• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Heard from Doc today

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).
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?
 
Exactly Maya! How do they compare 9.9 to 10.6 and say there was no significant difference.
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.
 
For some reason, this post didn't post. So this is in response to a question last eve.

They are saying that they didn't find an association between trough levels and remission in their cohort of people with Crohn's and U.C, on maintenance V for between .8 to 2.2 years. Their trough range was 7.9 to 16.1 so none were in the 20s.

They mention that there were some on q 4week schedule but most on q 8 weeks V and the q 4 week schedule group had higher trough V levels and were less likely to be in biologic or clinical remission and possibly had more severe disease. They also did another analysis without these patients and were unable to find an association between trough and remission.

The other study was longitudinal, only had Crohn's patients, and was looking at V levels at <. 5 years.
 
UPDATE

After my last update it appeared that O slid a little. BMs went up to 11 and 12 a day and she started bleeding a lot. However, 3-4 were semi solid so things were still encouraging.

She had her Entyvio infusion yesterday and labs were done.

Shockingly her Hgb (10.8) and Hematocrit (33.6) are improved since discharge. The only thing her GI said would make those false high is if she were dehydrated and considering she is drinking 2 liters of water a day and had a bag of fluids the night prior that is unlikely. He can't explain how it is as high as it is with all the bleeding and how pale she is but we will take it. Honestly she is bleeding at least a teaspoon of blood with every BM and sometimes it is all blood. Toilet paper is sopping with blood.

Her albumin is almost in range at 3.4. This is excellent. He said it was in the dumps at discharge at 2.7. Low albumin is a negative predictor for nutritional status and how you will metabolize the drug. So the improved albumin should help her hold on to more drug.

CRP is up a little bit more at 3.9 or 39 but at least not in the hundreds like before. It was 4.1 at last admit so basically the same.

He ordered a slide review and I will put the results here in case anyone else comes across them.

RBC Morphology: abnormal...makes sense with low HGB and HCT
Polychromasia: level 1+
Toxic Granulation: Present
Dohle Bodies: Present

I looked up these things and some could be from acute blood loss, some intra abdominal abscess, infection (sepsis), and severe inflammation. So as a Crohn's patient probably no surprise there. GI didn't mention them so I assume all is good there.

She has gained a pound from discharge and out of the scary "admit" zone BUT he really wants her at the 15th percentile for BMI so we have work to do there.

Her friend in Texas is moving to Peru for two years and is having going away party this weekend. He o.k.'d her going to Texas until Monday which means holding all feeds (lipids and fluids) for three nights. He said she is being so responsible and working so hard that he will trust her not to drink and to eat CDED and to monitor PICC line status (any fever and direct to ED and admit for 24 hours of IV antibiotics). From there she will fly to Utah and meet the rest of the family where we will spend a week at a softball tournament for T. I will bring her Picc supplies to resume o/n feeds on Monday.

We will do labs in two weeks. If albumin is still good, we will try to decrease the Entyvio down to 500 or 400. He said there is no clinical guidelines for what we are doing. She is the only patient outside of the current clinical trial who is trying this so we are making it up as we go. If Albumin tanks again we will stay at 600. Will have to get insurance approvals.

We are dropping steroids by 10mg starting tomorrow and will wait for the next set of labs to go down more. At that point may go down 5 or 10 more mgs. We need to see if Entyvio is working, she has been on steroids too much the past 2 years and he doesn't want to send her back to school on steroids.

She asked about school in the fall. He slowed her down on that one. No crystal ball. He is 70% confident that she could go but warned her that she is still so fragile and if we push too hard everything can topple down. He said we worked hard to get her where she is and we don't want to risk it. We have a lot of work ahead of us. He would like CRP lower than 1 or 10, no bleeding, near normal labs....She will have to eat A LOT more to show that she can exist without the PICC line (up her BMI) as he does not want to send her back with it if he can avoid it. It is too hard to manage remotely and too high a risk of infection. Plus she is on the swim team and he REALLY wants to get her back in the pool. But if that is the only thing holding her back he will send her with it. So weight check in two weeks with labs and then we may hold nightly feeds for a week and see how she does.

I think this sums it all up.

So he really did know what he was doing all along and we just needed to improve her nutritional status as honestly that is the only change we made. We did put her on IV steroids for a few days and then increased back to 40mg but honestly the steroids were not holding her until we improved her nutritional status. I just wish the inpatient team listened the first time and sent her home with the PICC line as we might have been able to avoid the last admit. Oh well, hindsight is 20/20.

Just holding our breath with the drop in steroids. Hopefully with the improved nutritional status this time it will work! Also hoping the bleeding slows down!
 

Maya142

Moderator
Staff member
It sounds like things are moving in the right direction!! That's wonderful to hear!!

I agree with him - baby steps right now for O. Let's see how she does without lipids overnight. Let's see if the bleeding starts to reduce. We can worry about school once she is a bit more stable.

She is so much like my daughter - she just REALLY hates being out of school. Will do everything she can to avoid missing school.

We have a lot of work ahead of us. He would like CRP lower than 1 or 10, no bleeding, near normal labs....She will have to eat A LOT more to show that she can exist without the PICC line (up her BMI) as he does not want to send her back with it if he can avoid it. It is too hard to manage remotely and too high a risk of infection. Plus she is on the swim team and he REALLY wants to get her back in the pool. But if that is the only thing holding her back he will send her with it. So weight check in two weeks with labs and then we may hold nightly feeds for a week and see how she does.
He's willing to let her go to school with a PICC line?! How will she manage that on her own? Dressing changes, keeping everything sterile - it's not easy. We were trying to figure out how M could do it in college and her GI said she'd really need someone else (aka Mom) who could help her do everything to care for the PICC line and prevent infections. She said an NG tube was MUCH safer.

Very glad to hear she is a bit better! Hope the taper goes well.
 
Maya, not really. He said no picc line was a condition of going back to school but then he saw how sad she got and said well maybe if we have to...if that is the only thing holding you back...maybe we can do it.

Dressing changes are done by visiting nurse or at hospital. She would need to get an extension so she could use two hands because as it is now she absolutely needs another person to do it. Even down In Texas she is going to have to do daily saline flushes and heparin and we practiced how she would coach her friend to help her. Ironically said friend is very skiddish over anything medical so it will be interesting to say the least.
 
I'm so glad things are improving for O!! It sounds like her GI is on the ball and methodically taking her on a healing path one step at a time.
I hope you both have a great (and so well deserved!!!) time with friends and family!!
 

Maya142

Moderator
Staff member
I know that PICC lines can stay in and be used at home and in school. But isn't it much, much safer if she got nutrition via an NG tube? Or shakes that she drinks?
I'm sorry, I'm just shocked that he would even consider a long-term PICC line when she could receive nutrition via an NG tube. I feel like if she is so sick that she requires TPN for nutrition, then she probably shouldn't be in school. Plus, There are so many risks - infections, clots, an embolism...It's scary enough when a parent has to do it, much less a teen! An NG tube is so much safer.
 
