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When Entocort isn't working?

Cat-a-Tonic

Super Moderator
Hi all, brief history on me - I'm not fully diagnosed yet but it's almost certainly some type of IBD. Entocort has always worked well on my flare-ups in the past, usually it kicks in fairly quickly and I feel noticeably better.

However, not this time. I started flaring 4 weeks ago. Called my GI and he put me back on Entocort (9 mg). I've been back on the Entocort for nearly 4 weeks. But, it doesn't seem to have kicked in. I've been feeling worse, especially this week. Still having a lot of nausea, fatigue, urgent watery diarrhea anywhere from 10 - 20 times per day.

Anybody else had this happen? Did the Entocort eventually kick in? Or did the "flare" turn out to be something else like an infection? I did stool samples on Tuesday and will be calling my GI's nurse as soon as the office opens up to see if those results are back yet. I just don't know what to do, though. This really feels like a flare, and I'm super frustrated that I'm getting worse instead of better. I see my GI on Monday so hopefully then he'll have some answers for me, but in the meantime I thought I'd ask you guys. Anybody else experience an Entocort fail when it worked great in the past?
 
Could be C diff with that much D.
Entocort has usually worked well for me in the past too, but not in my current flare. I am bleeding pretty quickly now. I am seeing a new IBD specialist on Weds and will probably be put on Prednisone to stop the bleeding and then switch me to Remicade as the Humira isn't doing anything.
 

Cat-a-Tonic

Super Moderator
Thanks for your response! I was also thinking it might be c diff. However, I got my stool sample results back today, and I tested negative for c diff. I'm also thinking I'm going to ask my GI to switch me to pred, as that might work better, and I am going to ask him about enteral nutrition as well.
 

Maya142

Moderator
Staff member
Have you had a Fecal Calprotectin and other stools tests done (other infections besides CDiff)? FC can tell you if it's inflammation (which I'm guessing it is). It's a pretty accurate test. But if it's not inflammation, that might be why Entocort is not working.

Other than that, some people respond better to Pred. It depends where your disease is and how severe it is. If it's in your terminal ileum/ascending colon and is not so bad, Entocort should work.

Enteral Nutrition is much less popular with adult GI's, just as a head's up. It doesn't work quite as well in adults. But it's definitely worth asking for!
 

Maya142

Moderator
Staff member
I'll tag my little penguin. Her son had similar diarrhea and it wasn't IBD or an infection, as far as they could tell. He used EEN as treatment.
 

Cat-a-Tonic

Super Moderator
Maya, yes, my fecal calprotectin was within the normal range (they said it was 32 and the normal range is 0-50). I was told that my CRP and ESR were also normal although I wasn't given those numbers (I'm sure my GI will discuss them with me on Monday).

And yeah, unfortunately I'm not fully diagnosed yet so we're not exactly sure which IBD I have or where exactly it's located. Entocort has worked great in the past which leads me to think I have colon and TI involvement.

My GI doesn't like to put me on a lot of IBD meds since I'm not officially diagnosed, so I'm willing to bet he'd be open to the idea of putting me on EEN since it's not actually medication. Honestly, he's probably going to be more on board with that idea than pred (although I'm going to push for both).
 

Cat-a-Tonic

Super Moderator
Oh, and I just realized I didn't answer your question about other stool tests - yes, they tested for a variety of bacteria (campylobater, salmonella, e coli, etc) and a couple other things (cryptosporidium and one other that I don't remember). My GI is very thorough so he had me do a whole bunch of stool tests. They also were very thorough when I went to the ER today (that's where they did CRP and ESR, and they also did CBC, electrolytes, etc). The only abnormal result was that my potassium was low, that was it. Everything else normal.
 

Maya142

Moderator
Staff member
What about scoping you now when you're flaring? They're more likely to find something if you're flaring.

FC is not a perfect test, so you may still have inflammation. But with an FC that low, I agree, Pred might be hard to get :(.

The other thing you could do is try to get some Boost or Ensure and start enteral nutrition by yourself. There are kids on the parents forum who have used those formulas to do EEN. You don't necessarily need something like Peptamen which is much more expensive. Insurance may not even cover it.

But if you try Boost/Ensure and it works for you, well, then perhaps that will convince your GI to give you a script.

Kids are typically put on 100% formula. Sometimes 80-90% works too. We have used supplemental EN (first Peptamen Jr then Neocate) for my daughter, but that works better for weight gain. Our insurance does cover the formula but that is because she has a feeding tube.

