• 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

crohnsinct

Well-known member
Read the book Breaking The Vicious Cycle.

Get a good RD with experience with SCD.

The NiMBAL site is a good resource. NiMBAL Therapy book is good also.

Join a Facebook or SCD forum community. They have lots of advice for just about any substitution, recipe, situation etc.

Tell your physician you are trying it. They might want to monitor certain vitals or labs a little closer.

We basically just flipped the switch and started one day. We didn't have time to read or clean out the pantry or anything like that. it is nice when you can but not necessary.

I have an SCD Journey thread here in the parents section. IDK if you will find it helpful but take a look.

Feel free to ask any questions over there. I am not an expert but am learning.
 

Maya142

Moderator
Staff member
I LOVE the boring update!!! Way to go O for sticking to the SCD.

I'm a bit confused about the labs though - I understand they are usually done by the infusion nurse, as long as there are orders. But if O didn't have the orders, she could easily have them uploaded to the portal or faxed or whatever. A few days after Entyvio shouldn't make such a difference, should it?
 

crohnsinct

Well-known member
Not so boring afterall. Blood came back last night. But it isn't the scary fill the toilet kinda blood so.....

Her home infusion nurse can't pull labs as she can't handle fecal calprotectin samples so since O has to actually go to the lab anyway she just does them all there. The lab has the standing orders and O had the cal pro sample but she didn't want to get in her car and drive 7 minutes away to deal with the lab if she didn't have to (you know with all the pressing and important things college kids have to do in a day) so she wrote to GI and since he never responded she figured she was off the hook.

I think if she did the blood labs right away the next day it wouldn't have mattered but 2 or 3 maybe since she gets such a high dose of Entyvio????

I am peeved because I really wanted to know what her CRP, HGB and cal pro were but GI wouldn't have done anything with that info anyway so whatever.
 

Maya142

Moderator
Staff member
The lab has the standing orders and O had the cal pro sample but she didn't want to get in her car and drive 7 minutes away to deal with the lab if she didn't have to (you know with all the pressing and important things college kids have to do in a day) so she wrote to GI and since he never responded she figured she was off the hook.
LOL, that's the classic college student for you. I remember my older kiddo once had a miserable cold that lasted quite a while, and so finally when she went to the student health center, she was prescribed antibiotics for a sinus infection. She texted me saying she was "too tired" to walk two blocks (literally a 6 minute walk) and pick up the antibiotics and would just get the script filled when she came home two days later. I felt so bad for her being too tired to walk such a short distance and was worrying when her younger sister said "Well, I guess S is feeling better, she's getting cheese steaks with her friends" at a restaurant that was 6 or 7 blocks away :rolleyes:!!
I was not happy!!!

But anyway, you're right that blood work may not give us an accurate picture. CRP can go up and down quite quickly. I was thinking more about her HGB, Hematocrit, Albumin etc. Do you think those would be affected too, just within a couple days?

Sorry to hear bleeding is back. This poor kid. Is she off Entocort too now?

Any news on getting a second opinion? I would definitely get one ASAP - I really think one of the big IBD centers should see her.
 

crohnsinct

Well-known member
Not off Entocort. Still taking 9 mg's daily. 5 months now....so much for 12 weeks max! The GI is really rather cavalier about the systemic absorption of Entocort.

I don't think the other numbers would be affected too much but like I said, with the intro of SCD and all, I don't think the GI would have cared much about those values as he keeps saying things get worse before they get better and we just have to be patient. She has been on SCD for 3 1/2 weeks. I wonder how long is long enough to judge whether or not it is going to work.

O is not on board with a second opinion right now. She was over the summer when she was inpatient but the two centers I sent her records to were both saying over the phone, "colectomy". Then she got out and things looked better so she put second opinion on hold. Now with her GI saying, "if you were at any other center you would have had a diversion by now" she is really not wanting to go to another center. I keep trying to explain that another center might agree to try a different drug and she has nothing to lose. I think she knows she has this GI wrapped around her finger and doesn't really believe he will suggest surgery. We will see. She has spring break in March. He Had originally said he wanted her to come home. Then he said, "O.K. you can take your trip but come home and see me first." Now he is saying, "well, let's see how things are going, maybe you won't need to come see me and can just go on your trip". Can you believe this guy? I can't wait till his kids are teenagers!
 

my little penguin

Moderator
Staff member
wow
woth those types of instructions no wonder she doesn’t want to see anyone who might suggest
“Realty “
At her age I doubt anyone of us would have made a different decision give the fact the Gi is “fine “ with things
 

Tesscorm

Moderator
Staff member
Even with some bumps, I hope she's really on a path to improvement!

I understand re the labs... it would've been nice to have a starting point for comparison... oh well, at their age, we have to bite our tongues more and more often. 🙄 You've really got to start picking your battles! Lol

Just more wishes that you really do start seeing consistent improvement.
 

crohnsinct

Well-known member
Another week another update.

Weight down another .6 of a pound. Approaching the "that's it" mark but don't ask me what "it" is.

Frequency back down to 9-10. No blood since Monday. Night waking every night.

She is updating GI and asking if she can go away spring break and not come back and see him. Who is in a betting mood?
 
Last edited:

crohnsinct

Well-known member
LOL - She says, "if he is o.k. with me going to school, surely he won't mind me laying on a beach". She is missing the point about being able to see her and have a conversation about the plan going forward. Not to mention that I really think he should order scopes but we all know this guy isn't about to do that.
 
I’m sure I have read allow 30 days for scd to start settling things, then up to 2 years for maximum recovery. So if she can keep going a bit longer she can’t be far off thirty days?

Also in such severe cases my view is do everything that might help even a little bit.

I hope this works for her, she deserves a break xx
 

crohnsinct

Well-known member
Thanks Delta-hippo! We are at the 30 day mark now. Wow, time flies when you are having fun!

