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Heard from Doc today

my little penguin

Moderator
Staff member
Slow and steady wins the race
But I hear ya
Hate the newer slower drugs
They work but take so long to see benefits
 

Maya142

Moderator
Staff member
Great to hear she is improving slowly!! I wish her GI would give her Entyvio at the higher dose, just for a few more times, to get her into remission. Seems like it's wearing off before it is due and that is on steroids.
How is she managing at school? With her 6 classes and swimming? She is one amazing kid!
 
Thanks Maya!

She is doing great. She REALLY thrives at school and NEEDED to go back. Her 6 classes seem to be going well as is swimming (still only once a week).

But in true O fashion she has decided to apply to be a volunteer with a group at school who mentors young adults with special needs. She was chosen. They attend classes with them, help them with their studies and go to work with them to help with training and be a liaison between employer and the program at school etc. YES! I asked her how on earth she thought the GI asking her to take 4 classes and go home and rest translated to all of this activity. Her response, "well I decided not to apply to go to Peru over December break". Makes perfect sense now! Thanks for explaining. o_O

LOL - she also applied to be some sort of coffee ambassador which basically means being a social media "influencer" for the product. My response...."But you don't even drink coffee!". She laughed and said, "yeah, I didn't think they would pick me. I will drop that one". See? Now she will have sooooo much more time.

These kids! And she is supposedly old enough and mature enough to make her own medical decisions?!
 
CIC, your daughter is really lazy and I think you should have a talk with her. :) LOL. I don't think I have ever heard of a more motivated young adult. She doesn't let anything stop her.
 

Maya142

Moderator
Staff member
But in true O fashion she has decided to apply to be a volunteer with a group at school who mentors young adults with special needs. She was chosen. They attend classes with them, help them with their studies and go to work with them to help with training and be a liaison between employer and the program at school etc. YES! I asked her how on earth she thought the GI asking her to take 4 classes and go home and rest translated to all of this activity. Her response, "well I decided not to apply to go to Peru over December break". Makes perfect sense now! Thanks for explaining
Oh my!! She is really something. Have to say she makes me laugh 😂. She's really got her GI wrapped around her little finger - he says take a reduced course load and no swimming, and she says well, how about 6 classes and swimming just twice a week and he says ok!

I think she should run for President - nothing can stop this kid!
 
O's cal pro results posted and it is down to 440! WOOHOO! Lowest it has been since January. Entyvio MUST be working! We must just have to wait a little bit for the symptoms to all resolve (still going 8 times a day and half the time liquid only a handful of time visible blood).

Now the one caveat is that she did have a cal pro of 400 after her last hospitalization and before the big 600mg dose and it went up to >1000 two weeks after the 600mg dose so I guess we should just be "cautiously optimistic". BUT back then she also had a CRP of 3.9. So I am taking lowered CRP AND Cal Pro AND normal H&H as all good signs and celebrating!
 
I debated posting this but I am going to go ahead and share in the interest of sharing what I have learned.

I was at the GI with my other daughter today. Her appointment was completed and he asked to speak with me alone about O.

He said because O wasn't there and because I seem to be very up on the research and industry trends he had really wanted to share with me what was going on with O this past summer.

He gave me articles and papers etc to read over but highlighted that standard of care for someone in O's situation (extremely malnourished with severe disease activity) this summer was basically IV steroids for three days and if no improvement move to surgery which in her case would have been colectomy with ileostomy.

O did not improve the first week and the attending physicians were all ready to move to surgery but he aggressively pushed to have other therapies tried first (antibiotics). Then the second admit and IV steroids again with no improvement for days. The team once again wanted to move to surgery and he very conservatively and aggressively talked them out of it until we tried to get the increased dose of Entyvio.

He said he knows I kept bringing up EEN over TPN but again standard of care in her situation was to provide TPN. TPN is used if severely malnourished and with severe disease burden. But also if she couldn't get at least 60% of her caloric goal via EEN. Further, they were anticipating a move to surgery in which case she would be NPO for at least 7 days which means no EEN as that uses the GI tract.

I asked why then did they allow food and it is his and the teams view that the food passing through the diseased colon while maybe making her a little uncomfortable was not risking further disease complications etc.. We can agree or disagree with this but the whole team, surgeon, registered dietician, 5 or 6 attending and our GI were all of this opinion. I am just a mom. I have a patient load of 2. I have only found myself in that predicament twice and both times it was TPN with food if she wanted. They have a patient load of hundreds and way more years experience.

I guess I am just sharing this so we all know a little more in case you find yourselves in the same situation. But also to stress that a lot more is going on behind the scenes than we realize. Sometimes it is good for us to know. Other times maybe not so much. Sometimes it is best that as a mom we concentrate on things like crawling into bed with them and watching Bachelorette (it was grueling), braiding hair, praying and cheering them on.

Do I still question, sure but in the long run I have to say that I do believe they all acted ethically and responsibly. Plus look at O now! She still has her colon, she is back at school and we are on the upswing. The GI said we still have to be very conservative and she isn't out of the woods yet but we are a lot further away from where we were.

