10-04-2011, 10:20 AM   #31
izzi'smom
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Thank you so much for all of the info (and taking the time )...does he get hungry? My doc had said that she needed 90% of her calories from EN, which I am guessing means she MAY be able to have a bit of something now and then. Just left a message for my doc to see what he says about the ng tube.

ETA The research for Crohns colitis remission using EN isn't promising...only 20% (albeit a small study) achieved remission. Likewise, it isn't proven to have great results in colitis patients. boo. Maybe it's not the right fit for us
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.

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10-04-2011, 11:04 AM   #32
Tesscorm
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While he was on the 'exclusive' period (formula only) he was allowed clear juice, freezies, jello and broth (just have to be careful about 'sugar' and cavities!). There was psychological/behavioural hunger, i.e. at lunch with friends, and then actual hunger by the evening. I sent him broth to have at lunch and arranged with the school to keep freezies in their freezer. In the evening, he would have broth and I would change it up a bit by heating it up with different spices (basil, rosemary, etc. and then strain it - there's only so much you can do with broth! LOL)

Also, in the evening, if he was going out, a couple of times he would have the formula for an hour or so after school, go out and then finish up overnight (just to take the edge off the hunger).

But, some members here have said they weren't allowed 'anything' - no broth, jello, etc.

As far as success, I was told my son did not have colitis (which kind of confuses me as he had inflammation in his duodenum, small intestine and colon - I thought if it involved the colon it is colitis???). But, what I know re success is that the success is comparable to steroids in achieving remission but that maintaining remission using the maintenance therapy (my son currently ingests 1/2 the dose, 5 nights per week) is not as successful as with other medications. I don't know if this is different for Crohns Colitis.
10-04-2011, 12:48 PM   #33
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Hi All, Caitlyn finished her colonoscopy and endoscopy. The doctor told us things did not look bad by the naked eye. Of course we have to wait for the biopsies. I met with the nutritionist while she was having the procedure and got some samples of the formula she said was the best. it is called Peptide. I now have to wait for everything to be set up with the insurance and we will be set to start. we are also going to start weaning her off the steroids. He cut her dose in half as of today from 40mg to 20mg for 2 weeks and then we will go down by 5 every 2 weeks until we get to zero.
10-04-2011, 02:24 PM   #34
izzi'smom
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DD's involves only the colon, which WOULD be UC, except she has a granuloma, which makes it crohns. Because she only has large intestine involvement it is crohns colitis. (i think lol)
10-04-2011, 02:45 PM   #35
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You are spot on Angie, Crohn's only in the large bowel is Crohn's Colitis.

Unfortunately all the literature I have read also seems to indicate that EN isn't very successful when it comes inducing remission in IBD affecting the large bowel.

Dusty. xxx
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10-04-2011, 02:49 PM   #36
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DustyKat you are correct that EN does not seem to work as well for Crohn's Colitis according to whagt I have been reading.
10-04-2011, 03:13 PM   #37
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10-04-2011, 04:04 PM   #38
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Wow, thanks for sharing that Ashley.

Even with the supposed reduced odds I think EN is always worth a try. It's what we do with other treatments...give it a go hoping more than anything it is the thing that will do the trick. The advantage with EN is it doesn't have the side effects meds do so if it doesn't work you really are no worse off.

Dusty.
10-04-2011, 07:28 PM   #39
izzi'smom
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I know. Stupid that I am willing to risk potentially harmful side effects (steroids are bad enough, and Remicade scares me even more) but don't want to torture my daughter with a ng tube. Duh. She got used to the IV, didn't she?!
Listen, if anyone finds a manual on parenting IBD kids, I'll pay ya' a million dollars for it!
10-04-2011, 08:19 PM   #40
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Ah hell Angie, there's no rhyme or reason with IBD is there? One day something scares the hell out of us and the next we welcome it with open arms!

Hmph, looks like I won't be earning a million dollars...bugger...