Good luck!!
 

my little penguin

Moderator
Staff member
Big hugs
Ds had diarrhea for about 6 weeks
Tried EEN with peptamen Jr. didn't stop it
Admired for fluids and npo diarrhea stopped
Started clears including ensure clear ( milk protein )
Yep diarrhea came back
Npo again stopped
You get the idea
Multiple c diff and stool tests/Mre /pill cam /upper lower scope plus tons of other tests
All normal
After clean scope tried neocate Jr as EEN
Diarrhea slowly stopped and hasn't been back thankfully since end of May
Ds has slowly reintroduced single foods since the end of June
Still avoiding milk /wheat and some EEN of neocate Jr
But adding things one at a time

No one has any idea of the cause
Or if it will happen again
Iv steriods for his Mre did not stop the diarrhea btw
Or the oral pred he was on for his sweets syndrome

Hopefully een will help you
But realized ds had to basically protein free just amino acids and it tastes bad but he does drink it orally
In the beginning he had 66 oz a day
Completely get the wanting it to just stop

Good luck
 

Cat-a-Tonic

Super Moderator
Maya, the thought of doing a scope has crossed my mind as well. I guess it all depends on how quickly my GI can get me in. I'll definitely mention it to him on Monday.

That's good to know about insurance maybe not covering EEN. I don't like to do Boost/Ensure because of the carrageenan, but I think Ensure Clear is carrageenan-free. Yet another thing to talk about with my GI.

As far as supplementing EN for weight gain, I wouldn't be opposed to that idea either - I've lost about 9 lbs so far in just 4 weeks, and I am not overweight to begin with (I started at 5'8" and 146 lbs before this flare, I'm now at about 137 lbs and starting to get worried because I can't seem to stop the weight loss). I think ideally I'd like to do EEN for awhile because food is just not my friend right now. I'm having an inordinate amount of diarrhea compared to the very small amount of food I'm eating. Today I had a banana and an english muffin, but I've been to the bathroom probably 20 times with watery d. Hey, if my GI does want to do a scope, I won't even have to prep! :p I end up basically cleaned out just by eating something small!

MLP, that sounds horrendous. I'm glad to hear your son is doing better now but what a tough road to get to feeling better. I'm in awe of the kiddos who go through this horribleness, I'm a 36 year old woman and I'm crying every day because it's so ridiculously hard. I can't imagine being a child and having to deal with this. Give your son a big hug for me!

When you say NPO, do you mean he was still drinking water, or nothing at all? I've had such issues with diarrhea lately, I still need to drink a lot of water to stay somewhat hydrated (and I've had to go and get IV fluids twice this week so I'm not even doing a good job at that). How long was he NPO before going on EEN?
 

Maya142

Moderator
Staff member
I believe MLP's son was hospitalized and on IV fluids and popsicles/pedialyte.

As for carrageenan, Peptamen and Neocate definitely do not have it. But both are very expensive. Typically semi-elemental formulas like Peptamen are pretty bad tasting. Elemental formulas like Neocate are even worse (my daughter made me try both ;) ). Neocate was truly awful -- I could barely get that down. I'm amazed by kids who can do it!

If you look for powders -- Ensure has a powdered vanilla version I think -- those are typically Carrageenan free.

If you are going to do EN or EEN seeing a nutritionist or dietician might help. They can tell you how many calories you need to supplement or if you want it to replace food entirely.

People with IBD often need more calories than you'd expect. My daughter is tiny -- 5'2 and 82 lbs at the time -- and she needed between 2400 and 2600 to gain. We had aimed for 2000 and couldn't figure out why she wasn't gaining. Even her nutritionist was surprised.
 

Cat-a-Tonic

Super Moderator
You sometimes just gotta find the humor in this nonsense. I have been scribbling notes of what I want to talk with my GI about on Monday. I now have 2 full handwritten pages of notes and I'll surely have even more than that by Monday afternoon. :p I have a feeling it's going to be a loooong appointment!
 

Maya142

Moderator
Staff member
Good luck on Monday! I'm sure it seems SO far away when you feel awful. These things always get worse on weekends, don't they?!

I don't know if adult GI practices have an on-call doctor, but our pediatric practice has a GI on-call at all times. They could prescribe something like Pred to get you through until you see your GI. I know the fact that you're technically undiagnosed might make it a bit harder, but it's worth trying if there is an on-call GI.

Are you drinking Gatorade or Pedialyte? That might at least prevent dehydration if you're having so many BMs.
 

Cat-a-Tonic

Super Moderator
As for gaining weight, usually when I'm on steroids I balloon up. I've been on Entocort for 4 weeks now and I've lost 9 lbs when I should have gained a couple lbs. I'm hoping that if I can switch to pred, that'll help me regain or at least stabilize. Normally in a flare I lose weight, on steroids I gain, and in remission I maintain. The steroids should at least be giving me a larger-than-usual appetite, but nope, I have had basically zero appetite during this flare and have had to force myself to eat. So there won't be a big jump from forcing myself to eat to forcing myself to drink EEN.

That's a good thought about the powdered versions of Ensure. Do you just mix those with water? I actually can't do the vanilla version of Ensure - I tried it a few times and it gave me bad diarrhea. But when I tried the chocolate version, it was fine. Must have been some weird ingredient in the vanilla that didn't agree with me. But any flavor other than vanilla should be okay.

I'm guessing my GI will know, but what's the typical timeframe for doing EEN? Or does it differ from person to person?
 

Cat-a-Tonic

Super Moderator
Yes, I've been drinking gatorade. But my taste buds are more sensitive or something in this flare, maybe it's just the constant nausea (zofran takes the edge off but it's always somewhat there). Gatorade tastes SO sugary sweet, it's like it coats my tongue with sugar and it just seems gross to me right now. So I'll have a sip of gatorade and then not drink it again for like an hour, that's how it's been going.