I know that PICC lines can stay in and be used at home and in school. But isn't it much, much safer if she got nutrition via an NG tube? Or shakes that she drinks?
I'm sorry, I'm just shocked that he would even consider a long-term PICC line when she could receive nutrition via an NG tube. I feel like if she is so sick that she requires TPN for nutrition, then she probably shouldn't be in school. Plus, There are so many risks - infections, clots, an embolism...It's scary enough when a parent has to do it, much less a teen! An NG tube is so much safer.
Agree with all this. Maybe you could talk to O about how she has a much better chance of going back to school (and making it through the year) if she is using a tube rather than a PICC line, since there's so much less chance of complication. Also, keep telling her about all our kids' stories--about how everyone thinks a tube sounds really hard before trying it, but everyone finds it not-so-bad after the first few days. And I really think it will make her feel so much better physically too.

Good luck with everything this week--hope her trip goes well.
 
Glad to read about the encouraging signs. I wish you both a good trip. Try not to think too much right now - just enjoy your trip. You will have plenty of time to worry about it all after your trip.
 
I think the issue is more that he really doesn't want to send her back to school needing supplemental nutrition period. Since nutritional status seems to be so important to her either succeeding or not I really think he wants to know that she can do it before she leaves.
I honestly think he entertained the idea of the PICC line staying in just to appease her in the moment but also as a stop gap just for the first couple of weeks "just in case" she slides at which point she would be brought home and medically withdrawn from the semester. It isn't really a long tern solution to be used at school. Sorry I didn't explain that fully.
 
Last edited:
Oh man O really is an amazing young woman. It is amazing how can she can hold up so well emotionally, plan travel and be so determined to go back to school. I forgot where but I think she goes to school in my region. If she does (so hopeful) you know I will gladly go put eyeballs on her for you. We can create a reason for a crazy random internet woman showing up.

I hope this weekend you can take a break and focus on the rest of your life. It sounds like she is prepared to handle the line, is learning about importance of reporting issues, and needs some fun. Hoping for more improvement in Utah!
 
Last edited:
The thought of her travelling plus dropping steroid levels sounds very risky. She is in a very fragile state.
Praying that being with friends gives a psychological boost to counteract the physical stressors.
 
She reports that she feels FABULOUS! This is wAy better than her usual "fine".

Her and her friend handled picc line heparin flushes like experts. She is ready to fire me as her nurse.

She stayed on cded the whole weekend with the exception of one chicken taco that she ordered "trashy". Which means they put queso on it. In addition to being dairy pretty sure said quest is processed but she got the GI's approval for a 10% cheat so she is quite pleased with life right now.

She flies to Utah tonight, we pick her up at midnight and start her o/n lipids and fluids again. Even though she swears she probably gained all the weight her GI wants her to gain over the last two days. 😂
 

Tesscorm

Moderator
Staff member
O is the ultimate 'where there's a will, there's way'!! Even with all the extra coordination and organizing that is currently part of her life, I hope it's smooth sailing until she is truly in a stable place!! The two of you truly are real troopers!! :D
 
OMG. I'm so glad she was able to enjoy time with friends (and even a taco!!). She deserves so much credit for handling the medical/dietary end, which we all know is no easy task, especially in social situations, and for never losing sight of the joy!! I know you must have been worried and look forward to seeing her tonight. Kudos to you both!!
 
Hey y'all! Picked up O Monday night. She looks good.

As the days have gone on urgency and frequency have picked up quite a bit. Bleeding is down. She is really fatigued and not wanting to tour or hike or anything really. Tenesmus has returned pretty badly. She still has 1-3 soft formed stools a day but they are getting looser.

She is going down another 5 mugs on prednisone tomorrow.

Her calpro from infusion posted and it is the lowest it has been in a long while. 400! So I am sure there is or was some healing going on.

Just have to sit tight and see what happens. Labs and weight check next Friday.
 
Glad she is with you. We will take the signs of progress. Do you think the exhaustion is expected with two trips?

How does her GI feel about FCP? I think some patients and GIs look at levels and changes as an indicator of amount of inflammation. My son’s GI thinks high is high and doesn’t feel much better about a 400 vs 1,000. Maybe that is specific to disease location or history?
 
She has also dropped her steroids significantly so that is also a factor too. Her little body needs to adjust to everything. Glad the time away worked out for both of you. Hoping for great results on Friday. :)
 
Optimistic, YES! I think she is just not used to all the activity. After a month and a half of laying in a bed she has to build up her stamina. She probably wasted what little she had enjoying herself in Texas and now that she is with family she can let her guard down and just be tired. Plus, the altitude is probably affecting her and the heat.

Our GI looks at values as an indicator of severity. When she was at 800 he didn't think it was high enough for the symptoms she was having and he thought she was really experiencing more IBS. He said be as bad as what she was describing he would expect cal pro in the thousands. So I am sure a 400 is very reassuring to him. He also looks at trends. So someone who was at 800 who is now 400 is going in the right direction.

He did also say that small bowel disease doesn't raise cal pro so dramatically so a 400 in small bowel disease is more alarming than with someone who has all colonic disease.

All that said, T had a 465 and he isn't linked an eye. Also, our old GI didn't pay attention until it was consistently over 500.
 

my little penguin

Moderator
Staff member
See now the fact 800 doesn’t register action and tries to call it ibs is scary
Especially since she almost lost her colon
800 is flaring period
And for her fecal cal DOES NOT reflect the severity of her disease obviously
So maybe have a chat about putting too much reassurance into one test vs the persons symptoms
 

Tesscorm

Moderator
Staff member
I can imagine that her stamina absolutely needs to rebuild. After being inactive and so sick in the hospital for so long, back-to-back trips and activities would surely drain her. I hope you both had a chance to rest and recover a bit over the weekend. How's she feeling today?
 
Thanks Tesscorm!

Hard to tell how she is. She has some stellar days BM wise and then some awful days. Is she is on her way to remission or on her way back to flare town? She is down to 25 mg's of prednisolone now.

Her weight is stable so that is good, but she really needs to concentrate on gaining.

She has a dressing change for her PICC Line on Friday and we will do labs and a weight check. Then her GI will decided if he wants to stay at 600mg's or if we can reduce it. So I will know more as soon as the results are posted. I am going to go out on a limb and say she is getting better because we are seeing a lot less blood, a few more formed BM's and less frequency on the good days.

My favorite part of the Crohn's game...waiting!
 

Tesscorm

Moderator
Staff member
I really hope you're right and she really is slowly improving!! Why would he drop from 600mg? If she's doing better and gaining, why change things right now? But, maybe there are other health related reasons to drop to a lower level??