I totally agree and actually we are all rather enjoying the diet so it won't be hard to stick with it, even if the doc declares it a fail. I am actually more anxious to get her off Entocort and a little concerned about what will happen once she has to come back down to 300mg of Entyvio. But that isn't until her April infusion so that gives her three more months on SCD and hopefully it will be really kicking in by then.
 

Maya142

Moderator
Staff member
She says, "if he is o.k. with me going to school, surely he won't mind me laying on a beach". She is missing the point about being able to see her and have a conversation about the plan going forward. Not to mention that I really think he should order scopes but we all know this guy isn't about to do that.
She does deserve a break but wow, she is really not understanding or refusing to understand how serious this is! Losing your colon and having an ileostomy done is a major, major surgery. And she was perilously close to that this summer! Her poor body need to heal!
But she certainly deserves a break - I wish she could do both! But I really think she needs to see her GI and I would feel SO much better if he did scopes to see if there was healing. Because that might give you valuable info - if Entyvio isn't working at 600 mg, then you probably need a different drug. Stelara would be next, I'm guessing. But hopefully it would show some improvement, which you could then use to get insurance to pay for the double dose - one of my daughter's doctors said that when appealing for something that is not done commonly (or ever!), such as a really high dose of a biologic, hard evidence helps - scans, scopes, high CRP etc.
 
I wonder if there's any chance of trying, say, Stelara plus Entyvio. It sounds like the Entyvio has helped some but not enough. I know it's unconventional, but this might be a case to add another biologic like that.
 

crohnsinct

Well-known member
Yeah, it was presented as a possible option some time ago. Insurance won't cover it with the 600 mg's of Entyvio so we would have to back down 300 AND the consensus among the GI's she has seen is that Stelara isn't as effective with colonic disease as it is with small bowel. I say we should at least try. They also said that her TI disease is not well controlled with Entyvio and are thinking if we go forward with the colectomy then we could move to Stelara for the small bowel.

I also will be asking him about adding Humira to Entyvio. I would think that is a good option considering she responded to Remicade for a few years.
 

Maya142

Moderator
Staff member
Stelara was approved UC recently, so it must work to some extent for colonic disease - perhaps you could use that to make an argument with insurance? Then it could potentially help her small bowel, colon AND psoriasis. So would Humira though, but Stelara is better for psoriasis. But I think Humira would probably be better for the IBD...they're both options.
I know she is currently on 4x the normal amt. of Entyvio - 600mg every 4 weeks. And I agree she'd possibly have to go down to 300 mg every 4 weeks, but the other biologic should hopefully pick up the slack. We have even managed to get high doses of both biologics my daughter was on. There was a period of time she was on a triple dose of her arthritis biologic and a double dose of an anti-TNF (Cimzia) for her IBD. We didn't even have trouble getting the double dose of Cimzia! I was pretty shocked by that since she was already on such a high dose of the other biologic.
I won't lie - generally getting 2 biologics approved is tough. But it is done - definitely more in the arthritis world than in the IBD world, based on my research, but I've definitely seen a few patients with IBD on the forums on either Humira and Entyvio or Stelara and Entyvio.
 

crohnsinct

Well-known member
Weight down another .6. Another .7 and she will be under the "that's it" threshold. Her symptoms kicked up a bit astroturfing week and after she updated the GI he said he was hoping SCD would have helped with symptoms by now but that since she wasn't under the low threshold yet to keep going and stay in close contact. He said he might be willing to just do a conference call in March rather than an actual visit. I think I said this on the SCD thread but I find it interesting that he is getting anxious with SCD and it had only been 5 weeks yet he was willing to wait for Entyvio for 26-30 weeks and beyond.

Although she lost a little weight, symptoms are going well actually. Still no blood and frequency is going down. Maybe SCD is kicking in?
 

crohnsinct

Well-known member
Hey ya'll. Some good news to report.

O has gained two pounds. Still not where they want her but at least she reversed the downward trend.

Blood labs posted and her CRP is cut in more than half! It is perfectly and completely normal.

H&H are the best they have ever been. Perfectly, completely normal! CRP cut in more than half to a more than normal value!

Albumin squeaked right into normal range. Honestly all the blood labs are incredible.

Still waiting for cal pro as she has had inflammation on cal pro and not in blood labs before. However, her blood labs have been awful for a full year so just this bit is very encouraging. Maybe now her inflammation is more moderate or mild.

She is still going around 8 times a day with night waking. No blood for two weeks!

So maybe continued symptoms are IBS/SIBO? If so, I am not willing right now to abandon SCD for FODMAP. I guess we could just tell her to eat SCD legal foods that also happen to be low FODMAP but that would be restricting her diet even further and I am not sure that is in her best interest right now. IBS/SIBO don't cause damage so I will leave that for another day and deal with it if and when we are sure inflammation is totally gone.

So did the SCD do this? IDK. If you think about it although she has been on Entyvio for a year she only just started the double dose in November. So it has been about 12 weeks on double dose. 12 weeks is how long they say it takes for you to see Entyvio effects. So could be Entyvio, could be Entocort, could be diet, could be some combination of all of it.

I would really like it if she got scopes to confirm what is going on in there but this center doesn't like to scope so not holding out much hope for that.

Stay tuned for cal pro...
 

my little penguin

Moderator
Staff member
My bet is entyvio is the heavy hitter at the higher dose
Entocort knocked down the inflammation so the entyvio could maintain
Scd just gave entivyio and entocort the bump needed to get over the inflammation hump
 
Great news! It sounds like the diet is really helping the Entyvio. It doesn't hurt to continue with the diet. What is her CRP at now and what was it before? Nice to hear positive news. :)
 

crohnsinct

Well-known member
78! HER CAL PRO IS 78! Unbelievable!

