I've had a j-pouch for 33 years, just got over Covid this week.  Not a big deal for me, I've been way worse with IBD issues. 

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.

I certainly have a pulse oximeter available, but I’m also avoiding any possible exposure. I’m not even going into grocery stores, nor is anyone in my household.

I read an article on the Crohns And Colitis Foundation about Covid 19. It said we do not have a increased risk of contracting the disease. I believe them since they are a good research facility

What you doctor said sounds pretty smart too! I think you should continue doing what you are doing.

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 -

An interesting article on BBC website today reporting that the biologic drug tocilizumab is actually being used as a successful treatment for severe covid-19 by tamping down the cytokine storm immune response.  Maybe us j-pouch remicade patients are actually less vulnerable than we think.

https://www.bbc.com/news/health-55002339

RossG,

That's an interesting study, thanks for posting it.

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?”

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

All I can add to all your responses, which is great info.   I would not want to battle Covid19 with our issues as J pouchers.  It's hard enough in day to stay on track with bathroom time & all that. 

Stay safe all & have a blessed Thanksgiving. 

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!

I can add that I too have had Covid.  I was exposed on 11/7 (at a birthday party), and symptoms showed on 11/11, and positive test on 11/15.  I believe I've had a mild case so far, but have some lingering symptoms, but the county Board of Health has cleared me to be able to be out.  However, I am staying home as much as possible.  I do go to the grocery weekly, but no church, and very rarely to a restaurant.  I don't know if my j-pouch has effected Covid symptoms, or if Covid effected my colon, but I haven't noticed any changes.  Also, my husband got it the same time I did, with the same symptoms. So, in my case, I don't think my j-pouch has had any effect in my response to Covid.  Keeping my fingers crossed that I don't have symptoms return in the future.

Did any of you have issues with taste or smell? I know 2 friends who recently had Covid, one had impacts on taste and smell, the other didn't. It's a curious symptom to me because the only time I have ever seen it as a personal injury attorney is in traumatic brain injury cases. I remember a case around 15 years ago in which a plaintiff had a very serious TBI and cognitive issues, as well as claims that he permanently lost his sense of taste and smell. He specifically claimed he could no longer enjoy steaks or other food as he couldn't taste them. It makes me wonder what the Covids do in the brain to cause these symptoms, which seem to usually be temporary with Covid cases. I wonder if any studies have been done to determine what the Covids do that cause these symptoms?

I lost my sense of smell.  Taste was just diminished.  Boyfriend didn't lose his nor did his son.  Almost everyone I know at our school that has contracted Covid has lost their sense of smell.  That makes me worry about the brain thing!

I think it’s more likely that the olfactory receptors in the nasopharynx are affected, rather than the brain. But we’ll probably find out more on the months to come.

Disneynut, has your sense of smell returned? What about your sense of taste?

Yes, smell has returned.  Taste is also fine.  When I was having issues a few weeks back, my smell was again diminished, although I could still smell a bit.  Funny because all of a sudden when I was going to the bathroom, I thought...yep, my smell is back, lol.  I didn't find losing it horrible since I'm in the bathroom so much!!  It was mostly just weird.  That being said, I didn't lose my sense of taste completely so I think that would be horrible!

This was posted on The Atlantic Monthly website.  They do fantastic reporting on Covid, and because I see them referred to as a go to resource I feel comfortable posting this for my UC and Crohn community.  It does differ from others' experiences as related here.  Then again we are all different.

