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Heard from Doc today

Hi I’ve not been on here in years (password issue) but something pulled me to it now. I am so sorry that O has gone through so much and hope this turns in better direction soon.
 

Maya142

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Staff member
Cedars Sinai Medical Center also has a good GI dept. - in the top 3 for adults, I think. And that's in LA, so while it is a trip, it's not a long trip.

Cleveland Clinic is #2 I believe.

In theory, I definitely agree you need a second opinion, but practically speaking, it can't be until she is well and stable enough to travel...and right now, to me it seems that she is not quite stable enough to travel, since you are depending on IV meds.
 
OK Committee! Here are the goings on today...subject to change thousand times of course;)

O has gained almost another pound! Thank-you TPN!

They are switching her to oral steroids. They switched her from prednisone to prednisolone. They don't want to assume the oral steroids were not working and are testing a theory that maybe O does not convert prednisone to prednisolone well and maybe that is why she continued to flare even on prednisone. They are thinking that because she does so well on IV steroids but tanks once moved to oral. I don't 100% buy that theory because she has done fine on prednisone in the past. I think it is more likely intestinal inflammation interfering with absorption but I will play nicely.

They are discontinuing the triple antibiotic therapy and considering it a fail.

Periactin is dc'd.

They are decreasing her TPN a little bit. They will let her do 6 hours less for now (adult guideline...pediatric is no more than a 4 hour decrease at a time).

All these changes are being made inpatient so we can watch and see how she does and not risk sending her home and tanking and having another admit.

New discussion is that she might go home with TPN but we will assess that after the weekend. YEP! AFTER the weekend which means I need to do laundry :sneaky:
 
Tpn at home I consider that a win
LOL! Baby steps. Today TPN. Tomorrow EEN. O's GI is in clinic on Fridays. Hoping he is working tomorrow and hoping he takes a few minutes to stop by. Will work him over on the other stuff.


Oh and forgot to mention...he also said, "Maybe the entyvio is kicking in and the improvement is really just that and has nothing to do with TPN, Antibiotics or steroids".....Your welcome! I will be appearing nightly! Don't forget to tip your server!
 

Maya142

Moderator
Staff member
Oh and forgot to mention...he also said, "Maybe the entyvio is kicking in and the improvement is really just that and has nothing to do with TPN, Antibiotics or steroids".....Your welcome! I will be appearing nightly! Don't forget to tip your server!

Like Reply
HAH I can see you call him a clown ;)!!
 
Happy Fri YAY!

O has gained more weight! She is now up 6 1/2 pounds.

CRP has gone down a lot more. There was some confusion about her levels before. They were reporting in a different measurement than her level from last Thursday (infusion). So in actuality when I reported they went down 70%, they actually more than doubled between Thursday and Monday. BUT the good news is they are down to around the levels they were at last Thursday. Her GI feels the CRP is unchanged in terms of general trends and wants to see them go down another 2/3's. He is also suspect of the weight gain and wonders how much of that is simply the fluids.

O had a GREAT day yesterday. Color back in her face, more energy, no nausea, ate like a horse. We are thinking that is attributable to the dc of antibiotics.

However, last night she hit a snag. Abdo pain, waking up for a BM and the appearance of blood and liquid BM.

Her GI is not too concerned about the blood. Says that could be the new lining pushing off the old diseased lining and we should expect some blood if not even a little increase...so we are to watch and wait.

They are cutting her TPN in half tonight (so only 8 hours) and then tomorrow night will dc TPN and see how she does and hopefully discharge her Monday without any supplemental nutritional support....doesn't mean we can't supplement on our own though;)
 
Plan hasn't changed much except they are now hoping to discharge her Monday and will send her home with the PICC line and are seriously considering night time feeds. No I haven't asked about EEN. There are so many moving parts for now I just have to play nicely and wait to get the heck out of here and then when in clinic with her GI we can discuss EEN.

Her levels came back for Entyvio. She is at 11 and her GI says that she needs to be >20. She is at maximum dose allowed by insurance at 300mg every 4 weeks. They are going to appeal to insurance and ask for 500mg every 4 weeks. Hoping that because of ongoing inflammation maybe she is metabolizing the drug faster and just needs more for a bit and then can step down. Fingers crossed insurance approves.
 
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O slid more last night. Bad abdominal pain and nausea. Refused dinner.

BM's are back to bloody liquid.

She has lost weight.

There is really nothing more they can do for her here. The plan is still to discharge her Monday but leave her on TPN. They said maybe they can squeak out a few hours for the middle of the day where she won't have to be hooked up. We have to wait to see about that.

They really don't want to put her back on IV steroids so they are increasing her prednisolone to 40mg which they say is the oral equivalent of the IV dose. Not sure exactly how much comfort that gives me given she is likely inflamed and won't absorb the whole amount but o.k. we will give it a try.

