How long to use enteral nutrition when also using meds

[Octobergirl]

Hi,

I have Crohn's colitis which hasn't been very easily controlled since I first was diagnosed. I flared a large part of last year and was finally hospitalized last summer and put on IV steroids and TPN while we waited to see if Imuran was going to work. (I have already failed Remicade, Methotrexate, and Humira). I did TPN for 4 weeks and then surprisingly the Imuran kicked in and I was feeling good for about 4 months. I'm pretty sure that eating too much coconut flour triggered this last flare. I'd rather avoid steroids since I was on them for 8 months of last year and had some serious anxiety and depression after getting off them.

I started what I guess would be a semi-elemental diet yesterday. I'm making my own with protein isolate and tapioca maltodextrin, coconut oil and taking a vitamin. Since I'm already on Imuran, which isn't currently working for my colitis but is controlling my extra-intestinal symptoms, is it possible for me to get back into remission with the semi-elemental diet and then let the Imuran take over again? And if so, how long do you suggest? I was doing really well on Imuran to the surprise of my GI and myself, and I'm afraid to give up that option since I don't have many left. My GI was pushing Entyvio, but I want to save that option until I've really drained all my others.

Anyone have experience with using an elemental diet in conjunction with meds and also with having Crohn's colitis as opposed to having it located in other areas? Do I need to do the whole 6 weeks if I'm already on a med? I see my GI Friday, but I'm kind of doubting he will be supporting my elemental diet.

 

[Tesscorm]

Not sure I can answer all your questions but, here's some thoughts/info... (also, my son's crohns was primarily in his TI but there was some areas in his colon and duodenum at diagnosis.)


If you are going to try exclusive EN (no other foods), are you sure the formula you are making will provide you with all necessary nutrients? Not saying it doesn't, am just saying that while exclusive EN will provide bowel rest, you will need all nutrients to stay healthy and make sure your body has the fuel it needs to heal itself. If you have any doubts, can you not use the typical formulas? (ie Peptamen, Modulen, etc.)

My son used exclusive EN (3000 calories/day of elemental formula - Tolerex) for six weeks to induce remission (but, I've read EEN has it's best success when used the first time??), he then continued on supplemental EN (1500 calories per day) for another 2 years with no other meds. The supplemental EN did maintain his crohns activity but was not enough to completely eliminate all inflammation. He was then put on remicade. Since beginning remicade, he has continued drinking Boost shakes each day (250-500 calories). He has been lucky enough to not have flared since his diagnosis (but, everyone reacts differently :ghug

I read a study that showed patients who continued on supplemental EN while on remicade showed a marked increase in remicade's continued success. Not sure if this benefit would apply to imuran as well. Also study did not show a sigificant difference if the formula was elemental, semi- or polymeric.

I have no way of knowing if drinking the 1-2 Boost shakes each day is having an impact on my son's crohns, however, I don't think there's any downside and, at the very least, it ensures a constant intake of vitamins and minerals.

Good luck on Friday! :ghug:

 

[happy]

Hi Octobergirl,
The following information may be helpful to you: http://www.amazon.com/Crohns-Getting-remission-Enteral-Nutrition/dp/0982123442
This book, "Beat Crohn's: Getting to remission with Enteral Nutrition" describes many methods of doing EN, including homemade ones, and it also discusses using EN with medications.

 

[Octobergirl]

Hi Tesscom,
Thanks for your response. I'm actually not sure if what I'm doing will supply the proper nutrition that I need. I looked up an elemental formula online and saw one from Jini Patel Thompson that is basically the outline that I'm following. I'm just using the homemade formula both because it saves money and also it doesn't have ingredients that I'm unsure how my body may handle them.

That's pretty amazing your son did well on just the elemental diet and supplementing with it for so long. I'm glad he's still doing well.

Hi Happy,
Thanks for the suggestion. I actually did check that book out last summer after I was on TPN, but I've forgotten a lot that I read. I may check it out again, but it was an interlibrary loan, so I'll have to wait a bit. If you don't mind my asking, where is your Crohn's located? I think the book mentioned how dietary measures work for Crohn's not for U.C., but then I don't believe there was much written on what happens if you have Crohn's Colitis.

 

[happy]

My disease is located in the ileum. And yes, most of what I have read discusses success with EN when it is treating disease in the ileum rather the the colon.

 

[lenny]

Octobergirl, sometimes you can get help paying for the EEN drinks. We fought our insurance company for months and they finally agreed to pay 100%. United Healthcare.

 

[Octobergirl]

Hi everyone,

Lenny, sorry for the late response, but thank you for the advice. I'm glad you got yours covered since it can be really expensive, which is one of the reasons I went the home made route.

I'm checking in with great news! After just under 3 weeks on EEN my CRP went from 55 to 10.7! I'm pumped and so excited! I was skeptical about it working for me since I have Crohn's colitis, but it's obviously doing it's thing and helping me from going back on steroids. I also found I had dropped out of the therapeutic level of Imuran, so my doctor bumped that up and I'm hoping once that kicks back up again when I return to eating normal foods, it will keep me in remission.

For those who have done EEN, did you follow a strict elimination diet when adding foods back in? I borrowed the John Hunter book from interlibrary loan back when I was on TPN, but I can't remember what it said exactly, though I did copy the lists of suggested foods to add back in first. Do you suggest I rent it again?

Happy, I think I read you had to do a strict elimination diet to add foods back in. Does that mean you added one food back in at a time? And if so, how long before you added another? Did you have to do spices one by one too?

I'm so thankful this has helped me avoid steroids again, but I want do try and avoid relapse, and also avoid having to start EEN all over. Any advice from people who have done this before? I'm going to stay on my medication though for sure and won't be trying to do it as the sole therapy.

 

[happy]

Glad to hear that you are having some success, Octobergirl.

Yes, I would suggest that you review the info in the book. Yes, I did the full elimination rather than the LOFFLEX (low fat, low fibre, partial elimination) diet. Both are mentioned in the book. Yes, I added back one food at a time. Usually I added back foods every four days except for grains such as wheat and oats, which I tested for three weeks (and found that I could not tolerate them). I tested most common herbs initially and then when I had success with that I just used spices as called for in a recipe. I don't have trouble with the usual baking spices, but I do with hot spices and some savoury ones. I added back spices more toward the end of the process. I am severely gluten and dairy intolerant, so I am very careful to make sure the spices that I use do not contain gluten as a filler or to prevent clumping; and I do not purchase bulk ones as they could be cross-contaminated with gluten.

This following thread describes most of the process that I followed:http://www.crohnsforum.com/showthread.php?t=31028

May you have continued success.

 

[Octobergirl]

Thank you, Happy. I really appreciate the link to your thread. It was helpful to read how you went through the process of reintroducing food. I'm amazed by your discipline to be on EEN for so long and then going through the slow process of reintroducing foods.

I'm a little concerned that I won't know if a food is bothering me, because I don't usually have an immediate reaction to foods nor get diarrhea from my crohn's until my inflammation is really high. I guess I'll just see how things go when I reintroduce foods. Thanks for your help.