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Heard from Doc today

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crohnsinct

Well-known member
She recovered nicely. She did get her appetite back a bit and ate a good amount for Thanksgiving and gained back the two pounds she lost. Her frequency was down to only 4 with only trace amounts of blood. So it was either a random good day or the shot really improved things.

She went back to school yesterday. No clue how today is going.
 
X

xmdmom

I'm glad she recovered well and really hope she gets at least a few weeks of improvement from the steroid injection.

I'm wondering if the doctor(s) talked to her about postponing the colectomy and trying experimental treatments. I can't imagine
how it would feel to have it in your mind that you're having a colectomy in a month and then have doctors reopen the discussion about trying other treatments first.

When the doctor talked about stem cell treatments, do you know if he was talking about an intra-arterial targeted injection or a systemic injection?
Do her doctors have experience with stem cell treatments?

From skimming this 2021 review, stem cells seem to work for Crohn's perianal fistulas but there seems to be much less info about stem cells efficacy and safety in the treatment of luminal disease (ex. colitis).

The authors say: "In conclusion, recent studies on local MSC injection for PFCD (perianal fistula) continue to support long-term efficacy while maintaining a favorable safety profile. The evidence for systemic MSC (mesenchymal stem cell) infusion in luminal IBD remains mixed due to marked methodological heterogeneity, and unclear safety profiles. Although further studies are needed to better establish the role of this novel treatment modality, MSCs are proving to be a very exciting addition to our therapeutic armamentarium for IBD".

Unless I'm missing something, stem cell treatment could only be used as part of a clinical trial or perhaps compassionate use. I can definitely understand her doctors wanting to preserve her colon and thinking, "Stem cells might work here," but I'd want to know about the safety and what the likelihood of benefit would be.
 
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Delta_hippo

Such a lot for her to get her head around and especially confusing when she had made some peace with surgery and it’s not far away. I don’t know what the implications of the steroids injections are for adrenals, bone density etc. in terms of can they keep doing it, bearing in mind how adamant she is school comes first.
Stem cell as far as I know is exploratory and potentially a game changer but comes with a big risk that they run the immune system right down and revamp so you have a decent period of serious germ avoidance because you are so immune suppressed that an unlucky encounter with a germ or fungus spore can be extremely serious. So it is a big risk for a big prize.
I think I would still be wanting a conversation about stelara either on its own or as an add on especially given her psoriasis- it is super expensive but she is surely a candidate having tried so many other options.
So difficult to know what to do for the best. I’m glad that at least the injection seems to have helped.
 
Maya142

Maya142

Moderator
Staff member
I think I would still be wanting a conversation about stelara either on its own or as an add on especially given her psoriasis- it is super expensive but she is surely a candidate having tried so many other options.
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My daughter's rheumatologist prescribed Simponi at the IBD dose for M - the arthritis dose is half the IBD dose. Her reasoning was that while she was prescribing it for M's joints, M also had IBD, so needed the IBD dose. I wonder if O's dermatologist could do something like that - the Stelara would be for her psoriasis, but since she has IBD, she would need the IBD dose. Since the other biologic O's GI prescribes is an infusion, insurance may be ok with it (or, well, they may not notice).

But I can't imagine her switching biologics if she is stopping one - I feel like that would lead to hospitalization if you stopped Entyvio and Humira and tried Stelara, unless she was on high doses of steroids and/or EEN and maybe even then. But if you switched Humira for Stelara and did EEN/steroids and continued Entyvio, then maybe that would work - IF she wanted to try it while waiting for funding for any sort of experimental treatments.

But to be honest, to me it sounds like she really does need the colectomy, though I'm very glad she is feeling better.

But if you do decide to pursue something experimental, I would definitely get a second opinion before proceeding with any sort of stem cell treatment - at Mayo or Cleveland Clinic or some big IBD program that has treated a lot of patients.
 
Tesscorm

Tesscorm

Moderator
Staff member
Just saw your updates now. Poor O... she really has battled lots!! I hope this gets her feeling decently for a little while at least!!

With your talk of stem cell, I recalled a member here who had had a stem cell treatment and had a great outcome. It was when S was initially diagnosed, so many years ago but you might be able to find his posts. From what I recall, the member had very severe crohns and the stem cell treatment gave him an incredible improvement. I believe his name was Patrick?? He had the treatment done at a hospital in Chicago... I even recall his insurance covered the cost! He posted daily updates after his treatment and gradually extended the time between his posts as all was going well... Is this ringing any bells for any of the older members?? tagging couple of the other members who may remember... @David @Jennifer
 
Tesscorm

Tesscorm

Moderator
Staff member
I think this is the thread…. Or, at least, I think it’s talking about the same treatment and dr.

Most exciting breakthrough that you're MISSING!!

Most of you may remember my blog from last year, where I underwent a stem cell transplant. At the time the protocal was to use your own blood, to get your stem cells for later use at the end of chemo treatment. This would grow a new immune system without the active crohns memory B cells that...
crohnsforum.com
 
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crohnsinct

Well-known member
Hi guys, sorry I haven't been around.

To answer @xmdmom:

- yes it is very difficult to come to terms with surgery only to have them say "wait". She is right now not interested but we got the pre cert for the surgery and things are getting real and I think she is getting nervous.

- they have not spoken to her about the "other" things they could do. It is a lot to process and she has finals and they just want her to get through exams and see what the steroid injection brings. When she comes home they will present their findings and thoughts.

- not really quite sure what stem cell treatments they are considering but they did say it would be under compassionate use and need hospital approval. They said that could take 6 months, then finding the stem cells and then the fundraising.

- we haven't gotten to the risk/reward discussion yet but the doc who treated that Patrick person definitely had some deaths in his study. I also think Patrick had some other reasons for the Stem cell therapy and it helping his Crohn's was just incidental but I could be mistaken, I haven't read his blog that closely.

To answer @Maya142

- I think the double biologic ship has sailed. Insurance has approved way more than anyone could ask them to. They have been stellar. They have told us that they will no longer approve double biologics for her. Not really sure they will even let her continue Entyvio Q4 going forward. You are 1000% right though, switching to Stelara mono therapy would be a bad idea with steroids or EEN and EEN hasn't worked this time and steroids are a no/no this close to surgery.

- The IR doc said that IF she does these other treatments, in his opinion she is still going to end up with a colectomy eventually...maybe we could extend it out 10 years. I just don't know if it is worth it.

So O had a really rough day yesterday. Frequency and bleeding up. Tried a second O/N feed at 4 cartons and nearly threw up at the end. Her weight is back down to 119.

Not sure where this leaves us.

Her next appointment with GI is 12/10...right after her last final.

Insurance has approved the surgery and hospital stay. Gulp! Things are getting real.
 
Maya142

Maya142

Moderator
Staff member
They could switch her G tube to a GJ tube... that would prevent the vomiting and should help with the nausea. IR would do the switch since it has to be done with fluoroscopy. But she's back at school, right?

Honestly, to me the colectomy seems like the right path for her. But I can't even imagine how scary it is for her and you. I will hope that this time next year the ONLY thing she has to worry about is exams!!

Sending big hugs!!
 
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crohnsinct

Well-known member
Thanks @Maya142 Honestly it is awful. First semester grad school. She is a Grad assistant. She is looking for an externship site, taking exams, wrapping up the semester with her grad assistant program, studying, meetingsetc. Then add on not feeling well and updating the docs on the details following the procedure and wondering what they are thinking, waiting to hear what the path forward is and whether or not the GI will approve the surgery and whether or not you are going to massively go off the rails before the last final....It is all really a lot.

As for how I am feeling? I still can't believe we are here. I am a bit numb with disbelief and holding my breath waiting for the team to decide if we are actually going to do this. I am sad for her. I know that most people go on to live perfectly normal lives and are very happy with their ostomy but just sad it had to come to this.
 
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crohnsinct

Well-known member
Hey y'all...not so quick update.

O has not had any response to the injection. What little glimmer of hope we experienced on Thanksgiving was just that...a glimmer. She went right back to her old ways and actually started bleeding more and losing weight. Her CRP is increasing. We are waiting for her cal pro.