Zofran for nausea and they never dc'd periactin for appetite so she is still taking it. I will ask her GI if we can stop it once we are home because the team told him it was for nausea so pretty sure he will say no need for duplicate meds.
 
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my little penguin

Moderator
Staff member
Here’s a thought
Liquid
Liquid is more easily absorbed than pills
So what about liquid pred (prednisolone )
They give it to little kids
Might be worth asking
Hugs 🤗
 

my little penguin

Moderator
Staff member
Oral
By far the most common route. The passage of drug from the gut into the blood is influenced by biologic and physicochemical factors (discussed in detail below), and by the dosage form. For most drugs, two- to five-fold differences in the rate or extent of gastrointestinal absorption can occur, depending on the dosage form. These two characteristics, rate and completeness of absorption, comprise bioavailability. Generally, the bioavailability of oral drugs follows the order: solution > suspension > capsule > tablet > coated tablet.

From


So they can’t argue with Columbia university
Can they
 
One thing they could still try while she's inpatient is an NG-tube. You might as well take advantage of her being there already for the next few days! It really seems like her body can't handle food right now; every time she goes back to food she regresses immediately. I can't figure out why all her doctors are OK with TPN combined with unrestricted eating (and are even giving her medicine to try to make her eat more), but won't even consider EEN. TPN is so much more drastic and risky than EEN. EEN is the only treatment with no risk factors, so why not at least try it?
 

Maya142

Moderator
Staff member
Liquid meds are a good idea - we actually switched most of M's meds to liquid after she was diagnosed with Gastroparesis. We did this even before she had a tube since her GI thought she would absorb them better. We now know from trial and error that liquid meds make a HUGE difference for M. For example, M's pain med - same med, same dose, just in the pill form did NOT work for her. Once we got the liquid form, she felt a whole lot better.

Liquid pred tastes nasty...bitter according to my daughter. But at least it works! She used to have it with chocolate syrup.

As for the NG tube, it does make sense to me but not sure O would agree to it. EEN would definitely be better than eating for her gut...Their reasoning doesn't quite make sense to me. I know they said EEN would increase the number of BMs she's having, but surely eating would too! I would understand the TPN if she was on complete bowel rest and wasn't allowed to eat at all. But since they're letting her eat, I wonder why food over formula? Formula is a lot easier on the gut.

That said, O has been through a LOT in the last month so I can understand if she is reluctant to deal with one more medical thing...
 
You guys rock with all your suggestions and worry.

She is already on liquid prednisolone and omeprazole. Thanks though.

Her abdomen pain is getting worse and worse. There is basically not any time of day when she is not hurting. She is not eating food.,,voluntarily. It makes her sick and hurts.

I practically lost it today on the resident. They came in at 11 and did their thing. I had a terrible headache so laid back down and fell asleep. O also fell asleep. The resident came back at about 2 and was REALLY disappointed we were sleeping. Gave O a HUGE lecture about getting up and out of her room and how laying around all day was making her feel like a sick person and making her worse. I went off. The only time the kid isn't in pain or nauseous is when she is sleeping! Yes! This hospital is gorgeous with all their fancy patios and gardens and such but there are only so many times a 19 year old can go and sit on a patio. Plus it is hot outside and then she sweats like crazy. The teen lounge is geared to video games and such and is closed on the weekend. AND SHE HAS MONO! I told him to back off! Then he was talking about TPN and eating and I lost it again. I said, "I don't understand your love affair with TPN". He mumbled some nonsense about NG tube and her stomach pain and vomitting etc. I told him I would prefer EEN because of the TPN/PICCline risks but also because it could heal the mucosa! He said they are considering a scope for O because they fear her stomach and TI have gotten worse. I asked if they do a scope if they could place the tube. O was a little freaked out by it and he said, "look! She doesn't want. it."...ugh.

I will discuss it with her GI on Monday. It is exhausting bouncing between the in patient team and her GI and now to complicate matters we have a new attending!

P.S. not sure how I feel about scopes. What's the point? There isn't anything more you could do for the kid....unless we do the colectomy and then switch treatment to Stelara for the small bowel and stomach.

Sorry for the rant.
 
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Ohh crohnsinct! I am so sorry you are having to go through all this hospital ordeal. It's enough trying to figure out a best course of action, but exhausting having to argue with a team of doctors/residents who are not all on the same page, and probably have limited understanding of how O his feeling and, it seems, about the disease itself! It seems like all attending doctors should be going though her GI doc for any and all orders, barring emergencies, but I guess that's not how the system works. Mostly, I am sorry O is feeling so poorly . I also agree that complete bowel rest, at least until you are able to talk to he GI, would have no down side and might at least make things more comfortable for her. I guess the longer term plan of EEN will be something O will need to feel more comfortable with.....what choices these kids have to make. Regarding the scope, perhaps it may be more useful to do it after a given treatment or course of action, if still needed, to see if a colectomy could be avoided? I now always try, when presented with these suggestion, ask myself "what will I do with the results", but in O's case, they are already doing as much as possible (or should be)as far as treatment, and I don't think anything will change with the new information, unless they are willing to not treat anymore and go strait to surgery. The idea seems to me, is that they are still trying to see if they can avoid the surgery.....so I would imagine it would be better to treat aggressively and then see if a scope is needed to further assess. I'm sure you've heard all of this before......Hope she is better today....sending warm thoughts.
 