Yeah, this knocked me for a bit of a loop because I guess I really didn't understand how severe she really was but I liked it better that way;)
 

my little penguin

Moderator
Staff member
Lots of hugs your way
Sometimes when the docs truly explain after the fact (when the mom brain is not in survival mode )
Then things make more sense

Good point that each of us reads papers and studies
By none of us are doctors with many years of training

Glad she is moving forward
 
Thanks MLP! That means a lot to me! I know you guys were all there with me in mommy survival mode! It never ceases to amaze me how much we could all care for kids and parents who we have never even met let alone who only have code names;)
 
Yes, big hugs to you and O. I'm glad your doctor shared his thinking with you, and thanks for sharing it with us too. I think you're not giving yourself enough credit, though. For 2+ years as O was getting worse, you kept trying to get her doctor to look past the IBS diagnosis, and he wouldn't even do any imaging. Sometimes a mother's (or father's) intuition is right on! Part of the problem is probably that O is so tough--he probably didn't believe that her symptoms were really as bad as they were given her lack of complaints. But hopefully now he knows to take her symptoms more seriously.
 
You are soooo right PDX! EVERY doctor kept saying that...she looks so much better than the numbers and what we see in the toilet. How is she even standing?!

I think he did learn his lesson because this week's update was basically:

weight stable
7-8 BM's a day
about one a day with blood
waking half the time
can I go down on prednisone now

His response was basically, you are being such a trooper and while things are better we have to be very conservative given what happened this summer. Labs and symptoms are encouraging but you are not out of the woods. Next week if there is no visible blood then we may be able to wean down to 10mg (she is on 15 still).

Today he asked me if she was mad at him. I said not mad, just bummed. Her cheeks are starting to really puff out and she is growing hair everywhere! He looked like he wanted go back on his decision but when he saw her log for today and saw blood he said, "I just can't. Not with blood. Not with her."
 
Update:

O gained almost 2.5 pounds!

Other than that, not much has changed.

Average Frequency - 8-9 times a day
Bleeding - 15-20% of the time
Night waking - half the time

GI has decided that even though he said he didn't want to taper steroids if there was still visible blood, that we should try to push the envelope and go down 5mg to 10mg daily.

Hopefully, this will give us some indication of whether or not Entyvio is able to handle things and if she will be able to get off the steroids completely before the end of the year.

It's been 23.5 weeks. This is getting old.
 
Great about the weight gain, although the other parts of the report aren't moving much. We appreciate your updates. I am always wondering after each Wednesday, what is going on with O.
 

Tesscorm

Moderator
Staff member
How do you feel about tapering steroids? I'm thinking with her frequency and the blood, that answers the question as to whether Entyvio is ready to handle things alone. After going through so much over the summer and making the improvements that she has, it would be a huge disappointment for her to start going downhill. :( Although, of course, I understand tapering steroids has to happen at some point but... maybe as she's gaining weight, let the improvements continue a bit more???
 
I don't know what to think about the move down but to be honest she has been on steroids way too much over the past two years. Plus, this stalling at meh is annoying. I am anxious to get rid of the steroids to see if Entyvio can handle things and if not to move on. If it can then great, anxious to get rid of the steroids so my daughter can get her normal cheeks back and stop growing facial hair. She says she looks like a prepubescent boy! But they are controlling her psoriasis nicely;)
 

my little penguin

Moderator
Staff member
Once you go under 10 mg you have to wean very very slowly to reduce the risk of adrenal insufficiency
The adrenal gland needs lots of “pokes” to wake it up again given how long she has been on steroids
We were told 1-2 mg max every 2-4 weeks
Sorry
 
WHAT?!!!! We will miss the my self imposed end of the year deadline at that rate! But we all know how easy going our GI is. How much you wanna bet she is off steroids come Thanksgiving!
 
Another boring update:

Frequency: 9
Weight: down a pound
Blood: once a day
Night wakings: 4 times this week

So the taper didn't cause any problems but she also isn't getting any better. Stalled at mediocre. No further taper this week.

Infusion on 10/8 so she will get labs done 10/7. She flies home and I will get to really see what is going on. GI appointment on the 11th.

She mentioned going to Walmart after class today and I jokingly asked if she was getting party supplies. She said, "no, I am missing a lot of underwear and I have to get paper towels". Wonder where her wear went?! 😂 Sadly, I have my theories.
 
Your daughter is amazing. I still can't believe how much she can endure. Reminds me that our kids are tougher than we think. Glad you will have a chance to see how she is in person.
 
HAPPY FRIYAY! ( I think I will start a thread with that title)

O has gained 3 pounds this past week!

Frequency is down to 7.

Last time she saw blood was Sunday!

Last time she was woken up for a BM was Saturday!

Looks like we are heading for remission!

She is still on 10 mg prednisone. GI says the next drop will be down to 5mg. Sounds aggressive to me but rereading this thread, I am reminded that I am trusting the docs;).

She comes home next Wednesday night...appointment with GI Friday.

I am officially not using the "S" word again...and think we are flirting with the "R" word.
 

Maya142

Moderator
Staff member
What wonderful news!!! Is she getting close to her original weight now, or does she have quite a bit to gain? I'm so glad things are better. She deserves a LONG stay in R-land 🎈 🎉🥳🤩!
 
She has 4 more pounds to go to get to what she and I consider her original weight. She had been 8 pounds heavier for a short while. Unfortunately that weight is in her chart so he would really like her to get to that weight but honestly 4 more pounds and she will be where she was for a very long time before and after that high weight.
 
Big update.

It had looked like O was getting even better with a stop in bleeding and frequency way down. But after a few days of that frequency went back up to 12 with bleeding and night waking. Her and I think it was because she was 4 days late for her infusion. GI doesn't agree.