So the question now is why is she still having frequency and night waking. Her GI admits that this is confusing and he thinks we should reconsider SIBO/IBS. He says that while SCD is used often to treat SIBO, he has seen it make SIBO worse in the beginning as it is a radical change in gut microbiota. He is wanting to add Xifaxan to treat the SIBO. O says Xifaxan didn't help last time but GI says last time her IBD was also active so we really have no clue if it was treating the SIBO. Now with healing occurring perhaps the Xifaxan would work. She wonders whether SCD just needs more time to treat the SIBO.

They came to a compromise. They will wait one more week and if her frequency is still above 8, then she will start Xifaxan.

In other news, her infusion was due Wednesday but the infusion provider only sent 300mg. GI would not approve that. Wanted 600 as she is approved for two more infusions. Infusion got moved to today but O has been off living her happy full life not giving Crohn's a second thought and lost track of the fact that she never got the other 300mg. Lucky GI was checking emails on a Saturday. He said do 300 today and try to get the other 300 shipped and do another infusion later in the week. I am nervous about what this means insurance wise. The approval was for 5 infusions of 600 mg. So will they count these as two separate infusions and then she completes the 5? I guess it is o.k. if this completes the approval as she only had one more 600mg dose left after this anyway. We were going to have to jump off this bridge eventually....we are just doing it sooner now.

GI says we will circle back later and discuss whether to pursue another approval for 600 or just move ahead with 300 going forward. Not going to lie....a little nervous....600 got her here....ya know the old saying, "dance with the one who took you to the dance".

Ugh!

Also since it is infusion week, notarially sure if symptoms get better if we can say SCD is working on the SIBO or if that means symptoms were IBD and Entyvio is working on the IBD.

Clear as mud!
 

crohnsinct

Well-known member
Forgot to mention....the GI thinks these great results are a combo off double dose Entyvio finally kicking in but also SCD giving it a much needed boost.
 
That's great! And yes it can get confusing if you start thinking about it all, but it's great news about the Cal Pro. Eventually this will get figured out - what is working. I understand what you mean about getting nervous about the changes of dosage. Cross that bridge when you get to it. I do think it's a combo as well as better results seemed to have come about after the SCD was introduced.
 
Great news. Seems like a good example here of Entyvio taking a while to work but eventually getting there. My son is on Entyvio right now. It's been 3 months at either 100mg or 200mg (blinded). We've noticed substantial improvements but we'd like to see more. So far he's had a good experience with it.
 

crohnsinct

Well-known member
Pangolin - why is he blinded? why only 100 or 200mg? standard dose is 300mg. What is his interval?

For O is isn't just time but optimal dosing. She needed 600mg + budesonide + SCD. here's hoping when she drops steroids or dropdown to 300MG things still hold.
 
The standard induction doses are at 0, 2, and 6 weeks, and then it's supposed to be every 8 weeks thereafter. He's in a drug trial, and they're testing different doses. 200mg would be considered a standard younger/smaller pediatric dose. My guess is he's going to need more, but that remains to be determined. Nevertheless, so far I'm happy with it.
 

Maya142

Moderator
Staff member
Oh geez, poor O!! She really needs that super high dose - my guess that is what has helped her improve. I'm sure Entocort and the SCD are helping somewhat, but I would definitely guess that it's Entyvio doing most of the work. So very frustrating - you've just gotten her out of a 2 year+ long flare, and she's getting worse again because of all the ridiculous red-tape.

We are getting similar push-back on biologics - they are making increasing the dosing and frequency VERY difficult. I spoke to the pharmacist and he told me they are hearing this more and more from patients on biologics - that insurance companies are getting stricter and stricter, which is hard when you have an "out of the box" kid. We were even told that switching back from home infusions to hospital or infusion center infusions doesn't work, because they are billed the same way. For my daughter, they are denying an increase in frequency of her biologic (from every 4 weeks to 3 weeks) and even though they approved every 2 weeks last year, they denied every 3 weeks this year, which makes no sense to me at all!

Anyway, I hope your GI is able to get her the higher dose. Poor kiddo.
 

crohnsinct

Well-known member
Hey y'all. O hasn't gotten her second infusion yet or started Xifaxan...long story.

Blood stopped and frequency is way down and looks like night waking stopped.

Her weight is up 3 pounds.

Looks like maybe she doesn't need the second infusion or the Xifaxan.

GI had asked O to get a cal pro this Friday but not sure she will remember as things are going so well and well....ya know....college....better things to do!
 

Maya142

Moderator
Staff member
That's great news! So glad she is starting to feel better (but really hope she gets that extra 300 mg Entyvio anyway!).

I text my daughters when I know they need blood work or other testing done that is important. I've learned over the years to ask "Do you want me to text you to remind you to...(make an appt., or get imaging done or to get blood work done, particularly if it's for an upcoming appt.) tomorrow?" That seems to go over better than"Have you done your blood work yet?" ;)!!
 

crohnsinct

Well-known member
LOL Maya! She specifically asked me to leave her alone and said she was a big girl now and could handle it without my reminders. That lasted a week. She was begging me to come back in today. I don't want to. A) she has to learn to do this herself and B) I rather liked not having to juggle all that!
 

crohnsinct

Well-known member
Hmmm lets see if I can catch you guys up:

Weight stable.

She got her second dose of 300mgs of Entyvio and then 11 days later got her next 600mg dose. Day of that infusion her cal pro was up to 232. Not too bad for O but not the right direction. The three previous months were 150, 140 and 73.

Her glucose is back up high which makes no sense because she is still 100% strict SCD and eats no carbs except for fruit and veggies and honey. We are watching it.

GI gave her the o.k. to start to wean the Entocort by dosing M,W,F at 9mg a day still.

She is on spring break now and on a beach somewhere loving life.

Her frequency is down to about 5 a day (some days are extraordinarily normal at 2 or 3), no bleeding but night waking almost every night still. Looks like SCD did all it is going to do. O says she can live like this.