I now always try, when presented with these suggestion, ask myself "what will I do with the results", but in O's case, they are already doing as much as possible (or should be)as far as treatment, and I don't think anything will change with the new information,
Thanks awmom! I honestly don't know what I would do without the committee! You guys understand in a way that no one else can and are all so giving of your time and support!

THIS is exactly what I said. If you scope and find small bowel disease how will you change treatment? If it won't change the course then why do it? The only reason I see to do it is in the case of surgery because she needs healthy small bowel to pull through for the ostomy. So if we are not at the point of surgery and there are no treatment changes to make then why do it.

She thinks she is going home tomorrow so if they say she has to stay to do scopes she will freak out on them.
 

my little penguin

Moderator
Staff member
I would prepare O
Odds are good she isn’t going home soon
Oral pred isn’t absorbing
She is losing weight
Bleeding
Not able to eat and in pain
So not stable at all
And that is on tpn plus Entyvio plus oral pred

Scopes are to decide if surgery is an option
Prior her small bowel was ok not the best but mildly inflamed
Odds are that is not the case now and they need to know

That’s why they are scoping
Similar to periactin
They are not telling the whole story

Prepare o for staying longer
 
MLP! You are clairvoyant!

Going home tomorrow is on hold. Could still happen but they want to see if they can figure out this lower abdomen pain. Giving her an antacid type thing to drink to treat possible gastritis. If that helps then we could go home. If not......

Also adding suppositories back in to see if that helps with bleeding.
 
I was away at a friend's cottage and was hoping to read some positive news posts upon my return.... Soooooooo sorry this is still happening - so many good suggestions given here. I don't have anything to add in terms of treatment but I am adding my support and positive thoughts. I am hoping someone is personally give you some support while you are being a rock for your daughter. Either way, we are here for you.
 
They wrote the script for Maalox AND Carafate...the nurse says it says as needed and that she doesn't have to take both. The nurse said in her experience most patients have better luck with he Maalox.

You don't suppose they meant for her to take both do you? On top of a PPI? That sounds a little like over kill to me.
 
Well she ate a bagel and had pain bad enough to stop playing a game downstairs wither sisters and crawl back into bed. She took Maalox. Resident checked in before going home. I wasn't here but she told him it didn't help and he said, "well if that didn't help it is likely not gastritis and you will probably need a scope...maybe no prep because we only need to see top part...maybe since you are getting it done do both...maybe we could just put a camera down your nose...maybe we still let you go home tomorrow and you can come back for scopes....you can lay around at home in pain just as easily as here...

Have you guys ever heard of the camera down the nose thing? For Crohn's? I don't think so!

And I would thank you kindly to stop thinking out loud in front of my daughter!

Luckily she inherited some of my genes and said, "but X (fellow) said discharge tomorrow is tentative" and he admitted that pecking order goes, intern, resident, fellow, attending and that his opinion doesn't count for much.

Guess we will see in the morning. In my opinion I say just keep her and do it now. PLUS - I want them to give her an ng tube and prep her with that...can that be done? I really don't think that feeling the way she does she will be able to prep by drinking. I get it all still goes to the same spot and that she still might vomit and all but at least we avoid all the pressure to drink. Just let it drip down there and let the chips fall where they may.

But I guess if I want the really good head of endoscopy, we may have to leave and come back.
 
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my little penguin

Moderator
Staff member
No drip
Bolus large amounts through the tube at once
They still need to get it put in while awake if she is using it for prep
Vs placing it while under during scopes
Ent does the nose scope
While awake -not sure if they go all the way to duodenum though ???
If she goes home
Your prepping at home

Ds has learned to ignore residents
We saw one last week prior to attending coming in
The doc had lots of ideas and thoughts
Ds looked at him like he was crazy
At the end resident knew Ds wasn’t buying what he was selling
Resident then said “well it’s not up to me ...
Big boss gets to decide what is what ..”

I would point blank ask who is doing scopes for inpatients
If that changes and if it’s different than outpatient
They won’t be too offended 🤣
 
LOL! It is sad how beaten down these residents are that they are even admitting to patients that their opinions don't really drive anything. Funny, last admit Olivia said, "did you see that" and I said, "what?" she said, "the fellow was talking to us but I didn't see the attending lips move once". Her reference being that he was obviously given a script of what to say and didn't deviate one bit. LOL!
 