Blood labs posted and they are just weird. H&H are still normal but fell a lot. Some kidney and liver lab issues. But the big one is blood glucose. It was very high.

Weight stable.

Cal pro 700.

She came home and looks good.

Had her appointment today.

First issue is he feels she is now diabetic. Tested her blood glucose in office and still high. So he wants her off steroids as that is the probable cause.

She has severe refractory disease.

He feels that the issue now is her ileum. She has always had disease activity there but it hasn't been her problem area. But right now he thinks given the vast improvement in her colonic symptoms that the ileum is the problem now. He examined her and sure enough there was pain and guarding when he got to the ileum and not so much when he was at the left side of the colon. He thinks the increase in cal pro is due to ileal disease. Entyvio is good for the colon but not necessarily the ileum. Stelara is good for the ileum but not the colon. Most success getting two biologics approved is when they are being prescribed for two different conditions. We could get Stelara for her psoriasis but that dose won't be high enough and the derm can't get the IBD dose approved.

Looking at getting her into clinical trial for Entyvio 600mg dose every 4 weeks. Also, going to try to get insurance approval for three months of 600 mg. The theory is the increased dose will help the ileum.

Meanwhile, she needs to come off steroids but Entyvio isn't holding her disease adequately. Tacro doesn't work. So we are going to start Entocort. 10 days into Entocort she can drop down to 5 mg of prednisone. He doesn't want her to drop prednisone before the Entocort is at a point where it could take over because she is teetering.

He wants to treat the frequency with 10 days of Xifaxan for bacterial overgrowth. He feels that might be the issue there rather than colonic disease activity. She literally went to the bathroom 4 times while we were there.

Entocort hasn't worked for her in the past but that was years ago. We discussed next steps should it not work this time and if the increase in Entyvio doesn't work or if insurance won't approve it for long term.

EEN has worked in the past. He feels as severe and refractory as she is, any drug therapy she is on is going to need ongoing support. We shouldn't keep putting her on steroids. They discussed getting a G tube so they can get her into and keep er in remission with periodic intervals of EEN. She said she would probably be o.k. with that.

He wanted to see her at Thanksgiving but of course we are back east visiting family. So when she gets home in December she will see him and possibly schedule the G tube placement.
 
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I've been rooting for O and I'm sorry to hear that she's having more Crohn's symptoms and now elevated blood sugars and just when she seemed to be really improving!

I'm heartened that she seems to have a GI who appreciates how severe her illness is and is really working to find and get her treatments that can get her Crohn's under control. From the info above, it sounds like he is a good communicator and that he was willing to talk about what if scenarios, which as a parent, I personally like.

I'm curious about her elevated blood sugar and the diagnosis of diabetes (which is fasting bs >=126 or 2hour after a meal or random BS >=200). How high was her blood sugar and has she ever had a high blood sugar when on high(er) dose steroids? Is there a plan to monitor and/or treat her blood sugars now while still on prednisone?

I am sending positive healing thoughts O's way!
 
I am gutted to read this. My only idea is, she started the cd diet at home and couldn’t keep it up at school(I think I read a while ago), it sounds like a reasonably diabetes friendly diet in terms of low sugary foods, didn’t know if worth trying again if she’s home? Along with a bit of bone broth? She’s done so well she must be utterly p***d off. Praying for you all xxx
 

Tesscorm

Moderator
Staff member
Just so disappointed for her... as xmdmom said, thank God her GI is on top of it but I really feel sorry that the improvements didn't continue. Lots of prayers and good wishes her way... I wish I could do more. :(
 

Maya142

Moderator
Staff member
I'm so so sorry to hear that O has gotten worse and you have gotten bad news. We have heard the same things about my daughter's arthritis - very severe disease, one of few in the country...it's absolutely heart-breaking to hear, even if you really knew it (as a mom) all along. It's terrifying especially to hear "we don't know what to do with her" from some of the best hospitals in the country. It's scary every single day as she runs out of options. I'm heartbroken to hear the same about O 😭.

I would definitely encourage you to have her see an endocrinologist - GI's don't know enough about the things she might be facing - steroid induced diabetes or adrenal insufficiency. Our GI had a plan to wean my daughter off steroids - she had been on and off steroids for 6 years and had been on them for 6-7 months that time. But once we saw the endocrinologist, that plan changed quickly - the endocrinologist wanted her to taper MUCH more slowly and wanted blood work several weeks after she was off steroids to check ACTH and cortisol and blood sugar.

I would push to see an endocrinologist while she is at home. We were were told the physiologic dose of steroids is about 4 mg Prednisone, if I'm remembering correctly, so our endocrinologist wanted us to wean much slower once we got close to that point. Given O has had symptoms of it before, it's important that she's careful. We had several scary ER trips due to adrenal insufficiency.

As for two biologics, your GI is correct that it's easiest to get them approved if they're for different things. But given the severity of her psoriasis, couldn't the dermatologist make a case for a higher dose of Stelara? I know it would not be the same as the IBD dose, but I bet she could get O 90 mg every 12 weeks. It's not the normal dose for IBD (90 mg every 8 weeks) but as a second biologic, maybe that would be enough.

