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11-06-2011, 03:22 PM   #91
kimmidwife
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I have to agree with Happy. The choice to have my daughter go on EN was a very difficult one. As you all know from my previous posts our doctor was not at all supportive. Caitlyn has only been on it 1 week and already it has been a tough struggle. Like Happy said it is sooo hard to see everyone eating around you and not be able to eat. My daughter loves to bake. She wants to own a bakery when she grows up and so it has been hard on her not to bake and eat anything that she bakes.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
11-06-2011, 05:27 PM   #92
Tesscorm
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Hi Kimmid,

I hope things are improving a little bit for Caitlyn! Would she consider the NG tube at all (you've probably discussed this, I just don't recall now...)? I'm only asking because, with the shakes, she not only has to sacrifice her 'real' meals but then also has to drink shakes that she doesn't like. With the NG tube, she will still have to give up her meals for a while but, at least, doesn't have the extra challenge of drinking the shakes she doesn't like. While not a huge upside, at least the only 'tasting' considerations she would have would be jello, broth, etc., never having to deal with the shakes. Just a thought...
11-06-2011, 06:10 PM   #93
AZMOM
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kiny - I think healthy debate is a good thing and hope you stay around. We all are doing the best we can with what we've got and we all agree this disease STINKS. Secondly, I think we all agree there is no one size fits all treatment or debate. As frustrated as I can get on here somedays, I value that you all challenge me to think differently, read a lot and weigh my options.

Group hug :-)

J.
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11-06-2011, 11:33 PM   #94
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Hi Tesscorm,
She would not consider the NG tube at all she thinks it is worse than drinking the shakes. We had a good day today. Another girl has started a support group for teens with crohns and UC. Caitlyn and her met today and it was really good and helpful for Caitlyn. I hope we can find some more teens to come.
11-07-2011, 06:30 AM   #95
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When my son was dxed in Dec. 09, we were not informed of any alternative to prednisone. If not for this forum, I'd never have heard of EN. I'd also never have heard of aloe vera, LDN,MMS(ooooh, wasn't that controversial?), etc.,etc.. The point is that all these options should at least be out in the open. I'm almost certain that if our GI had given us the option of EN at the time of our son's dx, and told us it was 50% likely to work as opposed to 85% with pred, we'd have first tried the EN. After remission was achieved, he was still going to have to have some maintenance med.

Kiny, I do believe your argument is valid. Replacing short term steroid with EN may not be worth the effort for many. Still, I'd have liked to have had the option. Kudos to all the parents who are doing their research ahead of the game
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11-07-2011, 10:24 AM   #96
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Ughh! Caitlyn is having bad pain again today. She was so good yesterday and stuck to the diet very well. I am wondering if when she got off it on Saturday if that stirred things up again?
11-07-2011, 11:25 AM   #97
Tesscorm
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Hi Kimmid,

I feel so sorry for Caitlyn. EN is a tough challenge for someone her age (and for you, as her mom)! Unfortunately, I'm not sure that going on and off the diet will bring the inflammation under control. I know that Stephen's GI and dietitien were adamant that he could not eat anything (other than the clear diet) for the six weeks. Once that period ended, then he could start to eat foods again. My understanding is that the formula is so easily digested, it gave bowel rest and that the formula allowed the good bacteria to strengthen to reduce the inflammation and repair some of the damage. They were very firm in that this would happen only if Stephen stuck to the treatment. However, there are others whose instructions from their GIs are not as strict??? Such as Izzy who is allowed a little food. I don't know???... maybe our GI was a bit over the top with his restrictions???

Maybe the other teen in her support group will give Caitlyn some extra encouragement??? But, if not, maybe the EN just isn't for her. I'm sure it must be heartbreaking for you watching her suffer not only from the crohns pain but also in dealing with the diet. Doing the EN was Stephen's choice from the beginning (and he's older), so I didn't have to deal with the issues you are having. But, I know, I would have found it extremely difficult to force him to do it if he wasn't completely on board with it, both in actually making him stick to the diet and watching him suffer through it. This must also be causing Caitlyn so much stress which also can't be good for her... perhaps that part of the reason for the pain?

Thinking of you both...
11-07-2011, 01:45 PM   #98
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I don't think your GI was over the top with his restrictions Tess. My understanding is, for EN to be effective in gaining remission you must ingest only the formula for at least 6 weeks or as Stephen was allowed, some clear fluid along with it.

