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Perspective - Covid-19 and our ibd kids

From what I have seen so far, no children have died from this virus. The vulnerable people are older, and have an underlying medical condition already. Smokers with lung problems already are more vulnerable also.
Children seem to deal with it quite well.

It is estimated that 85% of people who contract the virus will only mild symptoms. Leaving 15% that have moderate to severe symptoms. The overall death rate is somewhere below 2% probably closer to 1%.

It is difficult to know the actual death rate as that 85% is unlikely to ever seek medical help in the first place. That makes the actual number of people who have the virus virtually unknowable.

Confirmed cases are verified with the test. It was only in the last week or two the new, non- faulty test has been available. Prior to that under 500 people in the entire U.S. had even been tested.

There are likely thousands who have the virus at this time. You would need some draconian measures to prevent passing this virus around. It isn’t as catchy as the flu virus but still pretty contagious.

Regardless of how much it spreads, it is a concerning virus but really not the big bogeyman it is made out to be.

Old people that smoke and already have serious health problems are the group that need to take it very seriously. Not sure if I am in that group or not. I am pretty old and definitely have the wonky immune system and smoke. On the other hand, I have no current health problems.

i am not too concerned about it personally. Plan for the worst, hope for the best.

Dan
 

Tesscorm

Moderator
Staff member
I've got to admit, this COVID-19 has me sooo confused! I'd be really interested in hearing what others are thinking...

My instinct truly is not to be panicked about it. I lean towards seeing the stats/comments above as confirmation that prevention is warranted, especially for those with suppressed immune systems but all out panic is NOT necessary. While I did buy one pack of masks (mostly because both kids will be going to hospitals soon for MRIs and appointments) and some vitamins, I am still using pubic transportation every day, doing my same socializing and planning to go on a booked trip to Florida in two weeks.

HOWEVER, then I read stories of schools being closed, sports events, conferences, etc. being cancelled, airlines grounding planes, evacuation flights, recommendations for non-essential travel to be cancelled, companies having staff work from home, cruise ships/resorts being quarantined and I've got to wonder WHY? If the stats/comments (and my gut instinct) is correct, why are governments and organizations going to this extent? I find it hard to believe that there are that many well informed, knowledgeable people within the top levels of government and corporations 'panicking' and over reacting just like the general public. And, if they aren't 'panicking', then should I/we be more concerned??
 
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Tesscorm: The issue right now is trying to keep the spread slow enough that hospitals are not overwhelmed. Many of the 15% who do get moderate to severe symptoms need to be in the ICU for several weeks, and hospitals don't have the space (or personnel, especially if medical staff are sick or quarantined) to take on many patients at once. There's also a danger to patients without COVID-19 if hospitals are full.

I feel exactly like you; my tendency is never towards panic, and I know that this virus has not been hitting young people very hard. But I still worry about E with her immune suppression, and I can't find much about how COVID-19 is affecting young immune suppressed people. We asked her doctor if she should stop methotrexate for a while, and her doctor said no, and just forwarded us the guidelines about washing hands, etc. Not especially reassuring... I'm also worried about my parents and inlaws, since they are all in their 70's.

In the meantime, both my kids are still in school every day, and my husband is still working in the emergency department. We did cancel our planned trip to Disneyland that was scheduled for this weekend. We're stocked up with 4 months of all our meds, and have enough food that we could do fine if quarantined.
 

Tesscorm

Moderator
Staff member
pdx, yes, that all makes sense. The impact of the virus is hitting so many areas of our economies and social infrastructure.

I work in a finance company and we are seeing lots of travel, meeting, conference cancellations... and, of course, we're seeing the stock market drops! Most friends are saying their companies are in the process of preparing for work-from-home scenarios. And, I've noticed the commuter train seems to be a bit emptier... I think it's a bit early for March Break vacations so I'm thinking some people are already working from home.

However, with March break still coming, I've only heard of one person changing their travel plans (due to family member with concerning health risks).

As I'm sure everyone is finding, I can't locate any hand sanitizers, wipes, alcohol, etc. Everything is sold out! Does anyone know if vinegar is a good cleaner for viruses?

I did suggest that my mom stock up on her meds but her pharmacist told her that it wasn't necessary just yet and that pharmacies don't currently have the inventory to start giving everyone 3 months worth of prescriptions. I'll leave it for a bit but, if things continue to worsen here, I'll have her go back and request 3 months worth.

S has talked with his manager and he is totally onboard with S working from home. S is still going to the office but it's a relief to know that he can stay home whenever he feels it's necessary.

Our 'known' numbers are still fairly low in Toronto but, they're slowly climbing and I think there are LOTS of cases that are untested.

No one needs another worry like this! Ugh!
 

crohnsinct

Well-known member
We have discussed O's upcoming trip to Miami (4 cases there) and he said she should go and use general precautions of hand washing and maybe an N95 mask on the plane and in airport. She is going.

I just got dx'd with flu last night at urgent care and the doc was talking with me about Covid-19. She said that while everyone is panicking about Coronavirus we should all be just as worried about the flu because it has killed about 15,000 this year and is on a very big upswing this month.

Our GI also explained that all of the closures etc are being done to stop the spread of the virus not so much because of the risk to the general public because about 85% of people will have it and not know they have it (i.e.: think they have a bad cold, sinus infection etc) and will spread it to "at risk" populations and we don't have the capacity or knowledge at this point to effectively deal with the numbers of seriously infected.

The run on hand sanitizer is funny. Why the hoarding...just wash your hands!