We had her appointment with the GI today. He is not proposing any of those compassionate use measures. He has researched it and spoken with various department heads etc and in the end the risks far outweigh the benefits. Sorry if that got everyone's hopes up.

He would like to throw one last Hail Mary pass at this thing. He wants to change her dx to UC and order Tofacitinib. He and I were talking and I am sure that this move is due to all the positive results being presented at AIBD this week. Ofcourse, discontinuing her other drugs and moving to Tofa leaves her TI unprotected but he will pursue getting Stelara also approved but that won't be a game changer as far as the surgery goes because he is not expecting Stelara to rescue her colon. Besides, he can't very well order Stelara for Crohns of the small bowel if her dx is U.C.

O was upset and pushed the surgery but in the end agreed to try Tofa. The GI said we would know within three weeks if it was going to work. That puts us past the surgery date. So he agreed that we would assess at 2.5 weeks. But that is only if she starts taking the pills today...what are the chances it gets approved and orders today? O was very concerned and said, "But what if I respond now and then tank later...then it is another hospital stay and losing school etc". They said then you have the surgery in March during spring break and miss a week of school. That set her off. She said she can't and they offered to write all kinds of letters etc. Her GI also said that Tofa doesn't have a very high secondary loss of response rate like the anti tnfs.

On top of this we are trying Zofran a half-hour before tube feeds, periactin, Live Leaf and Pro Butyrate for her nausea and lack of appetite. All in an effort to get some weight on her and put her in a better position for the drugs to work and for surgery.

Yes, I am mad. I don't understand why Tofa wasn't presented sooner. We could have been so much further along by now. I don't understand why we wasted our time with the steroid injection, or the g tube for that matter. But what's done is done. Being mad won't help anyone. I am trying to be gracious and give him the benefit of the doubt. O was fighting the surgery vehemently. It wasn't until October that she came around. Maybe it just took him time to catch up.

O is sort of hoping Tofa doesn't work. She just wants an end to all of this.
 
Maya142

Maya142

Moderator
Staff member
Poor O!!! That is so confusing and hard to understand, particularly since she has fought so hard to avoid the surgery and has only just come to terms with it.

My daughter and my husband have been on JAK inhibitors. In fact, my husband did a Tofacitinib trial for AS. He was convinced he got the placebo but EIGHT weeks after starting it, he started feeling better. And his incredibly damaged and fused ankle actually became more flexible and less swollen. And he regained some spinal mobility. After the trial, he had to switch to a different biologic and has lost those gains.

M is on Upadacitinib and was similarly told that she might see improvement in a few weeks, but it would really take 6-8 weeks for her to know whether it was really working. She's doing ok now...she's on a double dose with MTX but is still seeing swelling in her fingers and ankles. BUT her IBD, which was flaring when she was on Cimzia, is now a lot better. But that really did take about 8-9 weeks. Upadacitinib or Rinvoq is the one in trials for Crohn's and is actually doing very well in trials. It's also doing well in trials for UC but an even higher dose (arthritis dose is 15 mg, UC dose is 45 mg induction for 8 weeks and then 30 mg. M is now on 30 mg). Tofacitinib or Xeljanz didn't do so well in Crohn's.

But the dose of Xeljanz used for UC is much higher than that used for AS. I believe it starts at 10 mg twice a day for induction and then 5 mg twice daily for maintenance, though the prescribing info says that 10 mg twice daily can also be used for maintenance if necessary.

Poor O. I'm so sorry she has to try one more thing. I'm going to hope it works for her.

As for Stelara, well, it should still be an option with a UC dx because it's approved for UC too!

Did she agree to surgery in March? I know she really, really doesn't want to miss school.

On top of this we are trying Zofran a half-hour before tube feeds, periactin, Live Leaf and Pro Butyrate for her nausea and lack of appetite. All in an effort to get some weight on her and put her in a better position for the drugs to work and for surgery.
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We tried Zofran and Periactin before tube feeds without success. Then Erythromycin. What worked for M was switching to a GJ tube, but she does have Gastroparesis. But I suspect O does have slow motility from being malnourished for so long.

Did you discuss moving to fewer cartons every day instead of more 3 days a week? I really think that is much more likely to help than anything else you are trying. I know it's a pain, but 2 cartons daily or even 6 days a week is more likely to work than 4 cartons 3x per week, based on all the motility research I've done.

Sending BIG hugs to O. I know she is tired and she is such a trooper. I still wish she'd consider taking next semester off. That would give her lots of time to try Xeljanz, get her weight up and to have surgery, if necessary. She's home soon, right? This weekend? Any chance they'd consider switching to a GJ tube?
 
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crohnsinct

Well-known member
Thanks @Maya142
She can’t just take a semester off. It would have to be a whole year as they move through the program in a cohort and the schools only offer the classes once a year.

Sorry I forgot to say, she is going to try 3 cartons 4 days a week. Then take it from there.

I think her GI is thinking she will do the 10mg indefinitely.

She agreed to try the Tofacitinib but is still really resisting postponing the surgery to March. Match surgery is just very inconvenient. She wouldn’t have much time to recuperate and they say 6 weeks to be back full strength. She literally just has a week off and they want her in ca for another two weeks after. She would have to cancel all her clinic hours and give her clients to other therapists. It’s just very bad timing. But she did agree to let the GI and social worker at least try to work something out with the university.

I have t done exhaustive research on Tofa but it being a JAK inhibitor makes sense that it might work.Plus the news coming out of AIBD is so so positive about remission results.
 
W

WiscoMom

This all sounds incredibly frustrating. A last-minute new plan is always so jarring. You have to deal with the new information along with the frustration that it wasn't presented sooner. I know our doctor can often be so linear in her thinking and actions, and I feel like sometimes she doesn't fully take into consideration the dynamic, longer term challenges that come from presenting a new plan so abruptly.
 
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xmdmom

I'm very sorry that the injection didn’t work, that she is losing weight and feeling ill and that the plan keeps changing.

I had never heard of Tofa so I googled. I see Tofa is approved for UC and not for Crohn's and that "studies in CD patients were disappointing and the primary end point of clinical remission could not be met in the respective phase II induction and maintenance trials." I would very much like to know if the positive results at this weeks conference were about Crohn's, and what specifically was found. It would not be surprising for drugs to work differently in UC and Crohn's given that they are two different diseases. If the new studies are in Crohn's, I'm wondering why the results are so much better than before-- what are they doing differently?

I saw an article entitled "Tofacitinib Induction Therapy Reduces Symptoms Within 3 Days for Patients With Ulcerative Colitis" so apparently it can work fast for some in UC.

This retrospective observational study of real word life experience in mainly UC patients found 36% had a clinical response at 8 weeks. Of the 26 patients followed for 12 months, 27% were in clinical, steroid-free remission. 32/58 discontinued because of lack of response or adverse effect. [All patients but 4 had previously failed treatment with anti-TNF (93%) and 81% had failed anti-integrin. ]

In a retrospective study of real world experience with Tofa and Crohn's, 46% had a clinical response at 8 weeks. "Tofacitinib was discontinued in 54.5% of the patients (42/76), most frequently because of no response (30.3%) or loss of response (15.8%)." [Most patients (98.7%) had previously been treated with a biologic therapy before initiating tofacitinib, with 48.7% having failed at least 2 prior classes of biologic therapy.]

The watch for 2.5 weeks is nerve-wracking. Did patients with Crohn's respond that fast in the new reports?

I also saw reports of "excess risk for herpes zoster (HZ) in patients who receive tofacitinib" at least in RA, especially with steroids. I don't know if this is an issue in a 20 year old but something to ask her doc about if she takes Tofa.

Sending hugs!
 
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crohnsinct

Well-known member
Thanks @xmdmom. Your perspective is invaluable.

The conference presentations are mostly about UC but there have been a few that presented CD data.


