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I know it's tough to be at the hospital for this long, but it is probably better to be safe, especially with what has happened in the past. Big hug and hopefully the abdominal pain is from her menstrual cycle. :unsure:
 
Sending O many hugs!! I hope, for once, that she is wrong.
How many days have you two been hospitalized? I feel like once you hit 30 days, you should get a medal!! It is not easy to be in the hospital that long!!
 
Literally laughing out loud!

You got that right! Do you know how brave I am to go without my wine for 30 days?!

Actually now that I think of it my friends and family probably deserve the certificate for putting up with me without wine!
 
Oh man--30 days is so much time in the hospital. But I'm so glad to hear that the latest attending is taking things seriously and talking with her GI. Hang in there!
 
Literally laughing out loud!

You got that right! Do you know how brave I am to go without my wine for 30 days?!

Actually now that I think of it my friends and family probably deserve the certificate for putting up with me without wine!
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We've done 30 days in 1 year but spread over 4 hospitalizations. I can't imagine doing 30+ days at once :eek:!! You can have a whole case of wine when you are freed ;) 🍷.
 
O has lost 2.8 pounds and her H&H have gone down a little bit more but they are attributing all of that to fluids that she lost urinating a lot yesterday and e fact that they stopped O/N fluids. She is able to drink 2 liters of water a day so they feel it is safe to discontinue the o/n fluids. They will send us home with a few just in case bags of fluids and she will continue o/n lipids with PICC line for about 4 weeks.

Attending feels she is stable (not great but not sliding anymore) and there is nothing they are doing here that we can't do at home. They are not changing anything (unlike other times where they sent us home with sometimes more than one thing changing) so she shouldn't slip and actually might do better with eating at home! He is suggesting she be discharged today! It's my birthday! He is going to run it by her GI and going to use the birthday card!

I feel really, really positive that we are going home today!

Next Thursday is ENtyvio infusion at the higher dose. Next Friday is appointment with her GI. Next Saturday we start to reduce prednisolone down to 20 mg. That will be the next hold your breath moment. But for now I will just enjoy being home with my wine and birthday cake!
 
Wait what
Reduce from 40 mg to 20 mg one week after higher dose Entyvio
So she drops 20 mg in one week 🙀
They don’t do that for remicade or humira
You stay at maintenance of pred until drug can take effect
Which in Entyvio case is 24 weeks from start
Remicade 6 weeks and humira 12 weeks
 
Dropping 2-5 mg a week is a lot
2 mg per week would give her body time to adjust
Less side effects that can attributed to a flare and allow entivyio time to work at the higher dose
 
Yep....I would think down to 30 but I don't have a degree and years of experience. He had said we had to taper VERY slowly last week but now he is being aggressive? I think he is just anxious to know if Entyvio is working AND I think insurance is holding our feet to the fire because they only approved one dose pending what the outcome is of this infusion. I think we won't know unless we really taper the steroids.

I am wondering logistically if we restart the 12 week clock with the next infusion, as if she never had Entyvio or does the past 12 weeks at sub therapeutic dosing count for at least something?
 
Very slowly is NOT 20 mg! Very slowly is 1 mg or 2.5 mg. We've done as slow as 1 mg per month.
I'm worried about her leaving if she is losing weight without TPN - what happened to gut rest? Will she be doing EEN?
 
Yeah I know Maya...I am really concerned about what will happen with that taper...and we will be away so it should be extra fun....

Yeah I know MLP but I think insurance is really guiding more of the decisions here...we may not get the added infusions approved it we don't drop the steroids...confused as to what they want to hear.....look we tapered and symptoms returned she really needs Entyvio or Entyvio doesn't work...or look we tapered and no return of symptoms Entyvio works. While I am grateful beyond measure that they approved such a high dose and to be given at the hospital and only 4 weeks interval...I really wish they weren't micro managing this thing.
 
GOODNESS!

In true O fashion she has started to poop a lot more blood today. Nurse is concerned and calling the team.

They also came in to get an updated height so it sounds like maybe her GI isn't as comforted by the weight as the rest of us.

We are on hold.
 
I haven't said much because, really, what could I add ;) but, I am another voice with the gut rest!! I can't imagine how hard and frustrating it must be to be the lone voice against attendings, residents, fellows, on-calls, GIs, etc.... ugh!!!

What if, while they fiddle with this and that, you just pick up some shakes and you and O simply decide to do EEN alongside whatever else they want to do... lipids, no lipids, steroids, TPN, no TPN, etc.... It's not like they are saying 'no food'??

Gosh, I just can't imagine how frustrating this is for you and O!! Wow, you and O are holding it together way better than I think I could!

I realize I still haven't added much of value here, lol, but am thinking of you guys and hoping you get some firmer answers and a really solid plan soon!!!
 
Thanks guys. It is hard. I sometimes feel like I am screaming in a room full of people and no one can hear me.

I totally agree Tesscorm! But all that changed with the diet request.
We could just ignore the food directive and do the shakes except the shakes have stuff in them that is not on the CDED diet and O and I are really bad liars....or fudgers even.
 
Actually cded diet is designed to allow a list of foods and partial een (aka shakes )
It was designed for folks who don’t /can’t do full een
I can pull that part of the study if you need to for the Gi
It is very clear
Calories from the approved list abd rest from partial en

The CD Exclusion Diet (CDED) is a whole-food diet combined with exclusive enteral nutrition (EEN) designed to reduce dietary exposure to foods that might negatively impact the microbiome, the intestinal barrier and innate immunity.

Researchers conducted a 12-week prospective trial in 78 children with CD, whom they randomly assigned to receive either the CD exclusion diet (n = 40) or EEN alone (n = 38). The primary endpoint of the study was tolerance to the diet, which researchers measured by withdrawals for refusal to continue diet and poor adherence. They also assessed week 6 intention to treat remission defined by PCDAI of 10 or less and the more stringent definition (PCDAI<10), as well as corticosteroid free intention to treat sustained remission week 12
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From

https://www.healio.com/gastroentero...ase-exclusion-diet-well-tolerated-in-children

So shakes are required
 
I would feel the same about fudging. There is too much on the line if it all goes more south (to Antarctica? How far south are you at this point 30 days in???) Who could live with colectomy guilt if a personal medical decision is the last thing tried? CDED is normally a good diet and if you get the chance you could use it to keep food simple. Pureed. Soupy juicey.
Fudging is reserved for homemade mother's day presents.
Can you get your husband to switch with you for a few hours so you can go for a walk? Good for the head space.
Happy Birthday btw! Lol!
 
