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Heard from Doc today

Glad to hear she's eating better. Hopefully things will continue to slowly improve.

Believe me, I can understand medical rebellion and mutiny, especially being young. I probably would have done something similar if anyone had been able to figure out what was wrong with me back then!
 
What a miserable situation, especially after the brilliant earlier results. It’s mad how quick things can change.
I would encourage any opportunity to up calories especially if possible surgery on the cards. I had a rubbish time in November where it felt very hard to eat. Banana/ coconut milk/ almond butter smoothies helped turn the corner. Also porridge with cream and honey (I know oats not strictly scd but other anti inflammatory diets allow) and stirring coconut oil and almond butter into soups.
Maybe also worth checking iron levels if she is bleeding that much.
Poor thing.
Hugs and prayers xx
 

crohnsinct

Well-known member
Happy New Year Y'all!

Well O had her second calpro and her results are still >2000.

In true O fashion she woke today not feeling well...non IBD stuff...cough, aches, chills. GI wants her tested for Covid tomorrow. If Covid is negative she is going to start back on steroids to hit the inflammation fast and hard. If Covid positive IDK what.

She is supposed to go back to school next Wednesday. I think now it is official. She has never gone back to school NOT on steroids.

Fun times!

Hope you are all well.
 
I know she is trying so hard to do the keep calm and carry on but this really doesn’t sound good. I know she is tired of scd, wonder if it is worth considering een and CDED or phase one aid-ibd? I’m worried about malnutrition if things are going through that quickly so thinking easy absorb high nutrient might be the way to go? Hope the steroids help.
I was also wondering, and this is a long shot, mount sinai are doing some work on a phage to tackle E. coli (another member kiny posted about it), if she is sometimes responding well to antibiotics then a massive flare, don’t know if there is a microbiome test that would identify if a particular bug out of control and if E. coli whether they would consider compassionate use.
I also did wonder if she needs to talk to someone as this is such a nightmare for her, a health psychologist might have some ideas about living with chronic illness- I was thinking about this after you said she ‘forgot‘ her meds and wondered if something a bit more going on. Rage? Despair? Wanting to scream at the moon? She’d be entitled xxx
 

crohnsinct

Well-known member
Thanks @Delta_hippo . Her doc did say that one of the antibiotics she is on is addressing e coli...I wonder if that is the same thing Mt Sinai is doing?

She has spoken with the department psychologist and felt she didn't get anything out of it and the psychologist told her she is good and didn't need to have another appointment and to call if she needs anything. What a disappointment.

We talked a bit on the way home. I said, "you won't drink formula, you won't have surgery...you are tying his hands. Would you consider a g tube?" She said, "no they can insert an ng tube in the hospital and I will wear it 24/7." O.K. great then you will go back to school with it? She said o it comes out when she goes to school. She is really being ridiculously stubborn here. I wish it wasn't Covid and he would pull her into the office and have a good long talk with her.

Just heard back from the GI and he says that even if she were Covid+, he would still put her on prednisone to get fast control of this inflammation. So she is back on 40mg daily. At least her psoriasis will clear up.
 

crohnsinct

Well-known member
Well O is Covid positive and I likely am to as I now feel pretty sick. Husband, T and I are getting tested today. Third daughter is getting tested Thursday.

O is down to 111.5 pounds ad she is 5'8". We are meeting with the R.D. today to discuss liberalizing the SCD diet. At this point between the Covid and the Crohn's flare we have to replace calories and stop the inflammatory cascade.
 
Oh, I am so sorry to hear this. I wish I could bring you a casserole, CIC. This is not what any of you needed.
My daughter in law (with an unidentified immune issue) had covid and it took a few months for her to feel ok. Still not back at work full time. She is 23.
I hope you can get calories happening. Did she already start steroids? How does that work with a covid infection?
 

Tesscorm

Moderator
Staff member
I am so sorry to read all the updates! I really wish she would catch a break; she works so hard and her perseverance is incredible... she deserves a break, not another illness to treat. :( And, you as well, you don't need the worry nor the illness!

Take care of yourself too!
 

crohnsinct

Well-known member
Well now I am pretty sick and my results posted overnight and I also have COVID19.

O seems to have turned the corner as far as her COVID goes. Still having loose BM's and seeing some blood but it has only been 3 days of steroids. She should turn the corer there also any day now.
 

Maya142

Moderator
Staff member
How is she doing now CIC? Poor kiddo. Sometimes they have to learn the hard way. My older daughter did the same in college (more than once!).

Is she on weekly Humira now? It's interesting that the antibiotics are working so well for her - I'm glad they are but I never would have guessed they'd help so much.
 

crohnsinct

Well-known member
Thanks Maya. She is still pretty sick from the Covid so hard to know how she is doing.