Lots of wishes all continues to get better!!!
 

my little penguin

Moderator
Staff member
Second that
Why drop from 600 mg
When she isn’t even off steroids yet
To prove the 600 mg even works
AND she is still have blood
She needs to be stable
🙄
 
Insurance is. forcing the drop. They say there is no evidence that 600 mg A) works and B) is safe. They approved it as an acute, post hospitalization intervention. They say that just like other biologics as you heal, you need less drug so they have approved 600 for August but want to see that we are at least trying to reduce the level down. They are also the ones driving the quicker than usual steroid taper.

I agree it makes no sense, especially given how quickly this kid tumbles.
 

Tesscorm

Moderator
Staff member
I know my opinion is useless BUT insurance should NOT be allowed to drive the treatment for any patient! That is crazy!:mad:
 

my little penguin

Moderator
Staff member
So wait
They approved for August
But you are dropping to below 600 anyways even though it’s approved
Or doing 600 in August
And then dropping ...
 
Wowsa! O is still a little all over the place. Some days with only 4 BM's, half soft solid with some blood and other days 6-7 BM's with 1-2 soft solid BM's and a lot more blood. Today had a BM that was almost ALL blood.

Went for dressing change and labs and VERY happy to report that:

CRP is down to 2.2, lowest it has been since March!
HGB is up almost to normal
HCT is up, almost to normal
Albumin is stable just under normal
Sed Rate is down to lowest it has ben since March

Weight is same as at her last appointment two weeks ago. Darn! Was really hoping to start the trial of holding O/N feeds to see if she is ready to go back to school. Haven't heard from the GI yet. maybe he will still let her.

I am thinking Entyvio and the concentration on nutritional status is working. Sure she is still on 25 mg's of prednisone, but in the past even 40 wasn't able to hold her and she still ended up in the hospital.

She is off to visit a friend from school who lives 2 hours north of us. Ironically she has been struggling with some digestive issues and has been admitted for severe pain and vomitting. A third friend of theirs is visiting from the East Coast so she will now take her around sightseeing after they visit their friend. She is asking the GI if she may stay overnight as she got a late start and doesn't want to drive the two hours home in the dark. It means skipping lipids and fluids tonight but I am sure given the good labs he will approve it.

I just don't get how she could be bleeding as much as she is yet labs are improving. I read other posts where kids have spots of blood and their HGB etc are in the dumps. It is all such a mystery.

I am assuming we are on for our next step down in prednisone to 20 mg's tomorrow. Woohoo!
 
Hi CiC, glad to hear Olivia is doing better. I’ll keep praying for her. She sounds like such a strong and determined young lady! She is probably a lot like you. I’ve read all your posts but I don’t have as much experience and wisdom as a lot of the other parents so I don’t post as much. Sending hugs and good wishes your way 💜💜💜💜💙💕
 
Update:

O's Entyvio levels came back at 44 mid cycle and the GI says that he will drop her back down to 300mg for next infusion and that the jump to 600 did the trick.

I questioned why we would go back to the same level that was not working and that I was concerned her level would fall over the next two weeks to below the desired trough. I assumed it was because there is healing going on and less disease activity means slower drug clearance.

He said her clearance should normalize now with healing and that she is already getting twice the label dosing by getting infusions every 4 weeks at 300 mg. He also said that with anti-integrins, the momentum gets going AFTER induction not during as in anti-TNFs.

I get it. 600 mg hasn't been tested. Insurance probably won't approve it going forward. Blood labs are improving etc. Doesn't mean I like it.

This morning her cal pro posted. >1000. This was on one week of reduced steroids down to 25mg. Her last value (one week prior) of 400 was on 30 mg of steroids. No email from GI about this.

She is still bleeding. Frequency is still up. Still has tenesmus. Still only weighs 116.5 so no change at all from discharge. Only good thing is she is still having at least 1 soft semi formed stool a day.

School starts 8/19 which means she has to leave 8/17. Haven't had that conversation with the GI.

Not feeling warm and fuzzy.
 

Tesscorm

Moderator
Staff member
That school deadline just adds to all the pressure! :( How often is she having bloodwork and cal pro? When will you be seeing GI again?

Wish you were seeing more obvious improvement - less bleeding, more weight gain, etc. :( Still, there is improvement, hopefully, that momentum will pick up before school! ...Hugs!
 
See the GI 8/16, the day before she would have to leave to go back to school.

So far labs were done at infusion 7/11 and then again 2 weeks later. She will have labs at her next infusion 8/7 so two weeks after the last labs. Not sure which labs he is ordered and if cal pro will be on there.

Yep! There was improvement as of last Friday. I am just hoping that the drop in steroids doesn't mean that all labs will start slipping in addition to cal pro but if we pull our heads out of the sand they probably will follow the cal pro.

She wrote to him about her symptoms and he requested a conference call between him, her and I tomorrow. I will let you guys know what happens.

Anyone care to play "Outguess the GI"?
 
Haha...yep! I agree MLP.

I am also thinking he will o.k. school. "no school" isn't a decision you deliver over the phone. I am guesing call will be, "let's see, what can we do to get you to school?". So probably, let's add...enemas or methotrexate. Or maybe even, should we add humira or stelara. Or maybe he is just calling to ask more pointed questions to get more info in order to make some sort of a decision.

I am just super curious about when surgery is going to be mentioned again because it feels like it has been so long, I don't want to have that rug ripped out from under us again. It looks like maybe we are a bit closer....if Entyvio doesn't hurry up and decide to work.

The thing with her cal pro is I don't think it is simply rectal disease that is causing the increase as rectal disease doesn't typically elevate FCP so dramatically. It is like the TI in that raises it a bit. It is really more colonic inflammation that gives those dramatic increases.

Ahhh the suspense of it all!
 

Tesscorm

Moderator
Staff member
Ugh... I just wish everything was going a bit more smoothly... so many balls in the air!! And, I just think it's wrong to change anything (steroids or entyvio) until she's on firmer ground, especially with school coming up. I get that the GI also needs to work with insurance, etc. but, whatever the reason, it's still wrong to not let O get the healing onto sturdier ground! :mad:

I'm sure this has been discussed earlier but can the steroid taper not go more slowly to give entyvio more time?

And, yep, I totally agree with MLP as to how the coming phone apptmt will go...

School is ok
But call if xyz happens
Otherwise we are all good:rolleyes:


But, I suppose there isn't much of an option... she's already missed summer courses, I can't imagine what it would take to convince her to miss Fall courses...:p
 
Had conference call with GI this a.m..

Started off by saying he felt we would be jeopardizing her momentum by putting her in a higher stress (on the body not emotional stress) environment and less proactive ongoing care. He did say he thought if she went back it was likely inflammation would get worse. He didn't want to send her back with a PICC Line.

No perfect answer. Her well being and deep remission have to be #1 priority.

