My doctor wants me to go on enteral nutrition. My Crohn's symptoms are really bad and he says this while being infused with Remicade is my last hope before resection. I'm curious if there are any enteral nutrition success stories out there. I figure if not, then I at least want to enjoy my McDonald's before my guts get removed. But if people have been having success, I'm willing to give it a go.
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Enteral Nutrition success stories
- Thread starter CrohnedOut
- Start date
nogutsnoglory
Moderator
It works if you have inflammation. If you have scar tissue it works but on back on a regular diet the problem is still there.
My son's Crohns has been treated through EN therapy. He was diagnosed in May with moderate Crohns in his TI and some areas in his colon and duodenum. His treatment was a week of IV flagyl and he then commenced six weeks of EN therapy through an NG tube. His only other medication was an antacid (Nexium). Once the six weeks ended, he reintroduced all foods over a 3 week period and has continued the EN therapy at half dose, 5 nights per week (during the day, he eats a regular diet). The only foods that have been eliminated from his diet are seeds, nuts, popcorn and limited fruit/veg skins (i.e. apple peels). His supplements are calcium, vit D and krill oil.
While his latest u/s and MRE still showed some mild inflammation, the EN therapy seems to be keeping it well controlled. Periodically, he has some random symptoms (constipation, fissures, etc.), so far, these have been shortlived and treatable with only 'home' remedies (i.e. prune juice, sitz baths).
EN has a comparable success rate at inducing remission to steroids in children (my son is 17), however, is not as successful at maintaining long term remission compared to other meds.
I also have a friend whose daughter (10 years old) has moderate-severe Crohns. (I may be missing some details but...) Last summer, she was quite sick, had lost weight, in pain, etc. She was diagnosed with an abscess, infection and possible perforation and doctors felt that surgery was her only option. She was fed through a picc line and given IV antibiotics at the hospital for approx 3 weeks (perhaps other meds were involved??). She was then sent home still with the IV antibiotics and was to attempt EN therapy for six weeks prior to surgery (I believe the reason was simply to try to alleviate some symptoms and build up her strength) but her GI was certain that this would not remove the necessity for surgery. However, somehow, ongoing tests during the six weeks showed that the abscess and infection were clearing up and the 'possible' perforation also disappeared. Once the six weeks ended, she began treatment with remicade. So far, she is doing very well and has had no need for surgery.
You can also find some additional info in the Enteral Nutrition thread in the Parents with kids w/IBD subform (http://www.crohnsforum.com/showthread.php?t=22753).
Good luck :ysmile:
While his latest u/s and MRE still showed some mild inflammation, the EN therapy seems to be keeping it well controlled. Periodically, he has some random symptoms (constipation, fissures, etc.), so far, these have been shortlived and treatable with only 'home' remedies (i.e. prune juice, sitz baths).
EN has a comparable success rate at inducing remission to steroids in children (my son is 17), however, is not as successful at maintaining long term remission compared to other meds.
I also have a friend whose daughter (10 years old) has moderate-severe Crohns. (I may be missing some details but...) Last summer, she was quite sick, had lost weight, in pain, etc. She was diagnosed with an abscess, infection and possible perforation and doctors felt that surgery was her only option. She was fed through a picc line and given IV antibiotics at the hospital for approx 3 weeks (perhaps other meds were involved??). She was then sent home still with the IV antibiotics and was to attempt EN therapy for six weeks prior to surgery (I believe the reason was simply to try to alleviate some symptoms and build up her strength) but her GI was certain that this would not remove the necessity for surgery. However, somehow, ongoing tests during the six weeks showed that the abscess and infection were clearing up and the 'possible' perforation also disappeared. Once the six weeks ended, she began treatment with remicade. So far, she is doing very well and has had no need for surgery.
You can also find some additional info in the Enteral Nutrition thread in the Parents with kids w/IBD subform (http://www.crohnsforum.com/showthread.php?t=22753).
Good luck :ysmile:
I am on my 3rd round of EN in 2 years, this time via an nasojejunal tube. It has helped me each time but with other meds the last 2 times. I am not sure as to whether it is helping this time completely...it seems to have helped my small bowel symptoms but not my gastroduodenal symptoms.
While not technically EN, I've gone into remission from drinking Ensure every day (nothing else but water), and have stayed in remission for a few years now. I eat regular foods again (but I stay away from popcorn, pork, greasy foods, spicy foods except on rare occasions), and I also still drink ensures every day. Not sure if I even need to anymore, but I've gotten so used to the convenience and taste of them that I still do it.