The GI isn’t so sure her coming off budesonide is what caused the massive flare. She is too bad too fast. He thinks it is a combo of factors. The Ned non compliance but also reducing Entyvio and possibly the low calpros were a lab error because they didn’t result until 9 or so days so it is questionable how viable the samples were. She gets tested every 4 weeks so hard to believe a week off budesonide made her calpro go from 56 to 2200 that fast. But certainly didn’t help matters. He also thinks antibiotics were definitely helping but also that one week off them wouldn’t cause that much of a calpro increase.

No maintenance changes yet I think we are just trying to get through covid and then through steroids and take it from there. Maybe if steroids could get her back to baseline the budesonide and antibiotics will hold her.
 

Maya142

Moderator
Staff member
Oh my goodness, somehow I only read the page before this and had no idea she had COVID!!! I'm so, so sorry to hear that. This poor kid needs a break. I can't believe she has to deal with COVID on top of everything else. It breaks my heart to hear she has so much on her plate.

What are her symptoms? Is she going back to school?

Poor, poor O. I don't blame her for pushing back on some of the treatment - she's been flaring for 5 years now.

I wish she would consider the G tube. Her weight is really low. I hope she can add some foods back into her diet soon. I'm also hoping Pred will improve her appetite once she has recovered from COVID.

You all will be in our thoughts - praying for a speedy recovery.
 

crohnsinct

Well-known member
well husband is now also down with COVID. T and moldiest are left. T tested on Tuesday so her results should be in any day now but she is not symptomatic. My oldest is symptomatic so fully expecting her result to come back positive.

O's classes start on Monday. She can't go back until the 17th the earliest. It all depends on T and if she is negative and stays negative or of she starts developing symptoms. Then it is 14days from her symptoms. She is working with her teachers to see if they will zoom the class for her. Even if she just hears the audio it is better than nothing.

O has/had sore throat. fever, headache, chills, aches and pains, cough and chest pain when breathing. We got a pulse ox monitor and are watching her oxygen levels. So far so good. She did dip down to 93 which is the lowest they said we could keep her home but she went back up later.

I have all the same less the cough and chest pain. Hubby has just the cough but tonight sounding nasally. Oldest just has sore throat.

It is ridiculous. We all have to sleep and live in separate rooms. Wash hands or sanitize before we leave rooms, with masks on, carry wipes and wipe every surface we touch. No one prepares food for anyone else. Which is near impossible because O is so weak and frail she can't cook for herself. And we can't order in because of SCD. So GI said it is o.k. for me to prepare her food. We were both infected anyway and her weight and health's more important.

IDK if Crohn's has improved. She is still going a lot. Less blood so that's good. And she gained a pound.
 

crohnsinct

Well-known member
Haha Maya she is sorta considering a G tube but now with the state of things in CA no way would they bring her in for the surgery especially given her Covid status. The GI actually mumbled something about admitting her for nutrition but Covid....then she got it so all bets are off.
 

crohnsinct

Well-known member
Oh did I share the funniest part of all this?! I got the vaccine on Thursday! The very same day O and I started getting symptoms. I though mine was a simple reaction to the vaccine but then when O got sick I thought twice but thought we probably just ran ourselves down. Then that night my boss called and two residents of the shelter were positive so we figured we were next.
 

crohnsinct

Well-known member
Hey guys! The Covid party is OVER! In the end it was just the three of us. Somehow my oldest and youngest escaped getting sick. T probably because she is in that teenage stage where she spends all her time in her room FaceTiming her friends and playing video games. It used to make me mad but now I am glad she did that!

We all had a rough 2-3 days, hubby was the worst. We were watching his temp and O2 sat hourly (via FaceTime obviously). That is the hardest thing. Having a family member sick but not being able to take care of them.

We are still quarantining from each other through Sunday as that is the 10th day since my husband's test. O and are are just really, really weak.

O goes back to school Monday. At least I am less worried about Covid now, although I am proof you could be reinfected but she only has 4.5 months left. Ironically her room mate and her room mate's boyfriend have it now also. The room mate moved out to live with the boyfriend.

She is up 2 pounds to 113.5. The steroids seem to have calmed things down a lot. She asked her GI if she could reduce them this week but he said no. So another week at 40mg then he said maybe step down to 30mg. That shook us a bit because in the past when not a hospitalized flare, she was put on 20 max and was very aggressive about stepping down. Even when she came out of the hospital she was discharged on less than 40mg Just ugh.
 

crohnsinct

Well-known member
Well I wasn't actually positive because it was the beginning of march before there were tests available BUT I presented with classic COVID symptoms and progression and tested negative for everything else so they told me to assume I was positive for COVID. I only half believed them but then as more and more info came out I fit the profile perfectly. And then I tested as having antibodies and now that I tested positive this time and saw that the course was exactly the same as the last (maybe not as bad as the first time), I am finally buying their theory that I had it in March.

Hopefully now with two bouts AND the vaccine I am done with this bugger!
 

Maya142

Moderator
Staff member
You can absolutely get COVID more than once - I hope O will still be wearing a mask and social distancing!!

I'm so glad you got the vaccine CIC! We are hoping that my daughter will get one soon. I know i will sleep better when she has had it.

