Entocort Enema - except you drink it

[Brad P]

Entocort Enema - except you drink it - UPDATE

My GI is getting me to try drinking an Entocort enema to help with inflammation in the duodenum. Has anyone done this?

 

[Dustin]

I have never done that one... It almost sounds like an oxymoron... drinking an enema. Good luck - hopefully it works for you.

 

[Sue-2009]

Wow!!! NEver heard of it...I do the enemas...I think that is what is holding crohns at bay right now... Sue

 

[Brad P]

I got some more information now for the group.

The kit (I got last night) comes with 7 pills (the Entocort), 7 bottles of deliverable liquid, and gloves. All I have to do is get 100ml of water (or flavored water, etc) and dissolve the pill in it and drink it. The bottles of deliverable liquid I can discard. So to say I have to drink the enema is not quite accurate.

I just dissolved the pill in some flavored vitamin water, 100ml, and drank it. Never tasted anything different, didn't seem to be a big deal. I am going to give it an hour or so, then eat breakfast.

 

[Crohn's 35]

I learn something new everyday... never heard of this in all my 18 years of dx... let us know if it works.

 

[Brad P]

I was told the regular Entocort capsule doesn't work until further down the bowel. My doctor wants it to work immediately, as my problems are in the duodenum. The dissolvable form of Entocort for enemas works immediately. But I can't find any information on the net on taking Entocort this way.

This was recommended to my GI from a GI in Toronto at Mount Sinai who is at the top of his field.

 

[Crohn's 35]

I went to Mount Sinai to see a specialist Dr Greenberg... he was a good doc but not much help. Just confirmed things I guess. What doc are you seeing> Yes the Duodenum is farther up and hard to reach. Hope you get answers soon. Let us know what you find.

 

[Brad P]

UPDATE: I have been taking this now for 2 weeks come Tuesday and have noticed an improvement. It has at least taken the edge off my symptoms. Although I am far from feeling back to normal again. I take it in the morning when I get up, and wait an hour or so before eating breakfast.

I am also back on Imuran and have been easing back into that the past 3 weeks. I started on 25mg for 2 weeks, and then 50mg for 2 weeks. I don't think the Imuran has played a part in me feeling somewhat better due to the short time on it and the low dose starting.

 

[Dustin]

I am glad to hear it is starting to help Brad. Hopefully it continues to do so.

 

[krs2]

Brad - you are the only other person who I have found who knows about this. Basically I have gastroduodenal crohn's and I needed the entocort to work further up in the digestive tract too. So what my Dr. had me do was open up 3 entocort caps, empty the contents, crush up the pellets and eat the powder. It's a completely off-label use and he said he's only had one other patient ever try it.

After a follow up endo he didnt notice any improvement so he had me discontinue the treatment. What was discouraging about this treatment was 1) there wasn't an established method of delivery except "eat the powder and sip some water". It sounds like your Drs have a standard way of delivering the meds. And 2) My Dr gave me extra Entocort so I could crush some for my duodenum and swallow some whole for my small intestine. After I ran out of the free supply and went to his office to get more and his nurses told me I should "never" be taking 6 pills in a day and they wouldnt write me a script for 6/day (not that my insurance would probably cover it anyway but it was worth a shot...) Obviously a misunderstanding on their part, but after that I only had 3 pills/day and I had to choose between my upper or my lower digestive tract........I chose lower because honestly I'd rather have heartburn than diarrhea....

 

[Brad P]

Brad - you are the only other person who I have found who knows about this. Basically I have gastroduodenal crohn's and I needed the entocort to work further up in the digestive tract too. So what my Dr. had me do was open up 3 entocort caps, empty the contents, crush up the pellets and eat the powder. It's a completely off-label use and he said he's only had one other patient ever try it.

After a follow up endo he didnt notice any improvement so he had me discontinue the treatment. What was discouraging about this treatment was 1) there wasn't an established method of delivery except "eat the powder and sip some water". It sounds like your Drs have a standard way of delivering the meds. And 2) My Dr gave me extra Entocort so I could crush some for my duodenum and swallow some whole for my small intestine. After I ran out of the free supply and went to his office to get more and his nurses told me I should "never" be taking 6 pills in a day and they wouldnt write me a script for 6/day (not that my insurance would probably cover it anyway but it was worth a shot...) Obviously a misunderstanding on their part, but after that I only had 3 pills/day and I had to choose between my upper or my lower digestive tract........I chose lower because honestly I'd rather have heartburn than diarrhea....

Wow...someone else has done this! sort of! haha

I'm not sure I call how I am taking it a standard method of delivery. Dissolving the enema pill in water and drinking it sounds better than breaking caps apart though. I do wonder if one dissolvable pill a day is enough.

Sorry it never worked out for you. It hasn't worked that well for me, so it seems, but it may be taking the edge off my symptoms. It is not saving me from a potential surgery.

 

[Brad P]

Just an update. I had an upper GI follow-thru yesterday and the radiologist could not find a flistula in the duodenum that was seen over a month ago with the scope. Either the upper GI failed to show it or the Entocort I've been taking has healed it. Thought this was interesting to note.

On the downside, he found narrowings further down the bowel. It took 5.5 hours for the barium to reach the end of my small bowel, which is a long time especially considering I lost 4ft in a past surgery.