Also, how can the doc possibly know where her disease is? If she's bleeding and having diarrhea 12x per day, it could easily still be her colon. I'm not saying that she doesn't have ileal disease - she probably does. But I don't think you can tell based solely on symptoms or FCP. Imaging would tell you - an MRE or a scope. I know she's not home for long right now, but what about around Thanksgiving?
 
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Maya142

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Staff member
Oh and wanted to add - M is more than happy to answer any G tube questions O might have!! It's a minor surgery - she'll probably be inpatient one night. But just as a warning - some doctors will not place a button type tube at first. They make you deal with a long one (which M HATED) for 4-6 weeks till the tract has healed. In M's case, hers was a GJ tube and she had such poor motility that it moved from her jejunum to her duodenum the first night after surgery - we were told that's very rare 😑. So they wanted to replace it sooner than they had planned, so she only had to live with the long uncomfortable tube for two weeks or so. After that, they switched it for a button and re-positioned it. But they had planned on her having the long tube for 6 weeks.

M went to school - her first semester of college - two weeks after the surgery. So she'd probably be ok having the surgery during a short break and going back to school soon after, but because of the long tube (which was thick and stuck straight out, so not easily hidden under clothes), she may want to do it during winter break so she has time to get it switched out for a button before she goes back to school. The button is easy to maintain - you change it once every 3 months. As long as it's a G tube and not a GJ, it can be done at home. M does hers at home sometimes - she learned how to do it on YouTube LOL ;).

Also, she was not allowed to swim until cleared by the surgeon - 6 weeks. I know O won't be happy to hear that.

Lastly, Feeding Tube Awareness has a great website with all sorts of info, including a parents' guide.

And on another note - the thing that helped M deal with all of this - the tubes, the surgeries, the missed semesters of school, hearing again and again she had severe disease and no one knew how to help, was a psychologist. The extra support might help O, if you can keep her home long enough to see one!!
 
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You guys are the best! We definitely feel the love and support. I will try to answer everything in one post but reserve the right to forget something and add a second post;)

Diabetes? Well, this guy seems to make it a habit of sorta diagnosing things. Such as years ago with adrenal insufficiency. He said he thought she was experiencing it and slowed the taper down and she straightened right out. However, no referral. Same with this time. He said, "she is probably experiencing diabetes due to the steroid so lets get her off them as soon as possible".

Xmdmom: She has had high glucose at other levels of prednisone. Mostly when she was inpatient and on TPN. They tested her frequently and adjusted her TPN accordingly. Then, when she went back to school off TPN, she was still getting high blood sugars when she was tested each week at the school health center (during her nurse visits for vitals...blood sugar was one of the things they tested). He said she tends to go up to the 170's to low 200's at the two hour or more after meal times (at the nurse visit). Then we taper steroids and she goes down to 150's. But after some time at that steroid dose she goes right back up. So at 10mg's she got a fasting blood sugar of 167 on Monday and 178 in the office Friday. I am not sure what the post meal time value is now as she skipped the last nurse vitals visit because of the Entyvio snafu. She needed to have infusion the day she normally would have had vitals. He did ask her to add a second nurse visit a week while on prednisone and entocort. He thinks we can go back down to one once we reduce her prednisone down to 5mg's. So not exactly monitoring blood sugar or doing anything proactive about it other than trying to get her off prednisone.

You are right. He is a great communicator. Listens and takes his time with our questions also. Includes her and I in all decisions, asking how we feel about his suggestions etc. He is also really good at tweaking his reccomendations to help O feel better about the plan etc.

I do have confidence in him as I know now that the inpatient team was really wanting to take her colon out but he fought hard to give things time and try a few different things. So he is definitely very knowledgable about IBD and I know he consults he physician associates about her care even if we are not getting referrals. I want to give him the benefit of the doubt and think that he is not referring her out because she is never around much but sometimes I wish he would.

As to disease location, I don't think he can be really sure about where her disease is active right now without looking (imaging, scope etc). However, he has beneath this long enough and his explanation made sense. Her colonic symptoms are sooooo much better. She is literally only seeing blood once a day now where as before she was having BM's that were all blood and I mean filling half a hat with blood. I disagree with him that the recent uptick is not related to delayed Entyvio as today she has only been 6 times so far. That is quite an improvement over where she was earlier this week. Then there was the pain when he palpated her ileum.

What I didn't mention about the "bacteria" comment is that what he is really saying is he feels her frequency is IBS. The drug he prescribed is an IBS-D drug and in all their literature they say IBS-D caused by bacterial overload. The thing that made him go toward "bacteria" being an issue is that she said the frequency fluctuates. She could go 12 times a day and then have a good 4 or 5 BM day. He said if it were her colonic disease she tends to just get worse and worse. So I guess we treat this as IBS-D and if she gets better great. If not, well then we know. He won't be happy until we put this IBS thing to bed one way or another. The only thing that concerns me is that we read about the drug and if you take it and you don't have IBS-D then it could make you a lot worse and cause pain and other issues which she doesn't have right now. So I am leery. Insurance has not approved it yet anyway as it is $2,500 for a 10 day supply and well it is for IBS and I don't think insurance companies take IBS seriously.

Delta_hippo - good point on the diet. I don't think dropping it made her Crohn's worse but you are probably right that her "college" diet isn't helping her blood sugars. I will see if I can talk to her about her diet.