I'm glad to hear that you're both getting better. i'm worried about O going to school - will she have the energy to attend class, extracurriculars and cook for herself? Her weight is so low. Can you send boost or Ensure with her? That way if she is too tired, at least she will have something nutritious on hand.

Hope you and O start feeling better soon!
 

crohnsinct

Well-known member
Well I guess O’s situation is more precarious than we realized. She is still chipper and frequency is still ok down to about 4 times a day BUT she just needed toilet paper I brought it in to her and there was a little blood. I asked her to weigh herself and she is down to 111! WTH? Why can’t this kid gain weight....on steroids!

That little bit of blood typically wouldn’t concern me but on 40mg of steroids for almost two weeks I would think bleeding would have completely stopped and frequency would be down to one normal BM. I honestly don’t think this kid has had a normal solid BM in five and a half years. She probably wouldn’t know what one looks like!

I really don’t want to send her back to school. I am concerned about her ranking when her tapers steroids and the possibility of needing the hospital and for sure that small country hospital by her school with no GI is over run with Covid. I will fly her home before I send her there.
 

my little penguin

Moderator
Staff member
Has she been tracking calories ( my fitness pal ) to see if a she is eating enough but not absorbing
Or b just not eating enough ?
Definitely something to add to the list

If your on steriods weight gain isn’t a given if her calories are low
It only increases due to increased calories
More than once Ds maintained weight while on steriods with een since his formula intake didn’t increase
 

crohnsinct

Well-known member
Definitely not eating enough. Between her lack of appetite a little due to Crohn’s but a lot due to Covid and my Covid...not feeling up to be upping and making food and encouraging her to eat....I think it has just been a perfect storm.

To add to the dilemma her room mate tested positive last Monday. She moved out to quarantine with her positive boyfriend but I guess things didn’t go so well cuz he asked her to leave. So she technically is still in quarantine till Thursday and O is going home Monday. I wonder how susceptible she is having just recovered herself and on steroids.
 

my little penguin

Moderator
Staff member
Is she willing to eat xyz because she has too ?
Not because she is hungry
To get her weight up
Things she generally likes but isn’t hungry for anything right now
But ears because it’s breakfast or lunch etc
 

crohnsinct

Well-known member
Yeah. She eats just because she has to but Covid messed with all of our appetites. So she gets full and nauseous really fast. We have some high calorie snacks and I made a new batch of SCD Yogurt so peanut butter banana and yogurt smoothie here we come!
 

crohnsinct

Well-known member
Surely you jest. Nope! The GI just ok’d expanding the diet a little so she was allowed to add some gluten free snacks. That said I will confess that at two points when we all had high fevers and were really sick and ordering door dash, I was so worried about her, I let her order chik Fil a. So even those two really high calorie cheats didn’t help. She also ordered Greek the other night and they sent two dinners by mistake and she ate them!

I made her the Lois Lang bread yesterday and made her French toast with it today and a big pile of strawberries and blueberries. She ate two slices. This bread is very dense but small.

She asked for açaí bowl for lunch. Not very high in calories.

She eats a lot of RX Bars for snacks.

I think I might have an avocado in the house. I will ask her to eat that for snack. Maybe pasta (red lentil of course) for dinner?
 

my little penguin

Moderator
Staff member
Meat ...big thick meatballs with her lentil pasta
Nutritional yeast allowed ???
Cashews as fake cheese
Still have her track in my fitness pal
There are critical levels for calories to keep
Things functioning and it doesn’t sound like she is above that level
 

crohnsinct

Well-known member
Yeah, she eats a lot of meat even though she hates it. She had a huge red bell pepper stuffed with meat and onions last night with a huge serving of rice (not typically allowed on SCD but they let her add it) and carrots. I even sprinkled some cheddar cheese on it (she also hates cheese). She ate it all.

Nutritional yeast is not allowed.

Haven't used the cashews lately but she does like the cashew sour cream....we usually poor it over veggies.

A lot of nut butters.

You are right. She REALLY is NOT getting enough calories. She is so lazy about getting up and cooking for herself and with me down sick I think it was just the perfect storm. I think I can get her back up to at least 113 by Monday...maybe even higher.

Uh oh....just ran through my room urgently to go to the bathroom...that would be number 6 for the day.
 

Maya142

Moderator
Staff member
I really don’t want to send her back to school. I am concerned about her ranking when her tapers steroids and the possibility of needing the hospital and for sure that small country hospital by her school with no GI is over run with Covid. I will fly her home before I send her there.
Isn't there a remote option for school, since COVID cases are going up everywhere? I know she's had COVID but it is very possible to get it more than once. At M's school, there are very few students allowed back on campus (mostly seniors). So while there are some classes that are in-person, they ALL have a remote option, even science lab courses. All lectures are recorded because students may live in different time zones.

I know one school in our area is making students come back in person. But you can get a waiver if you are immunocompromised.