Oh right! I forgot about that part.

So if we do all her calories from formula it would technically be EEN with lipids and fluids. Hmm.
 
Dietary Therapy With the Crohn's Disease Exclusion Diet is a Successful Strategy for Induction of Remission in Children and Adults Failing Biological Therapy.
Sigall Boneh R, et al. J Crohns Colitis. 2017.
Show full citation
Abstract
Background: Loss of response [LoR] to biologics in Crohn's disease [CD] is a significant clinical problem. Dietary therapy as a treatment strategy in this setting has not been previously reported. We report the use of dietary strategies using enteral nutrition coupled with the Crohn's Disease Exclusion Diet [CDED] for LoR to infliximab or adalimumab as a single-centre experience.
Methods: Patients with LoR to a biologic despite dose escalation or combination therapy were treated with partial enteral nutrition [PEN] by a polymeric formula and the CDED for 12 weeks. Paediatric patients with severe flares received 14 days of exclusive enteral nutrition followed by PEN + CDED as above. All patients were seen at weeks 6 and 12 for follow up. Current and prior treatment, Harvey Bradshaw Index [HBI], C-reactive protein [CRP] and albumin were recorded. Remission was defined as HBI <5 at week 6.
Results: Twenty-one patients, mean age 22.1 ± 8.9 years [11 adults and ten children] met study criteria. Seventeen patients [81%] had used combination therapy, and 10/21 [47.6%] had failed a second biologic. Seven patients had a prior intestinal resection. Dose escalation had failed in 13/21 [62%] patients. Clinical remission by physician's global assessment and HBI after 6 weeks was obtained in 13/21 [61.9%]. Mean HBI decreased from 9.4 ± 4.2 to 2.6 ± 3.8 [p < 0.001], mean CRP decreased from 2.8 ± 3.4 to 0.7 ± 0.5 [p = 0.005] and mean albumin increased from 3.5 ± 0.6 to 3.8 ± 0.5 [p = 0.06].
Conclusion: Dietary treatment combining PEN with the CDED may be a useful salvage regimen for patients failing biological therapy despite dose escalation.
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From

https://www.ncbi.nlm.nih.gov/m/pubmed/28525622/

I know because Ds was on it for more than a few months
 
Yep and if she “cheats” and eats a solid on the list ...
Not as big a deal
Read the diet
It has so many weeks of een then pen plus diet
Etc...
 
I caught one of the Fellows in the hall and asked if while they are conferencing they could please discuss one more time EEN with NG tube placed here and indwelling as O would not put in and take out nor will she drink at this point. Her response was a sobering, "all those studies you read are for mild to moderate. O is very severe. We are working on it and it is going to take time. We will be in as soon as we have more information for you"
 
I think it is still just being used by a few clinics and they haven't really published info for the public. There are a few things online if you google it. I will get you a very, very basic chart that I have with allowed and not allowed foods but it isn't truly the guidelines of the diet as used in clinical practice.
 
I haven't said much because, really, what could I add ;) but, I am another voice with the gut rest!! I can't imagine how hard and frustrating it must be to be the lone voice against attendings, residents, fellows, on-calls, GIs, etc.... ugh!!!
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This is so true - I know how exhausting it is to keep fighting. Doctor after doctor, your kid who is miserable and you never get a good night's sleep or a healthy meal. We're all rooting for you and for O. Really hope they can figure something out for her.

I caught one of the Fellows in the hall and asked if while they are conferencing they could please discuss one more time EEN with NG tube placed here and indwelling as O would not put in and take out nor will she drink at this point. Her response was a sobering, "all those studies you read are for mild to moderate. O is very severe. We are working on it and it is going to take time. We will be in as soon as we have more information for you"
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She really won't consider placing the tube herself? I can have M write to her about it. I feel like EEN is definitely a better option than food...I don't get how it could be worse for her than food. It has to be easier on that gut than food.

But it is worrying to hear that her disease is so severe... I hope they will consider TPN and NO food if they won't consider EEN.
 
@ Guerrero
Here is the full article
https://academic.oup.com/ecco-jcc/article/11/10/1205/3835921

Here is the thread woth all the diet details when Ds was on it
https://crohnsforum.com/threads/new-diet-ibd.71686/

List of dos and donts

They are listed in the appendix
Allowed daily meals : foods may be grilled fried baked boiled or broiled
Unlimited chicken/fish
Fresh unprocessed beef steak ( lean meat such as sirloin ) once a week
White rice
Rice noodles
2 fresh potatoes peeled not frozen and not consumed at same meal
2 eggs
2 tomatoes
2 cucumbers peeled
1 carrot ( shavings )
Fresh spinach ( side portion)
1 apple ( peeled )
2 bananas
1 avacado
Few strawberries
Slice Melon
Allowed condiments for cooking
Olive oil
Canola oil
Salt pepper paprika cinnamon stick
Fresh herbs ( mint leaves oregano coriander Rosemary sage basil thyme)
Fresh onion or garlic or ginger
Fresh carrot shaving for salad rice or soup
True honey
Table sugar (2-3 teaspoons a day for cooking or tea)
Beverages -soda water , water herbal teas
One glass of freshly squeezed Orange juice daily ( not from cartons or bottles)


Not allowed
Dairy products of any kind margarine
Wheat breakfast cereal breads and baked goods of any kind yeast for baking
Gluten free products not listed above soya products potato or corn flour
Processed or smoked meats and fish (sausages luncheon meats salamis fish sticks)
Sauces salad dressing syrups or jams of any kind
Canned products or dried fruits
Packaged snacks (potato chips pretzels popcorn nuts etc)
All soft drinks fruit juices and sweetened beverages alcoholic beverages coffee
Candies chocolates cakes cookies and gum
 
Not a great day....

Abdo pain (not menstrual) is back
Frequency up
Blood up

No word from anyone on the plan. They just sent the resident in to tell us that we were staying. Poor kid...she was so scared she tip toed in. O and I laughed and told her it was safe we pretty much figured we weren't going home.