Maya - here is the thing about O....she is not upset in the least. She sat there listening and was more like, "wow! sucks for you to be my doctor. Good luck figuring this out. Can I go now?". IDK if it an O thing or a teenager/invincible thing or if she just has that much trust that he will figure something out. I was miffed with her that she would jump to G tube and not consider drinking the formula or even the NG tube. I said, "do you realize that you are almost out of drug options right now". Her reply, "yeah but he always says there isn't anything left to do and he always finds something". So she really does think that he will figure something out. I told her that this is it. If Entocort doesn't work or if the 600mg of Entyvio either doesn't work or doesn't get approved she HAS to do EEN. She basically said, "yeah, I know. Can I go away for spring break". It is not so much denial as much as "I will worry about that when the time comes". Stinks for me because I am a planner and can decision tree this thing out like there is no tomorrow. Poor GI, has to give me enough info but not overwhelm O with details she isn't interested in at the moment.

We also happen to have a very strong faith. O is especially active in her faith community at school. So there is a fair amount of "God's plan" and "he uses all things for good" to her thinking.

On the two biologics, he already spoke with the term and she tried to get a higher dose or more frequent or whatever of Stelara for O's psoriasis as O has super severe psoriasis (and sadly T is following in her footsteps) but it was denied. Not sure they have appealed.
 

Maya142

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Staff member
We appealed for months for two biologics - took 9 months last time!! But the first time she was on two biologics, we were adding Entyvio to an injectable arthritis biologic. And expected a fight. But it was approved quite quickly because Entyvio went through the medical side of things since it was IV and administered in a hospital and the injectable biologic went through prescription side.

Another option would an anti-TNF. You know how we are getting Cimzia now. That or Humira would work for her small bowel. I don't think they'd be enough to hold her without Entyvio since Remicade was failing but perhaps with it, one of them would work?

There are lots of ways to appeal. It sounds like currently the plan is 600 mg of Entyvio, which I think is definitely worth a try. But if that doesn't work, don't rule out two biologics. With a persistent doctor or doctors, it's possible. But expect that you will have to appeal.

I'm glad to hear O is handling all this well. I'm glad she still has faith that they will find something. One of the things M's psychologist has taught her (or is trying to teach her!) is to take one day at a time. I think O is great at that - sometimes teenage invincible mindset pays off, right 😉 ?!

I do think EEN is a great alternative to steroids and the G tube is easier than an NG tube, but I am surprised he would jump to a G tube without even trying an NG tube. Most GIs insist on trying the NG tube to see if the kiddo can tolerate feeds into their stomach (either bolus or continuous) or if they cannot - if there's a motility issue for example. It's really easy to insert even daily - given how laid back O is, I'm surprised she's so against it. Has she said why she won't try it?

What I didn't mention about the "bacteria" comment is that what he is really saying is he feels her frequency is IBS. The drug he prescribed is an IBS-D drug and in all their literature they say IBS-D caused by bacterial overload. The thing that made him go toward "bacteria" being an issue is that she said the frequency fluctuates. She could go 12 times a day and then have a good 4 or 5 BM day. He said if it were her colonic disease she tends to just get worse and worse. So I guess we treat this as IBS-D and if she gets better great. If not, well then we know. He won't be happy until we put this IBS thing to bed one way or another. The only thing that concerns me is that we read about the drug and if you take it and you don't have IBS-D then it could make you a lot worse and cause pain and other issues which she doesn't have right now. So I am leery. Insurance has not approved it yet anyway as it is $2,500 for a 10 day supply and well it is for IBS and I don't think insurance companies take IBS seriously.
M was actually just on this drug for post-infectious IBS (due to months of C.Diff). What we were told is that the pharmaceutical company has a contract with one particular specialty pharmacy to help get it approved for patients. They did all the appealing for us. Honestly, for us that was a pretty easy drug to get. We were told it should help with diarrhea.

To be very honest, M had a hard time with it. We tried it once and she was so nauseous that she lasted 4 days. No decrease in diarrhea. Her GI stopped it because of the nausea and but maybe a month or so later, she still had diarrhea and cramping, so we re-tried it. She lasted a week the second time. It did decrease the frequency but not by much and so we stopped it. Over time, the IBS got better by itself. She stopped waking up at night to have BMs and the cramping went away and then finally the diarrhea decreased. It hasn't fully gone away - she does have diarrhea - not always, but often. But it's not 10-15 times per day now. I'd say it's 4-5 times a day now, sometimes formed but mostly loose, which isn't bad and the pain is pretty rare. Her FCP is low so we're not worried it's her IBD.

But her case was very clearly post-infectious since she had C.Diff so long and a poop transplant. So different circumstances compared to O's situation. But I'm REALLY glad her bleeding is MUCH better - I was imagining poop hats full of blood like before!
 
Maya - it is beyond me that O won't even try an ng tube. No clue what so ever what her issue is with it. She just shuts down any talk of it. Drinking to. She just says very emphatically I might add,"I can't". We get in fights any time I try to talk to her about it. If I were insurance I sure wouldn't approve the g tube until she at least tried. She usually is so tough and determined all the time and has done een orally before so why she keeps saying she can't is beyond me. I tried again today and she walked away from me so I guess that is just it. Maybe the GI sized her up and just knew that it was g tube or nothing.

I hadn't realized that M used xifaxan. Nausea seems to be a huge issue with that drug. Idk if O will be able to handle the nausea. This drug is really scary to me. The numbers of people who get worse on it is high. But we have to try it. Just in case her issues are bacterial overload. This potentially could make her frequency so much better. I have read that if it works it could work up to 6 months. Also read that you can take it up to three times a year and that subsequent dosing makes things even better. Fingers crossed!