Maya142

Moderator
Staff member
M takes both Maalox and Carafate. They work well for her gastritis with a PPI. I would say if you’re going to do only one, make sure it is carafate.
Maalox has magnesium in it and can cause diarrhea if you have a lot. M doesn’t usually have diarrhea with it though and but now she takes it only once a day. They are often used together for bad gastritis.
As for prep, yes it can be done with an NG tube. You can ask for low volume prep (not Miralax and Gatorade) since she won’t be tasting it. We have done both the drip method, having the prep drip all day and the bolus method. The bolus method worked better for us BUT M has really poor motility and O is already having diarrhea so dripping it may be feasible. The bolus method did make M nauseous but we were able to control how much we gave her at a time and that helped(for example 4 oz every 15 min, instead of 8 oz every minute). That helps but either way we have to start earlier than normal (partially because it’s slower and partially because M’s motility is poor).
I am wondering if you would get new info from the lower scope? She had one so recently. And making her prep will cause weight loss. The upper scope you can do without prep - just no eating after midnight.
 

Maya142

Moderator
Staff member
Oh and if she is doing either prep through an NG tube or orally, she should take zofran!! They can give IV Zofran if she needs it. We always use the oral disintegrating kind but IV works better I think.
 
Ahh good point on the zofran! We are new to this.

O took the concoction and it didn't help the pain. So they are less suspect of gastritis.

O feels strongly that if they go in she wants them to look at colon. She wants to know if the steroids are working. It may not be something they want to do given the looks of things the last time and the concern over perforation. But they did say if her transverse colon is really bad it could also be causing this pain.

It is 4 am here and so far she hasn't woken up for a BM. That is one of the boxes they check for discharge. Also pain went away last night. I am thinking if she has gained weight and if I pass my TPN lesson she will probably go home and they will let her GI decide when she sees him on 7/12 how to proceed.
 

Maya142

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Staff member
O feels strongly that if they go in she wants them to look at colon. She wants to know if the steroids are working. It may not be something they want to do given the looks of things the last time and the concern over perforation. But they did say if her transverse colon is really bad it could also be causing this pain.
As sad as it is, it's great to hear she cares and has an opinion now! I feel like just a few months, whenever the doctor asked her anything she'd say was fine and if he asked if she wanted to change things, she'd say she didn't know. So while I wish she didn't have to deal with all this and that it had never happened, but she has grown up so much and is becoming a great advocate for herself!

So no improvement at all with Carafate? I will say that it doesn't work overnight or immediately for M. She has to take it regularly for a few days at least before seeing a difference.

It could certainly be referred pain from her colon...But I'd be more comfortable if they did an upper endoscopy too so we know how her stomach and duodenum look.

Any luck on the Entyvio appeal?
 

Maya142

Moderator
Staff member
No drip
Bolus large amounts through the tube at once
They still need to get it put in while awake if she is using it for prep
Vs placing it while under during scopes
Wanted to add that placing an NG tube is uncomfortable but there is no way it's worse than a PICC line and a lot of the other stuff that she has dealt with. Just make sure it is a 6Fr (6 French is the smallest size) and that she drinks while it's being inserted - it slides right down. She might be uncomfortable at first but it shouldn't be terrible. M was terrified of inserting herself but found it surprisingly easy and actually more comfortable than when the nurse did it the first night she used it.

It's a very thin tube and she is a real trooper - I think it will honestly be a lot easier than drinking the prep.
 
I don't think we are staying. I think her GI has had enough of this nonsense and wants her out and back under his control. I think she will be discharged today and if he deems scopes are needed will schedule them with the endoscopist guy who he says is really great and the guy he hand picked for O back in the beginning of May.

It is just 10 a.m. here in CA so no word on appeal yet. I would be surprised if they even filed it yet.

O gained some good weight. Up to almost 117 again (there may be a fudge factor in that they weighed her with her tubes and clamps and fluids etc but it is a gain nonetheless).

She was woken once at 5 a.m. by what she says was passing gas and some stool coming out. Got up and went to the bathroom and had a liquid and blood BM followed by some mush. Told me no pain.

Resident came in and she admitted pain. She said no night time waking for BM and said just that gas with some liquid stool and he said, "Oh! So night time stooling, just no waking"...shame he is done today...we are just starting to like him.

She just went a second time today and all blood.

They ran CBC and CRP today along with the regular renal panel etc to check on TPN. CBC and CRP are usually only run at admit to check on therapy at some point and ten again to see if the patients dischargeable.

So IMHO looks like we will be getting out of here today.
 
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I have been away from the forum and am just catching up. I am so sorry that she's been so sick and had so much pain. I just want to send a lot of hugs and my hope that the doctors can get her illness and symptoms under control really soon.
 