Her approval for infusions is up. GI has to file another request. IDK if he is going to ask for another round of 600mg and if he does what insurance will say but will of course keep y'all posted.
 
It's interesting that he wants to keep Entocort at 9 MG every other day instead of dropping it to 6 MG every day. Not a bad report card though and so glad that she is able to enjoy herself. :)
 
Location
San Diego
Her glucose is back up high which makes no sense because she is still 100% strict SCD and eats no carbs except for fruit and veggies and honey. We are watching it.

GI gave her the o.k. to start to wean the Entocort by dosing M,W,F at 9mg a day still.
Elevated glucose may be due to the Entocort. Budesonide is not as bad as prednisone, but corticosteroids in general can drive up the blood glucose levels and even induce diabetes in some patients.
 
Last edited:

crohnsinct

Well-known member
@Scipio Thanks! She had been on prednisone for a very long time and they were sure that was the initial cause so we got her completely off prednisone and onto Entocort. She has been on Entocort 9 mg for 4 1/2 months now. Even though the cal pro went up the GI is asking her to taper Entocort and I have a feeling the elevated glucose could be the reason.
 

Maya142

Moderator
Staff member
I would also guess it's the Entocort. She's been on steroids so much that I would honestly consider seeing an endocrinologist and letting them supervise the taper. Of course, since getting her to even see her GI is so hard, I understand it might be very difficult for a very busy college student!!

Glad she is enjoying her spring break - fingers and toes crossed that insurance will approve the very high dose of Entyvio, because it seems to be helping her a lot!
 

crohnsinct

Well-known member
Update time:

While O was on spring break the Cover news got more serious. Our area had about 50 cases. The beach none and none in her school's state. By Friday of break, the school announced they were moving to online classes and shutting dorms. The girls had driven to the beach and her friend lives near there so she just went home, leaving O stranded. We flew her back to school. Only a two hour flight but we were still nervous.

Then we had to decide what to do with her. Leave her at her off campus apartment, by herself, in a rural are that had no cases or put her on a shuttle bus ride two hours to sit in the country's busiest airport for 2 hours and then an almost 7 hour flight home to come home to a hotbed of Covid activity. I had thought I had the flu the week prior but got tested and it came out negative. My PCP said I very well could have had Covid but there were (and still aren't) any tests available so since I was getting better I was fine BUT do we bring O home to this?

In the end, we decided to bring her home. We were concerned that eventually air travel would become harder, her getting food and supplies would be rough and being all alone 24/7 for at least 3 weeks would take it's toll. Add to it the fact that her IBD isn't under great control and in case of a flare her small regional hospital doesn't have a GI, it was better to bring her home.

In the meanwhile, T's schools closed and went to online learning until after Easter break (I suspect they won't go back). O landed last Monday just in time for the San Francisco area "shelter in place" orders.

She is doing fine. Been home a week and no Covid signs. The whole family has stayed home as much as possible but hubs and I are essential workers so we each have to go in about 2 days a week. I work with the homeless which brings a whole other level of concern.

As far as her IBD goes, things aren't good. Her frequency is inching up...at about 8-9 now, she is waking at night at least once and often 2 or 3 and she is bleeding consistently and a good amount. No formed BM's. Amazingly, she still has quite the appetite and her weight is stable. But have to admit, this morning, noon and night and snack SCD cooking with limited availability of food is starting to take it's toll on me!

Last Wednesday she checked in with GI and while he agreed blood wasn't good he told her to hold steady on therapy plan for now. SCD 100% strict compliance, 600 mg Entyvio Q4 and 9mg Entocort MWF.

This is for a few reasons. First - the children's hospital is basically shut down and only taking urgent cases. They are using a number of floors for the adult overflow from the hospital next door. No procedures unless urgent, no clinic visits etc. The hospitals around here are starting to call all specialists in to handle triage and E.R. and ICU....even opthamologists...I hear. Second - we are trying to keep her from an all out flare and needing more steroids which would leave her more susceptible to Covid complication should she get it. Third - we can't switch therapy now as that would require steroid bridge (remember taco didn't work).

So we are just trying to hold her together until this Covid thing blows over and then we will decide what to do from here. Not the best plan. Risking further flare. Risking complications from ongoing low level inflammation. But what are our choices.

Her college has decided to move to online for the remainder of the semester. Her lease is up in July. Hopefully by then, we could get out of the house and fly down and get her out of her apartment and into a storage unit. We will then drive her car home.
 

crohnsinct

Well-known member
Oh yeah and for those of you wondering if O was one of those spring breakers you saw on TV the answer is no. She was there the week prior and the trip was her friend's 21st birthday gift from her parents (although the other two girls paid their own way). She picked a VERY expensive and upscale hotel. So no college kids there. The three girls basically sat by the pool and on the beach with very few other people. They did go to the world famous nightclub at the resort one night but the very next night all the bars and clubs shut down. I was never so happy that my daughter's plans got ruined;). They were able to go out to restaurants but again they were very upscale and so pretty good space between tables etc. I was actually way more worried about her packed flight home because while she flew right after the panic started it was after the airlines started consolidating service so she missed that "the flights are empty" period.
 

crohnsinct

Well-known member
Today was update the GI day. Seems he is now thinking she might have bile acid diarrhea. So he is asking her to do a course of cholestyramine.

I have thought in the past that she might have this but not since last year. Plus even if she does have it, her Crohn's probably caused it. I am getting frustrated. I would have preferred we bring her Entocort back to daily to see if that helped first. BUT if this drug helps then I am going to ask if we can stop SCD. Higher fat diets are bad for Bile Acid Diarrhea.
 

Tesscorm

Moderator
Staff member
Wow, I'm so sorry you and O are dealing with so much. It's exhausting just reading it! And, you're right, for most of O's situation, it may not be ideal but what can you do now??

And, on top of it, you help the homeless?!? Wow. But, don't run yourself down... everyone's counting on you for help. Take care of yourself too!
 