I get they they are super excited about 21% remission rate in a population previously medically refractory but those links do mention at the end of 8 weeks etc. I am concerned that 2.5 weeks just isn’t long enough to assess and we are going to find ourselves on 12/29 with him badgering her again to give it more time. At that point, she will likely feel like,”well I came this far so mine as well see it through”. Eight weeks will bring her to February and you know her, she tanks fast when totally unprotected and then she still isn’t in good shape for surgery and we risk it being emergent.

I get that her Crohn’s acts more like CD but we tried other great UC treatments that have proven to rescue patients prior to colectomy; CDED and Entyvio. And they didn’t work. I just don’t know why he thinks we should give Tofa a try. Why is he so determined to avoid surgery? I think because she is not in the best shape to have a good outcome right now. I am very glad she is coming home today. This way we could hopefully make all her favorite foods and maybe help her gain weight. I am thinking of cooking some of her SCD favorites because it did help a little.
 
X

xmdmom

21% only sounds good to me if there's no other option. I'm concerned too that her condition seems precarious. If Tofa doesn't work quickly,
she would seem to be continuing to be at risk for serious deterioration. How much risk there is, I don't know. If he said, the new studies were using a different dose or schedule, and the results with CD are so much better than previously, I think I might be more interested in trying Tofa.

"Why is he so determined to avoid surgery? I think because she is not in the best shape to have a good outcome right now." Can you ask him (and surgeon) if he's worried about her having surgery in her current condition?

What kind of therapy does she do? Is it a type that can be done virtually? I know speech pathology students has been doing virtual work with clients on line where I live (at least w pronunciation). If it's two or three weeks of an absence, it seems like the school can figure out how she could make it up or get credit another way. People get Covid and are out for weeks or have accidents. Life happens. I know she doesn't want to miss school but I'm guessing it is doable if necessary. It's not an elective procedure.
 
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crohnsinct

Well-known member
^ THAT! We all explained to her that the university must understand that things happen...people get unexpectedly sick, accidents, deaths in the family etc. They can't really expect you to never ever miss a day? But her school is notoriously inflexible. They would allow her to take medical leave and come back the next year but she's scared that's about it. They tried virtual therapy this past semester and they decided it doesn't work so all therapy has to be in person.

I could totally ask him but I think I am afraid that the real answer is, "No, I just want to use your daughter as a lab rat and prove that I can succeed" so I would rather think he is just really thinking of O.

He did keep saying that she is putting an artificial constraint on her treatment...the constraint being her schedule. I think that is totally unfair. This kid has gone along with the plan for 6 years now. He dragged his feet and then played with this and that therapy. QOL has to be a consideration! He should have moved sooner on Tofa...well on a lot of things but I am trying to be understanding.

She is just frustrated. Last. year he was begging her to get the colectomy and now this.

Oh well. We should know soon enough. Heck if it works he will be the best doc ever 😂

OH! I did think of one little option I am going to float by him. The surgery is 3-5 days inpatient. They said they want her local for another 1-2 weeks for follow up. Well she goes to school 1.5-2 hours away from a major children's hospital and a major adult teaching hospital. Maybe just maybe he could call over there and get her in for surgery for her break and then I will go down and drive her back and forth for her follow ups while she is in school. Ambitious I know. Many adults don't return to work for 4-6 weeks but you know O. She would do it.
 
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xmdmom

I think it's actually a disability issue. If you/she talks to the disability office, I bet the university would be more flexible.
I like your idea about surgery nearby if there's a good surgeon, team, hospital.

It would be amazing if Tofa works well! He's not going to be the best doc ever though from what you have written.
 
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Delta_hippo

I am so sad to read your update I wish the injections had helped and the constant changes of plan must be really messing with her mind.
I know O is super hard core but try and discourage her putting any more pressure on herself in terms of assuming she’ll push through recovery faster than planned to get back to school if she has the op in spring. My experience (albeit a bad emergency septic one) was slow and steady is the name of the game. For context, I wasn’t able to get to a new job induction a month after the op which cost me at least £10,000 in lost earnings. She is 20 years younger so may well bounce back faster, but there is something about listening to your body and going at the pace it needs not forcing a schedule.
It’s such a hard situation. The scd snacks and feeding up sounds such a good idea.
I am not sure why doc is looking at all this experimental stuff not surgery unless he is really sure he can’t reverse down the line but I thought that was still at a far from guaranteed but not absolutely ruled out stage?
If she is not in great shape for surgery in December how does that change by spring?
I would just emphasise the being kind and not putting on extra pressure. Even just the practicalities of getting used to the bag, trying a couple of different brands, getting her confidence up with the new regime. I can’t imagine doing that with an inflexible college demanding get back and perform by a certain date. Where is their compassion?
Maybe just focus on getting the most healthy calories in, what else can you do. I really hope the stelara does something for her. Poor thing.
 
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crohnsinct

Well-known member
Thanks @Delta_hippo Important feedback coming from one with experience.

BTW - it is Tofa not Stelara that we are resting our hats on now.

I do think they are thinking surgery will likely be permanent based on the results of the angiogram and MRI. Which reminds me.....I wonder what on earth he thinks Tofa is going to do for that basically dead segment of sigmoid colon....
 
my little penguin

my little penguin

Moderator
Staff member
Ohh I would point blank ask on that one
Also why delaying the surgery
Response rates for crohns since regardless
She has crohns and
Crohns affects the FULL thickness of the intestine cvs UC which only affects top layer
Huge difference in what the med may due if they only had success in UC
Sooo sorry she has to deal with all of this insanity again
 
Maya142

Maya142

Moderator
Staff member
I know a whole year sounds really long, but she could volunteer and get some valuable experience. But I understand that at 22, a year feels like a life time. My girls cried and cried when they had to miss school for a semester or year. But as they got better, they both said it was the best decision and the right decision. S only took a semester off. M took a year off and then some.

But she has given up a lot. She shouldn't have to give up school. This is a very last minute change and honestly, how likely is it to work? 21%? For a Crohn's patient? Isn't he also risking the fact that her TI disease could get worse? AND would he be taking her off two biologics and putting her on Tofa? Without EEN or steroids??

I am worried. Quite worried. I think surgery is truly the safer option. It may be, though, that he does not feel she is healthy enough for surgery. But then the priority should be to get her healthy enough for surgery ASAP. It should not be to try something new where the risk of tanking is much higher.

I second and third and fourth using the Office of Disabilities at her school. M would not have gotten through school without it. She also went to a very inflexible and challenging school, with a very inflexible and challenging major. She had some professors that were truly awful to her and blatantly discriminated. But the Office of Disabilities director fought for her. Advocated for her. Made them make accommodations for her. Some that we really thought were impossible - like actually switching a course in the major because it was only offered in the fall and she had to take the last fall semester before she graduated off.

She had open abdominal surgery in her first semester to place a J tube. She did this while taking Organic Chemistry. It was tough - she missed 3 weeks of classes AND three 5-6 hour labs. But with accommodations, she was able to make up the labs (even though she wasn't allowed to lift more than 10 lbs) and her organic chemistry class (as well as her other classes). The lab professors were incredibly kind. She had some very bad experiences at school - I won't lie. But she also found professors who really supported her and really fought for her, in addition to the disability director.

For one class, they even got her a graduate student tutor and the department paid for it, to help her catch up. There are all sorts of resources. She just needs to talk to them, with a letter from her doctor, explaining the situation. It's now also VERY possible for schools to record lectures - they did online semesters! M's school did not accept online courses/credits before COVID. And they first said recording lectures would be too hard, they didn't have the technology etc. But then COVID happened and they HAD to do it for ALL kids. So that showed professors that it was very possible to record lectures.

So even if she has to have surgery during spring break and misses two weeks, they should be able to accommodate her. By law, they are required to accommodate her!

The thing that is more challenging is that this is grad school and she has clinic hours and clients etc. So I'm not quite sure how that would work.

I am also not sure going to a local hospital will work - she would have to be an established patient there, wouldn't she? I mean, if he could get her in some time soon and she could meet their team, it may work. But they may also have different criteria for surgery (higher weight for example) and they don't know her history the way her regular GI and surgeon do. I'd be worried about switching to a different hospital for such a major surgery without really getting to know a GI and colorectal surgeon there.
 
