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Crohn's Disease Forum » Treatment » Prednisone/Entocort » When Entocort isn't working?


 
08-21-2016, 10:32 AM   #31
my little penguin
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Honestly with Ds he had to be admitted
Not once but 4 times
The first two times eventually got things settled some
But he had to go on amino acid formula
Absolutely no intact proteins
And they left him on only pedialyte /Popsicles /iv for days
Lost 6 lbs inpatient over 1.5 weeks

Add in ensure is whole proteins
Your system might not handle that and need semi elemental
Peptide or peptamen ( peptamen does not have carragean but is still milk based protein )
Only the amino acid based ones are easiest on your system but next to impossible to drink orally
Neocate
Elecare
Eo28 splash

Hope your Gi has answers in the am
Can you manage pedialyte ? To keep your electrolytes balanced ??
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08-21-2016, 11:35 AM   #32
Cat-a-Tonic
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I don't see my GI until tomorrow afternoon. Still over 24 hours to go until my appointment. Yeah, I have some gatorade and pedialyte. Right now I don't feel like drinking anything but water. I've lost 2 more lbs since yesterday (down 11 total in this flare so far). My only goal right now is to hang in there and rest/stay hydrated until my appointment tomorrow. My GI takes me seriously, he especially takes weight loss seriously, so I'm pretty confident that he can help me with pred and/or elemental diet. (I really want both at this point!) I'm determined not to leave the exam room until he can give me some satisfactory help. I've had the same GI for nearly 7 years now and he knows me, he knows I'm a pain in the ass and I won't back down until I get what I'm after, so I think I can talk him into both pred and EEN.
08-21-2016, 11:40 AM   #33
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I just looked on my prescription drug coverage's website to see if Peptide or Peptamen is covered - the good news is, it'd be partially covered (I'd pay $100 per month for either). So I've added that to my notes to ask my GI about tomorrow.
08-21-2016, 11:59 AM   #34
my little penguin
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Ask the Gi for samples first of every kind
So you can see what one you can drink
They should have elemental and semi elemental samples
Also call neocate /elecare they will send you samples
Good luck
08-21-2016, 12:50 PM   #35
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Elemental formulas like Neocate and Elecare are VERY hard to drink. Our GI said most older kids have a very hard time and are unable to drink them. Babies and very little kids manage better.

Also, Neocate and Elecare are typically pediatric formulas. I know because we had to switch homecare companies and since my daughter is 19, we tried to go to a company that catered to adults. They said they didn't even have Neocate/Elecare and that we'd need to find a pediatric homecare company.

There are different elemental options for adults -- I think Tolerex is one -- but you should really do some research. Your GI may not use Neocate/Elecare at all.

It is much more likely that your GI will agree to something like Peptamen. MOST kids with IBD are able to tolerate semi-elemental formulas like Peptamen. Our GI said it was unusual that my daughter couldn't.

Good luck!!
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08-21-2016, 04:42 PM   #36
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Thanks, Maya! I just entered Tolerex into the prescription price checker for my insurance, and that'd also be $100 per month (same as Peptamen & Peptide). Seems like that's a pretty common price for EEN under my insurance. So now I just have to do some reading up on which EEN might be the best for me (and like MLP suggested, I'm going to ask for samples). My GI is an adult GI, I don't think he sees any pediatric patients, so hopefully he's knowledgeable about EEN for adults. I guess I'll find out.
08-21-2016, 04:43 PM   #37
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How're you feeling Cat? Any better?

I really hope your GI has some ideas for you.
08-21-2016, 04:54 PM   #38
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I've only had water and gatorade since my morning Ensure gave me a lot of diarrhea and cramps. So I'm really weak, I just feel completely drained and like I'm just sort of hanging on. The good news is it's now less than 24 hours till I see my GI.
08-21-2016, 05:00 PM   #39
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I've only had water and gatorade since my morning Ensure gave me a lot of diarrhea and cramps. So I'm really weak, I just feel completely drained and like I'm just sort of hanging on. The good news is it's now less than 24 hours till I see my GI.
Get some rest and feel better


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08-22-2016, 03:27 AM   #40
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Man, I wish I could sleep. I went to bed around 10 PM, had to get up a few times with cramps, urgency & diarrhea. I think I fell asleep around 10:30. Slept okay for a short time. Then at 2 AM my guts jolted me awake with more cramps & d. I couldn't get back to sleep so I decided to get up and maybe I can nap later. It's currently 3:26 AM here. Only 12 hours 14 minutes until my appointment... at this point I'm finding myself sort of hoping that my GI just admits me to the hospital because I'm not a functional person anymore. I can't work, can't eat, and apparently can't sleep either. Thank goodness I can still drink water.
08-22-2016, 05:46 AM   #41
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Welllllll this is new. I've had a bit of trouble swallowing off & on with this flare, but up until now it was like, I'd choke a little bit when swallowing gatorade or ensure. I figured it was just a reflux thing as it kinda felt like whatever I was swallowing was immediately coming right back up. But, this morning, taking my morning pills with just water, I choked on them like twice. I haven't done that before. That's new and disconcerting. Yet another thing to mention to my GI!
08-22-2016, 06:09 AM   #42
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Since this is a thread where I'm just sort of thinking out loud, I'll ask this - what's the criteria for being admitted to the hospital? Is it just sort of up to the doctor's discretion? I'm starting to wonder if I need to be admitted for a few days to have tests and see if they can find anything that makes me feel better.
08-22-2016, 06:34 AM   #43
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I dont know how the system works in the US Cat but here a if a doctor has visiting rights to a public hospital then he can admit whoever is he/she wishes and for their own reasons.

