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08-23-2016, 07:16 PM   #61
my little penguin
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Are you at least tolerating food now without D ?
If not I would push for at least een to try and get your nutrition up
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08-23-2016, 07:19 PM   #62
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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.
08-23-2016, 07:22 PM   #63
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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
08-23-2016, 07:46 PM   #64
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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.
08-23-2016, 07:48 PM   #65
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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.
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08-23-2016, 08:08 PM   #66
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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.
08-23-2016, 08:14 PM   #67
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Good luck! Very frustrating when they can't figure out what's causing the problem. Hope the biopsies give you more info .

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.
08-23-2016, 08:57 PM   #68
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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.
08-24-2016, 02:20 PM   #69
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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.
08-24-2016, 04:06 PM   #70
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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.
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08-24-2016, 04:13 PM   #71
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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.

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08-24-2016, 06:22 PM   #72
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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. 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.
08-24-2016, 06:34 PM   #73
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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.
08-24-2016, 07:31 PM   #74
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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.

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.
08-24-2016, 07:55 PM   #75
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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.
08-24-2016, 09:45 PM   #76
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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
08-25-2016, 06:15 AM   #77
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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.
08-25-2016, 08:39 AM   #78
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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 .
08-25-2016, 10:31 AM   #79
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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!
08-25-2016, 02:26 PM   #80
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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!
08-25-2016, 02:53 PM   #81
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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!
08-25-2016, 02:58 PM   #82
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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!
08-25-2016, 04:02 PM   #83
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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.
08-26-2016, 10:03 AM   #84
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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.
08-26-2016, 10:21 AM   #85
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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
08-26-2016, 10:36 AM   #86
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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.
08-26-2016, 10:38 AM   #87
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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.
08-26-2016, 11:06 AM   #88
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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.
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08-26-2016, 11:15 AM   #89
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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.
08-26-2016, 11:16 AM   #90
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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!
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