I have read that patients on biologics are doing ok with COVID but those on steroids had increased the risk for complications:
Background and Aims
The impact of Coronavirus disease 2019 (COVID-19) on patients with inflammatory bowel disease (IBD) is unknown. We sought to characterize the clinical course of COVID-19 among patients with IBD and evaluate the association among demographics, clinical characteristics, and immunosuppressant treatments on COVID-19 outcomes.
Methods
Surveillance Epidemiology of Coronavirus Under Research Exclusion for Inflammatory Bowel Disease (SECURE-IBD) is a large, international registry created to monitor outcomes of patients with IBD with confirmed COVID-19. We calculated age-standardized mortality ratios and used multivariable logistic regression to identify factors associated with severe COVID-19, defined as intensive care unit admission, ventilator use, and/or death.
Results
525 cases from 33 countries were reported (median age 43 years, 53% men). Thirty-seven patients (7%) had severe COVID-19, 161 (31%) were hospitalized, and 16 patients died (3% case fatality rate). Standardized mortality ratios for patients with IBD were 1.8 (95% confidence interval [CI], 0.9–2.6), 1.5 (95% CI, 0.7–2.2), and 1.7 (95% CI, 0.9–2.5) relative to data from China, Italy, and the United States, respectively. Risk factors for severe COVID-19 among patients with IBD included increasing age (adjusted odds ratio [aOR], 1.04; 95% CI, 1.01–1.02), ≥2 comorbidities (aOR, 2.9; 95% CI, 1.1–7.8), systemic corticosteroids (aOR, 6.9; 95% CI, 2.3–20.5), and sulfasalazine or 5-aminosalicylate use (aOR, 3.1; 95% CI, 1.3–7.7). Tumor necrosis factor antagonist treatment was not associated with severe COVID-19 (aOR, 0.9; 95% CI, 0.4–2.2).
Conclusions
Increasing age, comorbidities, and corticosteroids are associated with severe COVID-19 among patients with IBD, although a causal relationship cannot be definitively established. Notably, tumor necrosis factor antagonists do not appear to be associated with severe COVID-19.
I know O will not want to stay home but the fact that she's flaring, lost so much weight, is on a high dose of steroids and has such severe disease, anything could happen. Especially since it's such a long journey to get home (there are no direct flights, right?). Just worried for her. I know she wants to graduate ASAP but she also doesn't want to end up with a stoma.
 

crohnsinct

Well-known member
Still 111 and a bad day. Frequency up, tummy feels icky, accidents and bleeding. Still going back to school on Monday.

@Maya142 her school is having in person instruction. They did give all the professors a choice and only one of O's professors is doing online class. She got special consideration because of the COVID to do online for the first two weeks but that ended on Friday and because the professors are not doing traditional online classes it really was just them setting up a computer to zoom the front of the classroom so half the time she couldn't see the whiteboard or the professor and hearing what was going on was a challenge.

It's hard for me to tow a hard line with her because her GI is all, "O.K. great go finish up your senior year". So I look like an idiot asking her to take it easy.

She got a direct flight but after she lands it's a 2 hour shuttle bus ride out to where the school is. It's a really long day. I am thinking about getting her a hotel room until the roommate is done with her quarantine.
 

my little penguin

Moderator
Staff member
It’s really hard when A she is an Adult and B her doc gave his blessing for her to go back to school
That’s tough but she has been flaring every semester
Hotel sounds like a good plan until the roommate is out of quarantine on Thursday.

Stinks they are not embracing online instructions as an option for those who need it
 

crohnsinct

Well-known member
Well, she is leaving. At 3:30 in the morning. I had to drive her to the bank tonight. Conversations went like this:

"Honey, I am concerned about you. Not Covid but your Crohn's"
"I know, me to"
"ahhhh so you admit that this is not o.k.?!"
"yeah but there is nothing we could do about it"
"O.K. I feel better. Just promise me that if things really start going south you won't wait too long. Call me. I don't want you in that tie regional hospital over run with Covid and no GI or colorectal surgeon. If things get bad, call me and we will bring you home".
"I promise"

So if anyone else isn't going to get sleep tonight hit me up! I'll chat!
 

crohnsinct

Well-known member
Hey y'all! She's back at school. I know a lot of people don't agree with me letting her go but I figure it this way. Crohn's is going to do what it is going to do whether she is here or there. She is so happy at school. With her friends. In the classroom. Getting ready to graduate. Why should she stick around here? The only thing we could offer her is rest. She has no friends here and we have no family here. So she would sit around out house wit nothing to do. Better she be happy. I think that will go a long way toward healing also.

The good bye was fine. Maybe because it was 4:30 a.m. and we were too tired to be sad 😂

It is easier for me if I don't see her, see her trips to the bathroom, see her dirty underwear in the sink. What I don't see can't worry me. Ignorance is bliss. She might come home for the summer. We'll see.

She gets infusion this week so labs soon and we will see if the steroids are doing anything for this inflammation.
 
Sending virtual hugs. Let’s hope the labs show something is going in the right direction.