IF she goes back she will need to go back with PICC Line as she is not gaining weight and pulling it will result in severe weight loss and immediate flare. IF she goes back, she will need a local care provider she can see weekly for weight checks, labs, stool discussion, PICC line management and overall look see. He would need access to this professional and weekly calls and to have this provider on speed dial so to speak.

He said Entyvio is VERY slow and takes time. Even though her last cal pro was high her last labs were encouraging. We asked him why he thought they were so good when her bleeding is so bad. He said her bone marrow has just gotten so good at pumping out new blood and is working in over drive so it won't show up on labs.

He opened the door and she shoved her whole body through. She has spent the day researching providers in the area and will give him names and numbers. He will call them over the next week to see if anyone is willing to work with him.

We will keep checking in weekly and if something moves one way or the other maybe the decision will be made soon. She has infusion next Thursday and those labs might help.

He wants her to rest as much as possible over the next three weeks. Also to consider IF se goes back taking a lighter load (4 classes instead of 6). She will entertain dropping one other majors down to a minor.

So we are no further along. But at least she heard how tentative he is. But I am afraid all she heard is there is a chance.
 
Idk if this is going to sound rude but I really think it will help. A picc like is such a useful tool and I feel it’s not being used. I feel if she had those last months with real bowel rest she wouldn’t need the picc now. All in all I don’t see why she is not on full tpn and nothing by mouth not even pills. Full tpn and lipids can be given in 12 hours so not going to affect much in terms of being hooked up. Yea I get it’s pretty hard to do (although it might be a plus for some who hate to eat like me) but being in what I like to call the torture phase of a flare is so much worse. Just my thoughts.
 
Kittz128 - not rude. you are asking them same question a lot of us here have been asking. I asked it a lot when she was inpatient and they talked in circles. I never got a clear cut answer. When it came time for discharge the bottom line is no one would provide total PTN for a Crohn's patient on an out patient basis. Insurance won't approve it, hospital won't manage it etc. They are loathe to send patients home with a PICC. So Lipids and fluids are the best we could do and those as sole nutrition aren't enough. Of course we could then ask why not EEN and I don't want to go down that rabbit hole again. But what I will say is during one conversation I was told EEN is not exactly "gut rest". TPN goes into the veins and avoids the gut completely.
 
It’s true een isn’t gut rest. Amazingly it made my symptoms worse when I did it and solid food didn’t. I assume it’s the high sugar in those things. It’s funny my hospital is the opposite of yours they wanted to send me home on tpn but I didn’t wanna leave because I knew at home tpn would be a nightmare for me to handle and I got away with it because iv steroids can only be done inpatient. I guess that’s the loophole I used. Also I’d ask again and insist on real bowl rest I mean they can provide it if it’s ordered I don’t buy that a company doesn’t want to profit off of tpn and insurance has to approve it as it’s proven to work. Imagine if someone has sbs they’re not gunna say we can’t give you tpn...
 
haha...no. They give it to pople who absolutely can't get their nutrition any other way but not to a Crohn's patient who could do EEN. They will absolutely approve TPN inpatient though and she had it for 3 weeks...just not complete gut rest. Her GI wanted complete gut rest but when she was inpatient it was the roulette wheel of attending and none of them (except the last one) agreed with her GI on gut rest. They kept pushing food. So as long as she was there she got TPN but as soon as it looked like she could go home and we couldn't find a company to support the TPN and insurance wasn't approving it we moved to lipids and fluids.

Right now by bigger concern is getting her on a therapy that will maintain her. It doesn't seem to me that Entyvio is going to work. IT has been 16 weeks and she has been on Tacrolimus, IV steroids and oral steroids also had a dose at 600 mg and it still isn't handling disease. IDK how much longer the GI is planning to give this drug. If she goes back to school clearly until December. UGH!

Funny how hospitals differ. My friend was in the adult hospital next door to my daughter and she said they also gave her a hard time about sending her home with a PICC. They eventually did but pulled it out soon after as one of the docs was appalled they sent her home with it. Just weird.
 
Idk I was offered tpn to go home in reality I didn’t need it but it would make a world of difference. Proper calories are a must during a flare I think sometimes they put extra calories. Adult hospitals definitely hate patients with picc lines. I mean the attending I had once practically tried to force me to eat..Sometimes I feel the doctors want us to do bad so they can just do a quick fix surgery especially the non gi attendings at adult hospitals. The pediatric gis are way nicer but aren’t great at being agressive on treatment.like I don’t get all the torture we go through
 

Tesscorm

Moderator
Staff member
Wow, so stressful when everything is so uncertain and decisions need to be made last minute! Not the ideal situation for any control freak! LOL

But, at least, there's progress in that O and GI are considering a local GI for care... and, GI is considering sending her back with PICC....

Is there any possibility that O could take some Fall classes closer to home and transfer the credits? Or online courses for her minor? Both my kids did a couple online courses over the summers to get the credits and ease up on the regular semester demands...
 

Maya142

Moderator
Staff member
No perfect answer. Her well being and deep remission have to be #1 priority.

IF she goes back she will need to go back with PICC Line as she is not gaining weight and pulling it will result in severe weight loss and immediate flare. IF she goes back, she will need a local care provider she can see weekly for weight checks, labs, stool discussion, PICC line management and overall look see. He would need access to this professional and weekly calls and to have this provider on speed dial so to speak.

He said Entyvio is VERY slow and takes time. Even though her last cal pro was high her last labs were encouraging. We asked him why he thought they were so good when her bleeding is so bad. He said her bone marrow has just gotten so good at pumping out new blood and is working in over drive so it won't show up on labs.

He opened the door and she shoved her whole body through. She has spent the day researching providers in the area and will give him names and numbers. He will call them over the next week to see if anyone is willing to work with him.
I would say the best option here would be for O to take a medical leave of absence and focus on getting well. If she can't do online classes, I think the best option would be to take classes at a school close to home and close to her doctors.

That said, I have an incredibly stubborn young adult daughter, whom, as you know, had major surgery recently but is still absolutely insisting that she will go back to school in 4 weeks. So although for O the best option would be to keep her home, get her well and maybe take a class or two while she's at home for the fall semester, I know it is NOT going to be easy to convince her to do that!!

But my daughter has done that, as a "visiting student" at a state school and a local state college. It is does become more difficult when your kiddo has declared a major and has to take upper level classes for that major - those classes can be hard to find. Sometimes it's possible, such as if the class is a higher level class but has a pretty "standard" or similar curriculum at most schools - I'm thinking of my daughter who considered taking Calculus III (multivariable calculus...I think 🤔. Math is not one of my strengths) at a local school. She was able to find a class nearby and got it approved but due to medical reasons, she didn't end up taking it. She did take an Intro Biology class at another school and transferred the credits to her school - that was a major requirement but because she got permission from her advisor, department chair and her dean, it was allowed.

