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If anyone on here has been infected with Covid, I have missed it.  Also don't see any discussion about it.  My question is:   Have any of you discussed it with your doctors?  My doc has always told me that when you have your Colon removed you automatically have an autoimmune deficiency.  Which basically means your immune system is over active and attacks things that are foreign to hard.  I have been staying very quarantined for this reason because my doc has had any of his patients come down with Covid.  But most of them are like myself and are staying quarantined.   Well I am sick of not getting to do anything as I am sure most people are, but would like to maybe venture out just a little.  Do any of you have anymore information about this and have any of you been infected with Covid or know anyone with our condition that has been infected.

Appreciate any and all input and thoughts on this subject!

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Jackie, no one knows whether having a J-pouch affects how COVID-19 affects us. It’s spreading like wildfire now, which makes this a terrible time to venture out more. Even if it doesn’t make you very sick there’s a good chance of spreading it and causing terrible consequences down the chain of infection. There’s a light at the end of this tunnel, but it sure is a long tunnel.

You want to quarantine as much as possible whether you have IBD or not. Not having your colon doesn't mean you are immunosuppressed but if you take biologics, prednisone or budesonide you are immunosuppressed. That being said my doctor told me there is no data to support that we are somehow either more prone to getting infected with Covid or more susceptible to having a bad course with it if we do.

I took the remote deposition today of an ENT physician who is at the frontlines of Covid as an on call physician at 2 different hospitals. He told me during a break in the deposition that they are observing a spike in deterioration of breathing symptoms at the 7 day mark after onset of symptoms or confirmation of Covid positivity. He said there can be sudden deterioration after the experiencing of mild symptoms for 7 days, at a time when people think they are "out of danger." He recommended that anyone infected have a pulse oximeter and said that if your oxygen level dips below 90, go to a hospital immediately.

Last edited by CTBarrister

Not having a colon does not mean you are immunocompromised.  Having an autoimmune disease does.  Not everyone here has lost their colon to an autoimmune problem.  

I am a pediatric critical care RN and care for patients with TB, chicken pox, measles and other very scary contagious diseases.  Of course I always wear the appropriate full PPE.

Covid is terrifying and we must all do everything in our power to prevent its spread and keep ourselves and others safe.  Wear a mask when out.  Stay at least 6 feet away from others.  Wash your hands frequently and limit outings and travel to essential only.  Do not visit with anyone and do not gather (even for American Thanksgiving).

Everyone please stay safe.

JayPea,  This has always been confusing for me.  When I had my colon removed 18 years ago it was because it wouldn't stop bleeding.  I had not had any prior problems with my colon.  My doctor diagnosed it as UC that was caused by a medication that I was taking.  He said that UC is an autoimmune disease that I would now always have.  But I have always wondered about that since it was drug induced.  From what I understand autoimmune means your immune system over reacts.  In the case of my colon it overreacted and was killing off my colon.   He says that my immune system would still respond that way to some things.  I am otherwise extremely healthy.  Have always had a healthy diet and exercise daily with either running or Yoga.  I take supplements for the things that are usually absorbed in your colon that are hard for a body without a colon to maintain.  And try to make sure I am always hydrated properly.  He still has asked me to take extra precautions.  I have not gone in a store or restaurant except maybe twice since March.  Have only been around my immediate family as I am a grandmother and keep little ones regularly.  And I am still attending church online, which I hate!  I miss my church family so much!  It helps to know that someone on here without a colon survived Covid!  That makes me feel a lot better!  Thanks for the information I really appreciate it. 

P.s.  my family is getting together for Thanksgiving but it is only the immediate family that I am already around all the time, so I feel pretty safe.

What Jaypea said above is correct, although having an autoimmune disease doesn't necessarily mean you are immunocompromised. It just means your immune system doesn't work as it should and causes an inflammatory response that needs to be treated.

What makes you immune compromised is taking drugs like Entocort or Prednisone or Remicade which actually suppress the immune response. As someone who takes Remicade I am in this group. But I don't worry about it because all I can do is behave responsibly and appropriately. While not as exposed as Jaypea is in his employment I try to isolate as much as possible. I probably have more to worry about than you do but all I can do is the right things and not expose myself needlessly to being infected.

I have eaten out in restaurants with my GF and did last Friday, but I would say it was very Covid friendly cavernous restaurant with well spaced tables and booths, not many people were there and nobody was within 25 feet of us. You need to pick your spots and I would definitely go there again.