I will admit...I did stock up on toilet paper because lets face it...as a Crohn's household if we are quarantined and can't get supplies that is one I don't want to be without!
 

crohnsinct

Well-known member
OH! Forgot to attach this...also there is some research that the Anti TNT's are actually protective against the virus.

 

crohnsinct

Well-known member
Wanted to add that O's GI said her risk of getting Covid - 19 is the same as the general public but that her risk of complications is about 10-15% higher given her extended steroid use and ongoing inflammation.
 

Tesscorm

Moderator
Staff member
I did stock up on toilet paper because lets face it...as a Crohn's household if we are quarantined and can't get supplies that is one I don't want to be without!

True!!

hmmm... wine?!? Anyone stocking up? ;)
 
If you think about it, if this spread quickly like it did in the Wuhan province. Then say that 15% of the population require treatment all hit the clinics and hospitals in a short time, it would quickly overwhelm the medical system.

Slowing the infection to the degree possible prevents this from happening. Its a worthwhile exercise just for that reason. It isn’t so much because it is so lethal. Its not comparable to something like ebola. It is a slightly worse version of a seasonal flu as far as its threat to anyones health.

That is one important reason why these measures are being taken.

Dan
 

my little penguin

Moderator
Staff member
For us flu is more of a risk currently and considered deadly for ds
Immunosuppressive meds plus asthma
Makes flu a large risk for secondary opportunistic infections that affect the lungs like pneumonia
Plus bad asthma flares needing steroids
So regardless of the major virus
Protocol is the same since asthma /flu are a deadly combo
 

crohnsinct

Well-known member
Yeah asthma is a bigger concern than IBD there. Plus if you have to add the steroids that makes them more susceptible to other things also. I say wrap him in bubble wrap for the next few months.

LMAO - O just called saying she couldn't find disinfecting wipes anywhere (I had told her to wipe down surfaces, knobs, remote etc in hotel room). Here's an idea young one...how 'bout kick it old school and buy disinfecting spray cleaner and paper towels! Mind blown!
 

my little penguin

Moderator
Staff member
Even better
Soap /water /paper towel
Rubbing alcohol /paper towel
Vinegar /water /paper towel

as far as Ds it’s been 15 years of asthma plus flu combo - doing flu avoidance
Two incidences of flu with steroids needed so far
Very known drill unfortunately
 
Thanks for all the great posts/info. Not overly concerned - not stocking up on anything but probably not a bad idea to head to Costco and pick up a few items that I am low on anyway. I am watching the numbers daily and the people in recovery are higher than the people currently with the virus. The percentages of death are not accurate and we just don't have enough info on this new virus. People always tend to panic. If we were getting a report that Canada has 35 cases of the regular influenza, would it be such a big deal? Of course, I'm not putting my head in the sand - making sure hand-washing is happening, etc. There is a lot of news on this not only because of the medical side but because of all the other economic factors.
 
I think it's not worth stressing over as a crohn's patient. Western hospitals are prepared for these scenarios and from what I have seen, they have done an excellent job keeping coronavirus patients or potential cases isolated from the rest of the hospital.

Like someone said, crohn's disease patients should worry most about the flu. A seasonal flu vaccine is now standard care for a crohn's disease patient.

If anything, the coronavirus ''panic'' and measures employed to prevent infection are lowering our chances of catching the flu.
 

Maya142

Moderator
Staff member
My kiddo may be the exception because she is on two biologics and two immunosuppressants (MTX and another one for her arthritis) but her GI and rheumatologist are quite concerned - perhaps because her school is in NYC and because she's on so many immunosuppressants and also has high levels of inflammation (which could make her more susceptible to infections and complications apparently). She also has adrenal insufficiency and any infection could lead to an adrenal crisis, which can be fatal.

Luckily, her school has canceled classes for the next two days, and the next 3 days they will be doing remote classes. Then she has spring break for a week. So we have two weeks and then will speak to her doctors again.

We've stocked up on hand sanitizer, Clorox wipes, regular old hand soap and of course, toilet paper ;). She's going to be very careful about washing her hands. She was also told to avoid "non-essential" travel.

This is from the NY Times:

Dr. Anthony Fauci, the nation’s leading expert on infectious diseases, is widely respected for his ability to explain science without talking down to his audience — and lately, for managing to correct the president’s pronouncements without saying he is wrong.

President Trump said that drug companies would make a coronavirus vaccine ready “soon.” Dr. Fauci has repeatedly stepped up after the president to the lectern during televised briefings or at White House round tables to amend that timetable, giving a more accurate estimate of at least a year or 18 months...

On Sunday, Dr. Fauci appeared on at least two television news shows, warning that as the virus spread — there were more than 450 cases in at least 33 states — some stricter measures to isolate the infected might be considered. He also offered advice for older adults and those with underlying health conditions who are most at risk, saying they should avoid cruises, flights and large gatherings of people.
We're trying not to panic and to be honest, if my daughter were not due to travel I don't think I'd so worried. But she is supposed to see a researcher to get put on an experimental arthritis drug which would require a 4 hour flight. We are now trying to figure out whether to postpone the trip (and then inflammation levels will remain high) or to go and hope for the best.