Just wondering if digestive bitters would help at all with absorbing or tweaking the diet to include something like rice or oats rather than back to full normal diet - just makes me anxious because she initially responded so well to scd feel diet must be relevant for her. It’s so hard. At least she is safely home now and has got you to help her with all this
 

crohnsinct

Well-known member
Hmmm I am not sure. Are the digestive bitters rice and oats? They are the first things you introduce on a modified SCD Diet so maybe although if the GI is right and it is Bile Acid causing the problem maybe not. But you are right! After all this hard work, rather than throw the baby out with the bath water, maybe tried modified diet first.

I am actually not really sure the SCD diet should get all the credit for her turnaround. Only because it was after we added Entocort and also the turn around happened at about the 12-14 week mark after we increased her Entyvio to 600mg. So it really could have been any one of the three things or a combo of any of them. It is just seems like more than coincidence that her uptick in frequency and bleeding happened a week or so after reducing Entocort to a MWF schedule.

The pharmacy is out of stock on the cholestyramine so we have to wait to see.
 
Exactly my thought re:increased frequently coincidental with decreasing entocort.
Bleeding wouldn't be caused by bile acid diarrhea, would it, so is the GI thinking there's ongoing inflammation and also bile acid diarrhea?
 
My son really reacted when he cut down Entocort from 6mg to 3mg every day. It took awhile for his body to adjust but there was a difference, so it really could be that. I find it weird still that he didn't drop it to 6mg everyday as opposed to 9mg 3 x a week. But what do I know...
 
So we are just trying to hold her together until this Covid thing blows over and then we will decide what to do from here. Not the best plan. Risking further flare. Risking complications from ongoing low level inflammation. But what are our choices.
Really glad that she was able to get home!

If O's symptoms continue at the same level, this might be a good time to reconsider EEN, either oral or through a tube. It would be so much easier than SCD (for her and you!), and so much safer than prednisone right now. She might be willing to consider a tube since she's just going to be home--that makes everything about it a lot easier.
 

crohnsinct

Well-known member
@xmdmom I think he is really just stabbing at any and everything it could be at this point because the next step would be surgery (although we aren't 100% onboard with that next step just yet). His exact words were, "I would like to see if some of your diarrhea is from bile-acid driven pathway (vs the Crohn’s inflammation pathway)". So maybe he is just thinking it is a part of it. But honestly with the bleeding and the uptick right after the Entocort drop I just don't know. As you know, she has been fighting this IBS dx for 4 years now. I thought last spring and summer this guy would have put that to bed. Especially with her calpro increasing. Remember it had gone down to 73 and even before he dropped the Entocort dose it increased to 232. He decreased her Entocort anyway given the impending doom. I don't know a lot about this new drug but am wondering if it is so good at handling diarrhea that it would calm even IBD diarrhea. I don't imagine that it would heal a bleeding rectum though. There are warning about using it if you have diabetes. She doesn't actually have diabetes but given what we went through...I am concerned a little.

@Jo-mom I think for L it worked out because he was using Entocort at dx as a bridge until Remicade kicked in. So while he decreased his Entocort and had a blip the Remicade was still doing it's thing. O is at the one year mark with Entyvio and 5 months at the 600mg dose... I don't think we can expect much more from this drug.

@pdx Great idea! I was actually thinking the same a bit ago but forgot about that. Having people see her with a tube isn't her concern. It is the actual getting it down that freaks her out...along with giving up food. She is a tough kid and accomplishes the impossible but when something silly is a road block for her it REALLY is a road block. But as I have been saying a lot lately, "desperate times, desperate measures" and I totally agree with you it is better than steroids! Might also be a more palatable test (as opposed to this drug with nasty side effects) to see if the diarrhea is due to Crohn's or some other cause.
 

Maya142

Moderator
Staff member
Bile acid diarrhea...what is that? I ask for your O, but also for my daughter who had an eventful week of non-stop diarrhea and severe abdominal pain and has gallbladder tests scheduled!

I'm sorry to hear O had to go home, but I'm so glad she did!! COVID is now so widespread I hear that even domestic flights might be difficult. My daughter also came home - I am SO glad because her school is in one the hardest hit areas of the country.

I think EEN would be a great idea. Would she consider drinking shakes, if not the tube? I don't think they would want to pull her in for elective surgery during COVID, so a tube would probably be an NG tube. It makes sense and it might be worth talking about. It would only be temporary - just until it's safe for her to have the G tube surgery. I don't know if they do this for kids, but sometimes it's done as an outpatient surgery for adults. I don't know if it would be safe for her though - given her history of severe disease and sudden sepsis, they'd probably want to monitor her closely. My daughter was inpatient 2 or 3 days...I honestly can't remember how long. M was kept due to pain and to watch for Refeeding Syndrome, since she'd had it before. Actually, O might need that too...hmmm. I wonder if they could monitor her at home? Maybe with a home health nurse?

I wonder if she could talk to a psychologist about the NG tube - help her get over the fear of having one. It would be safer than surgery at this point. Is it possible for her to see a GI psychologist - like for telehealth visits? My daughter has had several teleHealth visits recently and they have worked well. It's harder with a therapist (especially as a new patient) but considering COVID, we're kind of in an unprecedented, extreme situation right now!
 

crohnsinct

Well-known member
Thanks Maya.

She is actually holding steady right now. Flare isn't getting worse and she isn't losing too much weight. So I think EEN would be a hard sell to both her and the GI. I think he would want to see the results of the bile acid trial first.

Bile Acid Diarrhea happens when there is too much bile acid in the digestive tract. I am willing to bet that M has that or SIBO. I know she tried the SIBO drugs but honestly she has ALL the symptoms (especially the abdomen pain) and she has the conditions (IBD and gastroparesis) and takes all the meds (PPI etc) that lead to SIBO. She tried the meds without the diet and from everything I read doing both is really how you solve it BUT I understand that diet manipulation with M is especially difficult so I have no idea how you might accomplish this. I have also read that for a lot of people it takes more than one try with the drugs. SIBO can also be a cause of BAM.