I wish she was home resting and being looked after but it is not in your gift - adding resentment into the mix if you’d tried to force it isn’t going to help either of you. But I can only imagine how hard it is and hope you are over the worst of covid and getting a chance to recuperate.
Nothing practical to suggest I’m afraid just wanted to say thinking of you xx
 

my little penguin

Moderator
Staff member
So glad she is at school
Even though all of our kids are our “babies”
She is an adult and gets to control her life /health
That’s wonderful she gets such joy from school

Sending healing thoughts her way and yours
 

crohnsinct

Well-known member
She reports things are good. She is 112 on her scale at school. Could be a pound gained or just a different scale but at least we have a school baseline.

Based on her report about how she feels she went down to 30mg prednisone.

She is getting the Moderna Vaccine through the school on Tuesday! I get my second dose Thursday.

Thanks for checking!
 

crohnsinct

Well-known member
O had infusion Tuesday and blood labs posted. CRP down considerably, most others nicely in range except darned glucose...AGAIN...she barely got close to range and now it is way up again. That has to be the prednisone.

She gained another pound so 113 now. She reports appetite is good, frequency down to 2-3 times a day, no bleeding or urgency.

Based on the above GI gave her approval to go down to 20 mg's of prednisone and hold there until cal pro comes back.

She was turned away for the Covid vaccine because they want her to have 30 days from last day of symptoms. They said not for safety but more for side effects because side effects are worse if you have recently recovered.

I got my second vaccine today even though I also recently recovered. They said I had to because I already got the first dose. The other people I work with who also had Covid said the second shot really affected them and they felt like they had Covid all over again. I am hoping if that happens it is short lived.
 

crohnsinct

Well-known member
O's calpro posted. 66!

Good news is she is responding to the steroids. This is much better than in the past when she only sort of responded.

This calpro was at the 40mg dose but the test was done after 3 weeks at 40mg and a few days at 30. We will wait and see what happens as she drops further but so far so good at 20 which started last Friday.

Symptom wise she is really good. Weight check on Thursday.

Her school did not give her the vaccine because it was too soon after she had Covid. I got the second dose about two weeks after I was cleared to get out of quarantine and it made me really really sick. So good thing she delayed it.

Hope you are all well.
 

crohnsinct

Well-known member
Weight 113. Status quo.

Checked in with GI and RD. GI is excited about low cal pro and symptomatic response.

Reducing prednisone down to 15 mg's daily and when she hits 10mg she is to start back up on the budesonide.

Darn. I was hoping we were going to try this thing with no steroids at all. Silly mommy!
 

Maya142

Moderator
Staff member
Thrilled to hear that symptoms and FCP are down!! That's wonderful news! I'm so glad she can enjoy her last semester!

Do you think it's the combination of the antibiotics and the steroids that have helped her? I had no idea that antibiotics could help so much in Crohn's!
 

crohnsinct

Well-known member
Boo! O got her labs done Monday for her infusion that never happened because the 4.0 college student forgot to get her Entyvio ordered!
But I digress.

Her CRP is 121, electrolytes are all low, bilirubin high, WBC's are high end of normal but she is always lower than normal so this is pretty elevated for her. H&H and albumin are normal but dropping a good amount and fast. Some liver values low which is generally o.k.. Wondering if prednisone could've caused some wacky labs but the high CRP is pretty much an usually indicator of inflammation, eh?

Ironically her glucose was fine. Go figure.

So we will wait for the cal pro before raising the alert level. She says she is fine but we all know she has a skewed sense of fine.
 

my little penguin

Moderator
Staff member
Assuming she is weaned down quite a bit on pred
And now the inflammation is rebounding back to flare mode

please make sure the Gi is aware
The doc need the full picture
Of where she is at
Fecal cal
Frequency
And bloodwork
 

Maya142

Moderator
Staff member
Electrolyte issues could also come from weaning too fast. Her body is not used to making its own cortisol. I know whenever M has to go to the hospital for a suspected adrenal crisis, they ALWAYS check electrolytes (after making sure she's not going to crash, obviously).

But O is currently on more than the physiologic dose though, so I suspect MLP is right and she is flaring. Is she having a lot of diarrhea? That would definitely mess with her electrolytes.

That is a REALLY high CRP. That's worrisome. I agree - she needs to update her doc ASAP.

When is her infusion now?
 

crohnsinct

Well-known member
Yeah, I had thought the same thing @Maya142 ...about the electrolytes. She is on 5mg daily dose now.

OK. I think I may have freaked you out a little. Her CRP is 12.1 mg/dl range max's out at .9 but that would be 121 mg/L which has a max range of 10. Does that make you feel better @Maya142 ?

She says no diarrhea and only going 2-3 times but it is very soft and flare ribbons.

Her infusion is tomorrow. Tomorrow is also her day to update the GI and she said she will attach the lab report to her email.
 

Maya142

Moderator
Staff member
I assumed it was mg/L - still freaks me out! 121 is still very high when 10 is the upper limit. I mean, I know it's been higher in the past but wasn't it in the normal range last time?