I did manage to have a semi nice birthday. O and I cuddled in her bed binging on Netflix. Hubby and the other girls brought dinner and cupcakes in. The nurses made me a mocktail (Sprite and cranberry juice).

It's all good.
 
Well O's weight is down another pound and her albumin is also down. However, her BM's are pretty stable at 6-8 a day and that bleeding thing stopped and went back to her usual blood.

At this time they don't want to change anything with her therapy so they are letting us go home. It is bittersweet because they are saying we are not out of the woods and they are half expecting her to slide (because she has done so in the past) but if they aren't changing anything se can slide at home just as easily as here and she has been here for 2 1/2 weeks this time and going a little batty. Plus, we only have a week to infusion and a little more than a week to her GI appointment. So she "should" be able to make it. Took her a week and half last time.

BRB
 
YAY!! I really hope she will not slide. Fingers and toes crossed. It sounds like they will be keeping a close eye on her, which is great!
 
HAHA! Sleeping in my own bed. With O. And her two pumps sitting between us humming in my ear! Occasionally alarming in my ear because although I was an expert primer apparently there could still be air in the line! Great training the first night.

Got my marching orders from the docs. Basically my house is now the hospital and I am the nurse. I am to chart her weight daily, water and food intake. Every morsel and sip. Measure her urine output and chart her poop. In addition to taking care of her Picc line and administering her fluids and lipids nightly. Change bed sheets and towels daily. Figure out recipes on the CDED. Back to the hospital weekly for dressing changes and labs. That actually is comforting. I figure the labs might signal any slips. Back twice next week. Once for infusion and then again for GI appointment and dressing change.

Can you imagine the state of my house? I have been basically gone since May 13th...hubby was left alone with 2 kids and 2 dogs and a full time job that had it's own trauma and a kid in the hospital he tried to visit every free minute. I thought I walked into a crack den last night! o_O

It's good though because cleaning this place up will take my mind off all the what if's ahead of us.

In case you were wondering YES I had my glass of wine. A very small glass. It was all I needed😂

Happy Fourth Of July to all our U.S. friends! Well actually you all have a 4th of July on your calendars so Happy 4th everyone!
 
OMG you crack me up - even with all this, you find humour. I admire that. :p
You do have so much on your plate but always better to be at home in your own comfort and the 4 oz glasses of wine. It's nice that your family gets to be together on the 4th of July Holiday.
Good luck with all your extra responsibilities but remember to give yourself a little time whenever possible. 😁
 
In case you were wondering YES I had my glass of wine. A very small glass. It was all I needed
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Just one glass? We were going to send you a barrel for the holiday!! Guess I'll just keep it here ;) then. Not because I might have drunk half of it or anything like that :whistle:.
 
Can you imagine the state of my house? I have been basically gone since May 13th...hubby was left alone with 2 kids and 2 dogs and a full time job that had it's own trauma and a kid in the hospital he tried to visit every free minute. I thought I walked into a crack den last night!
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There's no place like home, right?! Make the hospital seem like a luxury hotel - O's meds are all taken care of, there's no cleaning to be done and there's room service 😉.

And her two pumps sitting between us humming in my ear! Occasionally alarming in my ear because although I was an expert primer apparently there could still be air in the line!
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Well, I have good and bad news for you about the alarm. The good news is that you will become so used to the pump alarm, that you'll start sleeping right through it (yes, extra sleep!!).

The bad news is that you will then wake up to cranky pets, who don't like the sound of beeping all the night, and an even crankier kiddo who did not get her lipids/fluids/formula overnight and is annoyed about being hooked up all day.
 
I'm so glad you're both home!! (I think! LOL) I think you need Marie Kondo to do an emergency visit for you!! Just to give you time for your well-deserved wine!! ;)

I hope all runs smoothly and you won't have many alarms going off!! Then again, drink enough wine and it won't matter! 🤪
 
Sorry Pangolin...doing what? EEN or PN with CDED....

Either one is because she was inpatient and her care was being directed by the team at the hospital.

At the beginning, I was told that she was so severely malnourished and her bowel was so diseased that there was no way that EEN would have provided the number of calories she needed to get "out of the woods". Having just escaped another hospital admit with sepsis and staring at possible toxic mega colon I was ready to agree to just about anything they wanted.

As she improved, I asked about EEN numerous times and was met with resistance from both the care team and O. She did end up trying various (about 8) formulas and hated all of them. True an NG tube is an option but she is iffy on that as well.

We are home now and trying the CDED with IV nutrition so basically similar to PN. I will let you guys know how it goes.
 
As she improved, I asked about EEN numerous times and was met with resistance from both the care team and O. She did end up trying various (about 8) formulas and hated all of them. True an NG tube is an option but she is iffy on that as well.
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Young adults are tough - they aren't always rational and their brains are still developing and they tend to underestimate risks. But since they are over 18, there's not much you can do about it, except talking to them. Sending big hugs to you and O, CIC. I hope the IV fluids + lipids are enough to keep her weigh up!!
 
crohnsinct said:
Sorry Pangolin...doing what? EEN or PN with CDED....

Either one is because she was inpatient and her care was being directed by the team at the hospital.
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EEN or full bowel rest, ie no ordinary food. Whether her care was directed by the hospital or not, you can independently just give her the shakes to drink instead of food. Their food logs and pushing her to eat should have been opposed and ignored.

That said, your daughter's opposition to it is key, and obviously it's hard to do anything the patient herself opposes. I'd put a lot of effort into convincing her otherwise.

At the beginning, I was told that she was so severely malnourished and her bowel was so diseased that there was no way that EEN would have provided the number of calories she needed to get "out of the woods". Having just escaped another hospital admit with sepsis and staring at possible toxic mega colon I was ready to agree to just about anything they wanted.
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If they were correct about her bowel being so diseased that EEN was not possible, that's where TPN and gut rest comes in. I just don't understand why they allowed--let alone pushed--food on her in that condition. Clearly if her bowel was so diseased EEN was insufficient, then having regular food wouldn't be any better.

I do understand that you were in a tough position, and I've experienced that kind of pressure myself, so I know it's really the hospital making the big error here, and you are not really in a position to actively oppose them.