GI wasvso successful in getting Entyvio approved for double dose and thatbinfusion was $100k retail. So it would surprise me if he couldn't get Stelara and Entyvio approved. I will ask about adding Humia also. Not a bad idea given that would also help her colon.
 

Maya142

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Some kids simply cannot deal with NG tubes and then GIs are sometimes forced to put in G tubes instead. M's psychologist talked to me about it before M had an NG tube placed, but said most teens tolerate NG tubes quite easily. The first few days to a week are hard - I think the first night was hardest for M. But every day it got easier and soon she was inserting it in less than 10 seconds.

However, she absolutely HATED the NJ tube and her GI absolutely refused to put in a GJ tube without her trying the NJ tube. She cried, I cried, her weight dropped to 80 lbs before we got her to agree to it. Then she dealt with it for 3 months - first few weeks were the hardest.

In that case, I wish her GI had allowed a GJ tube earlier. 3 months was absolutely unnecessary but I think she was trying to figure out whether M needed long-term nutrition or whether we just had to get her to a normal weight and then she'd be able to eat. And whether an NJ tube would work for her. There wasn't really any other option though, besides TPN, and to us it was pretty clear M needed it for the long-term, so I don't know why she (her GI I mean) refused the surgery for so long, especially given how much M hated the NJ tube.

In O's case, it's pretty clear she needs it for at least a year, I'd guess - or until she is stable. Since she has been on steroids so much and loses weight so quickly, she does need to be able to do EEN. And a G tube will make that easier, so that might be why your GI is willing to try it.

It also might be that he knows how stubborn O is and knows she will not change her mind about the NG tube 😉!!!

I hadn't realized that M used xifaxan. Nausea seems to be a huge issue with that drug. Idk if O will be able to handle the nausea. This drug is really scary to me. The numbers of people who get worse on it is high. But we have to try it. Just in case her issues are bacterial overload. This potentially could make her frequency so much better. I have read that if it works it could work up to 6 months. Also read that you can take it up to three times a year and that subsequent dosing makes things even better. Fingers crossed!
With M, honestly, she was so nauseous she said she'd much rather deal with the IBS 😬. I don't think you'll have an issue getting it approved - I think the bigger worry is if O will tolerate it. We were not told you could get worse on it - yikes!! We were in fact told that it had very few side effects, which is clearly untrue :rolleyes:. She didn't get worse on it though - she felt worse due to the nausea, but her BMs didn't increase.

I hope it will work for O. You may want to have Zofran on hand, if nausea is common. M definitely needed it. Fingers and toes are crossed for O!!
 
Hello all, I have just joined the forum but in no way I am new to it. I have to admit I have been following the topics here and have been tremendously inspired and have felt such support from all that you all have shared. so I thought it was time for me to give back!

My son S was diagnosed at age 10 six years ago. We started with pentasa, budesonide and stayed with them for 2.5 years. His Crohn’s disease was localized to the terminal ileum. In 2015 during his scopes and a subsequent MRI it was determined that he has thickening and narrowing in the terminal ileum. Next obvious choice was Remicade but unfortunately he had a reaction at his second infusion. Next up was Humaira. He responded well to it and did ok for a year or so. His scans showed continued narrowing and blood work too indicated disease activity. His GI increased the dose. Everything was going well or we thought it was- he wasn’t in remission but the disease activity wasn’t as bad. In August 2018 his labs indicated increased activity and we were talking of switching him over to Stelara. But comes the first week of September and he had severe abdominal pain right around his appendix site as well as his stricture area in his terminal ileum. We rushed him to the ER only to find out he had an abscess right at the stricture. He went through a rough time after that. After two hospitalizations, unsuccessful treatment of the abscess, EEN, failed NG tube, IV nutrition, his doctor mentioned to us the CDED diet. We briefly looked into it (I just got some slides about it not The two published papers) we gave him some fruits and vegetables. My poor baby was so eager to have some real food that he consumed those together and lots of it. Result being he had partial bowel obstruction. Thank god it wasn’t complete. With a third hospital stay of about two weeks we had a plan. We got the PICC line, met with the surgical team, got a date for his surgery (it was end of October then and my ambitious S wanted to finish his finals for his first term of sophomore year before surgery) for right before winter break in December, and we started on Stelara upon clearance from the team that he no longer had an infection.

We got through the month and a half without any hiccups. he was at the best on his nutritional status snd had regained some weight before the surgery. The surgery took place with approx 7 inches removed. The surgeon was happy that the rest of his bowels seemed very healthy.

Unfortunately after surgery as we had hoped his disease might go into remission but it got even more aggressive. His GI brought down his Stelara infusions to 6 weeks introduced 25mg methotrexate but still no response. We did the pill camera endoscopy to see that he had a lot of ulcers and not just at the surgery site but in his upper and middle digestive tract. It was a tough time. Stelara was the last medicine out there. At this point I started looking up CDED again with the help of my cousin who is a physician I got access to the two published papers. And after much begging and convincing S both me and my husband started the diet with S. The CDED suggested with severe cases start with two weeks of complete EEN. We did that with our son and drank just boost. After that I followed the diet. It has a complete list of ingredients that are allowed and the food that are not allowed. We followed that for three weeks at which point S had his labs and his CRP and ESR had come down significantly. He had started gaining weight ( he had lost almost 20 pounds till the date we started the diet) his iron was Low but perhaps because there was much reduced intake of meat and iron rich food. His GI gave five iron infusions, one each week. We continued with the diet for the next three weeks. At the end of six weeks the diet expands a bit but the papers did not have the specific ingredients. I just followed my instincts and stuck with the original only increased the quantity and added lentils and legumes and gluten free bread.