I'm glad she doesn't feel too bad...that part does make me feel better. I'm guessing she hasn't had a virus or anything like that that could have raised her CRP?
 

crohnsinct

Well-known member
Yeah...it was 5 taken a week or two after she had Covid. It was 108 when she was admitted that horrid summer and 240 when she was septic.

She said maybe she has a little sore throat and a cough but again when she had mono not so much as a budge in CRP. She also said she fell and hurt her knee but it isn't swollen and all that time she had the hip issues and the hip surgery her CRP never budged. Just so weird that she feels o.k. and her frequency is down, no bleeding etc...but we are talking O here and we all know she has history of under reporting.

Tomorrow is her weight check anther day to update the GI. She said she will attach the lab results (they don't usually get them from this lab very quickly).

I will let you all know what the GI has to say.

She is still just taking Humira every other week and is down to 300mg Entyvio Q 4 so I guess there are some things we could still do.
 

Maya142

Moderator
Staff member
That is odd...she tends to have pretty dramatic symptoms when she is flaring.

I don't know if insurance would allow this but what about going back to 600 mg Q4? I know it's a super high dose, but she was doing better on it.
 

crohnsinct

Well-known member
I know right? This kid usually shows symptoms way before the cal pro or CRP move. Maybe she isn't telling us everything but maybe this disease activity is more the small bowel. If it is, I don't know how much of an option the colectomy even is anymore...not thatch is even entertaining the idea but at this point she is steroid dependent and refractory...something has to give.

I agree, she was better at 600 mg. That would be my choice over moving Humira to weekly but if this is small bowel disease maybe move Humira?

If calpro is elevated, I think she needs an MRE.
 

crohnsinct

Well-known member
She checked in with GI and sent him her labs. The only thing he mentioned to her was her low potassium and asked her to try to eat two bananas a day.

Based on her good report about symptoms he said ok to move to next level of prednisone taper which is add back in budesonide 9 mg daily starting today. Skip prednisone Saturday, use it Sunday, skip Monday use it Tuesday then stop and just use budesonide going forward.

The high CRP got his attention but he wants to wait for calpro before he worries about her Crohn’s. Hopefully we will have that result by her telehealth visit next Friday.
 

crohnsinct

Well-known member
Calpro posted and it is only 127. Double the 66 from 4 weeks prior but given the variability of this test still considered roughly the same.

I guess this could mean small bowel disease or is more evidence that those wonky labs could be adrenal insufficiency but also could be a crazy blip or something unrelated.

She has her appointment on Friday but I am guessing we are just pressing on and we will see how things process over the next 4 weeks.
 

Maya142

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Adrenal insufficiency would not cause such a high CRP...that is odd that her FCP is so low and her CRP is so high. Does she have any symptoms of an infection? Could her CRP still be high from having COVID? I know it's been a while but I can't think of anything else.

Adrenal insufficiency can DEFINITELY cause her electrolytes to be off and as she gets down to the physiologic dose of steroids, she needs to watch for symptoms. I would bring that up with her GI - it can be very serious and scary - as you know, my daughter has had many scary ER trips and hospitalizations where it has been a big issue.
 

crohnsinct

Well-known member
It’s not Covid because right after she had Covid her CRP .5. She says she had a little cough and maybe a little sore throat but nothing she would think about mentioning. She did say she fell and landed on her bottom and right after that her knee hurt. She twisted it or something. Not swollen or anything. Maybe that’s it? But it was also not worth mentioning until I was asking her about any illnesses or injuries so I would be surprised if it raised her CRP that high.

Today was her last dose of prednisone but she is back on 9mg of budesonide so I think she is above the threshold where we have to worry about AI?

Maybe the high CRP is the warning of an impending flare up? Maybe small bowel disease? Maybe nothing.

Symptom wise she is doing great. 114.5. Going 2-3 times a day. No blood. No waking at night to go. So who knows.
 
Did she have her covid jab in the end? Just wondering if that could have given her crp a funny moment. The highest I got was 90 and I felt seriously not well. Maybe the lab made a mistake? I’d be tempted to run it again if possible because doesn’t fit the rest of the picture and it is seriously high. You must feel like every time you think you can relax you get jolted with something else to stress about! Xx
 

crohnsinct

Well-known member
@Delta_hippo - look at you being all creative and thoughtful! I am impressed. Alas, she did not get the Covid vaccine so that's not it. But you get extra points for thinking of it ;)

I am going with blip for now. luckily she gets infusion and labs every 4 weeks so we don't have to wait too long to serif it continues.

It's just so crazy because like you, if her CRP get over 100 she is very unwell. This just doesn't make sense. Maybe lab error.....but all her labs were wonky so not likely.

Oh the suspense of it all......
 

Maya142

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I would also expect her to be very unwell with a CRP that high. I don’t think a fall would cause such a high CRP. Even if she has some inflamed joints, I wouldn’t expect a CRP that high. My kiddo’s CRP has literally been high for 4 years (only goes down on steroids) from her very refractory arthritis and I think her highest CRP was in the 40 range.

