EEN for colonic disease

[malorymug]

My son's GI says that EEN isn't very effective for colonic disease. He says we can do it if we want but he doesn't think we will see the benefits we want. He isn't very forthcoming with information right now, I guess we are in the wait and see phase.

We go in for another MRE on Tuesday to see if the infection has cleared up. If it has, we will proceed with remicade. If it hasn't, I'm going to push for EEN.

I've heard lots of great success stories with EEN as a bridge or to push to remission. Please tell me some of these stories were with colonic disease and not just upper GI disease.

 

[Tesscorm]

I hope the MRE clears him for remicade. :ghug:

My son's inflammation was primarily in the small intestine but, at dx, he did have some patches in his colon and duodenum. He did EEN for six weeks and it took him into clinical remission. If I remember correctly, all inflammation cleared except in the small intestine. After the six week EEN period, my son's only treatment for the next two years was supplemental EN. While this never completely eliminated all his inflammation, it kept it stable and he remained in clinical remission (no symptoms). In my son's case, I'm not sure it was as clearcut as saying EEN is successful for small intestine only.

I do believe EEN has shown to be more successful with treating inflammation in the small intestine but I think there are a number of people who have found EEN helpful in treating inflammation in other areas. Hopefully, some others who have experienced this will be along soon.

It is a challenging treatment but if your son is willing to try, it certainly can't hurt! I believe you mentioned on another thread that he tires more easily - if nothing else, EEN and supplemental EN will provide him with additional nutrients and may help him in that aspect.

Good luck! :ghug:

 

[crohnsinct]

:bigwave::OOOH! ME! ME! PICK ME!

O's disease was all colon and it worked beautifully!

Just because a therapy doesn't work as well for a certain area doesn't mean it doesn't work!

O has a friend with UC and EEN is supposed to work even less for UC then Crohn's in the colon and again it worked wonderfully!

I recently read a study or saw a paper that said they are actually finding the long held belief that it doesn't work as well in the colon is being proved wrong...DARN IT! Why didn't I bookmark that?

 

[malorymug]

Thank you! I love you guys! I was totally deflated when the doc was all "meh".

 

[Tesscorm]

I think doctors have BTDT so many times, sometimes they forget how important and willing the patient is to try something, anything - even if it isn't the most successful treatment they've used in the past! I'm sure it's also due to their own experiences with their patients.. it cud be that he's had patients who weren't able to comply, etc.... BUT, likely those patients weren't from this Forum!

I don't think CIC's GI was optimistic either, right CIC?

It was my son's ped GI who treated with EEN and supplemental EN. When we transferred to the adult GI, he didn't think the two years of supplemental EN did anything (or not much anyway...). Who knows??, all I know is S stayed in clinical remission throughout that period, even if it didn't get rid of all the inflammation.

If you can convince your son to stay with supplemental EN for the next couple of years, BONUS! :lol: Again, who knows?, but I do believe the extra nutrients my son got thru the formula helped keep him healthy/strong and that may have indirectly helped keep things in balance??

But, I think you need to be prepared... it might've been easier to convince your son if his GI was on board. Once the adult GI said he didn't think it really helped, S was ready to stop right away. I convinced him to stay with it and then to go to one or two Boost shakes when he went away to school. Told him, something had been working for two years, did he want to rock that boat?!? But, I saw how quickly he was ready to drop it once the GI wasn't behind it!

 

[Optimistic]

My son had colonic and EEN then supplemental EN worked wonders. Ped GI was 100% into EEN.

We had a big hiccup when I took him to an adult GI (I know, he was only 14 but he was over 6 feet and I wanted to hear it was anything other than Crohn's). We told DR he was doing EEN and he rolled his eyes. EEN had almost become normal before that and this really took him off track. He was ready to quit.

 

[Maya142]

My daughter has a friend who has UC and has done EEN. She did great!

Didn't the scopes just show that your son has inflammation in his stomach and small bowel too malorymug?

I agree - my daughter only agreed to a tube because her GI was insisting it was necessary. It would have been impossible to get her to agree if her GI wasn't on board. It was almost impossible anyway!

 

[Pilgrim]

H has colonic disease (although I have my doubts about her small bowel imaging results. ...)

She had two 6 week rounds of EEN and has been on supplemental (50-75 percent of calories needed) EN for the rest of the time. It seems to keep Humira humming, along with tweaks to dosing. It is a huge gift when she feels like crud (like today) and doesn't want to eat. It helps keep her growth on track also.