Yes, my GI's clinic has an on-call doctor. But, my GI is really particular about being in charge of my care - years ago when I was first sick, I asked a different doctor to do a prednisone trial. My GI was super mad when he found out! He said he'd never give an undiagnosed person such a harsh medication. But, he did change his tune when I told him that I had a really good reaction to pred. He started taking things more seriously, because of course pred only works on inflammation. I think my GI was starting to go down the "you just have IBS" route, but when pred worked so well for me then he started treating me as though I likely have IBD. So my GI knows that pred works well for me and I think I can use that to convince him to prescribe me some.

And yeah, the weekend is daunting. It seems like such a long wait even though it's only 2 days. Monday is going to feel long as well, because my appointment isn't until 3:40 PM. I will be counting the minutes that day until I can go to my appointment.
 

Maya142

Moderator
Staff member
Typically it's 6-8 weeks, but it can be longer. My daughter found it too hard not to eat at all, even when she was at her worst. She has, however, been on about 85% EN when she was very underweight.

Some people with IBD (including my daughter) aren't able to tolerate polymeric forumlas like Ensure. Peptamen and other semi-elemental formulas are more broken down and so are easier to tolerate. There are definitely other semi-elemental formulas but I only know the pediatric ones (Pediasure Peptide for example).

I think powdered Ensure would be mixed with water but we've never actually tried it. We were told that the regular Ensure with carrageenan was ok. There have actually been trials with it and it does induce remission in patients with IBD, despite the carrageenan. I worried about it too though.

Ensure definitely tasted the best to my daughter, but it caused diarrhea for her.

Blender bottles are good for powdered formula. Also, keep the formula cold (tastes better). Drinking with a straw and drinking out of a cup with a covered lid might help.

There are MANY EEN threads on the parent's forum and lots of tips. Bribery is used a lot with kids to get them to do it ;) so you might want to treat yourself if you try it!
 

Cat-a-Tonic

Super Moderator
I have 2 blender bottles - when I'm in remission, I make myself protein shakes using a Ninja blender, then I use a blender bottle to keep the mixture nicely mixed. So I definitely have the equipment needed to mix up the powders.

I'm thinking I might just try some Ensure Clear today as I'm pretty sure that doesn't have carrageenan, and I seem to recall that while it doesn't taste wonderful, it isn't awful either. I'm thinking I might just go get some and do a trial day of liquids only to see how I do. My guts wouldn't let me go to sleep until after midnight, and then they woke me up at 5 AM with urgency, so I'm just not keen on eating food right now. Eating, sleeping, and staying hydrated - those seem to be the basic necessities of life, yet I'm failing at all 3, ugh. At least I still got breathing going for me.

I'm very good at treating myself! Too good, ha ha. :p When I first got sick, I decided to buy myself a new nail polish after every doctor appointment, diagnostic test, or pharmacy run. It was inexpensive and pretty and made me happy, and I could paint my nails even when I wasn't feeling well. But, of course, I was going to the doctor and pharmacy a lot, so I quickly ended up with wayyyyy too much nail polish, ha ha. Now I'm more diverse at treating myself so that I don't end up being a hoarder of one particular item. I've added a bunch of items to my amazon wish list lately, so I'm sure I'll be treating myself to some of those things.
 
Hi all, brief history on me - I'm not fully diagnosed yet but it's almost certainly some type of IBD. Entocort has always worked well on my flare-ups in the past, usually it kicks in fairly quickly and I feel noticeably better.

However, not this time. I started flaring 4 weeks ago. Called my GI and he put me back on Entocort (9 mg). I've been back on the Entocort for nearly 4 weeks. But, it doesn't seem to have kicked in. I've been feeling worse, especially this week. Still having a lot of nausea, fatigue, urgent watery diarrhea anywhere from 10 - 20 times per day.

Anybody else had this happen? Did the Entocort eventually kick in? Or did the "flare" turn out to be something else like an infection? I did stool samples on Tuesday and will be calling my GI's nurse as soon as the office opens up to see if those results are back yet. I just don't know what to do, though. This really feels like a flare, and I'm super frustrated that I'm getting worse instead of better. I see my GI on Monday so hopefully then he'll have some answers for me, but in the meantime I thought I'd ask you guys. Anybody else experience an Entocort fail when it worked great in the past?

Could you try Uceris instead? First, Entocort did work for me but now Uceris is way more effective, even little to no side effects (water retention etc. which I had with Entocort, but that's very individual). I normally see effects after 1-3 days.

Uceris is Budesonide as well, coated differently, released in the TI and absorbed throughout the whole colon, so maybe more stable (?), at least it covers a larger area. All these drugs are released ph-dependent, so if there is a small change in ph-value, the place where the drug is released may be different from where you want it to be released. Maybe worth trying, so maybe you want to ask your consultant about Uceris.