Maya142

Maya142

Moderator
Staff member
He did keep saying that she is putting an artificial constraint on her treatment...the constraint being her schedule. I think that is totally unfair. This kid has gone along with the plan for 6 years now. He dragged his feet and then played with this and that therapy. QOL has to be a consideration! He should have moved sooner on Tofa...well on a lot of things but I am trying to be understanding.
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That is ridiculously unfair. She is trying to live her life. He is supposed to help her do that. She has tried MANY therapies that he came up with - some experimental. Ideally, she would be ok with deferring for a year. But she isn't. And in the past, he has pushed the surgery! So now she's ready to do it and he comes up with a last minute idea that might derail her whole grad school plan? And it's not as if it's a very effective treatment he's trying - 21%! That means roughly 80% of patients fail.

I'm sorry but that is just cruel to put on a 22 year old who is not feeling well, trying to juggle grad school and her disease and all that it requires and who is also trying to come to terms with the idea of a permanent ostomy. I think she should be allowed to think about Tofa, do her own research and then tell him whether she's willing to try it. She is an adult now and it is her decision. It's not like there's an 80% chance it will work - there's an 80% chance it will fail! And then she could really tank and the surgery could become emergent and the recovery much harder. It just does not make sense.

It's also an unfair amount of pressure to put on a young adult who is finishing up finals and her first semester of grad school. She should know this is 100% HER decision. Not his. Hers. If she's ready for the surgery and doesn't want to try a drug that worked for UC (which she doesn't have!!!), then she should be allowed to say no. Enough.

Sending BIG hugs to you and O. And I would like to be the first of the committee to say I'm willing to fly to CA and tell her doc what I think of him...if he's lucky, that's ALL I'll do.
 
Pangolin

Pangolin

This is a relatively uninformed opinion in relation to O's particular case, but if you ask me I would think that EEN plus surgery to get out whatever parts are beyond salvaging would be the best path going forward for now. You're already attacking the immune system on multiple axes, so I'd be surprised if adding tofacitinib would help.
 
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crohnsinct

Well-known member
Thanks guys.

O does have Office of Disabilities involved in her education. She has an accommodations plan and the letters the GI and Social Worker are writing on her behalf are going to the director of her program, the clinical director and the director of the office of disabilities so check, check and check.

She can not do telehealth for her clinic sessions because she can't practice across state lines even during Covid (I know some specialities they lifted that restriction but apparently not for SLP students). The university speech clinic did try Telehealth for local people and they say it just doesn't work. But oddly, O does have one Alzheimer client who they allow to do Telehealth so who knows.

I "think" the university's idea of accommodating her will be "letting" her drop out this semester and still rejoin the program next year. They typically do not let you rejoin unless it is a health issue. Of course that dropping the semester in March does not come with any credit of tuition what so ever.

O is home and she looks pretty good. Thin. We went to dinner as a family and calmly discussed the option of dropping the semester and rejoining the program next year...IF she had to. We talked about her working as an SLPA during her time off and then maybe reapplying to other schools closer to home even...but switching schools delays her education 2.0 years because they only admit to speech for fall so she would be admitted for fall 2023 (she missed the deadlines for fall 2022) and then join the class spring of 2024. So that wasn't very attractive but she does now admit that a year detour isn't the end of the world.

I would feel better proposing a detour for a drug that has a better success rate and safety profile though.

I need to stop researching. Things are getting more and more dismal.
 
Maya142

Maya142

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I "think" the university's idea of accommodating her will be "letting" her drop out this semester and still rejoin the program next year. They typically do not let you rejoin unless it is a health issue. Of course that dropping the semester in March does not come with any credit of tuition what so ever.

O is home and she looks pretty good. Thin. We went to dinner as a family and calmly discussed the option of dropping the semester and rejoining the program next year...IF she had to. We talked about her working as an SLPA during her time off and then maybe reapplying to other schools closer to home even...but switching schools delays her education 2.0 years because they only admit to speech for fall so she would be admitted for fall 2023 (she missed the deadlines for fall 2022) and then join the class spring of 2024. So that wasn't very attractive but she does now admit that a year detour isn't the end of the world.
Click to expand...
I'm SO incredibly proud of O for even considering taking time off. I know that is the last thing she wants to do. It shows maturity and strength and resilience.

But I have to say, I agree with you. If it were for a drug with a better success rate, it would make more sense to me. Or if it was to let her gain weight to get her ready for surgery in March, then it would make sense to me too. But Tofacitinib just...well, it hasn't done very well in trials.

Has her GI considered Rinvoq (Upadacitinib) at all? It is apparently doing very well in trials for Crohn's patients - M's GI says she has patients on it who failed absolutely everything else and are now doing great. It is also supposed to be safer than Tofacitinib. But it's not approved for UC or CD yet, so getting it would be a challenge. That said, we were able to get it for AS when it is only approved for RA. It did take some appealing, but it was possible.

Just so you know, M wants to send O a puppy for Christmas ;) !
 
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crohnsinct

Well-known member
Yes, Rinvoq is not approved yet and we don’t have time to fight nor do we think they will approve it. However, if Tofa works then as soon as Rinvoq is approved we will switch over to that due to the better safety profile. If it doesn’t work then switch back to Tofa. Because the JAK inhibitors are small molecules there is no concern about immunogenicity.

That M made me laugh out loud and O thinks that idea is spectacular! Remind me to thank her.

Pre Tofa blood labs show low WBC of 3.1 and elevated LDL. But he says still ok to start. We are trying diet and exercise to manage the LDL and if that doesn’t work start a statin if Tofa works and increases LDL further. If Tofa doesn’t work or it doesn’t increase LDL Then just continue trying diet and exercise.

Tofa is coming today and she starts tonight. Holding our breath.
 
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crohnsinct

Well-known member
Well it seems the steroid injection did something. O's calpro from last week was only 1170!

She started Tofa yesterday. She had both doses yesterday so today is the second full day. We are watching that toilet like hawks! 😂

I think we could pretty much rite off t he surgery on 12/30. She had her infusion and Humira last week. She is only 3 weeks post steroid injection. Her tank is well topped off. So in essence Tofa is the third drug on board right now and I suspect likely to make a difference. Even if only a little difference atto weeks post infusion, I really don't think the GI is likely to vote to move forward with colectomy. I think we are looking at postponing the surgery until March when we really know what Tofa can or can't do all by itself.
 
D

Delta_hippo

I am so pleased to hear that the FCP has come in much lower albeit still off the charts.

Saw this link and thought of O - just because she is so complex that could there be a level of IBD on top of the IBD or complicating it - and she has a weird response to diets where they look like they’re starting to help them they don’t. Anyway this is basically some research suggesting that if you do a microbiome test it can predict to an extent if a low fodmap diet will help. I don’t recall if she’s done low fodmap I know she’s done ibdaid scd and vegan and een.... honestly my heart breaks for her and she is regularly on my prayer list. So if we are in the game of trialling Hail Marys for a few months instead of op in a couple of weeks thought I would throw it into the mix.
www.medscape.com

Microbiota May Predict Success on Low FODMAP Diet

Distinct markers were associated with greater response to a low FODMAP diet in adults with irritable bowel syndrome.
www.medscape.com
 
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crohnsinct

Well-known member
For a very long while her GI was convinced her issues were IBS. He had her try numerous things. He even had her on Rifaxim for SIBO. Then that one infamous summer where he had her get a scope and saw the damage. Since then with all her sky-high cal pro's he has dropped the IBS theory although he does say that she still has some level of IBS overlay but thatcher issues now are clearly her IBD. We have discussed low Fodmap on many occasions but he has actually had us hold on it until her IBD is well controlled and in remission that way we will really know if it is working for any IBS she might have.
 