I feel exactly like you; my tendency is never towards panic, and I know that this virus has not been hitting young people very hard. But I still worry about E with her immune suppression, and I can't find much about how COVID-19 is affecting young immune suppressed people. We asked her doctor if she should stop methotrexate for a while, and her doctor said no, and just forwarded us the guidelines about washing hands, etc. Not especially reassuring... I'm also worried about my parents and inlaws, since they are all in their 70's.
I agree with pdx - generally I would not panic, but I know that there are rapidly rising numbers of confirmed cases of the virus in New York and schools in the area all seem to be closing to try and limit its spread. And of course, there doesn't seem to be a whole lot of info on immunosuppressed teens/young adults. I think it also probably depends on the meds too - our GI said that biologics like Entyvio and Stelara are lower risk than anti-TNFs (one of my daughter's biologics is an anti-TNF).
 

crohnsinct

Well-known member
Maya - I know she has been waiting for this appointment for a while and really needs to see this researcher. Can you get your hands on an N95 mask? I would think at a minimum, M would need that for the flight. She does have just so much going on and she is onto many different meds and has a tendency to be the exception rather than the rule. So, yeah, I would be a tad concerned also.
 
Oh Maya--you are really stuck between a rock and a hard place. I'm so sorry. Is there no way for her to get put on the new drug without the in person visit?
 

Maya142

Moderator
Staff member
Wanted to add that O's GI said her risk of getting Covid - 19 is the same as the general public but that her risk of complications is about 10-15% higher given her extended steroid use and ongoing inflammation.
Wanted to add - my daughter's specialists said the same thing, except they did not gave a % for her risk of complications, just said it was significantly higher. So hearing that it's 10-15% makes me feel better (although I know that depends on the kiddo and meds, but CIC, I will sleep a bit easier after hearing that!! And I think I better follow Tesscorm's lead and stock up on wine too, while I'm at it!!).

We do have N-95 masks. And Clorox wipes and Purell. I'm actually more worried about my husband since he is on a biologic too but is not as careful as my daughters - they have been well-trained by working in chemistry/biology research labs (in college) to wash their hands WELL, wipe down their lab notebooks and laptops (they have laptop cases and silicone keyboard covers so they can be wiped down easily) and even phones with a 70% alcohol solution at the end of each lab session. Also to keep gloves on, and to follow precautions such as not touching elevator buttons with their hands (since chemicals on gloves could get on elevator buttons, so they're taught to use their elbows when going to different labs/instrument rooms etc). So they're already very careful. Guess that college tuition was worth something ;)!!

My husband, on the other hand, is a different story :rolleyes:.

Oh Maya--you are really stuck between a rock and a hard place. I'm so sorry. Is there no way for her to get put on the new drug without the in person visit?
We are trying. It's especially difficult because she has high inflammatory markers, obvious swelling, low grade fevers (now going up to 100.7F) and severe pain, and she already has two replaced joints:cry:....we don't want to have to replace any more. So preventing joint damage and getting the pain under control is really important...but still trying to figure out how to get it for her without traveling.
 
Is there any possibility they could see her by Skype or video link if she had someone with her to zoom the camera in, prod as per doc instructions - I don't know if it's worth a conversation with the doctor's secretary? Poor girl sounds like she is having a very hard time.
 

Tesscorm

Moderator
Staff member
Oh Maya, that is such a tough decision. :(

Just one consideration and, in all honesty, I don't even know if it would make a big difference. If her travel plans would currently include large airports and flying with a large airline (larger plane), can she find smaller local airports and a smaller airline (smaller planes)? I'm only mentioning this because, coincidentally, we are flying to Florida soon and, for cost savings, friends had suggested we fly out of Niagara Falls/Buffalo airport (instead of Toronto Pearson), arrive at a small local airport instead of Fort Myers and use Allegiant Air (instead of Air Canada or Westjet). When we booked this, it was well before the virus concerns but I'm now thinking the smaller airport and, maybe, plane will be an extra benefit. I'm sure there are lots of smaller airlines in U.S. but Allegiant has many destinations... perhaps, one is close to her destination??

I wish I had something more helpful to offer... such a hard choice! :cry:
 

my little penguin

Moderator
Staff member
Guven the extent of her disease
She needs the new meds .
She does not have an underlying respiratory disease .- that is the turning point of the severe cases .
Can you make it a longer trip ?
Drive by car over a week so no more than a few hours per day in a car .
The large crowds are more the issue than the plane itself (filtered air ) unless your by the one person who has the virus otherwise 3 ft rule applies .

if she has to go (which she does ) and you don’t want her to fly
She needs to go by car and extend the trip as many days as she needs to get there
Can you rent an RV ?
So unlike a car she can get up move /lay down etc...
And cook /keep her out of crowds ....
 
Location
San Diego
We're trying not to panic and to be honest, if my daughter were not due to travel I don't think I'd so worried. But she is supposed to see a researcher to get put on an experimental arthritis drug which would require a 4 hour flight. We are now trying to figure out whether to postpone the trip (and then inflammation levels will remain high) or to go and hope for the best.
The risk of COVID-19 exposure from flying within the US is still pretty low (unless you are flying to a real hotspot like Seattle). And IMO the current level of risk is likely to get worse before it gets better. Thus, if it were me I'd take the flight to get the experimental arthritis drug now while the risk is still low. As the exposure risk gets higher, there is no telling how long it's going to be for the risk to drop back down to current levels or lower.
 

Maya142

Moderator
Staff member
It is very nice of all of you to care so much about my girl :love:! Luckily, we have found a way for her to get the drug without flying (at least temporarily). We may have to go in a month or two to see that particular researcher in person, but her rheumatologist is also appealing since it is approved for a different type of arthritis - so we'll try and get it off-label too (it's already been denied once though).

Otherwise, yes, we will either drive in big SUV or an RV (hadn't considered that - thank you for mentioning it @my little penguin!!) or consider flying - depending on how the situation looks in April/May. It's just that missing an entire week is hard when you are doing upper level chemistry courses and labs, but if she has to, she will.