Fingers crossed you don't need to go back on Prednisone or Prednisolone.
 

my little penguin

Moderator
Staff member
DS was hospitalized with an iv drip and nothing by mouth
Then it would stop
Still had D on ensure clear /Popsicles
At home he had pedialyte and neocate Jr while it slowed down
This kept us from needing more iv
Pedialyte makes powder singles for 16 oz of water
We used these vs the already made much more exspensive liter bottles
 

Cat-a-Tonic

Super Moderator
Thanks, I'll look for that next time I'm at the store! I actually just got back from the store, I bought some Ensure Clear. :p It's similar to Gatorade, I'd say. It's very sugary sweet and leaves a sugary taste on my tongue that I feel the need to wash out with water. And if I drink too much at once I get a bit nauseous, so it's taken me over an hour and I think I'm only about halfway done with the bottle. Ugh.

I also did buy some Ensure powder as it didn't have carrageenan. It does have a small (less than 0.5%, according to the label) amount of whey, so I'm hoping that's not going to be problematic for me. I do have trouble with whey, but hopefully the amount is negligible and won't bother me. I think I'll try that for dinner.

So far so good on my liquid diet trial today. I don't feel better but I also don't feel any worse than normal. Still a bit nauseated because I just had a sip of the Ensure clear, ha ha.

Less than 52 hours to go until my GI appointment! Not that I'm counting the minutes or anything...
 

Cat-a-Tonic

Super Moderator
I didn't even notice that! Maybe that's why I got a bit nauseous after each sip. I don't feel too bad now, though. If anything, I'm feeling a slight improvement on liquids only. When I got sick on whey, I think whey was the first ingredient (and maybe only ingredient? A friend of mine gave me some of her whey protein to try and I didn't get to look at the ingredient list). So maybe I can have whey in small amounts. Every day I learn something new about this illness and how it affects me!
 
Ugh, i was on Entocort and Humira and they werent doing anything. I just started on 40mg of Prednisone today :(. Hope it works. I am in constant pain, i took half a percocet earlier that took the edge off.
 

Cat-a-Tonic

Super Moderator
Good luck on the pred, aypues! I hope you get some relief really soon!

As for me, I'm on day 2 of my liquid/Ensure diet. I had a fair bit of cramping and very watery d for about the first hour of the morning. I've also lost another 2 lbs - guess I didn't drink enough calories yesterday. I'm going to make an effort to drink more calories today - I've got a double Ensure (it said to mix 1/2 cup of the powder into 8 oz of water, so I doubled that in my big blender bottle). I've just started drinking it, very slowly, because I don't want to give myself more cramps/d. I also ordered a couple more blender bottles and another thing of powdered Ensure online.

Less than 32 hours until I see my GI!! Starting to get nervous. I now have 3 pages of notes and questions for him.
 

Cat-a-Tonic

Super Moderator
I should also add, I actually slept last night! Lately, my guts haven't been letting me sleep. At bedtime, I tend to get really nauseous and crampy and refluxy, and I end up staying awake until midnight or later waiting for various meds to kick in. Then my guts wake me up at like 5 AM with more cramps and urgency. But last night, I went to bed around 10:30 and I got up at 7. It was wonderful to actually be able to sleep! As I mentioned in my previous post, I did have some d and cramping, but it didn't wake me up. It didn't start until after I was already awake. That's great, being able to sleep was so nice!
 

my little penguin

Moderator
Staff member
Doubling the ensure isn't recommended since the concentration to powder to water really needs to be very accurate - that alone can cause lots of Gi issues
The powder needs to be dissolved in liquid at the right ratio for your body to process it properly .
Typically Ds needed to drink 66 oz of neocate Jr which is 2000 calories.
30 calories /oz
They do make 1.5 ensure which is more calories per oz but it's harder on your system than regular ensure of 1.0 .

Some are very sensitive to the concentrations and need a kitchen gram scale to measure it .

Good luck with your Gi appt
 

Cat-a-Tonic

Super Moderator
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.
 

my little penguin

Moderator
Staff member
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 ??
 

Cat-a-Tonic

Super Moderator
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.
 

Cat-a-Tonic

Super Moderator
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.
 

my little penguin

Moderator
Staff member
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
 

Maya142

Moderator
Staff member
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!!
 

Cat-a-Tonic

Super Moderator
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.
 

Cat-a-Tonic

Super Moderator
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.
 
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
 

Cat-a-Tonic

Super Moderator
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.
 

Cat-a-Tonic

Super Moderator
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!
 

Cat-a-Tonic

Super Moderator
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.
 

DustyKat

Super Moderator
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.
 

Cat-a-Tonic

Super Moderator
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.
 
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
 

Maya142

Moderator
Staff member
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.
 
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
 

Cat-a-Tonic

Super Moderator
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.
 

Maya142

Moderator
Staff member
Good luck Cat! I'm glad they admitted you. Hope they can figure out what the problem is.
 
Location
San Diego
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.
 

Cat-a-Tonic

Super Moderator
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!
 

Maya142

Moderator
Staff member
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.
 

Cat-a-Tonic

Super Moderator
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.
 