Maya142

Maya142

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Oh boy, I would not go down the IBS rabbit hole right now. She clearly has very high levels of inflammation...that fact that you're saying her FCP is "only" 1170 tells me that! I think once her disease is controlled, hopefully with Tofacitinib or possibly with surgery + Tofacitinib, then you can explore that avenue. But for now, I'd focus on getting the inflammation under control and gaining weight so that she is ready for surgery - whether it is a colectomy or a resection.
I'm actually quite surprised her LDL is high - she's a normal weight (still very thin, in fact) and isn't her diet pretty healthy because she's been on the SCD? Is it only a little high or significantly high?
I'm REALLY hoping the Tofacitinib helps - fingers and toes are crossed. I guess we won't know till her Humira and Entyvio start to wear off though.
 
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crohnsinct

Well-known member
Pretty sure surgery on the 30th is not going to happen.

O has been sick with some cold/virus thing. I took her to urgent care on Wednesday. They tested her for Covid and it was negative. Gave her cough med, decongestant and ear drops. Cough is getting worse. She has been taking Tofa for 3.5 days. Tonight she ran fever of 102.7 so she has to hold Tofa until she is fever free for 24 hours.

Pretty sure this interruption to her dosing is going to mean they ask her to give it more time with consistent dosing.
 
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Pangolin

Pangolin

I hope things go ok. When was her last Humira? Sometimes there's a rebound effect with these drugs, when the immune system is finally able to activate and make a fever again.
 
X

xmdmom

I would retest for Covid. Was the test pcr or rapid antigen? The antigen tests have a lot of false negatives. The pcr can also be negative early in the illness.

I think cugh and fever and immunosuppression warrant an X-ray.

Hope she feels better very soon and this ends up being nothing serious.
 
X

xmdmom

If it’s Delta Covid or Flu, there is treatment out there: Regeneron antibodies or antivirals ( tamiflu and the like). These both work best when given early on after symptoms appear.
 
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crohnsinct

Well-known member
Thanks guys. Yeah I am taking her to another urgent care today. The last one didn’t even listen to her lungs.

The Covid test was done 5 days into her illness maybe more because she came off the plane coughing. It was PCR at urgent care.

Temp down to 101.9. Not great but not awful.
 
Maya142

Maya142

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Oh wow - yes, I would do slow feeds and since she’s home, I would even consider asking about a GJ tube. That should help the nausea. Her motility is likely slower than normal since she has been malnourished for so long.
When M was at her lowest weight, we did feeds for 20-22 hours a day. Not super fun, but she did gain weight steadily…at least 10 -15 lbs in two months if I’m remembering correctly. BUT her crohns was well controlled so she was absorbing formula probably better than O is.
Really sorry to hear she is sick. Poor kiddo. I would definitely get her re-tested because of the new variant.
 
X

xmdmom

Not listening to her lungs is negligence in my book. Was it a doctor or a PA/NP?

Earlier this year, a PA told my son he had a mosquito bite on his wrist when he went to the office with a developing cellulitis even though he explained he was on Remicade. My son called me from the office and handed the phone to the PA so we could talk. After speaking with me, she reluctantly wrote a script for antibiotics. By the time I saw him (right after the visit), there were red streaks going up his arm. I called to speak to the PA who said she had seen the red streaks and insisted he should wait for the oral antibiotics to work. We went straight to the ER. Well long story short, it was a fast moving bacterial infection that required a few days of IV antibiotics. PAs and NPs are often unaware of the severity, rapidity and diversity of infections in immunocompromised people and the need to evaluate carefully and treat promptly. I hope she sees a doctor and in any case, make sure the medical provider gets that she is immunosuppressed. (BTW, when was her last Humira shot?)

If she had respiratory symptoms for several days and then developed a fever of 102, bacterial infection (pneumonia) on top of a virus is a possibility. Ask if she should have a chest Xray.

A map of how much flu is in each state: https://www.cdc.gov/flu/weekly/usmap.htm

PCR test should be positive after 5 days of symptoms but there still are some false negatives in any test; unlikely though.
 
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crohnsinct

Well-known member
I know right @xmdmom?! I thought that was a pretty standard thing. Flu swab, covid swab, strep test, maybe even mono. Look in the ears, check the lungs.

She saw an MD.

I wasn't allowed to go in the building with her due to Covid.

Interesting map. The rate of flu minimal is low BUT where she came from is low so who knows.

The only thing that has my ears perked is that she is getting worse and the fever came on 7days after first symptoms. And she started Tofa on Wednesday.

She almost fainted when she got up so I have her hooked up to a really slow feed 80ml/hour and 500 ml's. She needs to shower before leaving the house because we did a psoriasis treatment last night. I was hoping the GI would weigh in by now but nope. So I might disconnect her, get her showered and head over to another urgent care. GI is on vacation so waiting till tomorrow won't do me any good except maybe she will turn around by then.
 
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crohnsinct

Well-known member
I think the almost fainting is her lack of nutrition. She barely ate anything yesterday. Her BP is 90/60's. Her pulse 90's. So not the worst it has been but I am afraid we have a very skewed sense of bad.

The GI checked in this a.m. and asked about other symptoms and said, "nothing respiratory?" Which I thought was weird because she told him about the cough Wednesday before starting Tofa. She answered him and we were waiting to hear from him in case he wanted her to go to his E.R. where he could order labs, X-ray and fluids but nothing back yet.

She is sleeping with her feed going. She is not coughing in her sleep right now and that is amazing.
 
Pangolin

Pangolin

I don't know exactly if she's coming off Entyvio and Humira right now, but if she is this could be the immune system waking up and either fighting off all the things it would have been fighting off for some time or just overshooting as it wakes up (see Immune Reconstitution Inflammatory Syndrome). Of course, all of that could also be unrelated to what's actually an ordinary infection, which she may be extra vulnerable to right now.

When my son came off high doses of Remicade, he had a fever for a week, esophageal pain, and he could barely eat/drink for a while. A very distinctively similar thing happened when coming off Entyvio, except without the fever. Things did get better, mostly on their own (although he did get some amoxicillin the Remicade time, but it may not have done much), but it took a couple of weeks.

Be careful, and I hope things get better soon.
 
Maya142

Maya142

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Does her BP usually run that low? I'm asking because M's does, so if we saw that number we wouldn't panic. BUT if O's is normally 120/80 and she has cough and fever and is unable to eat, I'd definitely report all of that to the GI. The fever is what's worrying me - with a regular cold I wouldn't expect a fever or at least only a low grade fever, not going up to 102 F.

When was her last Humira shot? Because we found that within two weeks of combining a JAK inhibitor with an anti-TNF, M got an infection (in her case, it was a bad UTI). I wonder if the addition of Xeljanz when she already had Humira on board could have led to pneumonia or something. When we told one of the researchers M sees about how many infections she got when she was on an anti-TNF + JAK inhibitor, they said now there are studies showing that that REALLY increases the risk of infection. He said she was "proof of concept" after hearing about all those infections.

With O being malnourished and on a double dose of Xeljanz (well, double the arthritis dose) and exposed to so much infection at school/traveling, it could have happened faster.

Hate to say this, but if she gets any worse, I'd call her GI or even head to the ER...
 
my little penguin

my little penguin

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Given the upper respiratory symptoms
More than likely a secondary infection causing the fever
Never once had any symptoms Such as fever when switching Ds from remicade to humira to Stelara


When he switched from kineret to ilaris (autoinflammatory condition) he did flare since there was a gap due to insurance
He did get a fever during the gap but
Big but that’s part of auto inflammatory syndrome (sweets syndrome in his case )

really hope the Gi responds quickly
If not head to urgent care for swabs /chest xray
Labs
 
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crohnsinct

Well-known member
Ok we are at urgent care attached to ER. She is more comfortable with that. She just went in. I can’t go in with her. Darned Covid.

So to answer some questions her last Humira was 12/8. So still a fair amount left in her when she started the xeljanz on 12/15. Her Entyvio infusion was 12/9.

She does get fevers when terribly inflamed with Crohn’s. Her GI says it is a cytokines storm.

Just heard from GI. He said take her in to get chest x ray and to be listened to. Maybe other swabs as they see fit.