Yeah, I am not feeling the C. Diff vibes but I will play nicely. The room is quarantined now. As if I wasn't climbing the walls already.
 

Tesscorm

Moderator
Staff member
I have nothing to add that the committee hasn't fully covered! ;)

But, just want to say again how sorry I am that you and O aren't much further ahead... if anything, it seems more question and problems keeping hitting you! Lots and lots of hugs.. I really hope she can get home soon and back to her own GI!
 

Maya142

Moderator
Staff member
It should come back fast inpatient. I think it took us a day.

Glad to hear the committee was correct (well, not really glad because I don't want her to have C.Diff!!!). Doxycycline is known to cause C.Diff...I kind of wish they had kept her on Vancomycin.
 

Maya142

Moderator
Staff member
Yeah, I am not feeling the C. Diff vibes but I will play nicely. The room is quarantined now. As if I wasn't climbing the walls already.
My kiddo was quarantined for 8 days due to C.Diff! Drove us totally insane. After a while when her tests came back negative, they relaxed quarantine enough to let her walk around in the halls but she still wasn't allowed in the teen lounge or playrooms!

Needless to say, we were thrilled to go home! Hope O will be allowed to go home tomorrow.
 
Well the thing is that C. diff would be an easy answer and fix and would potentially mean that her Crohn's really is under control. I guess we would have to treat the c. diff and see if everything else (symptoms and labs) calms down.

Why on earth did they keep her for 8 days? I was thinking that after she gets a C. Diff dx we would get the meds and be on our way. M must have had to stay for other reasons also.
 

Maya142

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Staff member
Why on earth did they keep her for 8 days? I was thinking that after she gets a C. Diff dx we would get the meds and be on our way. M must have had to stay for other reasons also.
Oh this was during her recovery from her major jaw surgery...one night she had bad diarrhea and an accident, and then continued to have diarrhea, and because of her past history of C.Diff, they had to check. But once they checked, they still didn't relax the rules completely for reasons I don't really understand.
 
Oh phew! You scared me!

They said something here about a repeat test 24 hours later if the first one came back negative because of a delay in positive results. But that wouldn't explain 8 days!

The suspense is absolutely going to kill me!
 
C DIFF TEST IS NEGATIVE.

Darn.

Not sure what happens now. Discharge and come back for imaging or scopes? Go back on IV steroids? Increase dose of oral steroids? Stay inpatient and scope/image?

Been to bathroom 5 times today.

Really doesn't feel well and in so much pain she got off the phone with her best friend who she hasn't spoken to in months.

She is going to try the Carafate now just in case that will work better than Maalox and see if maybe this is gastritis.
3711
 
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Maya142

Moderator
Staff member
Oh poor O. Is she on complete gut rest right now? I wonder if that would hurt less than eating? She could drink a couple shakes in the day if she's starving - it's easier on her belly than food.
 
She is on self imposed gut rest. No interest in food. Just water. Not even hungry. Guess TPN is doing its thing. At rounds they actually asked the attending if he wanted calorie sheets put up. I inserted myself and said, "no point...she isn't eating and if she does it s like 300 calories". in other words, don't waste the paper or my time.

I get it. They are trying to calculate her TPN for when we go home. Just tired of ridiculous questions and theories etc.

Wow I sound cranky...I need a nap....or wine!
 

Maya142

Moderator
Staff member
Nap and wine by the sound of it🍷!! Poor O. I hope they will figure out a plan. If she's eating that little, she probably needs enough TPN to count as complete nutrition. That's how we did it with formula when M could not eat. We gave her 2000- 2400 calories of formula but let her eat too, since she was eating 400 calories at most and her GI didn't think that was significant.

I really hope Carafate is an easy fix. We always need to give it a few days. In the mean time, I'd choose very bland food in case it is gastritis. For example, a lot of cheese always makes M's gastritis worse. So we stick to very plain food when she has gastritis.
 
I think when O is out of the hospital, you should patent your new game of Committee vs Doctors - object of the game-- who can come up with the best way of fixing O. Wine glasses represent the committee - golf clubs represent doctors. The Commmittee would win most of the time, of course. Big Big Hug.
 

Maya142

Moderator
Staff member
I vote we drink a glass of wine every time the doctors are wrong/dumb/annoying 🍷 🍷🍷🍷.

Fingers and toes crossed that the Carafate helps. They told you that it has to be taken about an hour before/after meals or before/after meds, right? I'm sure they have but since the attending is a joker, figured I'd check. We have a hard time fitting it in because of M's crazy medication schedule, so we try to get it in twice a day but often it's only once.

But whenever M's gastritis is bad (such as now), we make sure to find a way to give it twice a day and we add Maalox/Rolaids as needed.