Cat-a-Tonic

Super Moderator
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.
 

Cat-a-Tonic

Super Moderator
Hah, maybe I could do one of the "undrinkable" elementals. :p 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
 

my little penguin

Moderator
Staff member
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
 

Cat-a-Tonic

Super Moderator
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.
 

Cat-a-Tonic

Super Moderator
I had some jello and chicken broth a little while ago. I am still having d, very small amounts and maybe that's left over from the prep (they said I wasn't optimally cleaned out, which is odd, because I was going clear, so maybe it's just that little bit that was left in there). It was a bit bloody too but they said that might happen because they took biopsies. I'm not cramping as badly, probably because I've done just water up until I had the jello and broth. And also probably because the IV steroids do seem to be helping.

Oh yeah, I'm still going to push for both pred and EEN. My GI already knows that's what I want but he wants to wait for the biopsy results.
 

my little penguin

Moderator
Staff member
The good thing is you had the scope inpatient
Those biopsy results get read before out patient scopes
So turn around is 1-3 days versus a week or more
 

Cat-a-Tonic

Super Moderator
Yeah, the nurse just told me that they're going to see tomorrow morning if there are any results yet. I kind of doubt it as my scope wasn't until mid-afternoon (it was supposed to be at 1 PM, but 1 PM was when they brought me down - the actual scope didn't start until 2:26 PM, I remember that's what the clock said as they were wheeling me into the room. It took close to an hour, too, I think. I'm pretty sure the clock said 3:26 as I was opening my eyes. So the lab wouldn't have gotten my samples till mid/late afternoon. I doubt I'll get the results tomorrow.
 

Maya142

Moderator
Staff member
I guess they're not going to do any small bowel imaging? I hope they at least send you home with some formula. Can you ask to see a nutritionist/dietician before you're discharged? That's who arranged the formula for us. They also may have some samples they can give you.
 

Cat-a-Tonic

Super Moderator
It sounded more like they were going to give me a referral for a dietician. I can ask tomorrow to find out for sure. I will ask for samples too.
 

Maya142

Moderator
Staff member
Good luck! Very frustrating when they can't figure out what's causing the problem. Hope the biopsies give you more info :ghug:.

Incidentally, my daughter had the same issue with prep this time -- running clear, we were sure she was well cleaned out like she had been for past scopes. Nope! Her GI said it had to do with dysmotility -- she has Gastroparesis and her entire gut is just sloooow.
 

Cat-a-Tonic

Super Moderator
I'm thinking that I should be tested for gastroparesis at some point once things calm down. I don't believe my GI ever tested me for it and it might explain some of my issues (reflux - I do have a hiatal hernia but it's small & sliding, so my GI says it shouldn't be causing the severity of reflux that I have).

Yeah, I was sure I was well cleaned out, too. I haven't even had solid food since Friday! And that was only a banana and an english muffin (which made me have a lot of watery d). Then on the weekend I had a few Ensures which also sent me running to the bathroom with watery d. Yesterday and today up until the scope it was only water (I did have a bit of chicken broth and jello after the scope). I drank 6 cups of Golytely yesterday evening to make sure I was clear - 6 seemed like more than enough. So yeah, gastroparesis is something I think I should have looked at when my guts are less crazy.
 

Cat-a-Tonic

Super Moderator
I'm still waiting for those test results (specifically waiting on biopsy results, prometheus blood test, and fecal fat to check my pancreatic function). In the meantime while I'm waiting, they did send up a nutritionist/dietician (I never remember which is the correct term). She was helpful although she also admitted that I'm a tricky case as I essentially already did everything right, with eating a bland diet when things were going downhill and avoiding certain things like dairy. She is bringing me samples of a few elemental/semi-elemental drinks - I think she said I should try the vivonex (not sure if I spelled that right) first. She said it smells fairly bitter so it's okay if I can't drink it. I'm going to try one at a time to see how each one affects me. Oh, and it turns out I can't try Peptamen - it contains coconut oil, and I cannot digest coconut, it just makes me ill for like 4 days. So that one is already out but I'll be trying a few more.

It sounds like I'm still here for a couple more days. They were originally talking about sending me home today but now I get to stay a bit longer. I think they're hoping to get the test results, particularly the biopsies, back before the end of the week, and then we can figure out what to do from there. I did talk to a doctor earlier today and said I'd like to do an MRE if the biopsies are normal/negative, and he agreed that sounds like a good idea. He wasn't my attending doc though so I don't think he has the final say. So we'll see. For now just waiting on my enteral drinks and still waiting on test results.
 
I'm still waiting for those test results (specifically waiting on biopsy results, prometheus blood test, and fecal fat to check my pancreatic function). In the meantime while I'm waiting, they did send up a nutritionist/dietician (I never remember which is the correct term). She was helpful although she also admitted that I'm a tricky case as I essentially already did everything right, with eating a bland diet when things were going downhill and avoiding certain things like dairy. She is bringing me samples of a few elemental/semi-elemental drinks - I think she said I should try the vivonex (not sure if I spelled that right) first. She said it smells fairly bitter so it's okay if I can't drink it. I'm going to try one at a time to see how each one affects me. Oh, and it turns out I can't try Peptamen - it contains coconut oil, and I cannot digest coconut, it just makes me ill for like 4 days. So that one is already out but I'll be trying a few more.