Bile Acid Diarrhea is more common with IBS and I think you told me once she has IBS so I definitely think it is worth investigating for her. Fair warning though, the drug is a powder that you dissolve in 4-6 ounces of water and drink. O says it is disgusting but I bet M could drink it. My only concern would be it sitting in her stomach too long. Also, a common side effect is nausea and O got it. She was able to lay down for about an hour and it passed but I know M has nausea a lot anyway so this might make it worse. BUT if it fixes the diarrhea then might be worth it.

When is her gallbladder test scheduled? I hope she doesn't have to go back to where her school is.
 

Maya142

Moderator
Staff member
M has actually been on cholestyramine (Questran) before - for a clean-out of an arthritis drug that was causing severe side effects. It was a long time ago though - long before she had a tube. She hated it - said it was gross and made her nauseous! That was only for 3 days though. Anyway, now if it were prescribed, it would go through her G tube...since she has that, no need to drink anything she doesn't want to ;)! Her diet is extremely limited right now because of stomach pain. She's mostly on tube feeds.

Testing not scheduled yet but speaking to her GI tomorrow.

Since O is home, she could insert the tube and leave it in...so inserting it and pulling it out every morning isn't really necessary. Once it's in, she'll get used to it within a few days. So you'd just have to convince her to insert it once. It's a tiny, thin flexible tube - like spaghetti. She could also do 80%/20% to make it easier. 80% formula, 20% SCD approved food (or even just regular healthy food), so it's a bit easier on her - that way she can eat some food but formula would calm down some of he inflammation in her GI tract (and would probably help even more than the SCD has already helped her). She could go back to the SCD later, once things have calmed down. I can understand not wanting to make any huge changes (like switching or adding a med) during this time - with COVID, you don't want her ending up in the hospital if things don't go well. But formula can't hurt and should help...

Would she consider drinking formula? Though actually, if her GI is ok with doing the G-tube surgery outpatient, then you may even be able to do that. That way she could cycle EEN (or 80/20% EN) until we have a longer term fix for the inflammation.
 
  • Hug
Reactions: pdx

crohnsinct

Well-known member
I definitely think she would do the g tube as her and GI discussed it over the summer. I also think rather than have a colectomy she would drink formula. But at this point, I don't think the GI is 100% convinced what is happening is due to inflammation as he is barking up the bile acid tree. Yes, even though she is bleeding and BAM doesn't have bleeding as a symptom.

This is four years running with this and we are still fighting the IBS/SIBO/Bile Acid/it's something other than IBD fight. I really thought that last spring when he had her scoped to show us it was IBS and the scoping doctor said she was a mess and told us he was going right away to tell him so...and...then she ended up in the hospital less than a week later needing a transfusion...and...They let her go to school and a week later she started the sepsis, hospitalization adventure....You would think they would take it a little more seriously. I feel like I am in a crowded room screaming and no one can hear me.

The good news is she is doing rather well considering. Cheerful, still has her color, wheels aren't falling off. So I will be patient.
 

crohnsinct

Well-known member
Well hearing that M had a rough time with this drug made O feel a lot better. So far one day down. GI said we will give it 3-4 days and assess.

Things are getting slightly worse. Still not tanking so that is good. She is supposed to have infusion on Monday but with the transfer of care back to CA the home infusion agency had to get another authorization. So we are thinking Friday at the earliest but likely early next week. They happen to have an infusion center nearby so she is going to go there rather than have T's infusion nurse come here. T's nurse is an E.R. nurse as is her husband and both have been caring for Covid patients. Her nurse said it wouldn't be a good idea to have her come to our home. They even sent their 1 year old daughter to live with relatives until this all passes.

I am not even joking but we are running low on toilet paper. I happened to buy a huge package before I even knew O was coming home but since then can't find any and now that she is here well.....

I can't even get any from my janitorial supplier for the shelter. I have the shelter residents using napkins and even those are scarce.
 

Maya142

Moderator
Staff member
Oh geez! That's not good. Can you find them online? Could you find flushable wipes? Or even baby wipes in each bathroom (and a trash can for them!). Or tissues, I guess.

Yikes! Running out of toilet paper truly scares me.

I'm glad to hear O feels better hearing that her side effects are (unfortunately) normal. M suggested to talk to her about a tube (either a G or an NG) right after she's taken Questran ;). She said after drinking that, anyone would be pro-tube!

It seems like a big step (or it did to us at the time), but it honestly wasn't bad at all. A few days of pain meds and after that M was ok. The hardest part for her was the infections which forced her to stop swimming, and the inability to sleep on her stomach, which increased joint pain. But infections really aren't that common, I think she was unlucky. She's actually had absolutely no infections of her G tube site since then. I think it was just that she healed slowly...

The J tube surgery was much, much, MUCH harder than the G tube, For the G tube, it was very quick. For adults, they sometimes even use Propofol or conscious sedation instead of anesthesia! M says she would never have done it without anesthesia though (honestly, I'm not sure I would either, although I know O has nerves of steel!).

I don't think pain management will be a problem - they'll likely give her a pain med for a few days. I think the hardest part of doing it outpatient is the worry of Refeeding syndrome. Do you know what her pre-albumin is? Or her albumin? Are they worried that she's extremely malnourished or is she sort of stable on the SCD?
 

crohnsinct

Well-known member
Flushable and non flushable wipes are equally as hard to come by. I came across baby wipes one day and the store limited purchases to 1 pack per customer. ARGH!

Well if O talks to M about the G tune let's leave out the part about not being allowed to swim with the infection;). I actually think that might be a realistic way to go because O and the GI discussed it back in August. Her weight is pretty stable now. She bounces between 119 and 121...which would be 117 and 119 on GI's scale. So while not a great weight, she isn't losing rapidly like last year.