He also warned that if significant respiratory issues persist the surgery schedule will be affected. So he got his way. Not the way he wanted but still what he wanted.
 
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crohnsinct

Well-known member
Chest x ray clear. She fainted twice in x ray room. BP low and they won’t let her go. Giving her IV fluids now. She should perk up nicely.

Md said likely viral and just have to wait it out. Or knowing her Crohn’s could be inflammatory. No way to tell except wait and watch I guess. We’ll see what GI says.

Either way surgery likely off for December. I wish she would stay home and work on her health. I know it means a year delay but this is getting ridiculous.

The only ways I see her going backare:

1 wait for virus to clear then restart Tofa and cross our fingers. Work on nutrition.
2 go back to Humira and Entyvio because at least that was holding her. Maybe another steroid shot. Work on nutrition.
3 go back on steroids and wash out prior to surgery in March. Work on nutrition.

The tofa and steroid options concern me with omicron circling.
 
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crohnsinct

Well-known member
She can’t get a picc line outpatient. Plus he would not let her go back to school with one due to infection risk at college.

He did give the ok to start the antibiotics. Waiting to see if she should restart Tofacitinib once fever free for 12 hours (he reduced wait time).

O just stopped her Humira and Entyvio but is still within the dosing period so not technically withdrawn yet. Her chest x ray is clear so no tuberculosis.

I honestly think she has run of the mill, run down from finals, college crud.
I am glad we ruled out scary infection given the pandemic and tofa start up.

The fevers could also very well be inflammatory fevers due to her Crohn’s inflammation and the cytokine storm. She has definitely had this before.

Hard to Susa out which it is, viral, bacterial or inflammation. So we will methodically work on each and wait and watch.

GI and surgeon are both on vacation but GI started an email thread for the GI team to post updates and thoughts to.
 
X

xmdmom

Is she in the hospital or at home?

Who prescribed the antibiotics for what?

Hope the IV fluids helped and that whatever is causing this will settle down soon.
 
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crohnsinct

Well-known member
She is home. The md at the urgent care prescribed them and to answer for what….because she is stumped and wants to treat “whatever” it is.

GI said start them in the morning.

She got a bag of fluids and felt a lot better.

At 3am woke to go to bathroom and was cool as a cucumber and ready to party.

This is so weird. Just like that time in the fall when she was in the ER. High Fever, vomitted. Next day fine.

So now I am leaning towards blaming her Crohn’s and the cytokine storm from inflammation and of course don’t want her to take the antibiotics.
 
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xmdmom

I don't like the idea of taking antibiotics for an unknown source of infection. [Yes this is sometimes done after drawing blood cultures and checking for other sources of infection (sputum, urine when indicated) in people who are neutropenic (neutrophils <500) source.] I could not find an algorithm for acute fever in non-neutropenic immunosuppressed person. I really would like to see some recommendations for the evaluation and treatment of fever in patients with IBD on the various meds that are immunosuppressants. That would be very useful.

Did they check a CBC and blood culture?

I'm not very familiar with cytokine storm and not at familiar with c.storm in Crohn's. What causes it in Crohn's and what is its usual course and treatment?
 
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crohnsinct

Well-known member
Me either @xmdmom !

No reason given other than she wants to try to help O get better and she has been sick for awhile. No tests done. Just chest x ray. I am annoyed.

As for the Crohn’s inflammatory fevers she had them that summer she was in the hospital. They were awful. They had her in broad spectrum antibiotics via IV and searched and searched for infection but found nothing. So in the end they chalked it up to Crohn’s inflammation fevers. I never really asked about the mechanism but will definitely ask when the GI gets back.

Just what we needed two weeks before surgery! Grr!
 
Maya142

Maya142

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O just stopped her Humira and Entyvio but is still within the dosing period so not technically withdrawn yet. Her chest x ray is clear so no tuberculosis.

I honestly think she has run of the mill, run down from finals, college crud.
I am glad we ruled out scary infection given the pandemic and tofa start up.
Click to expand...
Well, from our experience, I think the infection could be from her immune system being too immunosuppressed with Humira in her system and then starting Xeljanz on top of that. And then add in being run down with finals, malnourished and extremely inflamed.

In terms of a cytokine storm, I read a little about it after M was hospitalized in the fall. She felt ok, besides severe joint pain, but her routine blood work came back with a high WBC and a CRP of 130. Her rheumatologist said they do not see CRPs that high in psoriatic arthritis or AS and she and her PCP and the GI on call (her GI was away) were all concerned about an infection, so she was admitted and they did a billion blood tests.
But over the course of 6 days (she was only admitted for 2), her CRP fell from 130 to 60 to 19 to 11, when 0-3 was the normal range (11 is high but hers is literally always high due to uncontrolled arthritis).

She did NOT have fever like O, but the doctors at the hospital thought that she had had a mild virus and that caused an overreaction of her immune system considering she was already quite inflamed (arthritis has been flaring for months) and has an over-active immune system. They did not start abx because all the blood work and cultures they took did not grow anything and her WBC went down to normal.

Now in her case, it was not severe enough that it would be considered a cytokine storm, but that's essentially what a cytokine storm is, a severe immune reaction, and in O's case, it could be just that she's so inflamed that her inflammation is through the roof and causing fevers and vomiting but given that she has a cough, I'd guess she has a virus too.
 
Maya142

Maya142

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Either way surgery likely off for December. I wish she would stay home and work on her health. I know it means a year delay but this is getting ridiculous.

The only ways I see her going backare:

1 wait for virus to clear then restart Tofa and cross our fingers. Work on nutrition.
2 go back to Humira and Entyvio because at least that was holding her. Maybe another steroid shot. Work on nutrition.
3 go back on steroids and wash out prior to surgery in March. Work on nutrition.

The tofa and steroid options concern me with omicron circling.
Click to expand...
I wanted to add - I REALLY wish she would consider taking time off. If not, then is she masking at school? I know her school has not had strict masking or testing requirements - at M's school, ALL students are masked, vaccinated and tested once a week (though now with the new variant, they might be going back to twice a week). And now they are mandating boosters as well as the first vaccines.

We were told that JAK inhibitors like Tofacitinib essentially disable the body's "first line of the defense" to the virus. So if M (or O) were to get COVID, it could be very, VERY bad. I know O has had COVID before but this variant is extremely transmissible and her body is not in the best shape because of the inflammatory load. And she is malnourished and her weight is going down very quickly.

I know she really does not want to miss a year, but at this point, given how sick she is, I think it makes the most sense. She could very easily end up having emergent surgery at a hospital by school and lose the option of a reconnect in the future.

If that's not something she will agree too, then perhaps EEN till Tofacitinib kicks in (I know, she'll hate me for this!!). Or another steroid shot. I would stay away from systemic steroids (i.e. Pred) because of the additional risks of infection.
 
X

xmdmom

I don't know what risk Tofa poses in terms of getting sick with Covid-19 but it apparently can be helpful in hospitalized people sick with Covid-19 pneumonia according to this New England Journal of Medicine study which says: "In this randomized, double-blind, placebo-controlled trial involving hospitalized patients with Covid-19 pneumonia, tofacitinib was superior to placebo in reducing the incidence of death or respiratory failure through day 28."
 
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crohnsinct

Well-known member
Well O’s fever broke last night. Woke up today and perfectly normal. She was going to start Tofa this am.
She got a call from our county health department. She immediately freaked thinking she actually does have Covid. But guy said they got a call from a health provider in the state she goes to school in. Apparently she tested as having severe chicken pox.

Results never posted to her portals and GI said start even though results not back.

GI has spotty reception where he is but said hold tofa cuz tofa and chicken pox don’t mix well.
 
my little penguin

my little penguin

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Big hugs
Is she starting the anti viral for chicken pox ???
If I remember there is one
Ds was exposed to shingles while on 6-mp so Gi at the time mentioned the anti viral would be given if he ever tested positive ..

is she doing 24 hour feeds with the pump in a backpack ??
That can help with the weight some while your Gi figures things out
 
my little penguin

my little penguin

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If you or your child are at high risk of complications, your doctor may suggest an antiviral drug such as acyclovir (Zovirax, Sitavig). This medication might lessen the severity of chickenpox when given within 24 hours after the rash first appears. Other antiviral drugs, such as valacyclovir (Valtrex) and famciclovir, also may lessen the severity of the disease, but might not be approved or appropriate for everyone.