It has been 7 months, S has not only regained those 20 pounds but added more. He has grown by a couple of inches. His Cal Protectin levels are normal and so is everything else is in the normal range. We are back to eight weeks Stelara shots. The repeat pill camera endoscopy shows very very few ulcers. He is scheduled for an MRI this Thursday to visually confirm what the blood work and all other tests are suggesting. I hope and pray given Crohn’s is quite deceptive and sneaky everything comes back ok.

I have completely changed our eating habits. We do not eat out much perhaps once or twice a month. Everything is organic non gmo. Nothing he consumes has a prolonged shelf life no emulsifiers and no preservatives. He is on a dairy free gluten free diet, I would say the basic list remains the same from CDED list of allowed foods. I have switched all recipes to incorporate these changes. I don’t say it’s easy. It’s very very hard but seeing him get better and come from where he was at I would do it all over again. Initially he was very resistant and angry but once he saw how well he was responding to it he is sold to the idea. We are fortunate too to be living where we are, there is increased awareness and a lot can be easily found in terms of grocery and food based on his dietary requirements.

Though I know not everyone is the same and not everyone responds to any given treatment the same way. But please do look into CDED. Like any other treatment it take a little bit time to kick in. And of course for us too it’s just not the diet alone, perhaps Stelara took a while to kick in or maybe it was the combination of both. We are not willing to risk by giving up on either at the moment. But his GI team ended up collaborating with the the team of CDED and wanted my feedback, further questions before they met with that team. It does give me the sense that perhaps diet indeed played a significant role in all of this! Right now I am able to do all this for S I already fear since he heads out to college in less than two years. I do not know how we will manage then. Hopefully by then there would be a lot more awareness, accessibility and perhaps even a cure.

I do hope our kids see a cure very soon for this horrific disease. It is heart wrenching to see one’s child suffer. No parent should ever have to experience this type of suffering. Wishing O and all your wonderful brave children of all you beautiful parents tremendous health.

My apologies for this long a post.
 

my little penguin

Moderator
Staff member
@Cure4Crohns
O was on cded for a while with entivyio it was a few pages back -didn’t work
My kiddo was placed on it as well a few years ago (doc actually gave us the full papers which has the second part of it
No gf stuff is permitted btw (but if your current diet works all the better )
Ds is on Stelara as well
Every 4 weeks
Good luck with the mri
In our experience Stelera takes a full 8 months to be effective for some closer to a year
 
Aww Hi and welcome to the group "officially";).

I am glad you had such success with CDED. I think you are right though. Stelara is known to take a very long time to kick in. So I do agree with your theory that the meds along with the diet helped your son along.

We have also done exhaustive research on diet. We have been guided by dietitians, functional medicine docs and such. I also think there is definitely a diet component to Crohn's as it relates to it's affects on the micro biota but also the body's overall inflammatory response. But diet alone has never been able to manage either of my girls' disease.

You are right, it is hard away at college. O left shortly after getting out of the hospital so there was really no time to get her fully on board with CDED. Further, any diet you undertake should not be done without the close guidance and monitoring by a dietician and let's just say if there are no GI's in her area there certainly are not any dietitians well versed in these cutting edge diets.

CDED is meant to be used to induce remission but not as a long term diet as it is still restricts many beneficial foods. Once you achieve remission there is a slow reintroduction of the previously restricted foods. It sounds like you are doing a great job with this phase, perhaps you should go back and get your dietician degree;)

O has previously been organic whole foods plant based and while this was a time when her disease was at it's best, she still was not able to achieve full remission. She has always been milk free but definitely not gluten free.

When she was on CDED she lost too much weight so the GI is now supporting letting her whatever she wants because the weight loss kicks up her inflammation. He is very interested in diet and would love for her to try one but agrees that given her propensity for severe weight loss and already being at a very low BMI that any restrictive eating while away at school would not be in her best interest.

Yeah everyone is different. She will get there. She just needs time and patience and the right therapy will emerge.
 
Yes I have been following this thread and have really gotten a lot of support and strength from you all. Especially in the times when everything was just crumbling around us. Thank you for giving hope and in helping me become the advocate I have become for my son.

Gluten free is not allowed but at the end of 12 weeks we opened it up given whole grains bread was opened at the end of 6 weeks in CDED and since S has Celiac We had to stick with gluten free At the completion of 12 weeks.

Yes grateful it worked and hopefully will continue to work. Be it just diet, or just medicine or a combination of both. The time S has tried to deviate from the diet, he feels unease and his bowel movements change. I speak about it that if it can benefit even one who has a similar disease pattern it would be all worth it.
 
Aww Hi and welcome to the group "officially";).

I am glad you had such success with CDED. I think you are right though. Stelara is known to take a very long time to kick in. So I do agree with your theory that the meds along with the diet helped your son along.

We have also done exhaustive research on diet. We have been guided by dietitians, functional medicine docs and such. I also think there is definitely a diet component to Crohn's as it relates to it's affects on the micro biota but also the body's overall inflammatory response. But diet alone has never been able to manage either of my girls' disease.

