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05-05-2012, 04:39 AM   #1
sandramaggie
 
Join Date: Apr 2012
Location: Hull, United Kingdom
Food cravings whilst on modulen

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
05-05-2012, 06:24 AM   #2
DustyKat
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Hi sandramaggie and

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!

Good luck Mum, I hope all is going okay with Amy. 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
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05-05-2012, 08:15 AM   #3
sandramaggie
 
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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!
05-05-2012, 08:29 AM   #4
DustyKat
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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
05-05-2012, 09:38 AM   #5
SarahD
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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
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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
05-05-2012, 10:11 AM   #6
crohnsinct
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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!
05-05-2012, 10:23 AM   #7
Twiggy930
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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.
__________________
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.
05-05-2012, 12:54 PM   #8
Sascot
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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 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.
05-05-2012, 01:41 PM   #9
sandramaggie
 
Join Date: Apr 2012
Location: Hull, United Kingdom
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
05-05-2012, 02:33 PM   #10
Tesscorm
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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.

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!

__________________
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
05-05-2012, 03:11 PM   #11
sandramaggie
 
Join Date: Apr 2012
Location: Hull, United Kingdom
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!
05-05-2012, 04:28 PM   #12
DustyKat
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Good luck! I hope all goes well and Amy is soon on top of things again, bless her.

Keep us posted with how you get on.

Dusty. xxx
05-05-2012, 04:56 PM   #13
Sascot
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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.
05-06-2012, 05:17 AM   #14
sandramaggie
 
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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
05-06-2012, 08:57 AM   #15
crohnsinct
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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.
05-06-2012, 09:16 PM   #16
Tesscorm
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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!


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?
05-07-2012, 03:32 AM   #17
sandramaggie
 
Join Date: Apr 2012
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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 -
05-07-2012, 03:34 AM   #18
sandramaggie
 
Join Date: Apr 2012
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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
05-07-2012, 07:59 AM   #19
Tesscorm
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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!
05-07-2012, 08:41 AM   #20
crohnsinct
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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.
05-07-2012, 02:30 PM   #21
Sascot
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Good luck with the tube. I was so worried about it but he was just so happy not to have to drink it!!
05-08-2012, 02:08 AM   #22
sandramaggie
 
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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
05-08-2012, 02:45 AM   #23
SarahD
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Hi Sandra,

Sorry to hear things didn't go well with the NG tube. I really would recommend asking the dietitian about changing to Elemental Extra 028 rather than Modulen. Please keep us updated.

Sarah
05-08-2012, 03:26 AM   #24
LilyRose
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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
05-08-2012, 08:31 AM   #25
Tesscorm
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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 ; 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.

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 (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.
05-08-2012, 08:39 AM   #26
sandramaggie
 
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Location: Hull, United Kingdom
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!
05-08-2012, 08:49 AM   #27
handle
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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.
05-08-2012, 08:54 AM   #28
sandramaggie
 
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Oh gosh - hope my daughter can tolerate it - we shall see. Many thanks for getting in touch -
05-08-2012, 09:37 AM   #29
crohnsinct
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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 -
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?
05-08-2012, 10:12 AM   #30
sandramaggie
 
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thanks for your best wishes - this forum seems such a life line - what wonderful people you all are -
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