be the middle of June when she can eat again
Hi Sandra,
You can keep the tube in for the entire period (not sure if it would have to be replaced at all during the 5-6 weeks though). I know there are some other kids here who chose to keep the tube in... Julie's (IMABOVEITALL) daughter kept hers in the first month and, I believe, Sascot's son also kept his in.
The water helps when 'swallowing' the tube, and my son said that putting the tube in sort of felt like when you get water in your nose... Also, apparently, the most difficult part is getting past the gag reflex - I told my son to visualize how small the tube really was compared to the size of a bite of food when he swallows... he only had to fight that 'gagging' sensation the first and maybe second time.
Good luck!!! I hope Amy doesn't find it too difficult! :ghug:
You can keep the tube in for the entire period (not sure if it would have to be replaced at all during the 5-6 weeks though). I know there are some other kids here who chose to keep the tube in... Julie's (IMABOVEITALL) daughter kept hers in the first month and, I believe, Sascot's son also kept his in.
The water helps when 'swallowing' the tube, and my son said that putting the tube in sort of felt like when you get water in your nose... Also, apparently, the most difficult part is getting past the gag reflex - I told my son to visualize how small the tube really was compared to the size of a bite of food when he swallows... he only had to fight that 'gagging' sensation the first and maybe second time.
Good luck!!! I hope Amy doesn't find it too difficult! :ghug:
crohnsinct
Well-known member
Aww so sorry to hear Amy has to face the tube and is scared. I hope it all goes well. Maybe after she has them do it the first time she will decide it wasn't too bad and change her mind and decide to do it herself each night.
Just curious...I have heard the Modulen is pretty yucky tasting...were you given an option to change to a better tasting formula?
Keep us posted...we are avoiding the tube so far as O is able to get her 6-8 shakes down but the Boost and Ensure are much better tasting.
Just curious...I have heard the Modulen is pretty yucky tasting...were you given an option to change to a better tasting formula?
Keep us posted...we are avoiding the tube so far as O is able to get her 6-8 shakes down but the Boost and Ensure are much better tasting.
Hi everybody = not good news yesterday - went into the hospital - a nurse tried to insert it but I was a little worried as she said she was only used to doing it in babies and was reading the instructions. She managed to get it so far and then brought it back out - not sure if she couldn't do it or because Amy was so tense it made it really difficult - anyway Amy was in floods of tears and wouldn't do it - she drank 500ml of drink whilst we were there and promised another 500ml when we got home so home she came. But by then she was so tired 8.30pm that she only managed 250ml. Not sure what will happen today - she promises at least 1800ml in 6 x 300ml.We shall see - brought the tube home so that might spur her on. I am also going to contact the dietician as for all our sakes we cannot continue like this - it is so emotionally draining and I feel like I am fighting all the time. Once again many thanks for all the advice and support. Also didn't realise that if she did have the tube fitted we had to stay in hospital for 3 days for the training etc , best wishes to you all - Sandra
Hello!
I am so sorry that your daughter is having to go throuhg all this. It is so hard to hear your child has a chronic condition.
I hope you can get some more support to help you through the enteral nutritian. Is there a dedicated gastro nurse at your hopsital? I have heard of others talking about them (although I don't think my hospital has one).
It sounds like you need a really experienced and confident nurse to help you and your daughter with practical advise and options to get you through these weeks of EN. Whether it is a different brand of shake or NG tube options.
I hope that these difficult times soon settle down, and the crohns settles quickly for your daughter.
take care,
LilyRose
I am so sorry that your daughter is having to go throuhg all this. It is so hard to hear your child has a chronic condition.
I hope you can get some more support to help you through the enteral nutritian. Is there a dedicated gastro nurse at your hopsital? I have heard of others talking about them (although I don't think my hospital has one).
It sounds like you need a really experienced and confident nurse to help you and your daughter with practical advise and options to get you through these weeks of EN. Whether it is a different brand of shake or NG tube options.
I hope that these difficult times soon settle down, and the crohns settles quickly for your daughter.
take care,
LilyRose
I'm so sorry it didn't go well. Poor Amy, it breaks my heart that our kids have to face so many challenges just to feel well!
It never occurred to me that she might have to stay in the hospital specifically to begin EN through the tube :yrolleyes: ; Stephen was already in the hospital when he began EN. But, I had forgotten that they start the feed at a low rate and gradually increase over 24 hours... makes sense that they wouldn't expect you to regulate that... Wish I had given you the heads up. :ybatty:
Very unfortunate if the nurse 'just didn't know how to do it'... Poor Amy, I'm sure, will be even more fearful to try it again. And, the size of the tube may also play a part... As Dusty pointed out in another thread, my 5'10" hockey player is apparently using an infant-sized tube :lol2: (6Fr) - but, regardless, this size hasn't caused any issues with the feed and, perhaps, helped when he learned to insert the tube.