I agree that repeating it makes sense. Small bowel disease does sound like a possibility - has she had an MRE recently?

I missed that she is on Entocort/Uceris - yes 9 mg is way above the physiologic dose. Not sure what would cause the electrolyte issues then...
 

crohnsinct

Well-known member
@Maya142 She just started back up on the budesonide. Prior to that she was on 5mg prednisone. I think that test was at 10mgs though so that is surely able the physiologic dose right?

If everything comes back in line for the next round of tests I am going to assume it was the steroid taper.
 

Maya142

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If the test was at 10 mg then yes, it isn't because of adrenal insufficiency. The physiologic dose that your body produces is equivalent to 4-5 mg of Prednisone. If she was on 5 mg when the tests were done, I think it's possible that her electrolytes were off because of tapering.

So you think the steroid taper could have caused the high CRP? That does make sense. Perhaps CRP goes up faster than FCP? I know FCP can vary significantly, especially if the lab lets the sample sit there for a while, so could it be possible that that test was not accurate? I know generally she has symptoms first and then those markers go up, but small bowel disease could be pretty silent.
 

crohnsinct

Well-known member
O had her GI appointment today. He brought the R.D. in. He was thinking the low potassium and sodium were diet related but RD said she has been on SCD long enough and never low so it was likely not diet. He said he usually thinks diarrhea with these numbers but she reports she is good and fecal cal is good. So basically no clue, let's see what happens with next labs.

She asked him if she could drop SCD. She is over it. She doesn't think it helped and neither do I.

He said this was a MAJOR change and he wasn't prepared for it but agreed only because it will help her gain weight. He did say she has to continue to update weekly and get monthly labs including cal pro. He doesn't agree with us that it wasn't doing anything. He says that she was just so bad off that we didn't see the improvement and that it wasn't controlling disease but it was helping.

He said he will keep her on budesonide as her body seems to need some level of steroid. But we are switching to Uceris as Entocort releases in the T.I. and she needs it more in the colon. He said if she flares again we will stay away from steroids and go to antibiotic cocktail. I reminded him she is still on the antibiotics and he said we will increase dose.

So I am just concerned that she just came off steroids on Tuesday and now dropping SCD, how will we know if she flares which drop it is attributed to? I guess I am over thinking it. I will let him be the doctor.
 
Do you think she would agree to continue for a couple more weeks on SCD just so that you can at least determine if something changes, it's not because she dropped the diet? Mothers. usually overthink but that's normal.
 

my little penguin

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Please state to her
Design of experiment(DOE) principles
Independent and dependent variable
You can’t change two things at once abd expect to know what had an effect
Keep scd for 2-3 weeks
Then drop it like a rock
By then any effect from dropping pred should be known

See not mom talking
Just proven science
 

Maya142

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I do agree that it would be ideal if she could wait to stop the SCD. But she is a college student in her senior year and she has had to put up with a LOT in the last 5 years, including repeated hospitalizations, a hard diet and sepsis. What about doing it the other way - keeping her on 5 mg Pred + Uceris for two weeks while she stops the SCD? That might be easier on her.

Does she let you email her GI at all? It's something I would bring up with the GI but obviously she is over 18 and so I would guess you need her permission (my kiddo sometimes lets me write but she is NOT happy if I write without discussing it with her - but she is older than O). Perhaps you could discuss it with O and then share your concerns about changing two things at once.
 

crohnsinct

Well-known member
Next infusion and labs was 3/23. H&H are falling rapidly and quite a bit. Hematocrit is low but HGB is still in range. Calpro is 1,960.

No clue where we go from here but it is obvious to me that the low calpro was because of the steroids and it looks like she is steroid dependent. She is thinking maybe move Humira to weekly or raise her Entyvio back up to 600mg. You all know what I am thinking.

In other news her pilonidal cyst is back. It doesn't seem to be oozing and it isn't painful so probably just going to mention it in her weekly update and watch it.

Ironically her weight is good (117) and her frequency is still only at 2-3 times a day so either the diarrhea is soon to happen or something else is going on.
 

Maya142

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Frequency still up today and she started bleeding.

Miss Adult thinks she doesn’t have to tell the GI just yet.
Oh geez 😬 that is worrisome.

In other news her pilonidal cyst is back. It doesn't seem to be oozing and it isn't painful so probably just going to mention it in her weekly update and watch it.
Is she sure this is a cyst and not an abscess? Has her GI ever seen it?

I definitely agree with her that she needs either more Humira or more Entyvio. She's definitely steroid dependent at this point :cry:. I would think more Entyvio because it worked in the past but getting more Humira is probably easier and IF it works, it'll likely work more quickly.
 

crohnsinct

Well-known member
Entyvio actually never really worked. That's why we added Humira. After a few months on Humira they started pushing the surgery option. Then he added antibiotics and she turned a corner. But we weren't sure if it was antibiotics or Humira finally kicking in. But She was also on 600mg Entyvio so I definitely think the reduction kicked all this stuff off.