Thanksgiving is just going to be me and Dad who is now living with me. Just a chicken, Turkey is too big for the 2 of us although I like Turkey and he doesn't.  So it will be a total low key holiday for me except I am meeting some friends at a local microbrewery on November 29. Like I said I just pick my spots here and there -

Last edited by CTBarrister

There are two separate vulnerabilities to consider: the risk of being infected, and the risk of developing severe illness. J-pouchers (with or without IBD) probably have identical risk of being infected as the general population. This risk goes up with every human contact, and multiplies as the number of new daily cases multiply, but it’s not likely to be any different for J-pouchers. I’ve chosen to be very, very careful to avoid being infected: I simply won’t go indoors with anyone outside my household, including grocery stores, restaurants, etc., and I’m very careful outdoors, too.

The risk of developing *severe* COVID-19 (once you are infected) is trickier. As @RossG points out, that seems to be due to an immune system overreaction called a cytokine storm. In *severe* COVID-19 dexamethasone (a potent cousin of prednisone) seems to tamp down that overreaction and help manage the severity, and tocilizumab probably works analogously. Unfortunately these drugs (at least dexamethasone) seem to do more harm than good early in a COVID-19 infection (before it has become severe), so being on them continuously when you happen to catch COVID-19 is probably is a net negative.

IBD is sometimes mischaracterized as a hyperactive immune system, and sometimes mischaracterized as an immunocompromised state. While either of those may sometimes be true, IBD is more of a *specific* inappropriate immune response to something that properly belongs in your gut - perhaps a bacterium, perhaps a component of the gut wall. Suppressing the immune system broadly can help control this, which is why prednisone helps control IBD, but we only do that because we have no idea how to suppress just the inappropriate immune response.

I think everyone needs to do a better job preventing the spread of COVID-19. When we take risks in this instance we are taking both personal risk and creating risk in our community. The right public health question to ask before entering that indoor space is “how many people am I willing to kill to engage in this activity?”

Last edited by Scott F

I disagree with the notion that having an autoimmune disease does not mean you are not immune compromised. Even after colectomy and the target organ is gone, you still have the underlying autoimmune disease and it is not uncommon for patients to have other autoimmune disorders to appear later. You are compromised because of the excessive immune response to minor or even non-pathogenic microbiotica. This is true even if you are perfectly healthy now.

If you are on medications like immune modulators, biologics, or steroids you are also immune suppressed. This may be beneficial in the presence of COVID-19.

Also, it is incorrect to assume that the medication actually caused UC in Jackie’s case, even though it is a common misunderstanding. The susceptibility to UC was always there. The medication was simply the trigger.

The colectomy or j-pouch is not the issue. Again, it is the underlying disease, and it is systemic.

For my household, Thanksgiving will be just our household and my son+wife, who test weekly. We have not done any indoor dining since March. We do go to the grocery store, but in my community masks have been mandated since at least May, and people are very compliant.

Please, everyone be safe and mindful, so we can get to the end of this!

Jan

My significant other gave it to me after a business trip in March.  He had a horrible experience (no underlying health conditions).  Mine was bad, but not horrible.  However, now I'm having issues after the fact.  In fact I thought I had it again because all of the symptoms I had with Covid came back 7 months after being infected!  They did all kinds of tests because blood clots have been happening at this point in some Covid patients.  Anyway, all was normal except for my Mean platelet volume (MPV), which was low.  It's never been low before.  The dr didn't explain why.  I read that people with IBDs often have a low MPV.  Kind of made me sad because I thought I was over that.  Also interesting that I was never low before.  Watched 60 Minutes last night...the segment Long Haulers.  Scary because I'm experiencing some of that.  So...long story long...even if you have a milder case of Covid, there is no guarantee you won't have problems later.  We are getting another antibody test on Friday to see if we still have the antibodies.  I work in a school where we have over 5,000 students and over 600 staff...total of over 6,000 people.  Every day it's scary even though we are wearing masks and keeping socially distant.  Keep safe everyone!

@Disneynut posted:

My significant other gave it to me after a business trip in March.  He had a horrible experience (no underlying health conditions).  Mine was bad, but not horrible.  However, now I'm having issues after the fact.  In fact I thought I had it again because all of the symptoms I had with Covid came back 7 months after being infected!  They did all kinds of tests because blood clots have been happening at this point in some Covid patients.  Anyway, all was normal except for my Mean platelet volume (MPV), which was low.  It's never been low before.  The dr didn't explain why.  I read that people with IBDs often have a low MPV.  Kind of made me sad because I thought I was over that.  Also interesting that I was never low before.  Watched 60 Minutes last night...the segment Long Haulers.  Scary because I'm experiencing some of that.  So...long story long...even if you have a milder case of Covid, there is no guarantee you won't have problems later.  We are getting another antibody test on Friday to see if we still have the antibodies.  I work in a school where we have over 5,000 students and over 600 staff...total of over 6,000 people.  Every day it's scary even though we are wearing masks and keeping socially distant.  Keep safe everyone!

You are soo strong!!! I love that!

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