It sounds like I'm still here for a couple more days. They were originally talking about sending me home today but now I get to stay a bit longer. I think they're hoping to get the test results, particularly the biopsies, back before the end of the week, and then we can figure out what to do from there. I did talk to a doctor earlier today and said I'd like to do an MRE if the biopsies are normal/negative, and he agreed that sounds like a good idea. He wasn't my attending doc though so I don't think he has the final say. So we'll see. For now just waiting on my enteral drinks and still waiting on test results.
Have they discussed checking your gallbladder function, too, while they check your pancreas? I know, from experience, that gallbladder troubles can really wreak havoc on your digestive system - so much so that my GI doctor wanted to completely rule it out before testing for anything else.
 
Have they discussed checking your gallbladder function, too, while they check your pancreas? I know, from experience, that gallbladder troubles can really wreak havoc on your digestive system - so much so that my GI doctor wanted to completely rule it out before testing for anything else.
MissLeopard, I have been having issues with my stomach and my labs came back fine. My sister said I should ask them about my gall bladder.
 

Cat-a-Tonic

Super Moderator
Is it gallbladder that can cause really pale stools? If so, I had that checked a few years ago. I had really pale stools that ultimately ended up being caused by gastritis, had an ultrasound of my gallbladder and liver and both were fine.

I tried my first enteral drink tonight - I had Vivonex RTF. I did drink the whole container and I could see myself going on it exclusively for a bit. The smell of it was, it's hard to describe but it reminded me of a horse barn. :p Like the smell of horses and woodchips? My husband was here when I drank it and he said it was like cheese that had gone slightly bad (he both smelled and had a sip of it). I drank it and it wasn't too hard. It wasn't tasty, but it wasn't undrinkable either. I could go on horsebarn cheese drink for a bit to let my gut heal. So far so good on that side of things, too. I drank it a little over an hour ago and so far my belly still feels okay. Baby steps, I'm working my way towards EEN!

Also, it's weird. I didn't mind the Golytely at all and I didn't mind the Vivonex either. Can't tell if my taste buds have just gone weird or if it's the total lack of appetite I've had in this flare or what. I'm slightly concerned that I might be really grossed out by EEN once I start to heal, but I'll cross that bridge when I come to it.
 

Maya142

Moderator
Staff member
Glad it's going well. My kiddo thought Neocate smelled like feet and could barely drink it.

I think most parents whose kids did EEN say you get accustomed to the taste and the first few days are the hardest.
 

Cat-a-Tonic

Super Moderator
I'm thinking it's going to be random days that sneak up on me that will be the hardest on EEN. Like, if someone brings cake or pizza to work, that's going to be rough. Sorry, I can't have delicious cake, I need to drink this beverage which smells like a horse barn. :p

Thinking I'm going to transition to low-FODMAP once I'm done with EEN. The dietician/nutritionist said it could help so I looked over the info. When I was in Japan, I felt really well the whole time and the food sat really well with me. So before this flare, I'd been trying to do more of a Japanese-style diet. Well, when I looked at foods that are allowed on low FODMAP, it's a lot of things I was eating in Japan - fish, rice, seaweed, buckwheat/soba noodles, eggs. I think I can do that.

Just got my biopsy results back, of course they are normal as usual. The doctor is waiting for my fecal fat results, and if that's normal as well (which I think it will be) then we'll be doing an MRE. So, more waiting.
 
Is it gallbladder that can cause really pale stools? If so, I had that checked a few years ago. I had really pale stools that ultimately ended up being caused by gastritis, had an ultrasound of my gallbladder and liver and both were fine.
The gallbladder can cause pale stools, but so can Celiac disease. It can also be caused by disorders of the pancreas. If it isn't your gallbladder or liver, you might want to check out the other problems if you haven't already.
 

my little penguin

Moderator
Staff member
Big hugs
Glad things were "normal" but also realize how frustrating that can be
Glad you could get the formula down
Think ice cold and cups with kids and long straws
Less smell that way
As far as food while on een
Some like smell plates
Where you smell what's for dinner
Others just avoid food situations which can get tricky fast
Beware of football baseball etc stadiums where the food smells are very intense
I know it sent Ds into tears more than once
I forgot about the smells

Hope the Mre goes well
 

Cat-a-Tonic

Super Moderator
Well, crap. I was awoken with urgency and had a bad, explosive episode of d early this morning. Worst bowel movement I've had since I've been in here. I presume it's because of the enteral drink. So I guess that particular brand/drink might not work for me. That's frustrating.
 

my little penguin

Moderator
Staff member
The amino acid drink wouldn't cause the D
There are no whole protiens for your body to react too
The intestines don't have to do any work
However if fat is your issue then that might be the bigger problem
It took a week of two for Ds to slow down /stop D once on amino acid formula
It is constipating but only if your drinking more than 50% of your daily calories
So one wouldn't make much difference
It also will take more than a day for your system to calm down and stop reacting to anything put into it .
 