Two days on that med and it hasn't done anything. GI said 3-4 days and O said that if at the end of tomorrow things don't change, in her Wednesday update she is going to tell him she wants off.

Her Albumin was a smudge low but nothing to worrisome. We may have a skewed view of worrisome but I really think her last blood labs were o.k.. She will get another set of labs right before her next infusion which actually looks like it will be Wednesday...right on time!
 

crohnsinct

Well-known member
Well now it looks like she may have episcleritis not a doctor but that's what it looks like to me. I thought maybe conjunctivitis but she has literally not been out of the house for 2 1/2 weeks. No one else in the house has it and the redness is confined to her eye, no discharge or anything else typical of conjunctivitis. I guess it could just be run of the mill blood shot to.

Cholestyramine trial is going nowhere fast.
 
  • Hug
Reactions: pdx

crohnsinct

Well-known member
She wants to wait and see if it goes away tomorrow. If it is still here, will include it in weekly update.

Isn't it fun having "adult" kids.
 

Maya142

Moderator
Staff member
Ah, I love "adult kids" (I really wish we still had the emoji that was banging its head against a brick wall repeatedly because that is what I feel like doing!!!) :rolleyes:. Mine wants off steroids ASAP, despite nearly going into an adrenal crisis which caused an admission last week 🤦‍♀️.Thankfully, she hasn't forgotten the experience of being admitted during the COVID pandemic, so she is taking them (grudgingly).

I agree that you definitely want to see a pediatric ophthalmologist because it may be episcleritis, but it could also be iritis (acute anterior uveitis - common in AS and psoriatic arthritis patients - I would guess psoriasis patients too) or scleritis, which are more serious. Does she have photophobia or any eye pain or irritation?

It is also allergy season, so that might another possibility. But you really can't know without someone seeing her! I know both my daughters have been complaining of itchy eyes and other allergy symptoms. M has been put on Zyrtec daily and was given eye drops (that are OTC) for seasonal allergies.

I'm so glad she is home - hopefully now you can work on REALLY getting her IBD under good control. She's managing right now, I know, but she shouldn't have to live like this. My (non-doctor) guess is that her diarrhea is inflammatory, given the bleeding and history of severe Crohn's!! I just hope he has a plan B in place for when the bile salt diarrhea med does not work. Maybe a second biologic?
 
  • Hug
Reactions: pdx

Tesscorm

Moderator
Staff member
We never did get a definitive on that weird infection S had in the summer but red eyes, including red eyelid (near lashes), very minimal discharge (but there was a bit in the morning) and sensitivity to light... I don't remember how long exactly it lasted but definitely for a few weeks... (this was when we were told possible adenovirus or reactive arthritis).

Just FYI... maybe something else ties into some of her symptoms??

 

crohnsinct

Well-known member
No photophobia, pain or irritation. Just so happens that Uveitis could be a side effect of the drug she is on now so I think if she still has it today I will strongly suggest she mention it to the GI.

But there is another thing happening that is puzzling. I posted o the adult forum because I figure they have more experience with cholestyramine but every time I post there, I get no response so if any of you are interested and might have a suggestion you can check it out here. https://crohnsforum.com/threads/cholestyramine-and-white-clumps.85664/
 

crohnsinct

Well-known member
Update went in to the GI and he doesn't want to change anything right now because of the pandemic but will wait to see what labs look like.

He has told her it is o.k. to stop cholestyramine. So we will see if those mysterious white clumps keep showing up.
 

crohnsinct

Well-known member
Blood labs came back. All except liver are within normal. CRP is creeping up and just within normal and up until they recently raised the normal range it would ave been elevated.

She was dehydrated so that could explain the normal H&H but still.

Liver numbers are elevated but I am putting that down to diet and the recent cholestyramine use.

So we wait for cal pro.
 

crohnsinct

Well-known member
AST is slightly elevated and ALT is about double. Not too bad. We have a history of bad livers in our family so I watch those numbers. Not too concerned given she had just been on three days of that new med AND she is eating a VERY high fat diet so it could just be the beginning of fatty liver.

I am quitting Crohn's...AGAIN! Figure if her numbers are this good and she can deal with what is going on and GI isn't concerned, then I will just chill. They will both let me know when they need me.
 

crohnsinct

Well-known member
So GI wrote to Olivia. He is concerned about the liver numbers and just wants her to get them checked again in a month, which is when her infusion is anyway so not really doing anything we wouldn't do anyway. Just thought I would update y'all cuz while I have quit Crohn's pretty sure you guys haven't;)
 

crohnsinct

Well-known member
LOL! GI wrote to O saying, "between you and I did you drink the night before your labs". Ummmm our entire state is in shelter in place orders so unless we were throwing a family kegger than no. And if we were drinking at home then no need for the between you and me. She doesn't generally drink anyway AND no there isn't anything she can really drink on SCD anyway!
 

crohnsinct

Well-known member
UGH! I am trying tasty away but dang if Crohn's just keeps dragging me back in.