In some instances, your doctor may recommend getting the chickenpox vaccine within three to five days after you've been exposed to the virus. This can prevent the disease or lessen its severity
Click to expand...
From

Chickenpox - Diagnosis and treatment - Mayo Clinic

www.mayoclinic.org www.mayoclinic.org
 
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crohnsinct

Well-known member
I have no clue what he is doing…on vacation…spotty reception and all.

The weird thing is she has been sick for so long but no rash yet. Plus she was vaccinated although I know that isn’t 100%.
 
X

xmdmom

So how many days ago was the positive varicella test? Was it a nasal swab?

How high was her fever yesterday? How is she otherwise feeling?

If her doctor is not available, is there a covering doctor who answers calls for her doctor at night? She needs a physician to figure out
whether she needs antiviral therapy (IV or oral) and/or more evaluation. I would think her GI doctor should call an Infectious Disease specialist to find out what to do. If there's a choice, I'd choose antiviral therapy.

Varicella can occur without rash (You know that!)--- and usually poses a diagnostic dilemma.

Sending lots of hugs!
 
Maya142

Maya142

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She should REALLY do 24 hour feeds - or 20 hour feeds (to give her some time off the backpack - that helped M feel a little freer) daily to get her weight up. I don't think there is any way to do the surgery till she gets her weight up and I'm quite worried she will lose more weight if she tries to go back to school. Though I guess if she has chicken pox she'd have to quarantine anyway?

Is there no covering GI who can give you advice about the chicken pox? Or refer you to Infectious Diseases? I'd call the on-call GI or if absolutely necessary, take her to the ER.
 
Jo-mom

Jo-mom

Location
Toronto, Canada
Keep thinking about O. Hoping for a decent update, one with some good news. I think all of us parents are on the same page here - after years of following this thread, there's a connection of some sort. Feel like some sort of big crohn's family. Hugs.
 
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crohnsinct

Well-known member
Hi guys! Sorry to disappear like that. I got really sick with some unknown virus (probably caught it from O) and working with the homeless during Covid, winter and rainy season while sick left me crawling into my bed at the end of every day. Also this situation with O is VERY frustrating and it has been hard for me to actually sit down and recap nicely.

For starters, the chicken pox result that the GI had was the IGG test that just tells you if you have had chicken pox, been vaccinated or have an active infection. That was positive. But there is another test the IgM test that tells whether there is active infection or not. No one looked for those results and GI said based on the Igg good to restart Tofa and she did. That was 12/21. Not nearly enough time prior to surgery to accurately assess whether or not the drug was working but we stuck with it.

Her weight stayed stable at 114 isn so that was decent news. Bleeding decreased. BM's down to 4 or so a day. Tofa cleared her body psoriasis so that was very exciting.

Day before surgery the GI pressured O to cancel. Not enough time on Tofa and early results were encouraging blah blah blah. She was VERY conflicted but in the end cancelled.

Next day she went 12 times and since has been up and down but even the fact that she has some 4 a day days is good. Bleeding is picking up. Psoriasis is back. She is eating better and had gained to 115.5 but not sure if she maintained that.

Warning getting graphic here...the thing with her 4 day days is that her stool is flat ribbons. So even if she is down to 4 there is still obviously a lot of inflammation. Last summer when O was admitted I told the inpatient GI that I was surprised given she was going on 4 times a day and she said, "that could be because the inflammation is stopping things up and not because she is healed". So I wonder.

GI says plan if Tofa doesn't really kick in is to go on steroids to get her through her semester. Plan after steroids? Stelara (yes the drug he avoided because he highly doubted it would rescue her colon), if Stelara doesn't work then maybe Stelara and Tofa. Clearly this guy will not give up. IDK why. He was begging her to get the colectomy last summer.

We asked him to help us get in to another doc for a second opinion. He presented her case (not what we wanted and we didn't see what he said) and other doc wrote his "opinion" via email. He agrees with Tofa use and has had it work in some similar patients. He says give it three months and if still not working surgery is indicated.

O is very upset. She feels like this is just going to be another year of limping along until next December when she can have surgery.

We are pursuing a second opinion at a hospital about 2 hours from school. Well known adult hospital. She just hasn't gone there previously because she was scared adult docs would say surgery but since she is there already and has accepted it se is willing to try another doc

O goes back to school Sunday...we hope...if flight isn't cancelled.

Thanks for checking in on us. I am going to go get caught up now.
 
D

Delta_hippo

Thanks for the update had been wondering about you and your little girl. I am relieved at the idea of the second opinion at adult hospital as toga before stelara did seem a little odd to me and I also feel they have got a lot caught up in the whole school-comes-first, O is super resilient and can cope with anything narrative (cancelling major surgery the day before?!) and I think she needs an opinion from an expert who will just look at the health side and then say “this is what I would do if I was in your shoes”.
So staying hopeful for tofa.
If she goes back on steroids please ask about calcium and anything it needs to ensure supports bone density she has just been through too much already to have those problems turn around and bite her down the line.
Hope you are feeling better and on the mend.
There is new research ongoing all the time- maybe keeping going and especially if tofa helps will turn out to have been the best thing.
I’m rambling because I feel so mixed with your update - sorry she keeps getting put through difficult situations and worried and hopeful and unsure what’s best.
Lots of love to you all.
 
Maya142

Maya142

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I think the second opinion is an excellent idea. I don't know why her GI has gone from pro-colectomy to anti-colectomy - did you ask him why?
Studies have shown that combining JAK inhibitors with other biologics causes infections...although IL-23 inhibitors are not very immunosuppressive, so that would probably be the safest drug to combine Tofacitinib with. But it might be hard to get both approved since neither is an infusion.

I'm worried @Delta_hippo is right and also hope her GI is not pushing this because she has wanted to put school first in the past and has been incredibly, incredibly resilient. I am sure she is exhausted by now.

On steroids...is that not a worry with the new COVID variant? We were told that JAK inhibitors put you at high risk for COVID because of the mechanism of action. Therefore if you do get it, it can be very bad...even though Omicron is a mild variant for the most part. And of course, they have to be stopped for a week after the COVID booster (in case she has not gotten her booster). Tofacitinib is even more immunosuppressive than Upadacitinib which M is on, so I do worry about that. I hope O is wearing a mask at school, even if her school does not require it.

Hope she will continue her tube feeds to gain some weight though I'm glad she has gained a little. Poor kiddo. She has been through SO much. Sending big hugs.
 
C

crohnsinct

Well-known member
Hey y'all….here is a not so informative update;)

O went back to school. She appears to be doing pretty o.k.. Frequency stuck at 4-6, some bleeding and weight went up to 115/116 but is stuck there.

She had been tolerating food much better and some formula feeds but recently lost her appetite and is getting full quickly. Could just be run of the mill type stuff or maybe her IBD.

Her labs two weeks after starting Tofa were much improved. Her calpro was 957! We were cautiously optimistic because…well….this is O. And 957 is high. And there is variability in that test. And there could still be some synergistic effect of the leftover Humira and Entyvio and steroid injection.

She recently told me she had another one of those days with the chills and sweating and fever. The cytokine storm type thing. She just stuck it out at home and it passed. Maybe it was kid yuck, maybe her IBD….who knows.

Her next set of labs is coming up within the next week so I will have a lot more info then.

She has a second opinion booked for first week in March. However, if calpro drops significantly we might cancel and wait and see.

Thanks for checking up on us!
 
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crohnsinct

Well-known member
Yep. Just Tofa and formula. Last dose of Entyvio and Humira was December 8th.

Blood labs posted. H&H are lowest they’ve been in a long while. CRP is elevated as are platelets.

Waiting to see what calpro is.
 