Dusty.
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11-07-2011, 02:28 PM   #99
Kelly2
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My 12 year old daughter was diagnosed with Crohns in the 90's. After 3 horrible years of watching her suffer, all on my own, I decided to try NG tube feeding. She was on TPN with a central line in her chest. The doctors did not support me. Told me that it "doesnt always work". I did my research and read up about how they do it overseas (I am in US). I ordered the NG tube and formulas and paid for it myself. For the first few weeks, she ate nothing by mouth - was not hungry at all. After a while, she started eating normally during the day, and tube feeding only at night. To cut a long story short - the end result was nothing short of a miracle. The central line came out, the Prednisone, Asacol, 6MP and everything else was stopped. She gained weight and went back to regular school for the first time in years with beautiful rosy cheeks. If any doctor tells you that once you start eating you get sick again, I can tell you that did not happen in our case. She stayed well for years. Please do not think that drinking Boost or Ensure or any other over the counter meal replacement drink is the same - it is loaded with sugar and is completely different. Although not meant for oral intake, if she was in a hurry, eventually she would just drink a can of Peptamen 1.5 slightly diluted with water.

Last edited by Kelly2; 11-07-2011 at 03:04 PM.
11-07-2011, 03:01 PM   #100
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Hi Kelly,

Great to hear success stories like yours! If you don't mind my asking, is your daughter following any treatment now? And how long has she been in remission?

Thanks
11-07-2011, 03:19 PM   #101
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Hi Tesscorm,

The EN put her in remission for about 4 years. She stopped the EN after 2 years, and just drank the cans of Peptamen orally to supplement her diet - and still stayed well for 2years after that. She eventually flared again, and was put on Remicade. She is older now, and although she does not do the EN like she did when she was a teenager, she does drink the dilluted Peptamen 1.5 when she has flare ups. I sometimes wonder if we should do the EN again.

I agree with all of you - I just cannot for the life of me understand why these doctors in the States would give our children all these toxic meds, before at least trying something non-toxic like EN, which has no side effects. If it can turn around someone who was as sick as my child was, then it could help anyone. If it were their children, I wonder what their 1st choice of treatment would be. I guess they live and die by their medical journals and sometimes have tunnel vision. It is always so refreshing to meet a doctor who "thinks outside the box" and puts down all the medical literature and thinks about a situation logically. It saddens me to think of how many parents there are out there, going through what I did, and no-one is even mentioning this form of treatment and its success.

Last edited by Kelly2; 11-07-2011 at 03:49 PM.
11-07-2011, 05:14 PM   #102
izzi'smom
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So glad to hear your story, Kelly2!
Kim...is Caitlyn's weight suffering? I know that we will need our tube replaced in two more weeks (yup, thinking about it already) and while day-to-day is going well, tube placement was AWFUL and I am already weighing (lol) pros and cons. Izzi's weight is now stable and her stools are urgent but more regular and a bit less frequent (if that makes sense...less mucous, closer to being formed) so I *think* it is helping.)
I wish you wisdom for your decision...I know I hate making them! (hugs)
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11-07-2011, 08:27 PM   #103
kimmidwife
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Hi Everyone,
Kelly2 How long was your daughter on exclusive formula before she started adding food back in? I am trying to convince Caitlyn that it will not work unless she just does the formula.
Angie,
Her weight is not an issue. If anything we have the oppisote problem She gained a ton of weight from the steroids.
Tesscorm, I know you all are right I just need to convince her. I really don't want her on those toxic meds.
11-07-2011, 09:03 PM   #104
Tesscorm
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I sometimes wonder if we should do the EN again.

So, your daughter never tried the exclusive EN again? I've often wondered about that... whenever my son has a second flare, if going on the exclusive EN again would be as successful as the first time?

I've read stories where people have used the formula for short periods when flaring to increase their nutrition/calories but, I don't think I've ever read of someone who has used the treatment a second time to induce remission.
11-07-2011, 09:54 PM   #105
happy
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Tesscorm,
The program that Dr. John Hunter suggests is EN to induce remission followed by a LOFFLEX diet or full elimination diet to remain in remission. He suggests that if people relapse, they resume EN until they reach remission again and then resume the diet. His treatment is meant to be a lifestyle change, in that some people might not be able to tolerate certain foods. He suggests that the full elimination diet part of the treatment will take about a year to complete and that any foods that are not tolerated be retested periodically after that. He does state that a person's diet should be checked to make sure that it is nutritiously complete without the untolerated foods.