Interestingly, this drug is in trials for Crohn's too, but in earlier trials (I think Phase II vs. Phase III for psoriatic arthritis and Ankylosing Spondylitis). Since her GI has no idea what the Crohn's dosing will be, she'll stay on her anti-TNF and add this drug (a JAK inhibitor like Xeljanz, which is approved for UC, but this particular JAK inhibitor seems to be safer than Xeljanz). Her Crohn's is also flaring - her FCP is up from 100ish to 233. Not terrible, but her highest FCP has been roughly 500 (I think 480 something), so her GI considers this a (relatively mild) flare. Her Crohn's symptoms aren't bad - just some abdominal pain (in the terminal ileum area, which is where her disease is worst) and diarrhea (but not terrible diarrhea). Her arthritis symptoms are awful though. Her Gastroparesis is also acting up, and she has been unable to eat much for 6-8 weeks and has mostly been on tube feeds.

She is actually thrilled classes are canceled - for her that's very unusual and a mark of how sick she is! This is a kid who went back to school after having open abdominal surgery during her first semester of college. She also insisted on going back to school 5 weeks after having two joints replaced and spending 12 days in the hospital. So for her to be glad to stay home means things are really bad. Her dad and I have been trying to get her to withdraw but she's a senior now and if she's able to finish this semester, she should be able to graduate after the fall semester!!
 

Catherine

Moderator
From our media

- Very bad for the elderly - all three deaths are individuals over 78

- Sydney/NSW hot spot case from 6 to over 40 in the a week

- children symptoms in the NSW dx children are very very mild cold. NSW children are being told maybe mild for them but dangerous for their parents

- my own experience - food. I know toilet paper in Australia is making the news internationally but the the product with supply issue with:

Flour, sugar, pasta, rice, tinned tomatoes etc, pads, tissues, cleaning products

We currently have 70 cases and climbing. And 3 deaths.
 
So glad to hear this, Maya. And that's amazing that she's so close to graduation, with all that she's dealt with the past few years. I hope this new drug works well for her.
 

Tesscorm

Moderator
Staff member
Hope everyone’s holding up and staying safe and healthy! 🙏

Just wondering, has anyone had any greater concern re risk/infection immediately following infusion or injection (humira, stelara, etc)?

Or has anyone tested prior to infusion as a precaution?
 

my little penguin

Moderator
Staff member
Tess even if you test prior to the infusion
The drug is still in your system
Tests in the US at least are very limited - criteria is strict

For ds not an option since he takes mtx every week
Stelara every 4 weeks plus other meds.

having the body in a hyper inflammatory state probably wouldn’t be good either since it’s the over active immune response to the virus that seems to be causing the serious cases
It’s catch 22 .

for now Ds stays at home period . As do we -very limited trips for groceries not much more
 
How's everyone doing? T - I doubt they would test anyone ahead of time - they are expensive and they only test when someone has symptoms. L has an infusion on Saturday . He's been home now from university for a week and doing on-line classes and only goes out to physio once a week. I hope all is well with everyone.
 
We're hanging in there. Oregon schools also closed last week and will be closed for at least 6 weeks. E is super bummed about the possibility of missing the rest of senior year and all the events that go with that. The kids and I are staying close to home--haven't even gone out to go grocery shopping yet. I'll probably try to do delivery once we start needing things. My husband is the wild card since he works in an emergency department. So far, his shifts have been quieter than usual because people are staying away unless they really need to be there, but he's seeing people who probably have COVID-19 every shift. He's super careful at work and typically doesn't bring home germs to us, but they have the same equipment shortages in his hospital as everywhere.
 

Lisa

Adminstrator
Staff member
Location
New York, USA
I'm here in NY - one of the epicenters for the pandemic in the US...thankfully I live Upstate - well away from NYC. I have been to work/office up until last week, but am now working from home, with a couple of deployments coming up to work in the field (actually in one of the prisons where the NYS sanitizer is being bottled!).....cases here have been growing, we get daily updates showing the growth and comparing numbers back 24 and 48 hours to show what the growth really looks like.....

My husband's cousin, who has been working in Rockland County, NY just tested positive, some of my co-workers have had exposure but no positive tests (yet).....my mom is home sick right now with a fever, chills, but no cough/sore throat.....she tends to get random episodes of fever to begin with....keeping an eye on her from afar, as is a mutual friend of ours who is a PA and lives only a few miles away.....

I have a few doctor appointments coming up, urology annual visit, dermatology, GI annual visit - waiting to see who/what ges cancelled as none of these are critical visits.....and my next infusion is April 6...that one I know I will keep, especially since my last one was almost 2 weeks late.....

My daughter has been great so far, doing homework, helping around the house....school right now is closed until April 1, however I'm pretty confident it will be closed longer, if not for the rest of the year.......now we are waiting for the 5 inches or so of new snow that fell since yesterday to start melting...I wanted to start doing spring cleaning in the yard this week/weekend!!
 

Tesscorm

Moderator
Staff member
I think you are right re access to testing. Tests are limited here as well and I doubt we could have S tested as a 'precaution'. My concern was if we proceeded with the infusion while his body was trying to fight off the infection (while being asymptomatic). But, as has been said, being tested as a precaution is very unlikely. And, honestly, both S and I were talking and both felt that we didn't want to take resources away from someone who is at even greater risk.

But, on a good note, my husband overheard someone talking about his son being on remicade. Husband started speaking with him and the gentlemen said that his son's GI told him they are finding that those on remicade are having a protective response from remicade. Certainly not going to tell S he's free and clear from all worries but we've all been worried about S's circumstance so it's a bit of a relief (and to everyone here!!).