Private hospitals are the same.
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08-22-2016, 07:57 AM   #44
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Thanks Dusty! My GI's office opens in like 5 minutes so I'm going to call then and speak to the nurse. It's not quite 8 AM here and I just don't know if I can make it till 3:40.
08-22-2016, 09:58 AM   #45
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Ds was admitted directly by his Gi
He called and told us to go in to er and told er to admit him
08-22-2016, 10:22 AM   #46
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MLP, ah, that might explain why I've been crampy and having d all morning. Ugh. I'm starting to doubt whether I can do this as I still don't feel very well. After yesterday's slight improvement, I'm sort of backsliding again.

Ron, call your doctor tomorrow. You might need to go back on Entocort for longer. As for me, I'm on 9 mg (3 capsules) of Entocort, the highest recommended dose, but I'm still doing this poorly. Ugh.
Thanks
08-22-2016, 11:57 AM   #47
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We have also gone the ER and been admitted through there. Our GI arranged it.

I've been actually thinking since yesterday that it sounds like you need to be admitted Cat. They can also do emergency scopes then and figure out what's going on.

Update us when you can -- thinking of you.
08-22-2016, 12:11 PM   #48
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We have also gone the ER and been admitted through there. Our GI arranged it.

I've been actually thinking since yesterday that it sounds like you need to be admitted Cat. They can also do emergency scopes then and figure out what's going on.

Update us when you can -- thinking of you.
Amen

08-22-2016, 12:18 PM   #49
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Oh Cat, I sure hope that they are able to help you quickly.
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08-22-2016, 04:52 PM   #50
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Thanks all - sorry for no updates for awhile, it's been a crazy day. I called my GI's nurse at 8 AM sharp, explained to her that I was still feeling bad and once again dehydrated, and she told me to go to the ER. She figured I'd be admitted.

So, I went to the ER, got IV fluids and IV steroids (which did seem to help, unlike the Entocort) and did get admitted to the hospital. And, Maya, you nailed it - they're doing a scope on me tomorrow. I'm starting prep in about an hour and a half, and I don't need to do much prep because I'm already pretty close to being cleaned out (I didn't have any solid food on the weekend, only Ensure, and I've only had water today).

I think this will be my first scope that's actually happening as I'm still in a flare - my previous 2 colonoscopies both couldn't be scheduled immediately so ended up happening in between flares, and found nothing. I'm not getting my hopes up too much, as my illness loves to hide on tests, but this is probably my best chance so far of finding the monster that lives in my guts.
08-22-2016, 05:13 PM   #51
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Good luck Cat! I'm glad they admitted you. Hope they can figure out what the problem is.
08-22-2016, 05:37 PM   #52
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Big hugs
Hope they find the cause on the scopes in the am .
Ds didn't have luck in that area
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08-22-2016, 06:08 PM   #53
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Welllllll this is new. I've had a bit of trouble swallowing off & on with this flare, but up until now it was like, I'd choke a little bit when swallowing gatorade or ensure. I figured it was just a reflux thing as it kinda felt like whatever I was swallowing was immediately coming right back up. But, this morning, taking my morning pills with just water, I choked on them like twice. I haven't done that before. That's new and disconcerting. Yet another thing to mention to my GI!
Esophageal stricture maybe? I have one, although caused by heartburn/GERD rather than Crohn's. I started choking on things too, including liquids. I had it fixed by having the esophagus dilated. It started to come back after while so they put me on PPIs.
08-22-2016, 07:03 PM   #54
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Thanks Maya! I talked with the doctor who will be overseeing the scope, and he was very honest - he said I'm a tricky case and there's a good chance that nothing will be found. But of course he's going to take a bunch of biopsies anyway and who knows.

Ugh, everything that I've read about Golytely is true - it DOES taste like seawater!
08-22-2016, 07:06 PM   #55
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If it does show anything, what about an MRE or pillcam? It could be hiding where a scope can't reach.

Good luck with the prep -- sounds awful.
08-22-2016, 07:06 PM   #56
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MLP, they haven't given me a time yet for the scope. Could be in the morning or I could be waiting all day... on NPO. Ugh, fun.

Scipio, yeah, I already have GERD and am on a PPI (Nexium) so that's a possibility. Although my swallowing seems to have improved as the day has gone on so maybe it was just a reflux thing. Something to look into if it comes back.
08-22-2016, 07:09 PM   #57
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I honestly don't know, I think the plan for now is just to do the colonoscopy, I don't think the GI team here has thought much beyond that just yet. The doctor I talked to who is overseeing things, he did suggest a few things (check my pancreas, maybe do a breath test for SIBO). But I think those were just suggestions for the future and not necessarily things they're going to do now.
08-22-2016, 09:00 PM   #58
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Hah, maybe I could do one of the "undrinkable" elementals. I just finished my 4th glass of Golytely and it's actually growing on me. I don't really mind it at all. It's more than tolerable. It's not wonderful or anything, but I also don't think it's bad. And it's not giving me crazy urgent d. Like, the d from this flare has been way more urgent and crampy than the d from this prep. Maybe that's why I'm not hating it, it's an improvement! Ha ha
08-22-2016, 09:08 PM   #59
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As Ds said elemental formula is an aquired taste
He tried them all
Neocate Jr choc is the most tolerable for him
Drink with a straw and a lid to by pass taste buds
Ultra cold
And pinch your nose for the first few days
Fingers crossed for Tuesday
08-23-2016, 06:30 PM   #60
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Well, colonoscopy visually was normal. Waiting on biopsy results but I'm not getting my hopes up. My GI wants to wait to make any changes, so I've got to wait for those results before I can continue to plead my case for pred and EEN. Ugh. I'm probably being sent home tomorrow. Frustrated.
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