Maya142

Maya142

Moderator
Staff member
Is the second opinion a televisit or an in-person visit? I would honestly keep it, even if she’s doing well. It might be useful to have another set of eyes on her case. We’ve seen multiple rheumatologists/researchers for my younger daughter’s very refractory arthritis and it has helped a lot.
In terms of losing her appetite - does she get full fast? Being malnourished slows your motility. Perhaps she could increase the number of days she’s doing tube feeds?
 
A

asadmom

Pangolin said:
I know they work out ok for some people, but the safety of these anti-TNFs really concerns me. Honestly I just don't think they're very safe overall--I've just read way too many reports on forums about them inducing lupus or psoriasis or worse. My son had red eyes and eye pain from Remicade. We went to an ophthalmologist, and nothing but dry eyes was diagnosed. Everything went back to normal after Remicade. Still, I wonder if it would have progressed to scleritis if he'd stayed on the Remicade.

Don't let them tell you "this is just the disease getting worse" when it's really a drug side effect.
Click to expand...
This is exactly what my son has! He has red eyes, constantly, and also his eyes get so dry by the afternoon. His eye doc said his eyes are fine, just allergy so give him allergy drops. I kept asking them if it's a side effect of Humira and the response was "never heard of it".

I am so glad to have come across your post. How did your son come off of Remicade?
 
my little penguin

my little penguin

Moderator
Staff member
@asadmom
Crohns can cause inflammation of the eyes
Especially is gut inflammation is not under control which sounds to be the case for your son
Every child with crohns has to see an ophthalmologist - eye MD(not optometrist )
They will screen for iritis ,uvetis and epi- scleritis
Yes allergies can cause eyes to be red
But an ophthalmologist needs to rule out the more serious things
You need an eye specialist

there is also sicca syndrome (dry nose,mouth and eyes )
Ds and dh (no ibd) have sicca syndrome
They both have severe allergies -so eye drops for allergies
He and dh also have limbal vernal keratoconjuntivitis - another inflammation condition which can need steriod drops

In addition if Ds has epi scleritis when his crohns is not under control - that requires steriod drops
when flaring

my point is Red Dry eyes even in the same person can be from a variety of reason
And most of the time drugs are not to blame

please have your child see an ophthalmologist MD
 
my little penguin

my little penguin

Moderator
Staff member
Did want to add once Ds gut /joint inflammation were under control - all extra eye inflammation requiring steriod drops has been gone
Only needs allergy eye drops and dry eye drops
 
C

crohnsinct

Well-known member
Calpro is back. 7840. So my guess is Tofa isn’t working. I am not even going to play our favorite game of outguess the GI. The way I see it we have two choices to make:

1 - EEN (which last round didn’t even work) or steroids
2- add mtx, add or switch to Stelara
3 - try to hold out for new drug while on EEN or steroids. But really what’s coming? Rinvoq but not likely to work if Toda didn’t work.
4 - cancel spring break plans and have surgery.
 
A

asadmom

crohnsinct said:
Calpro is back. 7840. So my guess is Tofa isn’t working. I am not even going to play our favorite game of outguess the GI. The way I see it we have two choices to make:

1 - EEN (which last round didn’t even work) or steroids
2- add mtx, add or switch to Stelara
3 - try to hold out for new drug while on EEN or steroids. But really what’s coming? Rinvoq but not likely to work if Toda didn’t work.
4 - cancel spring break plans and have surgery.
Click to expand...
I was going through your journey this morning and you, your daughter and your family have been so incredibly brave and resilient. This type of burden is not suitable for a human yet you continue to march on, share and help others learn. I feel ashamed for not being able to help but I will continue to pray for you and your daughter.
 
C

crohnsinct

Well-known member
They looked at stem cell transplant for her and the oncology department at Stanford said it was too risky when colectomy is a perfectly acceptable and safer option. But thanks for trying.
 
Maya142

Maya142

Moderator
Staff member
Wow I didn’t even know it could be that high!!
As for what’s coming out, Risankizumab should be approved in the next year. It’s brand name is Skyrizi and it is approved for psoriatic arthritis and psoriasis so far. It’s an IL-23 inhibitor and beat Stelara in terms of arthritis and psoriasis. But the IBD dose is a 600 mg induction IV and then 360 mg every 8 weeks. But the current approved dose for psoriasis is 150 mg…so it’s not like you can really use it off-label at the right dose.

It might be a great option for O but I don’t think she can really wait for it. According to my daughter’s doctor, the FDA is very behind in terms of approving drugs, so it could easily be more than a year. BUT it may be a great option for after surgery when it’s approved - it’s supposed to be magic for psoriasis too.

I do think her only option left is surgery…Stelara could take 6 months to work and if Entyvio AND Humira don’t work then I’m worried Stelara won’t by itself and she’ll end up septic.

I do think a second opinion is a good idea - are those before spring break or after?

I know she really doesn’t want to miss school but I think doing it during spring break is the best option. Plus, this is what her accommodations are for. M missed 3 weeks of college when she had her J tube placed - an open abdominal surgery and even went back to organic chemistry lab and her professor worked with her to make up all the labs she missed.

O’s surgery is more major but with support, I am SURE she can do it. I wish she didn’t have to though. Poor kiddo.
 
Pangolin

Pangolin

my little penguin said:
@asadmom
Crohns can cause inflammation of the eyes
Especially is gut inflammation is not under control which sounds to be the case for your son
Every child with crohns has to see an ophthalmologist - eye MD(not optometrist )
They will screen for iritis ,uvetis and epi- scleritis
Yes allergies can cause eyes to be red
But an ophthalmologist needs to rule out the more serious things
You need an eye specialist

there is also sicca syndrome (dry nose,mouth and eyes )
Ds and dh (no ibd) have sicca syndrome
They both have severe allergies -so eye drops for allergies
He and dh also have limbal vernal keratoconjuntivitis - another inflammation condition which can need steriod drops

In addition if Ds has epi scleritis when his crohns is not under control - that requires steriod drops
when flaring

my point is Red Dry eyes even in the same person can be from a variety of reason
And most of the time drugs are not to blame

please have your child see an ophthalmologist MD
Click to expand...
I know you're just speaking in general, but in my son's case it was 100% Remicade-induced, without any doubt. Fortunately it did go away shortly after stopping Remicade.
 
C

crohnsinct

Well-known member
Thanks @Maya142 Her appointment is set for the first day of her spring break 3/7. It isn't actually a second opinion as much as we are meeting with this GI to transfer her care. We chose them because they have a top notch colorectal surgery team. Fingers crossed.

As for accommodations, we checked with the school. They will "allow" her to withdraw from the program for a year and then rejoin next spring. That IS the accommodation. Because usually if you withdraw you can't come back. A lot of the restrictions are because she is seeing clients in clinic now and there are strict requirements with regard to licensing about how many hours they have to practice with supervision etc. She has her set 4 clients a week and an eval slot but if she misses three weeks she will be short about 15 clinic hours and will have no way to make that up. So while the program is very sympathetic to her predicament, they have only granted her permission to withdraw (losing her tuition for the semester) and rejoin next January.

She will be devastated as she also just found an internship close to home that was supposed to start next January. This internship is the last thing they do before they graduate. She didn't like the placements that the school had and went out and found this amazing place by us, contacted them, interviewed and they agreed to take her on as an intern. They even said if it works out, they would keep her on for her fellowship year! But if she has to drop out, she also loses that internship.

This all stinks because she was ready for the surgery and he pulled the rug out from under her. Now, I am not even sure her heads in that space anymore and she would have to do a lot of work to get back to that place. Especially given he stakes are a lot higher now.

She has been talking to other ostomates and they tell her she is really dreaming if she thinks she will have the surgery and return to school and clinic in two weeks. They are telling her it took them almost a full 6 weeks to get to feeling capable of handling full days at work etc. But if I had to bet anyone would do it, my bets would be on O. I would probably go back to school with her and help her for couple of weeks, until she is eating regularly anyway.

I can't wait to hear what her current GI has to say about the situation. It honestly could be anything from stress to surgery.
 
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