(CIC - sounds like it's the same info you posted a while ago from @IBDMD (y))

PDX - I'm sorry that E will be missing out on senior year events! That really sucks. I hope they can hold the grad or senior prom at a later date.

Stay safe everyone!
 

crohnsinct

Well-known member
Dr. Rubin (you have heard me mention him numerous times.) is a MD to follow on twitter. He has many updates about Covid-19 and IBD.

Basically the consensus right now is stay on your meds and on schedule. A flare will actually be worse for you and leave you more vulnerable in that you might need steroids to get it under control. I think most GI's are trying to taper steroids as much as possible.

Remember also that Remicade may actually have protective value when it comes to Covid.

Read through his tweets and you will get everything that the AGA etc have discussed.
 

Tesscorm

Moderator
Staff member
lol @CIC

And, yes, I did read through his tweets. Nice to have a 'positive' note with all the negative news around! :)
 

Tesscorm

Moderator
Staff member
Thanks so much CIC! Started to watch but will need to finish tonight...

Lisa - between me, my son and daughter, we've all had a number of dr cancellations, including S's upcoming GI follow-up. And, if an apptmt hasn't been cancelled, it's been changed to an e-appointment.

MLP - stay safe! I know LP is on more than one med... scary time to keep our kids safe! 😟
 

Lisa

Adminstrator
Staff member
Location
New York, USA
Lisa - between me, my son and daughter, we've all had a number of dr cancellations, including S's upcoming GI follow-up. And, if an apptmt hasn't been cancelled, it's been changed to an e-appointment.
I've cancelled/rescheduled my derm appointment, will check with my urologist tomorrow to see if that visit should be rescheduled.....watching the number of Covid cases very closely here, they seem to be slowing down but will need to check numbers for a few days to really see...
 
Some positive news coming from scotland. Five children with ibd diagnosed and none needed hospital. Small number but encouraging. Our ibd told me this yesterday. Schools closed here in Ireland with two weeks, social distancing in place, non essential services and shops closed. Huge job losses. Lucy and the other kids havnt left house in two weeks. I've only been out masked and gives for groceries and pharmacy. Dh and I working from home. This is the new normal. Stay safe
 
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my little penguin

Moderator
Staff member
So basically per that chart
All on immunosuppressants or biologics
Or 20 mg of pred or more must self isolate (shielding )
Which is all who have crohns or any autoimmune disease In a nutshell 😑
 

crohnsinct

Well-known member
THat's not what I read in it. Just those who started a biologic in the last 6 weeks. The rest are just strict self social distancing.
 

my little penguin

Moderator
Staff member
Sorry asthma here so ....plus biologics/immunosuppressants
Equals Shielding

or flaring while on immunosuppressants/biologics
Equals shielding
 

Tesscorm

Moderator
Staff member
Sorry guys, another worry, another question... I know no one has an exact answer but just wondering what your opinions are...

I'm sure you've all heard that there is possible a detrimental impact on those with COVID and who have taken ibuprofen. As most with IBD, shouldn't take ibuprofen, this isn't a concern for most on here (but, of course, exceptions for those with arthritis, etc.).

My daughter (no crohns) is currently taking a baby aspirin every day. She'll be taking it, at least, until May 21 (MRI). (Some/most on parents' forum probably read a while back that she's taking it for an artery dissection).

My question... I know aspirin is not ibuprofen but they are both nsaids... do you think this puts her at higher risk? She's still working (but with limited other staff) so this worries me...

And, what is the possible reason that ibuprofen is a problem??

Any thoughts?
 

crohnsinct

Well-known member
I attended a zoom conference at our hospital and the infectious disease docs said the jury is still out on the Ibuprofen front and not to freak out. I think in your daughter's case the risk of stopping outweighs the risk of getting COVID AND having a complications from an NSAID use. I would have her continue. Tell her to WASH HER HANDS!

Incidentally, I think I told you guys that I was sick a bit ago. Flu test came back negative and there were no Covid tests available. My daughter's co worker just tested positive and they work in a very small OT office. My daughter got tested because she is technically a health care worker. She is positive. Possible I passed it to her and she brought it to work. Possible she got it at work. She is asymptomatic and no one in the family is sick. The numbers are really scary but we have to ground ourselves.

The zoom meeting that my daughter's IBD program put on was VERY reassuring. They had infectious disease docs speak also. I will post the link here when the recording becomes available. But to summarize, they said, don't pay attention to the numbers let the experts do that. Also said the #1 method of transmission is from droplets that land on something you later touch. So the best method of protection is to wash your hands and clean frequently touched surfaces, counters, door knobs etc.
 
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my little penguin

Moderator
Staff member
Only one study “ thinks” nsaids are an issue which includes ibuprofen (Ds takes Celebrex )
Aspirin is not a nsaids
Neither is Tylenol .

other countries don’t agree with the study
For now hand washing ....
 

Tesscorm

Moderator
Staff member
Thanks Kim! Appreciate it.

Ugh, I hope your daughter is feeling alright! And glad you u came thru well!!
 

Tesscorm

Moderator
Staff member
Thanks MLP.

I’d been looking up info and saw aspirin being called an NSAID on a couple sites. Thanks for clarifying!

I do think, in my daughters case, She needs to continue to take the aspirin (at least till end of May) but the connection w covid was just a bit worrying!

I wish she wasn’t working tho.... just to be safe... 😞
 

crohnsinct

Well-known member
Seriously @Tesscorm! have you guys not moved to essential workers only yet? Is she an essential worker? I know we all think we are essential especially the kids but this is serious.
 