Does O have distribution requirements left - that she hasn't taken? Because now if my kiddo has to take more time off, she is hoping to finish up distribution requirements at a state school or college near us, but she'd need to get approval beforehand. But it is apparently. possible.

And she's going to hate me, but has her GI considered sending her back to school on partial EN? Because it is sounding like she needs the PICC line for good nutrition and calories, but she is still eating food, so it's not really for complete gut rest. So then would an NG tube work? She could do tube feeds overnight, by herself. No one has to know. The risks of infection and sepsis are SO much lower...

Sorry, don't shoot the messenger 😬 !! Just was wondering if she'd consider it at all...It just seems so much safer.
 
She can't take classes close to home. We have looked at all the schools near us and none have her program.

She went into school with a good number of credits due to dual enrollment when she was in high school and AP credits. She couldn't apply to her major until she was dome with her sophomore year so spent the whole first two years working on all the other coursework. So she only has her major classes left and her university will not transfer credits taken elsewhere for major classes.

We looked at transferring but the closest school to us is still a flight away AND she is adamant she wants to go back to HER school so.......

I have also thought about switching from the PICC Line to an NG tube. Sure she doesn't want to but she is asking for a lot and if she wants to go back to school you would think she would be willing to make some concessions eh? I will ask her GI tomorrow if it is even an option and then present it to her. Honestly it is in her best interest because then maybe.....just maybe.... she can still swim on the club swim team which is a huge part of her life on campus....that is if the GI will agree to it. Swimming burns an awful lot of calories and probably puts a lot of stress on the body.

She had a great weekend so here's hoping she turned the corner.
 
What exactly is she getting in the PICC line? I recall: fluids and lipids. Can you share what/how much?

I'm still unclear on how beneficial the PICC line fluids and lipids are for her. Does the GI cite any studies or personal experience with IV lipids and fluids in individuals like her? Almost all of the articles are about TPN (rather than partial), and the consensus seems to be: "Parenteral nutrition is indicated only when enteral nutrition has failed or is impossible." and ""TPN does not compete with enteral nutrition (EN), the latter being the first choice for all patients having anatomically intact and functionally normal digestive tract." (from this and this) You might be interested in this European guidelines on parenteral nutrition (2009) here: https://www.clinicalnutritionjournal.com/article/S0261-5614(09)00096-X/fulltext

It's confusing to me why the GI has offered her the possibility of going away to college with PICC line after previously telling you no PICC line was a condition for going back to school. I do not know what the actual % risks are. Clearly no PICC line is safer than a PICC line but can her GI tell you the actual %risks of complications and what /how serious the complications are? I can see from your daughter's point of view, if the doctor is offering it, it must be safe.

With the PICC line, she couldn't swim at all, right? That would seem to be a major negative for her. Is there a possibility that she thinks she could use a waterproof cover to swim with the PICC line?

Is independent study with professors at her school possible? Have you/has she spoken to a dean or department head at her college to find out if any distance learning with her professors is possible. (I know this isn't what she wants but it would be good to know the options.)

I'm glad to hear she's doing better, and hope things improve every day!
 
xmdmom: Sure thing! Always appreciate your opinion....

The Lipids label just says Intralipids 20% She gets about 265 ml's over 12 hours which they say is 1gm/kg/day. They have her weight at 53 kg.

Fluids are .9 Sodium Chloride 1000ml over 12 hours and she only gets that Mon, Tues and Wed. We always have an extra bag on hand for days she may have a lot of diarrhea or if she starts vomitting again. So far we haven't had to use it.

I totally agree with you and am planning to ask him if we can switch her over to PEN now, keeping the PICC Line in just in case it doesn't work. If we are successful, then my hope is they will pull the PICC and send her back with PEN. As a matter of fact, the success with the CDED diet was with PEN. He asked us to lean toward the CDED diet so it makes sense to do so with PEN.

Great idea about distance learning with her professors. I asked her about it but she fears it won't be possible because they are moving into clinics etc (Speech Pathology) but I will have her ask. She is a double major with Child and Family Development. Both majors require an internship so I am also going to have her ask if she can do her internship here this semester and then she won't even fall behind. Might be a hard sell given she goes to an SEC school and fall is football season...priorities people o_O
 
Last edited:
Score one for the Forum!

I spoke with the GI and made my case for PEN and he agreed. He even thought it would be best if HE presented it to her so maybe she would go along with it better. He thinks that drinking it may even be an option as then we can adjust the intake for however many calories she will be eating throughout the day.

I also pushed him on what the plan is if Entyvio is a fail. If another drug and that takes time to kick in this means another few months of her status being "iffy" at best. If surgery, then maybe just best to keep her home and get her as healthy as possible for that and have it before she returns to school for spring and she can hit the ground running.

He said he is not thinking of abandoning Entyvio anytime before Thanksgiving. He has had too many success stories by waiting for Entyvio to work. Just ugh! That means she will have been on Entyvio almost 8 months.

If Enyvio fails he is thinking Stelara next. Then surgery BUT by then maybe another drug will have been approved.

The call is scheduled for Thursday. We will at least have another round of blood labs then and cal pro will result over the weekend.
 

Maya142

Moderator
Staff member
YAY score 1 for the committee!! At least her GI is bringing it up...I know getting her to agree with it is a different thing entirely. I hope he will tell her that it is MUCH safer than a PICC like and he doesn’t feel safe sending her that far away with a PICC line since she becomes septic very fast. I feel like school is the only incentive which might get her to cooperate.

I would prefer semi-elemental formula but at this point, I think any formula is FAR safer than parenteral nutrition.
As you know, my kiddo is hospitalized and we have been told all the risks that come with PICC lines :eek: since she is such a hard stick (she’s had 14 IVs placed in a week now). A PICC line was discussed and her surgeon refused, given her immunosuppression. I was actually pushing for one because of how often her IVs were blowing or failing and how hard it was to find a working vein even with ultrasound, but after hearing the risks, even my daughter decided she’d rather have a new IV put in daily and deal with being poked often (around 2-6 times for every IV that was placed!)

Feeding Tube Awareness is a website with lots of resources in case she agrees to a tube. Lots of tips and tricks.

Poor O - 8 months on Entyvio is a very long time.!
 
O had her infusion (at 300mg) today. The nurse read me her lab results. I don't remember exact values but H&H was best it has been in a long while and normal. Albumin was also normal. I just don't get how H&H could be normal with all her bleeding but I will take it.

Unfortunately her CRP is up to 4.2 mg/dl from 2.2. The 2.2 was two weeks ago. She was on 25mgs of prednisone. 4.2 is on 20mg's. She was supposed to drop down to 15 last Saturday but given the >1000 cal pro he told her to hold at 20mgs.

She has only gained 3/4's of a pound since dx.

We have a conference call with the GI tomorrow about returning to school and PEN or EEN. I am hoping the combined increase in cal pro AND CRP has him rethinking letting her go to school. I just don't see things getting much better. Unless he increases steroids?????