So yes, he expects that people might need to be on EN periodically for a short time to settle symptoms if they eat something that they cannot tolerate while they are working through the elimination diet. After that he states that people can use EN for a short time during times that they absolutely want to be well (weddings, grads, special vacations, etc.). As well, throughout their lives people might relapse and could resume EN as a treatment. He does state that people do get to a point where as long as they stick to their tolerable foods they remain well.

Info about his website and book are listed earlier on this thread. Also, I just wanted to state that the diet is meant to work on the same principle as the EN in that the EN has changed the flora of the bowel and the diet is meant to help maintain this change.

On a personal note I did achieve remission earlier this year on EN (documented with scopes and tests) but then relapsed on the LOFFLEX diet. I resumed EN and achieved remission again after only two weeks which I have maintained on the full elimination diet for three months.

Hope this gives you some more info.
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11-08-2011, 04:05 AM   #106
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The whole point of EN or Elemental/Modulen/etc is to rest the bowel. Drinks like Elemental 028 and modulen are formulated to be absorbed in the first few inches of the small intestine. Drink it too quickly, and you overwhelm the bowel and it pushes the liquid through faster and doesn't get absorbed where it should.
Eat anything and you miss the point. It'll have residue that wont be absorbed so your bowel now has food in it again. And it may be something that it really does not like. Let alone consider that some of the benefit is thought to be that bacteria in the lower bowels are starved of nutrition and so over time there are less of them - some peoples symptoms may be triggered by bacterial overgrowth.

So if you are on EN or Elemental type feeding, don't 'cheat' don't eat something, until you are properly ready, or you are back to square one.
11-08-2011, 10:19 AM   #107
Tesscorm
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Thanks Happy,

Thanks for the info. It's something I will keep in mind for when he's a bit older. Hopefully, I will not need to deal with this anytime soon! Realistically, I know that Stephen would not be able to follow either diet plan now. Even at his age, 17, he is still such a picky eater when introducing new foods (in his case, fruits and veggies have always and continue to be a constant battle), that trying to build a truly healthy diet while eliminating unhealthy foods would be an unsuccessful nightmare.

He was able to do the six weeks exclusive EN because the discipline required was to NOT eat but, if he had had to drink the formula (rather than ingest through NG), it would have been much, much harder for him and it wouldn't have surprised me if he hadn't lasted the six weeks.

If/when he flares, unless circumstances don't allow it, I will push for Stephen do the six week exclusive EN again and pray that it works again for him too!

Good luck with the elimination diet! I really hope it continues to work for you and your remission continues!!!
11-08-2011, 12:10 PM   #108
happy
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Tesscorm,
Thank you for your good wishes. I hope that all of the children and teenagers on this thread do well on their EN, achieve remission, and find a way to keep in remission.

Parents, give yourselves a pat on the back for all of your hard work in helping your child with this form of treatment. It is not an easy thing to do. I was only accountable to myself when I was on EN.

When my son was ill as a child, he needed a medication that had to be mixed and consumed 20 minutes before eating, three times every day, for a year. This was extremely difficult as he was a very picky eater who loved sports (lots of travelling), and whenever we mucked up, his symptoms returned. Boy did we feel awful anytime that happened. However, that was a relatively simple treatment compared to EN via NG tube. So kudos to all of you for sticking with your child's treatment.
11-08-2011, 02:17 PM   #109
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Kimmidwife - you asked how long my daughter waited until she ate again. I had no guidelines from any doctors back then, and just did what I thought was best. I remember that in the beginning, I turned the rate down VERY slow on the pump. Then I would steadily increase it. If I noticed that she had a runny tummy, I would turn down the rate again, and steadily increase it once more. She did not eat any food for a good few weeks as she was so sick, she had no appetite at all. After a few weeks, she started sipping pedriatric elemental drinks during the day, and then she started to eat pretty much anything she wanted within reason (no dairy/spicy foods and mostly chicken, turkey and fish). I found that as long as the bulk of her diet came from the tube feeding at night, she remained well. Over the course of time, she eventually stopped putting down an NG tube every night, and chose to just drink the Peptamen 1.5 instead. It still worked for years. Also, I wanted to mention that we did go back to the EN from time to time - whether by tube, or just drinking the dilluted formula very slowly, and it always worked. Something I wanted to share that I think is very important, is that if you ever want to try the EN, to make sure they use the correct tube as it can make a huge difference in the comfort of placing them. The tube I used was made by Kendall, and was called an 8 inch French tube. So tiny and flexible - no wider than the inside tube of a pen.