I have also been on low dose prednisone (5mg/day) for the past 3 years but that didn't put me in remission, the liquid diet did. The prednisone and ensure are probably working together to keep me there though.
PS: By remission I mean zero sympoms for a couple years now. Not one incident of diarhea or loose stools, no blood, no stomach aches, no crohns symptoms at all. And before I was diagnosed with Crohns I had irrital bowel syndrome all my life, and I haven't had that either
I have also been on low dose prednisone (5mg/day) for the past 3 years but that didn't put me in remission, the liquid diet did. The prednisone and ensure are probably working together to keep me there though.
PS: By remission I mean zero sympoms for a couple years now. Not one incident of diarhea or loose stools, no blood, no stomach aches, no crohns symptoms at all. And before I was diagnosed with Crohns I had irrital bowel syndrome all my life, and I haven't had that either
Hi Chuck,
A few days ago, I requested some tests for my son (he was showing some symptoms) and I wanted to test his CPR, Sed rate, etc. They showed an increase since his last tests in August.
I'm just wondering, if the Ensure put you into remission, what was the reasoning for the low dose pred? Simply to maintain the remission or were you having some mild symptoms?
And, while you have been in remission, have you continued testing for inflammation (blood tests or ultrasounds, etc.)?
Sorry for all the questions...:blush: The symptoms my son was presenting weren't severe but there were a few, however, at the same time, there were other possible explanations for some of them??? So, on one hand, I don't want to be dismissive about the test results but, on the other hand, I'm wondering if I'm reading too much into one test.:yrolleyes:
Thanks
A few days ago, I requested some tests for my son (he was showing some symptoms) and I wanted to test his CPR, Sed rate, etc. They showed an increase since his last tests in August.
I'm just wondering, if the Ensure put you into remission, what was the reasoning for the low dose pred? Simply to maintain the remission or were you having some mild symptoms?
And, while you have been in remission, have you continued testing for inflammation (blood tests or ultrasounds, etc.)?
Sorry for all the questions...:blush: The symptoms my son was presenting weren't severe but there were a few, however, at the same time, there were other possible explanations for some of them??? So, on one hand, I don't want to be dismissive about the test results but, on the other hand, I'm wondering if I'm reading too much into one test.:yrolleyes:
Thanks
Tesscorm,
In V's case, all f/u included all the usual tests and she has been scoped every year, and had a capsule endoscopy.
She was in CLINICAL remission from 3mo post-dx/starting NG formula feeds, but never attained biochem remission, i.e., her labs always indicated the presence of inflammation, esp lactoferrin which is always sky high.
Even though the feeds haven't eliminated all inflammation, they have reduced the systemic effect of it. And the guaranteed nutrition is something I wouldn't give up. While still sick, and now about to start Humira, she is much LESS sick than she would be if her nutritional status wasn't as good as it is, and likely would not have had 3 drug free years.
In V's case, all f/u included all the usual tests and she has been scoped every year, and had a capsule endoscopy.
She was in CLINICAL remission from 3mo post-dx/starting NG formula feeds, but never attained biochem remission, i.e., her labs always indicated the presence of inflammation, esp lactoferrin which is always sky high.
Even though the feeds haven't eliminated all inflammation, they have reduced the systemic effect of it. And the guaranteed nutrition is something I wouldn't give up. While still sick, and now about to start Humira, she is much LESS sick than she would be if her nutritional status wasn't as good as it is, and likely would not have had 3 drug free years.
Hello everyone.
I am new to this forum. My daughter was first diagnosed with Crohn's disease when she was 5. We had been on a trip south and thought that she had picked up a bug. After several months they diagnosed her with IBD. Due to her age and lots of reading on our part we decided to go with enteral feeds. Initially she was on sulfasalazine, and prednisone.
She did full time feeds for three months, 20 hours per day 4 hours off. She was gradually weened off of the prednisone and due to a reaction to the sulfasalazine was switched to salofalk. We started to reintroduce food and the feeds were gradually cut back to 5 nights per week for approx. 8 hours. After six months she was having one bm per day and formed. her energy was back and she was able to resume all of her normal activities. We continued the tube feeding until she was 17. At age 11 we had to discontinue the salofalk due to an allergy that she developed to sulfa. Imuran was suggested but her counts were all looking so good we opted for no meds!!! My daughter was the "poster child" so to speak for tube feeding. I truly believe that complete bowel rest and the pred helped put my daughter into a quick remission and the 5asa helped to maintain it. The other positive with the enteral feeds was that it helped with her growth and overall health. We were able to add some supplements to the formula as well. Today at 17 my daughter is 5'6 and has reached her growth potential. In August of this year she had her stomach tube removed and stopped the feeds completely about six months before.