Tell O to hang in there!! She'll be home soon hopefully.
 
Haha NOPE! They didn't tell us the timing thing. Just said she could take it up to 4 times a day.

She took it about a half hour after eating and it seemed to help.

Low grade pain returned in middle of night but she didn't take anything for it.
 

Maya142

Moderator
Staff member
It has to be spaced from meds because it could interfere with absorption of those meds. With food, less of an issue, but it can't coat the stomach well if there is food in there.
 

Maya142

Moderator
Staff member
Honestly, I'm kind of shocked they didn't tell you that. For example, if you were to give O Carafate and Prednisone at the same time, she probably wouldn't absorb much Pred at all. And that would be BAD.
 
O has gained more weight. Up to 117.7!

She went to the bathroom 8 times yesterday. So far 5 times today and it is 11 a.m.. Urgency seems to be picking up as is blood and frequency.

Docs rounded. They brought in calorie sheets. Never a good sign. They want to get calorie counts so they can order the proper level of TPN. I had a feeling that meant we are not going home so quickly offered o fill out a sheet for yesterday to speed this thing a long.

O asked does this mean I am not going home and the doc said the issue is TPN. The hospital can not take her on as a client because they are maxed out and don't have the equipment or resources to support her at home. So they are looking for a private agency to take her on which means that now her doc has to manage the situation. It is proving difficult to find someone but they are working on it. They say to prepare for another couple of days.

He made some reference to eating and calorie counts and again told Olivia the sooner she can eat most of her calories the sooner she could get off TPN.

I took the opportunity to ask ONCE AGAIN about EEN. I said, if you can't get TPN how about we try EEN. They caved! So we are getting every manufacturer and flavor delivered to the floor and O can feast on formulas all day. My secret goal is to get her to drink enough that they say, "oh look! TPN is not required" .

The problem is her insides are NOT healed. As long as they are not healed 300mg of Entyvio every 4 weeks is not ever going to kick in. They are keeping her on 40 mg of prednisolone to hopefully hold her disease until the point where Entyvio can kick in. Steroids don't heal and neither does TPN. EEN can heal. He disagreed with EEN healing colons.

I basically nagged them enough that they had to give in. I said, "I am not asking you to disconnect TPN but what does it matter to you if she eats or drinks her calories?" and he couldn't fight that.
 

Maya142

Moderator
Staff member
Way to go CIC!! SO glad you got her some formula. EEN can heal - didn't she use EEN after diagnosis - when Remicade hadn't yet kicked in? And it worked back then, despite the fact that the disease was in her colon. Plus it can't hurt, so there is no harm in trying it! And hopefully it will be easier on her gut and give her enough nutrients to heal.

What formula are they letting her try? Peptamen?

In terms of TPN, couldn't you use any DME supplier that your insurance covers? We initially used homecare from our local children's hospital for tube feeding but after an insurance change, we have had to use Coram. I'm pretty sure they can provide TPN supplies just as they provide EN supplies (feeding tubes, pump, bags for formula, the formula and so on).

Any luck with getting a higher dose of Entyvio?
 
So far the only thing they had on the floor was Pediasure. They are sending up a bunch others. For now she has only agreed to drinking it. So technically I won on two fronts...A - with the docs and B - with O!😂

Yes, we can use a DME supplier. I guess they are looking for one who can take her on as a patient. The case worker at the hospital is helping the docs office.

No word on Entyvio. I asked the attending and he said he knows her GI is working really hard with insurance and "other channels" to get her more drug. He said she is on everybody's mind and they are all working hard to get her out of here and better.
 

my little penguin

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Staff member
The fellow can go to the Gi clinic and bring back samples of other semi elemental or elemental stuff
How can the Gi floor not even have unflavored elecare or Neocate something isn’t right
The pharmacy carries one or the other depending on contracts for inpatient tube kids
Plus always has at least one semi elemental
Either peptide or peptamen jr
Something doesn’t smell right
Have the fellow or resident run over to the Gi clinic and grab samples
We made them do this for ds
They only had elecare jr vanilla or unflavored Neocate jr
In elemental
Which they said he needed at the time
 

my little penguin

Moderator
Staff member
Oh and the floor may only have pediasure
But the hospital pharmacy has more stuff
Keep pushing
Since semi elemental and elemental will be easier for her to absorb so your not circling back quickly since they won’t do tpn
Which is garbage
They are a hospital
Where is the care
 
Great to hear about the EEN. When E was sickest, her body couldn't handle Pediasure or Ensure--she had pain and nausea after trying to drink them. She was OK with Peptamen, though, so I agree with MLP about trying some semi-elemental or elemental formulas.
 

my little penguin

Moderator
Staff member
Have them bring a cup full of crushed ice to pour it over
And a straw
Plus have her pinch her nose
This hides the after taste
Drink as much as possible in one sip to avoid the after taste
As well as cold as possible
Not frozen
You can get Hershey’s simply syrup to add to semi elemental or elemental
Ds said it helps a lot
 
I hope the EEN (or EEN plus TPN) helps, glad she's finally on that. If the formula is intolerable to her and she can't just rely on TPN, maybe she could still be convinced about an NG tube--could be better than drinking.
 