I am so grateful that we all get to share in our knowledge and experiences like we do. I know after all the research I have done over the last 15 years, I am quite a challenge when I meet with the doctors to discuss test results or course of treatments. Knowledge is power and I'm happy that we have each other to share this with
11-08-2011, 06:52 PM   #110
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So Kelly2,
Do you think if she can get through about 3-4 weeks on the formula exclusivey then maybe we can start to slowly add food back in? I have been letting her have the clear liquids and also mashed potatoes becuase I read that mashed potatoes actually have antiinflammatory properties and are very good for people with stomach and intestinal ailments. Plus they are supposed to be one of the easiest foods to digest. She has been having bad pain for the past 2 days and we are getting her set up for an MRI to take a look becuase the pain is not in her usual spot it is actually on the left side and this has been going on for about 1 month now.
11-09-2011, 02:39 PM   #111
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Hi Kimmidwife,

I just replied to your question, and then lost the whole post!! It just disappeared because I am not allowed to post URLs yet!! So here goes again

The million dollar question is what to feed our kids while they are flaring! For as many times as we read that a certain food is good for them, there are just as many who say it is bad. Then you throw into the mix, how different everyone responds and can tolerate certain foods, makes it even more frustrating. However, I would not feed Caitlyn mashed potatoes. I would try and avoid feeding her specific carbohydrates that are not digested easily in people with ibd. It results in fermentation and overgrowth of bacteria, which causes inflammation and damage to the intestine in someone with ibd.

Although over the last 15 years, I have researched the effects of nutrition on ibd, I think we need to carefully consider the results of the biochemist, Elaine Gottschall's 4 year research into the subject. I have never tried the scd diet, but if Caitlyn does not want to try the NG tube feedings, perhaps suggest the scd diet to her. Instead of mash pototoes, try feeding her scrambled eggs for breakfast, and homemade chicken soup for lunch (I use organic broth), or you could do a whole chicken in the slow cooker which makes it super tender and moist.

Ideally, she would want to do the exclusive NG tube feedings for at least 3 - 4 weeks, and then slowly re-introduce foods, according to her symptoms. You have to start slowly with the NG tube feedings, or the scd diet. It is not recommended that you rush through either process. I set the pump on very slow in the beginning, and over the course of a few days, depending on her symptoms, I slowly increased the rate. I don't think she could do this by drinking the formula orally.

Until you start the EN, why don't you consider giving the scd diet a try. Here is a link for people who would like to start the diet, but have not yet bought the book, Breaking the vicious cycle:

Sorry it won't let me post the link - you will have to look it up, or maybe someone else can post it for you.


You mentioned that Caitlyn likes to bake, in time she could try the cake recipes found on scdrecipe.com - they all sound delicious! Maybe one day she could open a shop which has a section that specially caters to ibs/ibd/celiac

Please let me know if you have any other questions, or if I can help in any way. (And remember that we are making great strides in research these days!)