As she improved, I asked about EEN numerous times and was met with resistance from both the care team and O. She did end up trying various (about 8) formulas and hated all of them. True an NG tube is an option but she is iffy on that as well.
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I'm horrified that the doctors actively resisted. That's borderline malpractice in my opinion. An NG tube is annoying but much better than losing a colon. Totally worth a try.

We are home now and trying the CDED with IV nutrition so basically similar to PN. I will let you guys know how it goes.
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Really hope the CDED works for her. I wouldn't trust its efficacy as much as EEN, but it's probably an improvement over ordinary diets.
 
It is true. I had no choice. She was inpatient and I asked. Numerous times. I guess I could have signed her out A.M.A. and done whatever I wanted at home but I needed her to be there.

True she is 19 and can make her own decisions. I have spoken to her numerous times about the benefits etc. In the end, if she decides against it, it is her choice. She is a very smart girl and would totally understand the benefit of a difficult therapy but when the docs aren't even on board why would she side with her mother?

To be clear, she is not going to lose her colon because she won't do EEN. She has done EEN before WITH maintenance meds and it has helped. That time the meds just needed a little extra help. This time, she was on Remicade, Entyvio, and Tacrolimus and still went septic. Her disease is that severe that two biologics and tacro couldn't stop it. We dropped tacrolimus and added steroids and she had to be admitted again for three and a half weeks. She was put on iv steroids three times. Her disease spread and spread regardless of all these drugs. The radiologist reading her MRE commented about how severe her disease is and how quickly she went from just rectal and sigmoid colon to her entire colon being severely diseased and a stomach full of ulcers. While her GI and I are firm believers in EEN, I honestly don't think it will be able to reign in this monster of a disease.

Add to all of this that EEN is not generally as effective with colonic disease as it is with the small bowel. It also tends to lose efficacy the more you use it. It has happened with my younger daughter who has small bowel disease. The first time it worked like a charm. The second time is kind of helped, the third time it didn't touch her disease. It is just like drugs, it works for some beautifully but others not so much.

Her GI initially wanted gut rest and TPN. Why the inpatient team pushed the food, I have no idea. There were a few days she only got a few hundred calories and it made no difference to her stooling so I am guessing they figured food wasn't going to hurt her. I guess her GI didn't feel strongly enough that gut rest was an integral part of stabilizing her right now so he dropped that fight.

Now that we are home, she could just drink an OTC shake if she wants. I will continue to remind her about them but at this point she is passing blood clots and at an extremely stressful point having had to miss two summer college semesters and facing having to miss her fall semester, being stuck in a place where she has no friends (the family recently moved across country), feeling miserable and facing possible colectomy. So if she pushes back, I won't beat a dead horse or add to her stress. She is going to start seeing the GI clinic's psychologist at the request of her GI. Maybe if the GI feels strongly enough the psychologist can discuss this option with her.

Thanks again for caring about my girl.
 
Wanted to add that the studies on CDED that are coming out of Israel and Canada are very promising. Not only are they able to induce clinical remission but they are finding endoscopic evidence of healing as well. It is being used with PEN. PEN and a regular diet has not been as successful.

It is only being used though to induce remission. Just like EEN it is a 6-8 week therapy and then a transition to a broader diet. It is used in addition to maintenance meds.
 
Going to tag @kiny here
While EEN and other diet therapies are extremely effective in crohns (in the terminal ileum & small intestine )
They are not effective in the version of crohns that affects primarily the large intestine (colon) .
Kiny explainers it very well with the science behind it
Here
Just to add. When research papers, especially older research papers, use the word ''crohn's disease'', they are often referring to the strict definition of crohn's disease as described by Dalziel. Chronic enteritis, inflammation of the ileum in the form of patchy granuloma.

When I say ''crohn's disease'', I too strictly mean ileal disease, with no or negligeable colon involvement. I know far more about the ileum and peyer's patches than I do about the colon.

EN has been shown to help in standard classic crohn's disease, where the disease is restricted to the ileum. It especially helps if there is stenosis present or wall narrowing, which might restrict the normal flow of regular food.

EN doesn't work nearly as well if there is colonic involvement, which makes sense, because stool forms in the colon where water is absorbed, not in the small intestine.
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From
https://www.crohnsforum.com/threads...n-rates-in-inflammatory-bowel-diseases.85089/
There is a lot of confusion about crohns being one big disease but it’s not
Not all crohns responds to the same treatment
Even if as parents we want it to
So we can’t blindly say docs were wrong because they didn’t want een
They are basing their decisions off of years of training and research and the history of this particular patient .

Crohns limited to the TI is vastly different than crohns that has taken over the colon to the point of needing surgery
 
I can tell you from personal experience that EEN is highly effective in at least some cases of Crohn's with both ileal and extensive colonic/perianal involvement. I've seen it work like magic on perianal Crohn's.
 
Een alone or een plus remicade ??
Remicade is extremely effective on perianal disease
And sometimes because the the disease extent is so great when remicade is combined woth een
That reduces the “work load “ of the remicade and suddenly healing can occur

Remicade is very fast acting compared to Entyvio
Remicade only takes 6 weeks to be effective
Vs 24 weeks in entivyio
Add in Entyvio is not very effective for crohns ( Ileal) to begin with )

Een by itself can not heal a severely diseased colon
 
I can tell you with 100% certainty due to the timing and the fact that we did it twice that it was the EEN. The remicade, as far as I can tell, may actually have made it worse.
 
You did een alone twice without remicade (as in the remicade was stopped for over 6 weeks prior to the een )?
Or you did een combined with remicade twice ?
Because the combination of remicade and een
Has been shown to be effective and some when they stop the een but stay on the remicade alone
Go back to flaring ...
Tagging @pdx
I think they had a similar experience
 
I would like to remind everyone to please be respectful of other people's treatment choices. We all want to see O get better but we most definitely do not want to add to the stress she and CIC are already dealing with.