Dusty.
10-05-2011, 08:07 AM   #41
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Sorry, just a small, temporary 'detour' in this thread...

re the Crohn's colitis... can someone explain, as I said my son had inflammation in his duodenum (sp??), small intestines, TI and colon, however, the head GI of the hospital's IBD clinic, who performed his colonoscopy and endoscopy specifically said ' he has Crohn's but not Colitis'. If I understand Dusty's post correct, does Crohn's colitis mean it ONLY affects the colon? but, if his colon was also inflammed, wouldn't this mean he has Crohn's Colitis PLUS whatever other type of Crohns? (And, maybe my basic understanding is incorrect, but is the colon and large bowel the same thing?)

thanks


Kimmidwife - glad to hear Caitlyn is doing better! Good luck with the EN.

Angie - Good luck, as well, with the EN. I hope it's an option that works for Izzi!
10-05-2011, 12:17 PM   #42
izzi'smom
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Crohns disease is the term for infammation from mouth to rectum. If it is solely in the large bowel, it is Crohn's colitis (I am guessing it is termed differently as it may be that it is treated a bit differently (we have tried enemas, which I am sure won't work for Crohns in other areas of the GI tract).

Ileocolitis: Ileocolitis is the most common type of Crohn's disease. It affects the small intestine, known as the ileum, and the colon
Ileitis: This type of Crohn's disease affects the ileum.
Gastroduodenal Crohn's disease: This form of Crohn's disease involves the stomach and duodenum
Jejunoileitis: This form of the disease affects the jejunum
Crohn's (granulomatous) colitis: This form of Crohn's disease involves only the colon

Thanks for asking that question...I learned something new today!

I would guess that in your case it is ileocolitis, right?!
10-05-2011, 12:26 PM   #43
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Thanks! I guess my son has Ileocolitis (inflammation in the duodonum was slight). I did ask at one of his follow up appointments, received some sort of explanation but, for some reason, still came away not knowing??? Thank god for this forum! I've learned so much here, I'd be lost without it! Can't imagine JUST counting on his GI for info!
10-05-2011, 02:50 PM   #44
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Hi Caitlyn tried one of the shakes this morning. (We are still waiting for insurance approval to get the shakes but got a few samples from the nutritionist. The one she tried is the Pediasure Peptide. She said it did not taste too bad. However she is really not looking forward to doing this even though everything she eats hurts her stomach. She is realy down and sad.
10-05-2011, 03:22 PM   #45
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10-05-2011, 03:41 PM   #46
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Crohns disease is the term for infammation from mouth to rectum. If it is solely in the large bowel, it is Crohn's colitis (I am guessing it is termed differently as it may be that it is treated a bit differently (we have tried enemas, which I am sure won't work for Crohns in other areas of the GI tract).
Right again Angie! Because it only affects the large bowel the name differentiates it from Ulcerative Colitis and does also mean that there is a cross over of medication used to treat both conditions.

@Tesscorm - Colon and Large Bowel are the same thing and your son would have ileocolitis. The duodenum is the start of the small bowel (ileum), the terminal ileum is the end of the small bowel and then he has involvement of the large bowel (colon). End it of with the medical suffix for inflammation, itis and you end up with ileocolitis.

Dusty. xxx
10-07-2011, 03:34 PM   #47
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Would anyone who has taken part in this thread object to me copying this thread to our new enteral nutrition forum? This thread would remain here (which I think is important since this subforum is so specialized) but people who maybe don't have kids and visit the new EN forum would benefit from the info as well since an active copy would exist there. If anyone objects, that's quite ok and why I'm checking.

Sorry for the interruption!
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10-07-2011, 03:40 PM   #48
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I don't object David.
Ashley1, We are going to be using the 1.5. Thanks for letting me know. Still awaiting approval from the insurance company. I spoke with them it is in the works and hopefully will be in place by next week. Meanwhile she is drinking one shake per day for breakfast to get used to it.
10-07-2011, 05:11 PM   #49
izzi'smom
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No problem, David.
Still haven't heard back from my doc yet after leaving a message re: EN via NG. Shocking, I know. lol. Will be harassing him next week.
10-07-2011, 06:09 PM   #50
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Fine by me, David.
10-07-2011, 11:18 PM   #51
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Ok with me David.
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11-01-2011, 08:58 PM   #52
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Hi All, Caitlyn started the EN fully on Monday. She is having a rough time. Last week we let her have dinner to break her in slowly. She wants to know if she can have pudding? Our doctor really knows nothing about EN. We are following what Tesscorm said in her post about using clear liquids broth and formula. She says she does feel a little better. No stomach pain yesterday or today.
11-01-2011, 09:33 PM   #53
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kimmidwife, I had only the EN and water, but others on this forum have had popsicles, jello and clear broth.
11-02-2011, 08:41 AM   #54
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Hi Kimmidwife,

The 'no eating' is tough, tough, tough! I really admire anyone who's been successful because I'm not sure that I could get through it!