Cat-a-Tonic

Super Moderator
MLP, thank you. That's what the nurse said as well, and we discussed with the nutritionist again just now, so I'm going to keep trying the Vivonex. I don't think fat is my issue but we'll find out for sure soon - I did a 24 hour fecal collection to check for fecal fat and we're just waiting on those results before doing the MRE. So yeah, I am less frustrated now, going to keep trying the Vivonex and was told I can have Lomotil with it to slow down my system so that hopefully I can absorb a few more of the calories & nutrients from it.

Hopefully this is the light at the end of the tunnel! If I can get my MRE, get my body to accept the Vivonex, and get switched from Entocort to pred, hopefully I can get out of both the hospital and out of this flare (I'm still on the IV streroids for as long as I'm in the hospital, so I just need someone to write me a script for pred and for Vivonex basically). I think/hope the end is in sight!
 

Maya142

Moderator
Staff member
I agree, it will take some time for things to calm down.

So glad they're doing the MRE. Hope it gives you some answers!
 

Cat-a-Tonic

Super Moderator
Ugh. Almost 3 PM and still no results back on the fecal fat test, and they weren't going to order the MRE until the fecal fat results come back. Sooo, I've basically just been sitting and waiting all day. Getting frustrated. I did have a carton of Vivonex just now, it was hard to drink but it's sitting fine now that it's in my stomach. I just hate sitting here in limbo for now, though. I just want to have the MRE and get out of here!
 

Maya142

Moderator
Staff member
Hang in there. Being in the hospital is tough -- lots of sitting around and waiting. My kiddo watched a LOT of TV ;).

Hope you get the results soon. Glad the Vivonex is going better -- I'm sure it tastes awful, but if it gets you feeling better, it's worth it!
 

Cat-a-Tonic

Super Moderator
Yeah, lots of TV, lots of facebook, lots of playing games on my kindle. Wish I could take a nap but I'm not really a napper. I could go sit outside, there's a little courtyard that the nurse showed me, but it's a bit far from the bathrooms for my liking.

I was really hoping not to be stuck here all weekend, but it looks like I might be. My dad and brother said they'll come visit me on Saturday, so I guess there's that.

Oh, and yeah, the Vivonex is odd. It's difficult to drink because of the taste, and initially there's a slight bit of nausea, but then it settles and sits really well (like, suspiciously well) in my stomach. When I've got the Vivonex in my stomach and I'm done drinking it, I actually feel fairly well. It's a slightly frightening feeling, though, because when I feel well then I eat things I shouldn't. I'm going to REALLY have to watch myself on EEN. This 2nd carton of Vivonex clearly hasn't hit my colon yet, I'll be interested to see if this one makes as explosive of an exit as the first carton did.
 

Cat-a-Tonic

Super Moderator
So this thread was originally about what to do when Entocort isn't working, and my original thought was that prednisone might be better. I'd been on IV steroids since I've been in the hospital, but this morning we decided to stop the IV steroids and try me on oral pred - see how I respond, make sure I can digest those tablets and aren't just jettisoning them, etc. WOOOOW. Ha ha. Yep, it's definitely working! I've got pred-head. It made me dizzy and then it made my heart race and then a bit of nausea and now I just feel super jittery and wired like I've had a lot of coffee (and I don't drink coffee). The IV steroids did not make me feel like this. Well, I've definitely had a response to the pred! Now let's just hope it helps my guts too.
 

my little penguin

Moderator
Staff member
No mre ???
Glad the vionex is helping some
Ds and DH both say it sits like a steak dinner
You feel really full at first
Good luck on going home
Wish you had answers
 

Cat-a-Tonic

Super Moderator
Sorry, I forgot to mention that part. The GI team talked with me yesterday evening and they're okay with me doing the MRE on an outpatient basis in the very near future, so that's the plan for that. They also want me to do a breath test for SIBO which I can also do as an outpatient.

Yeah, the Vivonex is easier to drink today (maybe it's the pred giving me something like an actual appetite) and it does sit really well in the belly. Everything just feels completely calm, like a flat lake with no wind and no waves. (Usually my gut is a riled up lake with lots of waves!) It's actually wonderful to drink it, because I know it'll sit well.
 

Cat-a-Tonic

Super Moderator
I also forgot to mention it in this thread but it sounds like I'll be going home today! They're of course working with my GI so that he can get me the MRE and the SIBO breath test and monitor me and work with me on the Vivonex and the pred taper and all that stuff.
 
So glad to hear that things are looking up. You do want to get the MRE as fast as possible because it is possible that the EN and prednisone could put you back into remission within ten days.
 

Cat-a-Tonic

Super Moderator
Oh wow, 10 days? I'm guessing it's going to take longer than that - I mean, I've been on IV steroids for like 5 days now and I didn't feel anywhere near remission. But yeah, I know to do it ASAP. The doctors here are in touch with my GI about all this stuff (I go through the University of Wisconsin system of hospitals & clinics here, so they're all in the same system and can easily communicate). And I emailed my GI this morning as well to let him know what's happening to make sure we're all on the same page. If it does go too long and/or if I start improving too much then I'm sure we'll re-assess.
 