Ohhhh the suspense of it all!
 
Last edited:
I think so too. A GI can rationalize away a calpro, but less so crp in our experience. Increasing steroids may be necassary but it is a big ol' bandaid.
 
Hey y'all. Sorry I disappeared. I was away with T looking at a college at a recruiting event for softball. Yeah, it is a rural school. Will my girls ever learn?

Anyway, we had our phone conversation with the GI. He avoided the PEN/PICC Line talk. Also avoided the going back to school talk. Only said, "if you go back". I was able to find a doctor who would see her weekly and passed along that info and GI said he would reach out to her so I am thinking we are on track to send her back. He feels the labs are really encouraging. Well all except for CRP which. he is putting down to the fact that she was at the end of the Entyvio cycle.

She is still going >8 times a day, still bleeding, still getting some pain, still sometimes feeling "icky" BUT looks great, is chipper and off enjoying life.

The big news is he said he doesn't want to add rectal tacrolimus or Xeljanz. Xeljanz was a surprise to me because he has never once mentioned that. Instead he wants her to try an over the counter, plant based prebiotic called Gut Rescue. He feels it will help rebalance her micro biome and help with the frequency, urgency and tenesmus. We got home yesterday and started it. I will let you all know how it goes.

While we were away she managed to gain 2 pounds and that was with skipping three nights of lipids. Encouraging but I have learned not to get attached to weight gain with her.

Her and I discussed PEN because I can't wait for the appointment on Friday. If she goes back, she leaves Saturday! She said she would actually prefer drinking two shakes a day (equivalent calorie count to the lipids she is currently getting) to the PICC Line.

I let the GI know this and he changed her dressing change appointment on Friday to a possible PICC Line pull. If you ask me, he probably should've stopped her nightly feeds and had her start drinking the two shakes a day starting yesterday so we would have 4 days of data before the pull but I am just a mom.

I let y'all know how Friday goes.

Her cal pro from last week's infusion posted. >1000. Not surprised. It had only been two weeks since the last one and no change in therapy and she was at the end of Entyvio cycle. I more telling value would be if he pulls labs with cal pro two weeks after her last infusion.
 

Maya142

Moderator
Staff member
Still worried about her going to school, but I'm REALLY glad the PICC line won't be going with her!! I feel like shakes are SO much safer - no need to worry about dressing changes, keeping the area sterile, infections etc. Shakes are much easier. I'm so glad O feels the same way!

That said, I'm concerned about her going back so sick...FCP is very high, still having many BMs, still bleeding, still at a pretty low weight. It seems like she's still really flaring and I'm worried about her going back to school in this shape. If she insists on going, I hope she can take a lighter course load.

Though I really wish she'd consider taking the time to heal so she can go back to school feeling really good next semester - I'm worried if she pushes herself now, she'll end up hospitalized again.

It is interesting he said Xeljanz - it is approved for UC. My husband is on it with no side effects (well, we think he's on it - he's in a clinical trial so it could be the placebo). There is a new warning for the higher UC dose - I think the higher dose puts you at risk for pulmonary embolisms and blood clots. We actually considered pulling out of the trial but then heard that these warnings only apply to the higher UC dose.

However, it still might be worth discussing in more detail - my husband was told during the clinical trial that Xeljanz is actually considered a small molecule JAK inhibitor and not a biologic (in the arthritis world, anyway). He actually is planning to ask the researcher whether it can be added to a biologic and what the likelihood of getting that approved is - he is asking for my younger daughter, not himself.

As for the Gut Rescue probiotic...well, I'm not that hopeful. If Tacro, steroids and high doses of Entyvio are not controlling her Crohn's, I really doubt a probiotic will work.
 
Hey y'all. Big Day here.

To catch you up. Gut Rescue didn't help. Things actually got a tad worse. Yesterday was a terrible day. Pain increased to an almost constant and then she got sharp pains. BM's are soft formed BUT flat ribbon or pencil thin. She feels better after she goes. Still seeing blood with almost every BM but a lot less. Maybe like 2-3 tbsps as opposed to half the hat. But she looks good.

Had her appointment with GI today. Her weight is still up 2.5 pounds from discharge and 10 pounds from her scary low. Still 10 pounds down from her regular weight. GI says:

Her color is better.
She has more muscle tone.
Better weight.
She is more warm.
Not as frail as she was but not great either.

She updated him about pain and thin stools. Frequency about 8-11 a day. Regular appearance of blood.

He said if we pull the PICC Line and she agrees to 2 shakes a day, she could go back to school BUT in his estimation there is a 30-40% chance that she will have to withdraw and come home.

She agreed.

She asked if she could take 18 credits (remember previously he asked her to go back part time). He said "ok if it won't put undue stress on you" She said, "that is what I have done every semester so far". He approved.

She asked if she could swim on club team. He said, "but swimming burns loads of calories". She said, "how about once a week and we see how it goes, if I can maintain weight I will try twice a week". He agreed.

His requirements are daily check ins with mom, weekly with on campus doc and he gets to have open dialogue with campus doc, weekly check ins with him. She agreed.

Then while she had him on the ropes she went in for the kill. She asked him if she could go on a trip with school to Peru over December. He said he wasn't ready to decide that yet. I mentioned the yellow fever vaccine and while it isn't legally required to entire the country, she would be in some areas that will be precariously close to known yellow fever areas. He said that since Entyvio is so gut selective TECHNICALLY you could get live vaccine BUT they are still deciding on what the society recommendation on that will be so we have to really wait to see A) how she is doing and B) what the vaccine advice will be and C) advice from a travel doc. So she will apply for the trip and we will take it from there.

She is stopping Gut Rescue. She is the first patient he has had that hasn't done well on it. Go figure.

Decreasing prednisone to 15 mgs. He said under 20 you are not steroid dependent, meaning the steroids are't controlling the disease entirely so we will see what the disease response is.

I am not going with her. A few reasons not the least of which is she doesn't want me to go. But also because I really don't think she will tank the first week there (I know she has in the past but she wasn't this good). We have to pull off the band aid at some point.

It is unsettling to say the least. I want to trust that she will self report but......

She is getting My Fitness Pal and will track food there (she is still on CDED).

She is getting a symptom tracker app and will track BM's etc there.

But she has to actually use them and report and not forget and tell the truth and.......

We can't get tuition insurance so this is a huge monetary gamble. Tuition insurance will cover pre existing conditions but only if there hasn't been a therapy change in the last 60 days. The hospitalization counts as a therapy change and makes her uninsurable. LOL - the guy on the phone said and I quote, "If she was in the hospital for 33 days and only got out 6 weeks ago why is she going back to school". Maybe he should be her doc?