Last edited by Kelly2; 11-09-2011 at 02:55 PM.
11-09-2011, 11:25 PM   #112
kimmidwife
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Kelly2,
Thanks for the advice. It's been a rough night Caitlyn was crying that her stomach hurt and she can't stand doing the EN anymore. I disucssed with her adding a few foods from the SCD and still staying on the en and seeing if that would work. Her Father put his foot down with her and insisted she listen to us and try it this way. I understand how hard it is for her, but we really just want to help her. I told her bout SCD and not eating potatoes. (she was only having a tiny amount once a day) We looked over the website on SCd. We decided to continue her with the clears, the formula, and add in eggs which according to SCD are okay. so we made her clear broth with an egg in it (kind of like chinese egg drop soup) It hurt her stomach but everything she's been eating (even the formula) has been causing her pain. we have an MRI sheduled for next Thursday. Hopefully it will show what is going on on the left side which is where she is having most of her pain now.
11-09-2011, 11:28 PM   #113
David
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Thanks for sharing all the info Kelly. You should be able to post links now. Sorry for the issue, it's a tool we use to stop spammers but unfortunately sometimes affects good members too
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11-10-2011, 08:52 PM   #114
Kelly2
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Hi Kimmidwife,
I was thinking about you today, but was so rushed off my feet, i did not have time to correspond. How was Caitlyn today? Does she enjoy drinking the elemental drinks, or is it something she has to force herself to do? Was just thinking that perhaps a G tube might suit her better if she can't stand the idea of an Ng tube. I think you are doing the right thing in trying to at least get the majority of her nutrition from EN. Pain in the lower left side of your abdomen would normally indicate something like diverticulitis but in IBD would more than likely indicate an area of inflammation or narrowing. I hope it resolves itself through the EN you are doing.

David thanks for explaining why I could not post my message - makes sense now
11-12-2011, 09:30 PM   #115
kimmidwife
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Hi Kelly2,
Caitlyn does indeed have to force herself to have to drink the shakes she hates them. I asked the doctor about a G tube he said in Crohn's it can cause issues and they try to avoid using them. She refuses to try the NG tube. Last night she had a bad night again crying that she can't take it. So we have decided to continue the EN but allow her to eat the foods approved on the SCD. She had some egg and a little boiled chicken. She felt a little better just being able to eat a little. She is in a much better mood today. She did have pain after eating. She also has not been drinking her formula so has not been consuming enough calories which I think was one reason she was so irritable yesterday. I am not worried about her losing weight she gained 10 pounds from the steroids and she was at her ideal weight prior to them. I just want her to feel good and be happy and get healthy.
11-14-2011, 01:41 AM   #116
JohnnyRottenAppleseed
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I have health insurance. Is Ensure or any other liquid diets covered? Can my family doctor prescribe this? My GI never mentioned it
11-14-2011, 07:54 AM   #117
izzi'smom
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Our formula is covered (I *think* the receipt said it was some ridiculous amount, like $2000) with a $35 copay. We did have a script.
11-14-2011, 02:21 PM   #118
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Hi Kimmidwife,

I feel so bad for Caitlyn (and you!) having been in this predicament myself. I think you are doing the best you can, and that is all you can do! I am so sorry that she has had a tough time with the EN. You know my child would not do the SCD diet! I just want you to know that I don't necessarily agree with what her doctor said about the gtube. They have done a number of studies on the effects of gastrostomy for crohns and concluded that it was safe - here is one of the studies.

http://www.ncbi.nlm.nih.gov/pubmed/9177515

Another study concluded:

CONCLUSION:

Nutritional therapy is important in the management of children with growth failure due to Crohn's disease, though it may not be the only factor affecting growth. G-tubes are safe and well tolerated by children with Crohn's disease and should be offered to those children who do not tolerate prolonged use of an NG-tube.


I just wanted you to know this in case one day, you really needed another treatment option. How many Remicade infusions did she have before she failed the therapy? Did they do lab work to see if she made antibodies againt the Remicade?

Is she still having the lower left abdominal pain? Its a pity they could not get her in earlier for her test to determine what is causing this!
11-14-2011, 05:11 PM   #119
izzi'smom
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kim, I just wanted to mention that I have noticed a MARKED difference in Izzi when she ingests food. Her dad will offer her meals so she tends to eat often when she is with him and she does far worse on those nights (up 5-8 x a night) than she does on the days that I have her (I eat when she is otherwise occupied and never offer her food, although if she asks I will usually allow her something [she rarely asks]).
11-14-2011, 07:38 PM   #120
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Hi Kelly2,
Thanks for the info on the G tube if we end up needing it I will definitly now have proof to bring the doctor. She is having a lot of stomach pain especially on that left side and at other times it is everywhere. Today was a bad pain day she said.
Izzi,
SHe is having a very hard time with the not eating so I am letting her eat foods that are okay on the SCD. Basically plain chicken, eggs, and beef.
I also read about this other diet called the paleo diet or the caveman diet which seems to be pretty similar to the SCD.
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