True she is 19 and can make her own decisions. I have spoken to her numerous times about the benefits etc. In the end, if she decides against it, it is her choice. She is a very smart girl and would totally understand the benefit of a difficult therapy but when the docs aren't even on board why would she side with her mother?
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Having been there with an equally stubborn 18 year old, I know there is not much you can. In our case, it took an arrhythmia and a doctor explaining exactly what would happen if she lost more weight (she was 82 lbs at that point) - that she could permanently damage her heart, that her organs would start shutting down - before she agreed to an NJ tube and 85% formula. It was so SO hard to reason with her and I'm SURE the only reason it worked was that the inpatient team, her GI and her psychologist were all on the same page and were ALL telling her that the tube was a better and safer option than TPN for her situation. If I had been the only one telling her, I'm 100% sure she would not have listened.

Plus, bribing her with a kitten helped 😉.

We were told that young adults are not always able to make rational decisions when they are malnourished, stressed, exhausted, scared etc. They don't understand risk the way we do. Their brains are still developing and they tend to be impulsive and tend to have poor judgement.

It helped a lot that M's psychologist, whom she had already been seeing for 2 years and whom she really trusted, was telling her that this was the next step and it was safer for her than TPN. Her Crohn's was not an issue at this time - it was just Gastroparesis.

My point is only that young adults are hard enough to reason with, to begin with. And then you add a child who has been hospitalized so many times in such a short period of time, who has already had to give up her summer to this disease and who very well might not go back to school in the fall AND you add a medical team that's telling her it's ok to eat, that EEN won't help her enough...would any 19 year old would choose EEN in that case???

Plus, she has such severe disease that the GI team said the studies about EEN didn't really apply to her, right? Didn't the attending say that her disease was so severe that he hadn't seen a colon this bad since he worked in a developing country that didn't use biologics? And that was after high dose Remicade, IV steroids, IV antibiotics, Tacro etc.

I do think gut rest - TPN - MIGHT help her, but her GI has to be the one making that decision, with O on board. Otherwise it's just not going to happen.

Sending big hugs to you and O, CIC.
 
I've been very respectful, except about the doctors who are honestly making a huge mistake.

The bottom line is that formula is easier on the gut than ordinary food--and this is true even (especially) with a damaged gut. Whether or not TPN or anything else is also being used, there's always a choice between ordinary food and formula (or nothing, in the case of TPN with gut rest), and the ordinary food is always more likely to cause problems. There is simply no situation with a damaged gut in which ordinary food is going to result in better outcomes.
 
This exactly!
Maya142:My point is only that young adults are hard enough to reason with, to begin with. And then you add a child who has been hospitalized so many times in such a short period of time, who has already had to give up her summer to this disease and who very well might not go back to school in the fall AND you add a medical team that's telling her it's ok to eat, that EEN won't help her enough...would any 19 year old would choose EEN in that case???
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I’ve not been on here for years but I’m glad I checked in to join the sideline support team for CIC and O.

On the teen/young adult treatment issue...

Years ago even if my son didn’t like a procedure he responded well to threats and bribes. Oh have things changed. Last week after good MRE and biopsy reports he announced he might stop his treatment. My head spun around twice and I’m sure the dr wrote in file that mom threatened to stop paying for college. We worked all these years for them to make their own decisions but at times we wish they would defer to us, right?

I appreciate the comment about respecting individual treatment decisions!:). Crohn’s likely isn’t one disease and some BTDT experiences may apply to other patients and some may not!

I’m hoping this is a good day for O.
 
My head spun around twice and I’m sure the dr wrote in file that mom threatened to stop paying for college.
Click to expand...

LOL! Thanks for the laugh Optimistic!

Tell him the committee says he can't stop his treatment! He is the one and only kid on here who is ONLY on diet therapy...he is still only on diet therapy right? SCD right?

He is our n of 1!

If it works why fix it?
 
Years ago even if my son didn’t like a procedure he responded well to threats and bribes. Oh have things changed. Last week after good MRE and biopsy reports he announced he might stop his treatment. My head spun around twice and I’m sure the dr wrote in file that mom threatened to stop paying for college. We worked all these years for them to make their own decisions but at times we wish they would defer to us, right?
Click to expand...

We did this too, with my older daughter. Said if she wasn't responsible enough to take her medications, she would have to come home and go to a local college, so I could make sure she took her medications. We told her medications were non-negotiable and she had to speak with her rheumatologist before making any decisions.

I honestly have no idea if our threat really worked. All I know is her rheumatologist let her decrease the dose of MTX she was on. She promptly flared, within a few weeks. And went back up to hero original dose. After that, we let her make her own decisions - we found that she learns best "the hard way" - by trying and failing. She did the same with MTX several times in college - tried to reduce her dose and flared. It was hard to watch her in that much pain and I worried a LOT about her disease becoming worse. She was lucky that it did not.

The stakes are different though, when the young adult is seriously ill. That's when you want to get involved. But with my younger daughter, literally nothing worked. Threats, reasoning with her, begging her to accept the tube etc. She was in a lot of pain, due to flaring arthritis, and was not sleeping - she would literally lie awake till 5 or 6 am in pain and very uncomfortable from the tube. Her doctor tried to be very stern with her and honestly, it didn't work. She didn't respond well to that - all it did was traumatize her. She only finally listened when her psychologist and a resident took the time to explain to her what would happen if she continued to lose more weight. Years later, she told us she honestly did not understand how serious her weight loss was until that conversation. All the threatening, begging, talking, cajoling didn't work because she simply didn't understand the gravity of the situation.

Every kid is different. And every situation is different. EEN may have worked well for someone's child - it may even have worked well for O in the past. That doesn't mean it will work now. I agree that it is easier on the gut and theoretically, it can't hurt. But if O isn't ready to try it, then adding to her stress by threatening etc. probably will do more harm than good.
 
Quick update:

O's weight is holding steady. She is doing a great job on the CDED diet.

We are getting the hang of the PICC line/pump hookups.

Went for dressing and cap change today. No labs...bummer. Next chance for labs will be at infusion next Thursday.

Her BM's are pretty steady at 5-8.

Only thing that has changed a bit is bleeding. Seems in the morning to have had an uptick. More blood and now passing what looks like little clots. This happens to all middle of the night BM's and first couple of morning ones. Otherwise her usual bleeding.

She looks good so not freaking out just yet. Will wait and see how this thing trends.
 
Yeah Maya and Optimistic!

O is definitely VERY determined and stubborn. But I have to admit it sounds like M takes the title there!