So there you have it! She will come home mid October for an appointment with GI. She is mad because for her fall break (4 day weekend) she usually goes south to the beach but come on! When is enough enough. You got basically everything you wanted...you can come home in October!
 

my little penguin

Moderator
Staff member
Some folks watch horror films
We have to watch our “kids” be in the driver seat
So not looking forward to “adult” the early years

I think lots of wine is in your future
Is her round trip ticket home open ended .
Not surprised
But reality is a while other thing
 

Maya142

Moderator
Staff member
How many credits is considered full-time, CIC? 18 sounds like a LOT to me. How many classes is that? How many classes do students typically take at her school? I sincerely hope she is not planning to take more than 4 classes...at most schools that is considered full-time.

In terms of withdrawing, we have some experience ;) - both my girls have had to withdraw. In both cases, the schools had a policy saying tuition refund was prorated - the earlier they withdrew, the more money we got back. After my older daughter had withdrawn once, we got tuition insurance. Thankfully, she did not have to withdraw again in college since we were able to get her disease under control.

When my younger one went to college, we automatically got tuition insurance because she was in much worse shape than her older sister when she started. As you know, she has withdrawn more than once due to her health - to have surgery, during a terrible flare etc. But she knows that she has to make the decision early in the semester - if she withdraws before the course drop date (which is in early October and she typically starts school around Sept. 5th), the withdrawal does not show up on her transcript. If she withdraws after that date, her transcript would show the courses she was taking and instead of a grade, she would have a W for each course. And it would say she withdrew during the Fall 2018 semester, for example.

She obviously does not want anything on her transcript if she can help it, and we don't want to lose an entire semester's tuition, so if she goes to school in bad shape (as she did last semester) and realizes she needs to withdraw, she does it as soon as possible.

However, for emergencies or if her disease just flares badly late in the semester, of course she could still withdraw. Health comes before tuition - we always tell her that. But that is where the tuition insurance steps in - if she were to withdraw half way through the semester, it ensures we'd get more money back than if we had just relied on the school's policy.

To be honest, I really do not think she is well enough to go back to school. I think she could really jeopardize her recovery, which has been slow anyway. She's still really flaring and it's very possible it will get worse when she reduces her steroid dose to 15 mg. It worries me that on 20 mg she currently still has many BMs, still has diarrhea half the time and is still bleeding. We have no idea at all if Entyvio is working and considering her symptoms even on steroids, it doesn't seem to be working yet.

Pushing herself to go back to school is not going to help matters. I wish she would consider a semester off and actually let herself recover. I agree that if she tanks, I doubt it will be the first week.

I wish her GI would tell her that in his opinion he doesn't think she should go. She is clearly not well enough. I find it insane that she manages to convince him every time - she's underweight and bleeding and he okays school, a full course-load AND swimming?! Has he not learned his lesson - he let her go in the summer, she ended up septic and was hospitalized multiple times...and she's still quite sick and on steroids and yet he lets her go AGAIN?!
 
She will be taking 6 classes. 18 credits. I am concerned. I have asked her to consider only 4 classes = 12 credits and her response was, "what's the point of going back then?". STUBBORN and DETERMINED!

I am rethinking the first week tanking comment. We are changing a lot all at once. Pull PICC Line, go down in steroids and go back to school. The past two times she tanked at the week mark or shortly after. ARGH! To quote THE CLASH, "Should I stay or Should I Go?"
 

Maya142

Moderator
Staff member
6 classes?! 4 classes is standard!! She shouldn't be taking more than 12 credits...Isn't it better to take 12 credits and stay in school than to take 18 credits, push too hard, tank and end up hospitalized and have to withdraw?!

I know she is trying to do two majors and a minor, but she could make up the missed classes next summer when she is WELL!

I am rethinking the first week tanking comment. We are changing a lot all at once. Pull PICC Line, go down in steroids and go back to school. The past two times she tanked at the week mark or shortly after. ARGH! To quote THE CLASH, "Should I stay or Should I Go?"
That's a good point - you're going down on Pred, pulling the PICC line and increasing the physical stress on her body (traveling, doing much more activity than she is used to) all at once. Plus, with drinking shakes, she has to make sure she is also eating enough, otherwise the shakes stop counting as extra calories!

Would she let you go with her?
 
Well she really doesn't want me to go and wants so desperately to prove she "can do it".

Here is my new plan....it will take a while to tank. First time it was a week to the day. Second time it was 10 days. So I will let her go down and figure out her plan/schedule etc and then in a week or two I will go down and "visit" her. By then, she will have worked out the kinks on her own and I will be better able to assess if her plan is working.
 
I'm away at a friend's cottage and am catching up now. OMG! That is a big course load. I too would think not going back to school at all and starting up again when her health is much better would be a better idea, but I know you can't convince her, and she obviously can sell manure to a farmer if she can convince her GI to let her go back with a bigger than average course load and then swim too.

So the plan is she goes back to school, and during that first week, you drink as much as you possibly can because you won't be able to once you go check on her. Big hugs.
 
So the plan is she goes back to school, and during that first week, you drink as much as you possibly can because you won't be able to once you go check on her. Big hugs.
I LIKE your plan but there is faulty logic. Who says I can't drink when I go down there? Do you guys not have Uber up in Canada? We could Uber (ride service) to the hospital!
 

Maya142

Moderator
Staff member
That's what i was thinking too - she won't tank immediately but might in a week or two, depending on how fast her GI wants to taper her steroids. Even the switch from 20 15 might really worsen her symptoms.

She is one brave and determined kid!! Also incredibly STUBBORN - she reminds me of my incredibly stubborn girl 😉.

Also meant to ask - has the doc considered appealing for the suppositories? If he can get 600 mg of Entyvio approved with NO research supporting it, I'm SURE that with some persistence he can get suppositories approved. We have done it many times for meds - we follow up with insurance daily or every few days until all the paperwork has been sent and we also get the doc to mark it as urgent and stay in touch wth whoever is in-charge of getting prior authorization or a waiver if it's not on the formulary.

Generally we are successful. Sometimes it takes quite a while, but usually we're able to get whatever approved - we just did it for a higher dose of Zofran for example. It required two appeals and a peer to peer review. Based on what you said, it sounds like if it's not on the formulary, so you may need to get a waiver. We did this recently for a particular pain med for M's surgery and were able to get it done within 2 days. Your doctor has to fill out a form, if I'm remembering correctly, but besides that it's quite easy.

Just thought they might help her while she transitions to school. I know you mentioned that even during trip to the mall, she was needed to go to the restroom a zillion times and that she was totally miserable.

It's only a band-aid fix, but at this point she needs even that.
 

Maya142

Moderator
Staff member
Well she really doesn't want me to go and wants so desperately to prove she "can do it".
This has been one of the hardest things for M - seeing her friends become independent. They just graduated from college and if she hadn't taken so much time off for medical stuff, she would've graduated this year too. It hard to watch them do such amazing things. Some are going to grad school or med school, some are traveling all over the world (she has one friend in Rwanda right now, another working in Hong Kong, another who is backpacking in Europe and then goes to Asia). Others are beginning new jobs. They're all starting to move into their own apartments and out of their parents' homes.