You are right, it is hard away at college. O left shortly after getting out of the hospital so there was really no time to get her fully on board with CDED. Further, any diet you undertake should not be done without the close guidance and monitoring by a dietician and let's just say if there are no GI's in her area there certainly are not any dietitians well versed in these cutting edge diets.

CDED is meant to be used to induce remission but not as a long term diet as it is still restricts many beneficial foods. Once you achieve remission there is a slow reintroduction of the previously restricted foods. It sounds like you are doing a great job with this phase, perhaps you should go back and get your dietician degree;)

O has previously been organic whole foods plant based and while this was a time when her disease was at it's best, she still was not able to achieve full remission. She has always been milk free but definitely not gluten free.

When she was on CDED she lost too much weight so the GI is now supporting letting her whatever she wants because the weight loss kicks up her inflammation. He is very interested in diet and would love for her to try one but agrees that given her propensity for severe weight loss and already being at a very low BMI that any restrictive eating while away at school would not be in her best interest.

Yeah everyone is different. She will get there. She just needs time and patience and the right therapy will emerge.
🤗 hugs!

You have been a true inspiration and so has O been. I have told S all about her accomplishments and her resilience. May she achieve all her goals and the very best of health.

Yes with CDED weight mgmt and keeping up the iron levels was s challenge. With the exception of gluten free we just avoid everything that was not allowed in CDED. My biggest fear right now is sending him off to college keeping in mind the challenges you have pointed out. I think I will again turn to you and your insights for support and managing my own fears as we transition into that phase!
 
Welcome aboard Cure4Crohns and thank you for sharing your story. We are collectively here for each other. It's a great group and this forum has helped me very much. I hope for continued health for your son.
 
LOL! You guys are good! Some of you have noticed that I didn't send the weekly update and are PM'ing me. I apologize, been distracted with other issues.

So a quick update.

It doesn't seem like Entocort or Xifaxan are making much a difference. O's frequency is up over 10/day and sometimes as high as 13. She is seeing periodic blood and sometimes being woken in the middle of the night. There has been some back and forth with the GI but the final decision has been to keep giving Entocort a shot at controlling disease (it has been 2 weeks we are giving it a few more). We are also sticking with Xifaxan for a full two weeks to see if bacterial overload has anything to do with this.

She tapered down to 5mg's of prednisolone on Saturday. This might be part of the problem with increased frequency but hard to tell as things started ramping up last week. Might also be a function of being in the third week of her Entyvio infusion interval.

Basically, since there is nothing else to pursue right now, we are just sitting tight and trying to get her through finals and home mid December.
 
Awww you guys are so sweet!

O pretty much continued at over 10 BM's a day with a blood and waking a few times a week. Weight stable. It seemed Xifaxan and Entocort were still not helping.

She had her double dose of Entyvio last Wednesday with labs the same day. All her blood labs look decent with the exception of CRP which is creeping up a little. Was 1.2 now 1.9 but still much, much better than it was so we will take it.

Ironically, even before she got her double dose of Entyvio her fecal cal went way down to 155. The lowest ever for her. Maybe it was the Entocort? But frequency was still up so holding my breath waiting for the GI to say...IBS!

Within days of the double dose of Entyvio her frequency started going down. 10, 8, 7....she even had a 4 BM day! So that shows me it wasn't IBS. But now she seems settled at around 7 a day. Only seeing blood once a week and waking 2-4 times a week. Not normal but much, much, much improved.

I can't wait to see what her labs are at next infusion! I think that will really be the sign of whether or not we can say the R word.

GI told her she can reduce weight checks down to once a month. Well she asked and he agreed.

Oh and her blood sugar is at a nice normal range. Actually her labs showed low glucose.

Still on 5 mg prednisolone and 9 mg Entocort.

I will be seeing her in about a week and spending a week with her so I will be better able to judge what is going on then.

Thanks for checking in. You guys are the best!
 

Maya142

Moderator
Staff member
Wow!! I'm SO thrilled to hear everything is moving in the right direction!!! FCP down, frequency down - that's great!! I agree that it seems like it's Entyvio and not IBS. I think the drop in her FCP must be related to Entyvio working because if high doses of Prednisone and Solumedrol didn't bring it down much, then Entocort certainly wouldn't.

Has she regained all the weight she lost?

Could you get her in with an endocrinologist, considering you'll be going lower than 5 mg of Prednisone soon? Maybe during winter break?
 
Well it seems we have angered the Crohn's gods. O went along nicely until yesterday. Frequency went up to 10 but it had been a whole week since we saw blood and no night waking. We were celebrating.

Unfortunately, yesterday frequency was up to 10 and today she is up to 16 with bleeding three of those times.

It has been 2 weeks since her infusion. Still on Entocort and still on 5 mg's of prednisone.

No clue what to think. Just need to get her through finals and get her home.

She of course says she is "fine".
 
I don't think you have that much power with the Crohn's gods. This truly has been a rollercoaster. She's remarkable. I do hope things ease up for her especially during stressful exam time.
 

Tesscorm

Moderator
Staff member
Ugh!! :( When will she be done finals? I hope she has an earlier schedule rather than a later one. It's so hard having the worry hanging over you and being unable to move ahead with testing for answers. :(

Glad you'll be seeing her soon!
 
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