The thing is, O is not making any decisions that are against what her medical team is advising. She is doing everything they have asked her to do. If she were denying meds or skipping treatments etc maybe then some threats/strong discussions might be in order and thank-God they aren't because I do NOT need another dog in this house! But absent her team asking her to go on gut rest or EEN, then it is just mom's suggestion and I am not a doctor, I just play one on the internet!

She has grown up a lot this past year. She used to not report/under report symptoms for fear that we would take her out of school or make her miss something. That has pretty much completely stopped. She is VERY transparent with everything going on. Complete with reporting clavicle pain that she was SURE was because of the way she slept at night but figured she should say something just in case it was the PICC line causing a problem.

Thanks for understanding! It means a lot to me.
 
Hmmm just remembered that the GI said as the new epithelial layer forms the old will slough off so even though healing could be occurring it will take a while for the bleeding to stop and may even increase. Maybe those clot type things are the old epithelial layer?
 
my little penguin said:
Because the combination of remicade and een
Has been shown to be effective and some when they stop the een but stay on the remicade alone
Go back to flaring ...
Tagging @pdx
I think they had a similar experience
Click to expand...

Our case was a little different. E started on remicade only (no steroids or een), and after a few months she was getting sicker so we added een, and that wasn’t enough either, so then we upped her remicade dose and added Mtx and budesonide (and a few days of IV steroids) and she finally started to get better. About 6 months after starting remicade we stopped pen and budesonide and she was ok on just remicade and mtx.

Bottom line is that situations vary, and there’s trial and error involved in finding the right treatment.

Hope you got more sleep last night, CIC, and that O is doing well.
 
O is definitely VERY determined and stubborn. But I have to admit it sounds like M takes the title there!

The thing is, O is not making any decisions that are against what her medical team is advising. She is doing everything they have asked her to do. If she were denying meds or skipping treatments etc maybe then some threats/strong discussions might be in order and thank-God they aren't because I do NOT need another dog in this house! But absent her team asking her to go on gut rest or EEN, then it is just mom's suggestion and I am not a doctor, I just play one on the internet!

She has grown up a lot this past year. She used to not report/under report symptoms for fear that we would take her out of school or make her miss something. That has pretty much completely stopped. She is VERY transparent with everything going on. Complete with reporting clavicle pain that she was SURE was because of the way she slept at night but figured she should say something just in case it was the PICC line causing a problem.
Click to expand...
O has been amazing, considering the situation she is in. She has been so tough. She has taken every poke and procedure with minimal complaints. She's dealt with enemas, suppositories and other uncomfortable treatments. And she's started actually telling the doctors what is going on!! That's huge for a kid who was so stubborn that she'd deal with any amount of diarrhea and bleeding, as long as she was allowed to go to school!

She has grown up a lot, very fast. I wish she didn't have to, but it is what it is, I guess :(. Just bad luck that her disease is so severe and treatment resistant.

Really hope today will be a better day for her.
 
I have read it, three times.

Printed it and showed it to our GI who is also in drug development as well as being a clinician. He has done mega tons of research and actually recently got an award for the most cited paper in IBD.

There are a lot of factors at play with this disease. More than we as parents and patients can fully understand and appreciate. I have decided to be put my energies into being the best mom I can be for all of my children and let her GI drive the gut bus for awhile. He has taken very good care of her thus far. He managed to get an unheard of bump to 600mg of Entyvio approved by our insurance company on the first try. We didn't even need an appeal. He must know something about something.
 
I’m not trying to hijack here. There is all Team O. Just saying that these are adults who need different approaches than “bc I said” or “we can watch a fun movie after you start tube”. I don’t know what the approaches are though! And in my case when drs waiver or think out loud things are more complicated.

But yes, he is still on about 30% EN and SCD. First was EEN and steroids while we waited on Remicade approval; when insurance was slow drs ad libbed based on Israeli work (he did more EN than SCD first year or two). The challenge is every time he has a low FCP or good scope they treat him like he is a cross between a special zoo exhibit and a celebrity so he doesn’t really grasp how bad he was or remember much about ICU. He is off to school 1,000 miles away and may have to learn the hard way like Maya’s daughter did.

I do remember a weird period of early bleeding that drs attributed to healing. Let’s go with that for O. Healthy new lining in progress.
 
I have been following that thread as well and it's making my head spin! We just don't know enough and we have to put our faith in something. Maybe one day, they will have a concrete answer on what causes crohn's, and how it is approached will change, but for now, I too have to put some faith in the professionals and do as much homework as possible.
CIC, let us know what your GI thinks of this if he ends up sharing his opinion with you. In the meantime, I think you are doing one remarkable job as a nurse, as a mother, as a housekeeper, as a friend, etc etc etc. :)
 
The challenge is every time he has a low FCP or good scope they treat him like he is a cross between a special zoo exhibit and a celebrity so he doesn’t really grasp how bad he was or remember much about ICU. He is off to school 1,000 miles away and may have to learn the hard way like Maya’s daughter did.
Click to expand...

That was the issue with my older daughter - she knew she had been really sick but it was like she didn't really believe it would happen again. We argued, threatened, tried to reason with her and so on. None of that really worked for us, though we thought it did at the time.

My younger one is a different story - she was very stubborn about the NJ tube, but besides that, since she has been so, so sick, she follows instructions carefully and actually reads a lot of medical research. She has been much sicker than my older daughter though - missed 2 full years of college due to her arthritis - flares, surgeries (will have bilateral joint replacements this summer at 22 :cry:), the pain program etc. So compliance isn't a big issue with her - her big issue is pushing herself too hard!

Optimistc - really hope your son sticks to his diet and shakes. For what it's worth, my older daughter had a friend in college who did the SCD. She and her family worked with the school and they prepared her SCD safe meals every day! She didn't have a kitchen her freshman year, but did after that. And that was her only treatment - just the SCD, no meds or formula.

Every kid is different. CIC, really hoping the bleeding is due to healing🤞!!
 
The challenge is every time he has a low FCP or good scope they treat him like he is a cross between a special zoo exhibit and a celebrity so he doesn’t really grasp how bad he was or remember much about ICU. He is off to school 1,000 miles away and may have to learn the hard way like Maya’s daughter did.
Click to expand...