Tesscorm

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Yes, we have shut down to essential only but... she's a buyer at a meat company. Food is essential. :(

They laid off most of their staff a couple of days ago so, next week, she'll start 2 days at home, 3 in office. From what she's explained, she needs to 'see' inventory, at least periodically, to assess levels. The number of people in her vicinity has dropped significantly since Wednesday (down to ~6 in office from 20ish and in the production/inventory area, down to 10ish from 60+, I think). So this will help keep her safe (although I do feel bad for all those people who were laid off. 😟 )
 

crohnsinct

Well-known member
She wins! Food is essential. I am glad there aren't a lot of people in the office. Just tell her to distance herself and if she touches any surface outside her office/cubicle to wash her hands. Same goes with any place she goes. Wash her hands when she leaves. Wash her hands after someone has been in her office/cubice etc.

Did I mention she should wash her hands?

Ya know this is the same thing we should all be doing every flu season because the flu is deadly for the elderly and immune suppressed also. But we never really think about it. I am really hoping everyone remembers this next flu season and makes it a habit to stay home when they are sick and wash their hands, cover their sneezes and coughs....I know I live in a fairy tale.
 

crohnsinct

Well-known member
LOL! MLP, I read that and O is a zero and I thought "awesome!". But then I realized the reason why Vedolizumab and moderate to severe IBD flare aren't on there as risk factors is because it is a rheumy chart. 😂
 
I believe it is unlikely that the virus is actively spreading through contact surfaces. To go from contact with a virus to an infection requires a certain viral load. Only a fraction of viruses will make it to the lungs, and most of those will never make it through the mucus layer.

To go from contact with a virus to an infection, requires a lot of viruses, it requires a cough of another person. The virus rapidly degrades on surfaces and it is very unlikely that it is spreading through surface contact. Because one can detect a virus on a surface doesn't mean it is therefore viable and able to infect people, contact with a virus and infection of the cell are two different things. I think it is unlikely that people being told to washtheir hands is of much use in stopping the spread of the virus. (not that one shouldn't wash their hands, but everything we know about coronaviruses is that they spread through aerosol)

The Western world is wondering how South Korea, Hong Kong and Singapore got the virus under control. It is not magic, they told people to wear masks. The Western governments failing to get the virus under control are lying to people by claiming masks are not effective because of a shortage of masks, but masks are highly effective in stopping communal spread. People should be told to wear masks when they go out.

I watch in disbelief how Western countries with high infection rates are spending a lot of time and effort in telling people how to wash their hands, but claim people should not wear masks, when clear evidence shows the virus infects people through aerosol and through the airways, and no evidence it does this through surface contamination.

If the people who treat and come into contact with crohn patients on immunosuppresive therapy wear masks, the patient will be safe from infection.

It is the duty of the healthcare provider who treats the patient to protect the patient from infection by wearing a mask, people on immunosuppressive medication are high risk patients. The large large majority of infected healthcare providers are asymptomatic and do not realise they are infected. It is the job of the healthcare provider and people who come into contact with the patients to take the necessary steps to guarantee the safety of the patients. Not the other way around, the patient on imunosuppressive medication is at much higher risk than the healthcare provider.
 
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I saw someone mention on the forum that they used immunosuppressive medication to treat corona patients. I think it's important to note that immunosuppressive treatment is not used to treat the actual infection and immunosuppressive therapy puts people at greater risk when they get infected.

Immunosuppressive therapy is sometimes used during infections to stop tissue damage, especially of the epithelial tissues and nervous tissue. The same way crohn's disease can be seen as a chronic infection of the intestine by bacteria entering tissue, and one tries to limit the inflammatory cascade to prevent too much tissue damage. Immunosuppressive therapies from the last decades were never designed to treat crohn's disease, most were designed to prevent tissue damage, nerve damage and necrosis, during infections.

But during an acute infection, imunosuppressants do nothing to treat the underlying infection, it is merely used in some rare cases in very low doses, where temporarily protecting tissue is more important than controlling the infection.

The immune system itself has a whole army of signaling molecules to lower and increase the inflammatory response, it is in a constant balancing act whereby it tries to rid infected cells, but do it in a way that prevents damage to the body's own tissue. Medication can interact with those signaling molecules, and help the body balance the inflamatory cascade, but during acute infections like the coronavirus, it is just as likely that immunosuppressive does more harm than good if lowing the immune response, causes the infection to spread too fast.

A patient on immunosuppressive therapy is still at much greater risk of coronavirus.
 
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We are in lockdown in Ireland. Dh and I are working from home since schools closed so getting used to it now, so on day 20 today. Have only left twice for essential groceries and pharmacy during this time. I am the only person leaving as dh is high risk as well. Its getting hard as I haven't seen my parents in 3 weeks
 

Tesscorm

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Thanks very much Kiny!

polly13 - my mom has been on her own through this time. We have dropped off groceries but have only stood many feet apart as I dropped off the bags.

However, this past Saturday, I 'met' my mom for coffee. We each prepared 'to go' coffees at home and met at a parking lot (overlooking a small lake). We each sat in our own cars, with a nice view, each had our own coffees and a chat, sort of together. My mom has been afraid to even leave her house for a walk so this also let her get 'outside' in a still safe environment (her car).

A friend of mine has two adult children, and they have done this a couple of times (spouses and all) - they've packed lunches and met in a parking lot for a 'shared' lunch.
 

crohnsinct

Well-known member
It's been hard for us separated from all of our family and dear friends across the country. Many are in NYC so no chance we would have seen them anyway.