Cat-a-Tonic

Super Moderator
Oh, oh, I should also give this good update - during the worst of this flare, I was having up to 20 bowel movements per day. They've asked me to track my bathroom trips. Up until a few days ago it was still 10 to 20 per day. Yesterday it was 7. And today, so far, only 2! :D
 
Oh, oh, I should also give this good update - during the worst of this flare, I was having up to 20 bowel movements per day. They've asked me to track my bathroom trips. Up until a few days ago it was still 10 to 20 per day. Yesterday it was 7. And today, so far, only 2! :D
Yeah
 

Cat-a-Tonic

Super Moderator
Okay, well, now I've had 4 bathroom trips today and the more recent 2 were pretty rough - it was the "peeing out your butt" type of diarrhea, ugh. The good news is, they gave me some Imodium and that seemed to stop it. My gut has been giving me some crampy pain ever since. I know I still have a long road to go until I'm out of this flare.
 

Cat-a-Tonic

Super Moderator
Bah. More bad news. My insurance company won't cover the Vivonex unless it's for tube-feeding. When it's used orally, they consider it a "grocery" item and won't pay for it. Without insurance, the lady at the supplier said it's over $600 for a 2-week supply. Ummmm, no. I think I can get it on amazon for significantly cheaper than that, so I guess that's what I'm going to try. The nutritionist/dietician lady here did give me one case to take home, so I'll work through that case and figure out what my options are. Just more frustration. Oh well. Flaring is never easy and getting out of a flare is never easy.
 
Bah. More bad news. My insurance company won't cover the Vivonex unless it's for tube-feeding. When it's used orally, they consider it a "grocery" item and won't pay for it. Without insurance, the lady at the supplier said it's over $600 for a 2-week supply. Ummmm, no. I think I can get it on amazon for significantly cheaper than that, so I guess that's what I'm going to try. The nutritionist/dietician lady here did give me one case to take home, so I'll work through that case and figure out what my options are. Just more frustration. Oh well. Flaring is never easy and getting out of a flare is never easy.
Standing with you
 

my little penguin

Moderator
Staff member
You need to appeal it
Through your Dme ( durable medical equipment clause )
There should be a Dme company for your insurance
It's infusion therapy supplies ( not formula )
Oley foundation has donations so they can help
Also vionex direct from the manufacturer gets a discount and is much cheaper than from a Dme

Otherwise avoid Amazon since if formula isn't stored properly you will get very ill
 

Maya142

Moderator
Staff member
Our insurance would not cover Peptamen Jr till we started the tube feeds. We bought it directly from the manufacturer. It was expensive but according to our GI, they often do not cover it unless it's given through a tube.

But it's worth trying to appeal. Oley Foundation does have supply exchanges. And feedingtubeawareness.com also lists a couple of supply exchanges on their site.
 

Cat-a-Tonic

Super Moderator
Ah, crap. I had ordered from amazon (cancelled that order just now). I'm exhausted and wouldn't know the first step of contesting that right now. I have 24 in my fridge - I think I'm going to just try that, a few each day, and then slowly add in very bland low-FODMAP foods (I'm thinking there's a lot of rice in my near future). Hopefully with the pred and some vivonex I can do this. It's just been a really long week, I'm exhausted and I'm done right now. I'm home and I see that the laundry hasn't been done, nothing's been done, I'm just a little overwhelmed right now. Ugh.

The pred taper is just a quick burst, too, but at least if I need more of that I can call and beg my GI to put me on a longer taper (I'm doing 40 mg for 5 days, then 30 mg for 5 days, 20 for 5 days, 10 for 5 days, then done, so only 20 days total and today was day 1.)
 

Maya142

Moderator
Staff member
Cat, just as a head's up, your MRE probably won't show inflammation if you have been on IV steroids and will be on 40mg Pred. It could, but it may not, especially if the inflammation was mild because IV steroids are pretty strong.

I hope you're able to get some Vivonex soon. Glad they gave you a case.
 

Cat-a-Tonic

Super Moderator
Well, I just spent a very frustrating hour on the phone with my prescription drug coverage provider and got nowhere. Ended up hanging up in tears. For some reason, even though I have a prescription slip in hand for Vivonex, they need it faxed to them by a doctor - I cannot fax it to them myself (???). That's what they told me. That makes absolutely no sense to me. I have the damn prescription so just fill it! Ugh.

I think I'm going to drink my morning Vivonex, wait for the pred jitters to calm down a bit, and then just go to my local pharmacy and see if they can do anything. Maybe they can special order it in or something. If not, I'm going to call my GI first thing on Monday morning, and I'll see if he can fax the prescription over to the stupid bleeping prescription drug coverage people.

Why the F is this so hard? Like it's not hard enough having a chronic illness, but you also have to fight with everybody and put in way more effort than should be necessary just to get the things you need to keep you alive. It's so unfair and it's draining and it just sucks.
 
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