You are still cracking me up Optimistic!

College can be ROUGH! Add to that the distance...well just ugh! BUT the good news is, you don't see them often so if they say they are fine then you actually believe they are fine...what you don't see won't hurt you;) Plus they grow up a lot in that time and surprise you. And you learn to loosen the reigns a little bit. As hard as it is having O go so far away, I think it was the best thing for her and disease management. If she were closer, I would just continue my control freak tendancies and probably never let her take over. Plus, it is Crohn's. There is rarely such a life threatening emergency that can't wait for the flight home if need be and look at O...she was in a small regional rural hospital with no GI's on staff and they managed to take perfectly fine care of her. During this last impatient stay when the attending weren't playing nice with her GI I was missing that sweet small hospital who did everything our GI told them to do;)

Have you found a local GI to care for him should he need it? Registered with disability services?
 
UPDATE

O's weight is still steady.

She is down to 5-7 BM's a day.

Still doing that bleeding thing in the a.m. then back to normal blood throughout the day but seems to be less later in the day.

But the best news is....she is having at least 1 semi formed stool a day for the past three days!

Checked in with GI and he said that this is very good news and evidence of healing!

IDK if it is:

Entyvio finally kicking in - doubtful
Steroids - finally doing their thing - maybe but she has been on them for over a month
Improved nutritional status - probably this. The GI said she was so malnourished her body was using all it's energy to keep her going and healing had to be given up. Now that she is nourished properly the steroids can do their thing.
CDED- since we just really started this on Tuesday and we started seeing the turn around on Wednesday, I am willing to bet it had at least a little something to do with it...combined with improved nutritional status.

She went to the mall yesterday with her sister! A nice normal teen activity!

We have a very bright outlook here at Team O today. Entyvio and labs Thursday. GI appointment on Friday. Steroid taper on Saturday. I will let you guys know how much after the appointment on Friday.
 
YAY, what great news!! So glad she got to do something "normal" - she deserves a break! Hope she put her shopping on Mom's credit card ;).

Thrilled to hear she is feeling better. Go Team O 😀🎈🎉🎈🎉🎈!!
 
Again 😲 !!
Go O Go!!
I just want to thank all of you wonderful parents for sharing all the ups and downs of your kids' treatments. We are trying to get my own son sorted out and it is so helpful to see what others have tried and the adjustments within the treatments that seem to help.

MLP thanks so much for posting the recent articles--I went down the rabbit hole of following all the links related to diet/EEN/biome and sent some to my son. These articles seemed to get through to him in a way I could not seem to.

CIC I don't know how you have managed to keep your good humour--it is so stressful when your kids (even the adults!) are sick and moms are the people that the kids can lose it with because we still have to love them after. :) So I know it has not been all roses for you interacting with O while she has been sick. So glad to hear that finally there seems to be some improvement for your daughter. Long may it last!
 
Hi Happy, Thanks so much for your encouraging words.

It is so true. If you want to know how strong your relationship with your child's, try locking yourself up in a hospital room 24/7 for 33 days!

I was just rereading your thread this morning to see if there was anything I might be able to add and identifying so much to your trials as well.

The only thing I can offer is that we have researched the FODMAP diet a lot here when they thought some of O's issues were IBS. It really isn't a diet intervention that you can attempt on your own. It is really meant to be directed by a dietician. It makes me sad that GI's read about these diets and say, "here, try this" but then don't put the necessary support in place.

That said, our GI has also recently done a version of the same and said, "lean toward the CDED diet". He only gave us broad guidelines of allowed and not allowed . So we are trying to figure it all out.

If you have access to a registered dietician, I would try an appointment with one. They have a lot of experience with all these diets but also might be able to provide some advice on what it is your son might have and help you ask for the appropriate testing.
 
Thanks CIC
Unfortunately access to dieticians with IBD/IBS knowledge is limited here unless you get the IBD diagnosis and access to the IBD team. That being said, he did see a private Monash-certified dietician who also works with the IBD team and has Crohn's herself. Also unfortunately, as per the docs, she could not believe that he was actually eating the amounts of the foods that he was eating and still losing weight, so she decided to input the amounts of foods that she thought he meant (for example 1 cup cooked rice rather 1 cup raw rice) so her advice was not very helpful as she did not listen to him. Even so, he followed all of her advice about the LowFodmaps elimination phase to the letter. We are trying to get some blood work for vitamin levels, iron levels etc done now from his GP as neither GI is interested in doing much else for now.

Thanks for thinking of us.
 
Oh man! Bummer. Monash is the key there. UGH! Keep fighting mama! You know your kid! This is not normal! There has to be an explanation!
 
CIC I don't know how you have managed to keep your good humor--it is so stressful when your kids (even the adults!) are sick and moms are the people that the kids can lose it with because we still have to love them after. :)
Click to expand...

Truer words have never been spoken! We have had many, many fights during hospitalizations....and my daughter has never been hospitalized for more than 12 days at a time! We've done 31 days in a year but that was split into 4 different hospitalizations. I can't imagine how what 33 days does to you 😬 - I would have been banging my head against a wall by day 10:oops:.
 
crohnsinct said:
LOL! Not gonna lie, I had to leave the room twice and once she politely said, "mom, go outside for a walk"🚶‍♀️
Click to expand...

If those are worst things that happened I would call it a huge success, and celebrate YOU!
O must be thinking about whether she can return to school in a month or so...
You are one day closer to seeing her GI. I think she is going to show up to see him with some good progress.
 
Well this is a bummer. Small study but hopefully our insurance company doesn't read it before we request our next double dose of Etyvio...this feeds right into their statement that therapeutic drug monitoring in Vedolizumab has not been proven. But these are some pretty close comparisons. I think other studies have looked at level of say 10 compared to 20 and they have seen a difference.