Meanwhile M feels like her life is stuck in the same place, while her friends are moving forward. And so she says she feels "behind" 😥.

It really bothers her but she's working on it with her psychologist. It's so, so hard to accept, especially at this age when most of your friends feel and act invincible 😭.
 
Last edited:
I really shouldn’t give advice because I’m sort of in a sh%#show myself with a young “adult”. I know our power over them is limited especially when dr is on their side.

But 1.5x class load is ridiculous for a sick person. If you pay for her school can you say you only pay for regular load?

I know we also need to consider her mental health and how not listening to her wishes might impact her given all she has been through. Does she have a counselor that might be open to seeding some messages you provide about playing long game etc?

Big circular argument. I don’t know what to do.
 

my little penguin

Moderator
Staff member
So my ONLY advice
Can you get her /you to a psychologist that handles chronic illness ?
Because often what we as parents “think” is going to help the kiddo navigate /learn etc... this crazy illness is the exact opposite of what may work for that particular “adult-child” in order to do the right thing medically
A psychologist can be a good impartial (as in sound person aka not mom ) she may listen too


And they can help you help her
 
All great posts!

Maya - yes, we appealed the suppository decision and it was denied again. I know there are other levels but at this point he is considering tacro enemas.

Optimistic - I like the way you think! I am paying and I will only pay for this many credits. Think that is what we will say...only problem is I think full time tuition is from 12-18 credits so it may not make sense mathematically but she is a health science major so here's hoping;)

MLP - Great point! This makes me soooo mad! I had asked for a psych consult while inpatient. The clinic psych came by and she loved her but she couldn't see her while inpatient. She said when you get out, I will be here. Her GI said the doc gave him a good plan but then no one presented it to her and she seemed to not need it. It would have been great if we had started treatment eh? It would have helped with this decision! Definitely would have helped me with dealing with her and like you said in how I should present/handle things. DANG! Hindsight is 20/20.
 

Maya142

Moderator
Staff member
But 1.5x class load is ridiculous for a sick person. If you pay for her school can you say you only pay for regular load?

I know we also need to consider her mental health and how not listening to her wishes might impact her given all she has been through. Does she have a counselor that might be open to seeding some messages you provide about playing long game etc?
Honestly, I agree with Optimistic. You may need to tell her you will not let her go back unless she agrees to your terms. I don't know how else to get her to understand how sick she is - that she could lose her colon, that she could become septic etc.

I'm worried she is not thinking about the strain on her body just doing regular things - is she well enough to cook for herself? To go grocery shopping? Clean her apartment? Go to class and to office hours? It sounds like she is struggling at home and at home she doesn't have to do all that stuff. She's leaving today, right?

So I guess we'll find out 😬.

A psych is a great idea - I wish she would see one at school. But I know she is in the middle of nowhere and adding one more thing might be too exhausting, though I think it would really help her. Does the health center at school have counselors?
 
What a hard situation!

When we see someone choosing a path that we think is wrong or dangerous, we usually try to convince the person to change. However, the more we work to convince them, the more they may give reasons to support their position. I am guessing that she has some concerns about going to college and taking so many classes but she has put her focus on convincing everyone that her plan will work.

You could see if she'd be willing to do a decisional balance exercise where she tells you and writes down all the pros and cons of taking so many credits vs taking a lighter load ( or of going to school vs taking a semester off).
You can make a grid like this but I would change the writing from pursuing the opportunity to "taking 18 credits" vs "taking 12 credits or fewer credits" (or going to college this semester vs staying home for a semester.) I would start with the pros of her plan, so she can voice all the pros of her plan without anyone commenting. Then I'd move on to cons of her plan. If she says a con of doing so many credits is that it might be stressful, you could ask her if she can think of any more cons, and then ask her to write them down. Then, you can ask her what are the consequences of each con. She should write everything down (example: risk of flaring -->possibly having to withdraw ---> losing $$, flaring -->weight loss --> needing a picc line or NG tube or lots of icky supplements).

In this exercise, it's very important that it is she who is thinking of the pros and the cons, not you, and that you don't express your opinion (though I'm guessing she knows it). If she really can't think of any cons to her plan, you could ask her to think about social, health, financial, academic consequences but she's the one who decides the pros and cons and writes them down. When she writes out all her pros and cons, her decision might be different or it may be the same but in any case, she might be more aware of all of the issues involved.

Alternatively (if she doesn't do the exercise above), you could ask her, "Why might it be a good idea to take a lighter load?" She might say, there are no reasons but she might think of one or two. It is much for powerful for her to think of reasons for the lighter load than for her to hear someone else's reasons.

I'm wondering if you think she would make the same decision if she were paying, given the risk that she may need to withdraw. If you end up paying and she withdraws, can you afford to pay for an extra semester?
 
Being mathematical and analytical I LOVE that idea! Clearly you didn't like my plan of lots of alcohol 😂

We actually used it for her decision of which school to go to when she applied to college. Our only problem is I was banking on the doc saying stay home so wasn't prepared and she left this morning! ARGH! She is so stubborn and laser focused though that I really don't think she would come up with many cons. She might think differently of the financial aspect if she were paying but she knows we happen to be able to afford the extra semester so not likely it will change her mind. Plus my girls are such daddy's little princesses and they know he will not say no to anything.

Classes don't start until Monday so I am going to have her do this exercise with the 6th class thing. Again, the only problem with that is the 6th class is the last class for her French minor and it isn't offered often. She is in her junior year and scared they won't offer it in spring or her senior year. maybe she can reach out to the French chair and ask and that may help. The other 5 are required to stay in her other majors. Yeah, I asked her to consider stepping down to one major. Her argument for that was the second major is her safety net should she not get into a grad program for her first. The kid has an argument for everything. Seriously should forget speech pathology and go into law or politics!

She seemed pretty level headed when she left. She was up through the night going to the bathroom and her pencil thin stools were concerning her and she said she wouldn't let it get much worse without a call to the GI. I think I trust that she won't push too hard. She said she just HAS to try. It would kill her if she stayed home laying around with nothing to do. Plus she has no friends out here because we moved a week before she went to college. One of her arguments is that she will be happier back at school and that positive energy will help her heal:rolleyes:

I feel a little better now that she is gone and I will go down in a couple of weeks. Also, good that she is checking in with the med clinic weekly and they are sending updates to her GI. Things shouldn't go too far astray. If the steroid taper causes issues it would have caused them there or at home. Just would be easier if she were home.

O.K. I am rambling now and honesty I haven't been drinking!
 

Tesscorm

Moderator
Staff member
Just lots of wishes that all runs smoothly for her at school and no more obstacles for her!! (But glad you'll be there in a couple of weeks to see how she's really doing! )

:D
 
Top