O.K. I just found out what the problem is with home TPN. It isn't so much the equipment or the lipids. Those are easy. It is the TPN. TPN has to be mixed individually for each patient based on the exact amounts of each electrolyte that they need and those changes daily or every few days based on labs and such. So it is pretty labor intensive and time sensitive. The new thinking is that they may be able to send her home on lipids and fluids mixed with a little bit of sugar (I think it was sugar). That at least would get her home and maintaining weight. Then if she could eat and/or drink EN hopefully she would be able to keep up all the micronutrients that she needs.

We do have a training time tomorrow at 10:30 so that is encouraging that maybe they are close to an answer on home health care.

No clue on Entyvio appeal or obtaining extra Entyvio through other channels. I didn't think we would get that answer this fast any way but would be nice.

The afternoon has ben quiet health wise. No abdominal pain, quiet on the BM front. O has already ned three different formulas. I may have gotten her to agree to try but getting her to actually do it is going to be an entirely different battle. Would help if we had an enthusiastic doc.
 

Maya142

Moderator
Staff member
Did they ever mention the Oley Foundation to you? It's like the adult equivalent of Feeding Tube Awareness (which was started by two moms) but it includes info on IV nutrition. They have a lot of info about it and even a supplies exchange (though that isn't for the TPN itself, just the supplies and tube feeding supplies and I think formula). Here is their TPN resources page:

Feeding Tube Awareness also has a supplies exchange, if you were to need formula or something.

What formulas did she try? Hope she can tolerate something semi-elemental - my daughter absolutely hated Peptamen at first but got used to it.
 
Thanks! The supplies aren't the problem. It is the TPN. The mixing and delivering and such. So far everyone they have called can not take on an additional patient. I really don't mind moving just to fluids with a little sugar added and the lipids. The lipids are the fats and I figure whatever I could get her to drink and if not drink eat will handle the electrolyte part. At least I think we should start trying that and then keep looking for a TPN supplier. At least that would get us out of here. Whether or not it will keep us out of here is a whole other story.
 
oops sorry. As far as formula goes they are only bringing her polymeric formulas because she mentioned just drinking and no tube. It will take me a bit longer to convince her and the docs for elemental or semi elemental. But pretty sure tube or lose your colon would be a good motivator. Just not there yet. Also not 100% sure the docs would back me up on that argument as it may nt be scientifically sound.
 

my little penguin

Moderator
Staff member
When your colon is as inflamed as hers and her small intestine
The more broken down the formula is the less healthy intestine is needed to absorb the nutrients
Elemental is used in short gut syndrome for this reason
Polymeric is better than eating solids but all of the chains are intact
Semi elemental the chains are broken into smaller chains so the intestine/body has to do less work
Elemental is broken down to amino acids (what the body does in its own woth whole proteins ) amino acids are absorbed easily abd only need a few inches of healthy tissue plus have the benefit of very little waste since it’s all amino acid and no intact proteins

Can’t believe they are giving you so much grief on a standard of care 🤬
 

Maya142

Moderator
Staff member
Severe inflammation may make digesting a polymeric formula hard. My daughter had bad diarrhea with Boost, Ensure and Pediasure. Her GI really pushed a semi-elemental formula because those are partially broken down and so easier to digest. Our GI said MOST kids with IBD are able to tolerate semi-elemental formulas but some do require elemental formulas.

My daughter had diarrhea on Peptamen jr. too - we stayed with it for a whole month to see if her body would adjust. It didn't.
So that's when we tried Elecare and Neocate Splash, since she was losing weight, not gaining any! The elemental formulas really do taste pretty awful though - my daughter says they taste like stinky feet! For her, they were just too difficult to drink, even when we tried all the regular tricks (cold formula, straw, mixed in crushed ice and chocolate syrup). So she really needed the tube and now she even says she wishes she had agreed to one earlier!
 

my little penguin

Moderator
Staff member
^^^^^yeah that
I will stress Ds started drinking semi elemental daily at age 7 before he knew he had a choice
He stayed on it till he had uncontrollable diarrhea for weeks at age 12
They told him inpatient either drink elemental or tube since he needed nutrition at home he could tolerate (tpn was briefly mentioned )
Ds cried and agrees it tasted like rotten frozen French fries
But after two weeks of drinking it he got used to the taste
Now drinks 30-48 oz daily. Plus food

That said the first two weeks he really wAnted a tube could not stand it
 
N also hated drinking the peptament at first. He started with the peptamen Jr but it was bothering his stomach, which we later attributed to the Sucralose since he cannot tolerate any of the artificial sweeteners. So he moved to the adult unflavored one and did much better on that and
got to where he didn't mind the taste at all....it saved him during his first year in college! Having said that, I do wish he would have accepted getting NG tube, at least for night feedings, as he was never able to drink enough to maintain a good weight.