I hope today goes better for Amy and you. :ghug:
It never occurred to me that she might have to stay in the hospital specifically to begin EN through the tube :yrolleyes: ; Stephen was already in the hospital when he began EN. But, I had forgotten that they start the feed at a low rate and gradually increase over 24 hours... makes sense that they wouldn't expect you to regulate that... Wish I had given you the heads up. :ybatty:
Very unfortunate if the nurse 'just didn't know how to do it'... Poor Amy, I'm sure, will be even more fearful to try it again. And, the size of the tube may also play a part... As Dusty pointed out in another thread, my 5'10" hockey player is apparently using an infant-sized tube :lol2: (6Fr) - but, regardless, this size hasn't caused any issues with the feed and, perhaps, helped when he learned to insert the tube.
I hope today goes better for Amy and you. :ghug:
Hi - I have spoken to the dietician today - she had spoken to the consultant as they realised something must have gone wrong with having the tube inserted - he was willing to do it himself which I thought was very good - but Amy will not try it again! So we are now going to try Elemental 028 - so fingers crossed may get the prescription tomorrow and start the day after - hope this works - feel a little better today as there seems to be a little light at the end of the tunnel!
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.
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.
Oh gosh - hope my daughter can tolerate it - we shall see. Many thanks for getting in touch -
crohnsinct
Well-known member
Gee ya think?!!!!! Reading instructions?!!! Seriously?! That blew my mind.
That poor girl. I am so sorry the insertion didn't go smoother and am so glad they are giving you another formula to try. Everyone's taste buds are different so hold out hope that it could be! I don't have any experience with that one either so very sorry I can't give advice. Just hugs to both of you and lots of hoping that this is the one that will work. If it doesn't, keep pushing for another and another...I know the whole tube thing is traumatizing but if it gets bad enough could they sedate her for the insertion?
thanks for your best wishes - this forum seems such a life line - what wonderful people you all are -
crohnsinct
Well-known member
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.
So surprised you found the Elemental 028 vile, I like them quite a lot :ytongue:
Good luck with the 2nd try Sandra, fingers crossed Amy can tolerate this better.
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.
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.
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.
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.
crohnsinct
Well-known member
YAY BERRY!
So glad you found one she likes..they actually sound good!
Good luck!
So glad you found one she likes..they actually sound good!
Good luck!
Thanks to everybody - still having tears over the no food but fingers crossed we are strong enough to get through that
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! :ywow: 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.
:hang:
I used a little bribery... 6 weeks of exclusive EN and we would buy him a new fish tank and get a piranha! :ywow: 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.
:hang:
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
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!
Re-doing a bedroom sounds perfect. Involves some research and planning, great distractions.
Good luck tomorrow!
:hug: 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.
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.
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.
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.
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
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
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.
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.
Hi - not the update
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
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.
:hang:
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.
:hang:
I'm sorry it didn't work and that she had to go through that again... brave girl after that first attempt. :ghug:
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!
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!
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:ybatty:
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.
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.
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!
DustyKat
Super Moderator
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...:hug:...I hope the Pred does the trick for Amy and she soon finds lasting peace and relief.
Dusty. xxx
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...:hug:...I hope the Pred does the trick for Amy and she soon finds lasting peace and relief.
Dusty. xxx
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
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
crohnsinct
Well-known member
Aw Sandra I am so sorry things didn't go better for you guys today :kiss: 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.
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.
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.
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.
Hi there - sorry to hear your son has CD but pleased that he is doing ok with the Modulen. We are lucky over here in the UK as the prescriptions are free. When we were given the Modulen we were also given the flavours - coffee, chocolate, lemon and lime, strawberry,banana. Amy could only drink the strawberry and banana and then
only by drinking in one gulp and with a nose clip.
She is on steroids now -60g for 2 weeks and then reducing by 5g per week until she is weaned of them.
She is on day 2 of steroids - takes forever for her to take the 12 tablets!
Wishing you and your son all the very best- what I found really hard was not wanting to eat in front of her. Can you believe I am now taking medication to stop my acid production as I was in agony on a night with terrible stomach pains! my own fault for not taking care of myself.
only by drinking in one gulp and with a nose clip.
She is on steroids now -60g for 2 weeks and then reducing by 5g per week until she is weaned of them.
She is on day 2 of steroids - takes forever for her to take the 12 tablets!
Wishing you and your son all the very best- what I found really hard was not wanting to eat in front of her. Can you believe I am now taking medication to stop my acid production as I was in agony on a night with terrible stomach pains! my own fault for not taking care of myself.
Thanks Twiggy930 - she has never mentioned the taste - just takes them between a mouthful of toast! Don't think I will ever get her back to school in a morning ......
Good question - have 14 days worth so will make sure get the bigger dosage tablets next time - didn't check at the time and also not sure what dosage they come in.
Will let you know in a couple of weeks when I pick the next prescription up x
Hi there - just a quick update - the largest tablet they do over here is 5mg. Amy is coming along in leaps and bounds - has been back to school on two seperate days just for 1 lesson the first time and then for 3 hours the 2nd time. She has 2 gcse exams coming up in a fortnights time - seems to be quite happy to do these now despite missing a lot of the work.
The steroids are making her tired - unable to sleep properly and constantly hungry - can't keep up with her and making meals/snacks for her.
She has a MRI scan booked for the 28th May so will have to see what that brings.
The steroids are making her tired - unable to sleep properly and constantly hungry - can't keep up with her and making meals/snacks for her.
She has a MRI scan booked for the 28th May so will have to see what that brings.