She says she had a good day today so no need to alert GI. I asked her what she was afraid of and she said she was scared was going to put her back on SCD. I said, "not likely, more likely he will put you back on steroids". But what do I know. I am just a mom.

She flies back to school tomorrow. Graduation is 3 weeks away. Here's hoping she can hold on long enough to get through graduation and get home.
 

crohnsinct

Well-known member
Oh and pretty sure it is a cyst. No GI has ever seen it but she did see a surgeon and had it dealt with surgically back in Sumer of 2017. It is in the same exact spot and looks exactly the same. Not a usual spot for fistulas so really thinking it is a pilonidal cyst again. We don't think there is an abscess yet because she doesn't have pain and nothing is oozing out but it is just a matter ofttimes I am afraid.
 

Maya142

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I thought the 600 mg of Entyvio helped? I know it didn’t do enough, but I thought it helped some. But it’s probably easier to get Humira weekly - we have done that several times (both girls have been on Humira more than once) and it should help faster.

Poor kiddo - will she need surgery again for the cyst? Is that something that's done in the office or is it done in an OR with sedation?

Congratulations O 🎉🎈🎉🎈- can't believe she is graduating!! I feel like she just started college! Is her graduation in-person or virtual? M's is virtual and she is really sad about not being able to walk.
 

crohnsinct

Well-known member
The 600mg/Q4 kept her out of the hospital so I guess it did something but her calpro stayed high so we added the Humira. Then a few months later scope showed that severe inflammation and they were talking partial colectomy. So I guess you could say it all helped some because prior to that it was total colectomy. Not that it much matters because both require an ostomy and as long as it doesn't involve a proctocolectomy there is still there chance at a reconnect down the line.

There is a procedure they could do in the office for the cyst but last time it didn't work and she needed to go in for surgery with sedation and then bed rest for a few days.

Her graduation is in person. They are doing it in the football stadium to allow for proper social distancing. 10K kids graduating...not likely the distancing is going to be great.
 

Tesscorm

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Just jumped in and saw the thread...

First, good news... Congrats to both O and M on their graduations! With all they've struggled through, it really is an accomplishment beyond the norm! Both moms must be very proud! :D

Now, re O, I do hope this is transient. I know it is likely more than a blip but, still hoping it can resolve!!
 
Just wondering if the thought of scd again is unbearable maybe worth looking at ibd-aid, it is similar but you can have oats, sweet potato, makes it a little more doable? Phase one is hot on blending or soft texture which might help her absorb some goodness if she is flaring. I’m not going to pretend it’s fun but I just thought if doc says go back on scd, maybe worth suggesting as alternative
 

Maya142

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I also have been wondering about other diets - isn't CDED more liberal? The SCD just sounds so hard to me and this poor kid is dealing with enough. I'm actually really impressed she stayed on the SCD so long.

I know neither Humira nor Entyvio has really gotten her away from the possibility of surgery. Even with the addition of abx and Uceris/Entocort. But since she is absolutely refusing surgery (or she was a little while ago) and she can't really be on steroids forever, I would guess upping the dose is her only option.

I did recently see a study about Xeljanz working on refractory UC patients. I can tell you from M's experience, a JAK inhibitor with an anti-TNF is way more immunosuppressive than Entyvio with an anti-TNF. But perhaps she needs that. Just throwing out ideas...

I know her WBC run low - have they ever considered immunological testing for her? Like they do for VEO IBD? Her case is just so refractory. M is in a similar place with her arthritis, and that is in the works for her. We've done some, but they're doing whole exome sequencing now.
 

crohnsinct

Well-known member
We did IBDAid years ago. I am fuzzy in the details. CDED is a tad more liberal in that once you get to the final phase you are allowed 2-4 cheat meals a week and allowed a serving of gluten each day. It is getting there that is the problem. First 6 weeks of EEN, then very limited diet etc.

I don’t think it is the particulars of any diet that really bothers her as much as the extreme restrictions. She says market shopping takes forever trying to read labels. Looking for recipes online is the same and forget trying to find a restaurant to eat at. It’s possible and she was a trooper for quite awhile but when it doesn’t even help it is hard to stay motivated.

She is back at school and reports frequency is down and no bleeding. Funny how that works.
 

Maya142

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I don’t think it is the particulars of any diet that really bothers her as much as the extreme restrictions. She says market shopping takes forever trying to read labels. Looking for recipes online is the same and forget trying to find a restaurant to eat at. It’s possible and she was a trooper for quite awhile but when it doesn’t even help it is hard to stay motivated.
Honestly, I'm SO impressed she did it all by herself for so long. My kiddo tried gluten free and barely lasted 4 weeks (though she was about 15 then so much younger). She ended up doing EEN for 16 weeks this summer and it was honestly truly horrible for her, mostly because her formula goes through a J tube into her small bowel so her stomach was always empty and she was always starving.

So kudos to O for doing the SCD for so long!! I'm guessing the answer to this is still a no, but would she consider EEN through a G tube once she is home?
 
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