She was getting ready to move from our children's hospital to the adult site where enteral feeding isn't an option.
Unfortunately after a band trip to Cuba she ended uo with two types of bacterial infection (salmonella and aeromonas ) she was hospitalized and given intravenous antibiotics.
A few months later she had a severe crohns flare and is now on prednisone and has just started imuran. Possibly the antibiotics wiped out her intestinal flora and put her immune system into overdrive. She is having a tough time adjusting to the meds. I would like to see her back on the enteral feeds but that is apparently not an option.
I know what a tough decision it is to put your child on full time feeds and that it doesn't work for everyone. However it can aid in your child's growth, nutrition and overall health. I can only say that it worked for my daughter and we were very fortunate to keep her drug free for six years.
I hope this is helpful.
I am new to this forum. My daughter was first diagnosed with Crohn's disease when she was 5. We had been on a trip south and thought that she had picked up a bug. After several months they diagnosed her with IBD. Due to her age and lots of reading on our part we decided to go with enteral feeds. Initially she was on sulfasalazine, and prednisone.
She did full time feeds for three months, 20 hours per day 4 hours off. She was gradually weened off of the prednisone and due to a reaction to the sulfasalazine was switched to salofalk. We started to reintroduce food and the feeds were gradually cut back to 5 nights per week for approx. 8 hours. After six months she was having one bm per day and formed. her energy was back and she was able to resume all of her normal activities. We continued the tube feeding until she was 17. At age 11 we had to discontinue the salofalk due to an allergy that she developed to sulfa. Imuran was suggested but her counts were all looking so good we opted for no meds!!! My daughter was the "poster child" so to speak for tube feeding. I truly believe that complete bowel rest and the pred helped put my daughter into a quick remission and the 5asa helped to maintain it. The other positive with the enteral feeds was that it helped with her growth and overall health. We were able to add some supplements to the formula as well. Today at 17 my daughter is 5'6 and has reached her growth potential. In August of this year she had her stomach tube removed and stopped the feeds completely about six months before.
She was getting ready to move from our children's hospital to the adult site where enteral feeding isn't an option.
Unfortunately after a band trip to Cuba she ended uo with two types of bacterial infection (salmonella and aeromonas ) she was hospitalized and given intravenous antibiotics.
A few months later she had a severe crohns flare and is now on prednisone and has just started imuran. Possibly the antibiotics wiped out her intestinal flora and put her immune system into overdrive. She is having a tough time adjusting to the meds. I would like to see her back on the enteral feeds but that is apparently not an option.
I know what a tough decision it is to put your child on full time feeds and that it doesn't work for everyone. However it can aid in your child's growth, nutrition and overall health. I can only say that it worked for my daughter and we were very fortunate to keep her drug free for six years.
I hope this is helpful.
My 15 yr old is on Remicade (just had his 2nd infusion two weeks ago) and still suffering symptoms- diarrhea, bloating, cramps, vomiting. I do believe the Remicade is a life saver but it can not and should not be relied on to do the job all by itself. I think EN supplementation and probiotics (we are doing two separate brands with different strains) plus fish oil and sub-lingual Vit B complex are all good concomitant therapies. We are learning as we go because even Docs do not know what will work and what won't. There is a magic combo out there for us, we just need to find the right one.
Good luck to you and keep us posted on how the EN goes.
ALOHA
Good luck to you and keep us posted on how the EN goes.
ALOHA
I did the tube feeding (through a tube in my nose which I removed every day) for over a year. I would pump in 12 cans of Boost every night and not eat/drink anything besides water throughout the day. It put me into complete remission and got me through till I turned 18 and my doctors had more drugs to try. If the Humira ever stops working and there were no other medications left, I wouldn't hesitate to do the tube feeding again.
Our daughter just finished 6 weeks of EEN. She used Boost with no tube. It went really well. I don't know if she's in clinical remission but it lowered her ESR from 65 down to 25 (last lab I checked) which is still high but much better. Her energy levels are MUCH better. Her bowels are working normally. She put on a little weight, too.