It's all a process and hopefully O will be able to tolerate the formula in time. It's also good to know there is something to fall back on whenever there is a flair up. In the meantime, I hope O is feeling better, and that you are able to sort the TPN issues.....
 
O seemed to have a good day.

Her GI checked in to let me know what was happening behind the scenes with Entyvio approval etc...basically nothing yet but we are hopeful

I had just reported to him that she had a good day with only 5 BM's and very little blood.

No joke as soon as I hit send she felt sick and ran to the bathroom with a big BM and blood!

He wrote back asking another question and I told him I spoke too soon.

Anyway, the point of all of this is to say that he agrees with the committee on bowel rest and that she needs either EEN or TPN with no food.

Committee 2 Attending 0

Not sure how this is going to go down logistically but I will keep you all posted.
 
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Hey y'all. We are still inpatient. Goal for discharge is Monday. O will be discharged on lipids and fluids (with maybe some electrolytes and sugars added). We couldn't get on the TPN service as they are maxed out. Both Lipids and fluids will be delivered via her PICC line.

She is up 8 pounds.

They are cutting her over from TPN to the hydration/lipid mix tonight and using the weekend to watch her weight and make sure she doesn't slide or gain too much.

Not going gut rest yet. The inpatient team is not on board and with this new plan she won't get enough via IV to keep her weight stable if she stops eating. I knew logistically getting them on board would be an issue.

I am guessing she could theoretically just drink formula when we get out.

BM's look good in terms of frequency and blood today so fingers crossed that continues.

No word on Entyvio increase yet.

Still on 40 mg prednisolone.

O is supposed to fly to visit a friend for her good bye party (she is leaving the country for two years for mission work) but they are not approving the trip because of the PIcc line and the fact that any fever over 100.2 is an automatic admit but also because of her rebounding back into hospital for her Crohn's issues. GI and Picc line docs wants her close to home.
 
OMGOSH! Just heard from the GI! They got one dose at the 600 mg dose approved with the infusion being at the hospital infusion center! More could potentially be approved with added documentation!

This is AMAZING!
 
I know right?!

Does this mean we have to give them a point? Well, it was the pre authorization/appeals guy so I guess I don't mind giving away a point to someone other than the committee.
 
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That is hysterical MLP!

More goodness. Our GI is doing some research on diet and a diet has crossed his desk that is showing very good results when combined with EN. So PEN and this diet. He sent her the list of allowed and not allowed foods and asked her to use it as a guide when eating.

So at least now we have an action plan with regard to food. I will let y'all know how it goes.
 

my little penguin

Moderator
Staff member
Would that be the crohns exclusive diet ????
Used pen and special diet list
 
Not a lot to report here except weight is dropping. Dropped .4kg yesterday even with TPN and another .3 yesterday on just fluids and lipids. Bummer. I figure a fair amount of the up and down is fluid as that bag of TPN is HUGE! Literally the size of a newborn! The bag of fluids for last night is your usual fluids size, so at least half the size of TPN if not more.

What do you think the discussion is going to be at rounds today?
 
I'm wondering how much weight she has gained over what period of time with what nutritional intake?

If she's been gaining fast with not a large number of calories going in, some of this weight gain could be fluid weight, especially if her albumin/total protein are low. Do you happen to know how many calories the TPN had been giving her during her period of weight gain and approximately what her oral calorie intake was during this same time? And does she have a normal albumin and protein?

You are right that some of the variation in weight may be how they weigh her.

I have been thinking of her and can't wait to see some really good news posted here!
 
All excellent questions Xmdmom.

I don't know her calories of TPN.

Her GI isn't banking on the weight gain because he feels it is mostly fluid as well.

Her albumin is low. Went down to 2.7 and hovered there but as of ast Monday was 3.2. Her protein has always been In Range at 6.5. Went up to 6.7 but as of last Monday 6.4.

They pulled labs Thursday but those won't post until tomorrow. Then they will pull labs Monday.

I am concerned about her electrolyte balance being off tpn and only on straight fluids. They will check labs again on Monday but if that is the day we were aiming for discharge. I wish they would check over the weekend so if adjustments are needed they could make them.

Her oral intake ranges from 1000 to one day 2000.

new attending rounded today. He is concerned with number of BM's and blood. He didn't look too enthusiastic about a Monday discharge. I think he is in the gut rest camp which would mean stay here on TPN.

Stay tuned!
 
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