Association of trough vedolizumab levels with clinical, biological and endoscopic outcomes during maintenance therapy in inflammatory bowel disease

  1. Nikolas Plevris1,
  2. Philip W Jenkinson1,
  3. Cher S Chuah1,
  4. Mathew Lyons1,
  5. Lynne M Merchant1,
  6. Rebecca J Pattenden2,
  7. Ian D Arnott1,
  8. Gareth R Jones1,
  9. Charlie W Lees1
Author affiliations

Abstract
Objective To establish the relationship between trough vedolizumab levels and outcomes during maintenance therapy.
Design Cross-sectional service evaluation was performed on patients with inflammatory bowel disease (IBD) receiving maintenance vedolizumab therapy (minimum of 12 weeks following induction). Prior to infusion, data on clinical activity (Harvey-Bradshaw Index or partial Mayo score), trough C-reactive protein (CRP)/vedolizumab levels and faecal calprotectin were collected. Endoscopic data (±8 weeks from vedolizumab level testing) were obtained by review of medical records. Vedolizumab levels were processed using the Immundiagnostik monitor ELISA.
Setting The Edinburgh IBD Unit, Western General Hospital (tertiary IBD referral centre).
Patients Seventy-three patients (30 ulcerative colitis and 43 Crohn’s disease) were identified who fulfilled inclusion criteria and had vedolizumab levels matched with clinical activity scores, CRP and faecal calprotectin. Of these, 40 patients also had matched endoscopic data.
Main outcome measures The association of trough vedolizumab levels with clinical remission (Harvey-Bradshaw Index <5 or partial Mayo <2), biologic remission (faecal calprotectin <250 µg/g+CRP <5 mg/L) and endoscopic remission (Mayo score 0/no inflammation and ulceration on colonoscopy).
Results The median trough vedolizumab levels were similar between patients in and not in clinical remission (10.6 vs 9.9 µg/mL, p=0.54); biologic remission (10.6 vs 9.8 µg/mL, p=0.35) and endoscopic remission (8.1 vs 10.2 µg/mL, p=0.21). Quartile analysis revealed no significant increase in the proportion of patients in clinical remission, biologic remission or endoscopic remission with increasing trough vedolizumab levels (p<0.05).
Conclusions In this cohort, trough vedolizumab levels were not associated with clinical, biological or endoscopic outcomes during maintenance therapy.
Click to expand...
 
Results The median trough vedolizumab levels were similar between patients in and not in clinical remission (10.6 vs 9.9 µg/mL, p=0.54); biologic remission (10.6 vs 9.8 µg/mL, p=0.35) and endoscopic remission (8.1 vs 10.2 µg/mL, p=0.21). Quartile analysis revealed no significant increase in the proportion of patients in clinical remission, biologic remission or endoscopic remission with increasing trough vedolizumab levels (p<0.05).
Conclusions In this cohort, trough vedolizumab levels were not associated with clinical, biological or endoscopic outcomes during maintenance therapy.
Click to expand...

What is the difference between clinical remission, biologic remission and endoscopic remission? I'm assuming clinical remission is the absence of symptoms, so then endoscopic remission would mean that the scope looked clean, visually? And biologic remission would mean biopsies were clean?

O's trough level was 11, right? So she's right around the levels in the study... But I wonder if getting it up further - like to 20 - may make a difference? I'm going to hope that it will for O.
 
Exactly Maya! How do they compare 9.9 to 10.6 and say there was no significant difference. I wouldn't expect there to be. They are practically the same! But 11 (O's level) compared to 20 we are shooting for is significant. FWIW - there are a few studies looking at redo drug levels and they are split on whether a higher level helps and if drug monitoring is beneficial. This is why our GI said that there was little in the way of medical literature to support our request.
 
That article says used faecal calprotectin <250 ug/g and CRP<5 mg/L as evidence of biologic remission and appearance of gut (no inflammation and ulceration) on colonoscopy as evidence of endoscopic remission.

Main outcome measures The association of trough vedolizumab levels with clinical remission (Harvey-Bradshaw Index <5 or partial Mayo <2), biologic remission (faecal calprotectin <250 µg/g+CRP <5 mg/L) and endoscopic remission (Mayo score 0/no inflammation and ulceration on colonoscopy).
Click to expand...

This is Mayo scores for UC; there appear to be two parts, symptoms and endoscopy. https://www.mdcalc.com/mayo-score-disease-activity-index-dai-ulcerative-colitis

This Harvey Bradshaw Index measures symptoms. https://www.igibdscores.it/en/info-hbi.html
 
Yeah. O's Mayo score is a 12. I saw that when I gathered her records to send for a second opinion. Bummer.

Do you agree xmdmom that comparing patients in remission with a trough level of 10.6 and not in remission with a trough level of 9.9 doesn't really tell us much. They are saying that higher trough levels are not associated with any remission. Seems to me you would want to look at a greater difference in trough levels. Like patients with >20 as compared to patients with 10 and then can determine if increased trough levels are relevant. I think the LOVE study I posted earlier in the thread came to the conclusion that higher trough levels do affect remission rates.

Or am I missing something?
 
crohnsinct said:
Exactly Maya! How do they compare 9.9 to 10.6 and say there was no significant difference.
Click to expand...

What they're doing is taking a bunch of patients and separating them into groups:

people in clinical remission vs. people not in clinical remission

people in endoscopic remission vs. people not in endoscopic remission

Etc

Then they take the entyvio levels in each group and calculate an average level for each group. If variation in entyvio levels among patients at normal doses really matters for inducing remission, then you would expect the levels of those in remission to be higher.
 
Right Pangolin. But what I am saying is there isn't enough of a difference between the responders trough level (10.6) and the non responders trough level (9.9) to say that trough level doesn't make a difference. They are so close that they are basically the same. So you really can't say that increasing trough wouldn't make difference. They are just basically saying a bunch of people at roughly the same trough all had different responses to therapy. Not saying a lot. Besides it was a very small study.

If you look at the LOVE study their data says that responders had something like >20 trough level and non responders had around a 10 or so...I don't remember the exact numbers and too busy to look them up right now. So in that study, higher trough levels DO lead to improved response.

This just goes to show that you can probably find paper somewhere to prove anything you want. IT also proves our GI's point that there isn't enough consistent data on trough levels for Entyvio for us to petition the insurance company to cover the higher dosing. Thank goodness our GI had such good persuasive skills on his own.
 
We could look at the study to find out the range of levels they had, but there's a good chance some patients had levels closer to 20. In order to make the averages nearly even, any in remission at higher levels were balanced out by those not in remission at higher levels and by those in remission at low levels. So, no apparent effect of varying levels in this study.
 

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