My son's dietitian allowed him:

broth (any type/flavour, homemade or packaged)

clear juice - however, she warned that we stay away from juices containing any fibre, pulp, etc. She said that, really, the ideal drink during the enteral diet was the type that, as a parent, you would normally never give! Mainly sugar and water!! I bought the 'no name' apple juice or 'beverage' (don't even think they called it juice! LOL) as it seemed to contain the least amount of fruit in the ingredients.

other drinks - Gatorade, koolaid, Tang

Freezies, popsicles, jello

Hard 'clear' candies (like Lifesavers but nothing with chocolate or caramel) but only a few per day

Gummy candies

But, be careful with all the sugar! You don't want to solve one problem and create another!

The only ways to add 'variety' that I could think of was to heat up the broth with different spices (rosemary, basil) and then strain it, sometimes I gave it to him in a mug rather than a bowl (sometimes it's all about presentation! ), I would combine broths (chicken with beef broth was his 'favourite'), I bought unflavoured gelatin and made some with juice (my son doesn't really like Jello, thought he might like it if it was flavoured with juice... not a big hit...), also tried freezing the Jello but not much different than just having a freezie.

I couldn't think of any other way to add variety. Even tried adding little squares of unflavoured gelatin to the broth, hoping it would hold its shape and sort of feel like pasta but, it melted (as I thought it would, but had to try! )


It wasn't easy! My son was absolutely sick of eating/drinking 'sweet' things. For the most part, he stuck with just broth, freezies and apple beverage.


I sent broth with him to school for lunch and supplied the school with freezies for him.

I think, at lunch, he had more behavioural hunger, sitting with friends, etc. He seemed to feel more real hunger by dinner and into the evening. A couple of times, if he was going out later, he did take in 1-2 hours of formula, go out and then finish off the formula overnight. He said it took the edge off 'a little'. He also felt more hunger towards the end of the six week period. Also, weeks 3 and 4 were tough - the dietitian warned him that he would feel more cravings at this point, and he really did. But, seemed to lessen again after a week or so.


Wish I could offer some suggestions that would really make it easier for her. But sending Caitlyn lots of good wishes!
11-02-2011, 09:48 AM   #55
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Tesscorm,
I knew you would come to the rescue!
11-02-2011, 10:13 AM   #56
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LOL... still feel like I know almost absolutely nothing else about Crohns but, have certainly learned about EN!

The good (I finally have a way of getting all those vitamins in him! ), the bad (do NOT forget to put the lid on the blender when making formula! ) and the ugly (checking stomach fluid for placement AFTER he'd finished a red freezie! )... all in a day's work for a Crohn's mom!
11-02-2011, 10:35 AM   #57
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11-02-2011, 08:07 PM   #58
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Thanks Tesscorm!
11-02-2011, 10:34 PM   #59
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I also wonder why more people don't choose this treatment. I was on it in for the month of June and although it's hard I have been in steady remission ever since. Right now I have 3 shakes a day along with food and it's working great! I'm the only patient my doc has on this treatment (it's rarly used in the us) and it's surprising because it can be as effective as an immuosuppresent without the side effects. Maybe the not eating thing scares people, but the shakes were filling and I was allowed Popsicles and chicken broth so after I got over the lack of variety I was fine. It's great to hear about more success stories, maybe in a few years this will be a popular treatment.
11-03-2011, 09:52 PM   #60
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Hi All,
Caitlyn had a rough day today. She was very sad and fed up with everything. She said she can't handle crohn's anymore and is sick of all the medications and doing this diet. After a long discussion we came to a compromise. I am going to let her have some very soft bland foods along with the shakes. Foods such as mashed potatoes. I am hoping the diet will still work along with this. I will keep you all posted.
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