I like your "get together" ideas Tesscorm! I am out often due to my shelter work and I see neighbors socializing outside. Lawn chairs 10-12 feet apart. They have to talk loud so I hope they aren't talking about anything too personal or about other neighbors;)
 

my little penguin

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In particular, in a recent study by Qin C, et al.in which among 452 patients with COVID-19, most of them had increase of several inflammatory cytokines such as tumor necrosis factor (TNF)-α, interleukin (IL)-1and IL-6 [3].

Further, higher serum levels of pro-inflammatory cytokines (i.e. TNF-α, IL-1 and IL-6) were found in patients with severe COVID-19 as compared to the non-severe ones [3]. Additionally, in severe cases, a reduction of CD4+ and CD8+ T cells and a decrease of regulatory T cells has been found, likely due to high expression of proinflammatory cytokines in COVID-19 patients [3].

However, so far, it remains unclear why SARS-CoV-2 may lead to variable cytokine modulation and different phenotypes of patients, maybe linked to both viral characteristics and host susceptibility.
From link above
 

Tesscorm

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Staff member
I have a question re the vaccine for coronavirus... What determines if the vaccine is a live vaccine or inactive one? Any thoughts on which it would be for the coronavirus?
 

crohnsinct

Well-known member
Any of the ones I have heard they are looking at are inactive. Just depends if they use the live virus in the vaccine or not.
 

Tesscorm

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But there must be a reason why some are live and some not?? I’m thinking there must be a type or characteristics of the virus that determines the type of vaccine.

Of course, just worried what it means for those w suppressed immunity if vaccine is live.
 

my little penguin

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The Sinovac vaccine contains an inactivated version of SARS-CoV-2, the virus that causes COVID-19. By introducing an inactive virus into the body, the vaccine should prompt the immune system to build antibodies that target the pathogen without triggering an actual COVID-19 infection. When given to mice, rats and rhesus macaques, the vaccine sparked the production of such antibodies, according to the bioRxiv report.
From

But the work has not been reviewed or tested in humans yet so ......
 

Tesscorm

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Staff member
Thanks for posting these articles, MLP! Both very interesting! Let's hope the Sinovac trials show positive results!:D

At this point, seems CIC was right... Just depends if they use the live virus in the vaccine or not. Dealing with crohns, we should be used to this type of answer... sometimes, maybe, it might, we'll see... :rolleyes:

S is lucky in that he can continue his work while at home. Part of his work did include lots of conferences, presentations, etc. but, as no one's hosting these now (and probably won't for a while), he's ok workwise. But, socially, at some point he'll want to go out... as will everyone else! And, not everyone on an immunosuppressant/biologic is able to work from home. I do hope the vaccine will be inactive!!
 
I tried to read all of the post in this discussion, but there are so many. If you already answered this question, please forgive me. I have a son who is a senior in high school. He has Crohn's and is on 150 mg of Azathioprine and 3000 of Sulfasalazine. He is currently planning to go off to college in the fall and stay in a dorm with a communal bathroom. My head is spinning.... do you let your child go off to the dorm out of state on an immunosurpressant while there is currently no vaccine for Covid-19?? or would you keep him home and make him take on-line classes. I hate for him to miss out, but worry all at the same time. If he were younger, I feel that I could have more control of his environment. What would you do? I know there are so many in the same boat.
 

crohnsinct

Well-known member
Depends, is he in a good solid remission? Where is the school and how high is the incidence rate of Covid? I don't think in state or out of state really factors in...away from home and in dorms is away from home and in dorms.

Things do seem to be calming down, the younger kids seem to weather this illness better. There are not a lot of deaths of people with IBD who were on these meds so that is encouraging. But of all the drugs (except for prednisone) azathioprine is the one that carries the higher risk of getting infections. Before all of this were you concerned about the flu, mono and the multitude of other germs that seem to love colleges?

Things could change dramatically by August so I wouldn't make a decision just yet. But I would be inclined to let him go to school. I have a daughter in college and we are already getting emails about the three times a day cleaning of communal bathrooms and changes to the number of students put in each dorm room and all of this is only IF they resume on campus classes. They are actually considering online classes for fall.

One thing I might do is have a conversation with the GI about moving him to a biologic. First, there is less infection risk with them but I would also be concerned about the risk of hepatosplenic T cell lymphoma which is a VERY rare but serious and almost always fatal cancer. The very small risk of this cancer seems to be linked to azathioprine use and in mostly teenage boys. Most pediatric GI's are not using it that much anymore. So if he hasn't yet tried an anti tnf, I might ask the GI what they thought about switching over now to lower both risks. Although, you would be rocking the boat very close to him leaving and rising a flare should he not respond to the anti tnf BUT you could always go back to azathioprine.

I have sent my daughter clear across the country in the middle of a flare for the last three years so maybe I am not a good person to ask;) Even though she is not in remission and is on two biologics and budesonide, if her school has on campus classes we will be letting her go.
 

my little penguin

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So unfortunately things are not slowly down
The US has hit a plateau with almost 70,000 deaths .that was before rules were “opened up “
Given the trend above it should go up in cases .
Only two things stop it
Herd immunity 60-80-% of the population
Or a vaccine
Dorms are Petri dishes 🧫
Very high risk similar to nursing homes /prison
No real way to keep 6 ft apart
Lots of cup /plate sharing
Poor nutrition
Poor sleeping habits
Normal college experience

my kiddo is still in high school will be a. Junior in the fall
But still if he was suppose to go to college in the fall
Would not happened in a dorm
Too much risk at this point
Later ...
Who knows
 

crohnsinct

Well-known member
^MLP's son also has severe asthma and that is a much higher risk than IBD alone. Not saying if her son was "just" dealing with IBD her answer wouldn't be the same but........
 