Remember those white clumps I spoke of last week. Well, last Wednesday (the day she stopped cholestyramine) they started going away and the next day all gone. So I assumed it was the drug. BUT she also got her infusion that day. Today, they are back! Not as bad but getting worse. What the heck is this stuff?
 

crohnsinct

Well-known member
O had a follow up with GI today via Telehealth. I have to hand it to this guy, he is really trying to honor her wishes to avoid surgery. So here are the bullet points:

- that 73 cal pro he feels was really just some left over benefit of her previous prednisone use
- He feels that her terminal ileum is still an active site for disease but also that she carries a significant colonic disease burden
- doesn't like the cal pro trend
- he wants to add Humira. Feels that if we suppress the amount of tnf produced (Humira) and then also suppress the ability to cause damage of the tnf that survives (Entyvio) that we might just have a shot at controlling her disease.
- was thinking of bringing her Entyvio back up to 9 mg daily (as opposed to the 3 day a week dosing) but would like her to try EEN as the Humira/Entyvio combo is strong but he doesn't know if it is strong enough to take over the disease that she has. Would like to give it the best fighting chance that it could have and healing the mucosa with EEN will do that. The alternative was to increase Entocort and add Humira and if it still didn't fix things then add EEN. O chose to add it from the beginning (she doesn't want to delay things as if she needs the surgery she wants to do it sooner rather than later to give herself time to heal and adjust) BUT wants to wait until after finals. That was fair enough. She is already on SCD and that is more than enough with all the stress of the last week of classes and preparing for finals. He said we will know by two weeks into EEN if it is helping and if it isn't she can drop it. He feels it is a really good shot to take but cautions us that with her heavy colonic disease and lack of response to SCD, it is likely only to fix her TI disease and might not even help there given SCD isn't helping much there.
- he wants her to stay on strict SCD for now

So he is submitting to insurance for Humira approval and she will start EEN early May.

She is meeting with registered dietician later this afternoon to see if there is any way we are falling short on SCD and if there are any tweaks we could make to help there.

GI o.k.'d putting off meeting with surgeon until after she has been on Humira for a few weeks.

Rechecking LFT's early May and if those are still elevated, we will have to reassess the whole plan.
 
Last edited:

crohnsinct

Well-known member
P.S. We are keeping Entyvio 600mg/Q4.

I would like to be a fly on the wall when insurance gets the new plan 😂

The thing we have going for us is that Entyvio goes through medical approval because it is an infusion. Humira goes through pharmacy. So maybe if the two sides don't talk to one another we could fly in under the radar.
 
Last edited:

crohnsinct

Well-known member
argh! P.P.S. He also did say that in his opinion by the time we receive approval for the Humira we won't need to be as concerned about immune suppression (even though there isn't a lot of concern surrounding the anti tifs to begin with) as the worst of things would be over, especially in our area.
 

crohnsinct

Well-known member
Yeah I really think we can also. We are going to try through the GI so he has total control. If that doesn't work the dermatologist said she would like to try Humira for her psoriasis so if GI gets denial, he will ask derm to try to get it. I am not quite sure what doing he is going for BUT if he goes for the standard her Entyvio is already costing almost $60k a month and then add the Humira twice a month minimum....if they catch it they may balk.
 

Tesscorm

Moderator
Staff member
I'm glad you have a plan but I'm sorry that it's become necessary to use many treatments. But, yes, preferable to surgery. I'm really hoping this does it for her!! 😘
 

Maya142

Moderator
Staff member
The thing we have going for us is that Entyvio goes through medical approval because it is an infusion. Humira goes through pharmacy. So maybe if the two sides don't talk to one another we could fly in under the radar.
My kiddo was on an injectable biologic for her arthritis when we added Entyvio. Because Entyvio went through the medical side, it went through within weeks. In my kiddo's case, one biologic was prescribed by her rheumatologist for her AS and of course the Entyvio was prescribed by her GI for IBD.

When we tried getting two biologics through the pharmacy side, with Humira and her second biologic for arthritis, that failed despite multiple appeals. We had to resort to home injections administered by a home healthcare nurse (which goes through medical as it is billed as an infusion for reasons I don't understand) and the other biologic going through the pharmacy side. It's definitely MUCH easier if one goes through the medical side and the other through pharmacy. I'm SO glad her Humira was approved so quickly - she needs it.

My kiddo has been on 2 biologics for 3 years now and it's been the best thing for her. She is on two biologics and MTX and still manages to have active disease, much to her doctors' dismay. But I hope very much it will be different for O!!! Really sorry to hear her FCP crept back up but not surprised unfortunately.

For EEN, is she planning on drinking the shakes or using a tube? From your post it sounds she will be drinking the formula.

As for surgery, does her GI say it's the next step if Humira and Entyvio fail? How is O handling all this?
 

crohnsinct

Well-known member
Loading dose of Humira done today! Roll on remission!

Maya - she is planning to drink Boost/Ensure/etc.

With double dose Entyvio, Humira, Entocort and EEN, we are pretty much clobbering this beast. No one has actually said what the next step is but the hint in the room was surgery.

She is handling all this fine. Not happy about EEN but likes that better than colectomy. She is a funny sort. She doesn't like to think about next steps and what ifs. She also is pretty much defying her body not to comply. She started asking me on the way to the GI today, "what if my body rejects Humira" and quickly said, "never mind, that isn't going to happen. Humor is going to work. Monday, my poop will be solid for the first time in 4 1/2 years, I will only be going twice a day and my fecal cal on Wednesday will be totally normal. Then GI will say Humor word so well that I don't have to do EEN". Ummm yeah...o.k.. I guess it is possible.
 

crohnsinct

Well-known member
Quick update.

Not a lot has changed. Frequency and bleeding went up but she had her infusion on Wednesday and things have calmed down a bit. No signs of normalcy or remission yet.

Labs came back "overall good". Liver numbers back in range. H&H are good but she was dehydrated so those could be artificially high.

Calpro came back down 80 points at 480.

CRP inching up and just went a little over normal. She usually runs pretty low unless she is in a horrible flare so watching this one.

She is supposed to start EEN on Monday but is dragging her feet on finding a formula she likes and sounds like she is changing her mind.

She took her last final and looks like another 4.0 semester so she is a very happy girl.
 
Last edited:

crohnsinct

Well-known member
Forgot to say that her weight is up about 4 pounds since she got home. Part of it is eating like crazy but most of the weight has been gained in the last week and she started that Chloe Ting 2 Week Shred workout so maybe some of that gain is muscle. Either way you cut it that is good news because you have to be nourished in order to make muscle. Also have to be nourished in order to get through the workouts.
 
Top