my little penguin

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My kiddo has mild asthma which is under control
Which does put him in a higher risk category but still
There are currently two KNOWN mutations of covid
And my answer would be the same without asthma
The science is still too unknown on who gets severe infections (young adults as well )
They don’t know why
They don’t know who gets no symptoms and who gets total body inflammation
What I do know is autoimmune disorders are great at total body inflammation “trick” so not worth that risk imo

that said young “adults” with crohns tend to have their own opinion about EVERYTHING including meds ,docs,school etc
So that has a lot more weight on what to do
Talk to your child’s doc /Gi and your child
Add in their school /college may not be fully open
May have restricted dorm access to x% etc
So talking to your child’s college on what the plan is also key
 

Tesscorm

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I would lean towards MLP's side but I am more of a worrier at any time...

But, something to consider, what arrangements can be made through the school's disabiity office? When my son was away at school, due to his crohns diagnosis, he was able to request an apartment-style residence. He still shared the apartment (shared kitchen and living room) with 3 others but they each had their own bedrooms and bathrooms. If you can arrange this type of living space, it may help a bit. But, this doesn't take away that friends of each of them were in and out of their apartment all the time.

While my son was away, ~5 years, he developed LOTS of respiratory infections. He's on remicade so, whether or not that played into it, I can't say for certain but I do think the environment played into it. Constant contact with lots of people, not as clean as at home, not eating as well as at home, etc., etc. The respiratory infections have stopped since he left school.

I'm sorry you and your son need to make this decision at this time.
 

Tesscorm

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Covid-19: What do we know so far about a vaccine?
The World Health Organization has announced that 83 potential covid-19 candidate vaccines are being assessed (as at 23 April), including seven that have now been approved for human testing through clinical trials.1The BMJ looks at what we know so far.


 
My daughter with Crohn's is supposed to start college in the fall, about 90 minutes away from home. I haven't even really been thinking about the "will I let her go" question yet because I'm so certain that college will still be online in the fall. If I'm wrong, then I guess we'll have a big decision in August.

I agree with CIC that a biologic might be safer than azathioprine--I would talk to your doctor and get their opinion.

So sorry that your son and family have to be dealing with this at all. It's a hard thing for all students, but this year's seniors are in a particularly disappointing situation.
 
Thank you all for your prospective. It always helps to see different sides and aspects. Currently, he is slated to stay in the honors dorm with his really good Scout friend. My son is VERY shy and stress tends to trigger flares. From a emotional standpoint only, living in the honors dorm with his friend will help ease him into college life compared to living in an apartment style dorm. There is a single handicap bathroom located across the hall from the communal bathroom. I have accommodations already in place for my son with the university. The accommodations office has written (we have as well) the housing department to make 100% certain that he will have access to that bathroom. Still waiting to hear back.

We are going to schedule his regular yearly visit with his GI doc in June. We will definitely discuss medication, dorm life, Covid, etc... with the GI. Thanks so much for your advice. We will continue to monitor the situation. I am sure we will go back and forth and back and forth. You want your child to be safe and you want him to experience life. So sad for all of our kids.

Funny story... When we were setting up accommodations at the university, I questioned how the school will handle another COVID-19 breakout with students with immune disorders. Her answer included how they recently had a mumps outbreak and the school did an amazing job. Oh great... now I have to worry about flu, covid, AND mumps!!!! In an attempt to make me feel better, she made me more nervous!! :)
 

crohnsinct

Well-known member
T had her appointment with the GI today. I took the opportunity ask him about a softball tournament coming up in Southern California the first week of June. He had some VERY interesting points that I thought I would share with you all. They are overall GI observations and things that are being researched etc. Nothing written up yet but it is the general consensus in the IBD GI world.

- Anti tnf meds give you about a 7-10% increased chance of a complication of pneumonia. This is bacterial or viral pneumonia.
- Covid pneumonia is not a viral or bacterial pneumonia. He said it is a cytokine type of illness. Cytokines are the things that cause inflammation in the body. TNF is a cytokine.
- Sooooo, they are finding that the anti tnf drugs are not only not increasing risk but also have a protective factor
- He said Entyvio which is very gut specific is a neutral agent but the tif's are actually the better drug to be on with regard to Covid

So he felt she could probably go to the tournament and use general precautions (wash hands, wear mask when not on the field playing, try to stay out of restaurants, no slumber parties in. hotel rooms etc). Of course, she could still get exposed and be fine but carry it back to her sisters, dad and I but one sister is staying home, we think I already had it, O is on tnf also and dad is a somewhat healthy person.

Still haven't decided yet. Waiting to see if the tournament id definitely on. Maybe just her and I will go and we will rent an airbnb rather than stay in a hotel.
 

Tesscorm

Moderator
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So coincidental that you posted this! I read this article and was going to post it now! It's not specific to remicade, humira, entyvio but does discuss exactly what you brought up - cytokines and the effect covid seems to trigger.

Anyway, I found it a very interesting article and, even without mentioning remicade specifically, it gave me a small degree of reassurance. :)


 
Just came on to make a post about C's telehealth appt. He didnt get his Stelara infusion because we were battling insurance then Covid came along and he didnt want to go to infusion center during that.

Long story short, the GI today said that in several teleconference with his peers they have discussed the fact that those on Stelara may have some protections as the rates of patients with Covid seem very low.

C will be getting his infusion in the next 2-3 weeks as well as his regular stelara injection coming up soon.

Hope all is well for everyone.
 
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