One question, answered: If my immune system is unusually overactive or weakened, can I still get the vaccine? “In short, yes,” our staff writer Katherine J. Wu reports:

Hope all are physically well and staying sane.  meow, jan

Thanks for the information jan15.  I still have mixed emotions about getting the vaccine.  I am having some health issues right now with my ileum and very anemic.  I am afraid of what the vaccine could trigger in my overactive immune system right now.  Also don't want to get the virus.  My husband has had the first shot and getting the second on the 19th.  Would love to hear from anyone on here that has had the shot.

jackie--by all means check with your gi doc about the shot's safety in your condition.  you need input to make the decision.  also, please correct your anemia.  have you had blood test?  you might need an iron infusion.  and of course it always helps to eat iron rich food.  but if your ferritin level is low food alone won't get you past this.  I speak from experience!  

also, about the article.  it would be good to get feedback from others who have heard info from their docs or have personal experience.  if the latter I am sorry and hope you are not a long hauler.  

be well, wear a mask!!  jan

I am currently on Stelara. My pharmacist as well as my GI informed me that taking the covid vaccine was safe. When the pandemic started, my GI informed me that I was not considered a high risk even if I was taking a biologic because the dosage wasn't high enough to completely suppress my immune system. According to the Stelara website, it is not considered a immunosuppressant drug but a immunomodifier drug. It modifies your immune system to allow your body own immune system to fight the inflammation. 

@RondaC posted:

I am currently on Stelara. My pharmacist as well as my GI informed me that taking the covid vaccine was safe. When the pandemic started, my GI informed me that I was not considered a high risk even if I was taking a biologic because the dosage wasn't high enough to completely suppress my immune system. According to the Stelara website, it is not considered a immunosuppressant drug but a immunomodifier drug. It modifies your immune system to allow your body own immune system to fight the inflammation.

Hope the Stelara is working for you

It is funny to read how Drs differ in their views on us being high-risk for COVID-19.

I have a j-pouch due to UC, and am currently on no medications. I was at a well known IBD research center a few weeks ago for a consultation with a group of Drs, and when we were talking about vaccine eligiblity, I told them that when I filled the the vaccine eligibility forms, I did not select the “I am immunocompromised” option, because I am not on any meds. All four Drs in the room laughed at the same time. They told me, “you ARE immunocompromised!”

Yet, @RondaC was told that they are not high risk despite being on Stelera!

I thought that I am not immunocompromised, because my surgeon’s assistant told me that I am not immunocompromised if I am not on any immune suppressant drugs.

Maybe surgical teams see patients from a different perspective than GIs?

I know think that this is a good test for us to see which Drs see us as people rather that just objects of their study, and which ones genuinely value our well-being. The exact definition of immunocompromised state *for vaccine eligibility* has not yet been defined by the authorities. I am hoping that they will leave this decision to our providers.

nobody has all the info on covid and ibd.  doctors don't know all.  shame on them: they shouldn't be laughing at you.

this is from an IBD newsletter that cites recent research articles:  https://ibdwatch.com/2021/01/p...ne-despite-concerns/

BTW, you can sign up for getting info on articles through the above link.  I often read the summaries and occasionally post them.  stay well, stay sane, jan

My GI told me that I needed to be vaccinated but I have to wait until my age group. I can't get a vaccine early due to my IBD.

@jan15 The discussion was not about getting the vaccine at some point. The discussion was about getting it earlier in the immunocompromised group. Actually, the fact that they laughed did not come as offensive, because they were more protective of me than my surgeon's care team. These Drs were telling me that I do qualify to enroll in the priority group, not wait until it is available to the general public.

If the decision to give the Covid vaccine earlier will be left to our providers, I feel lucky that I have providers that consider me eligible for the vaccine before the general population. They gave me a pneumonia shot while I was there, without me even asking.

Hi, I was dx with UC in 98 very bad case and after take down and Jpouch in 2013 I still have UC, IBD.  My immune system is not 100% and I don't take drugs except for Lomotil prn and Hyoscyamine prn.  My primary Dr who I just seen said that I should put on form immunocompromised because I am.  I take my vitamins and exercise and do I need to stay strong.  The fact is I still am not because I lack nutrient and the more u put in the more comes out no matter what for me anyway.  I think your age is the 2nd factor.   I am on a list here in my county and not worried about it.  I don't think I am at any higher risk than getting the flu in winter.  I always get the flu even with flu vaccine.  I am staying home mostly and seeing few people.  Just getting what I need.  Waiting for Spring to get out more and know this will subside.  Stay safe everyone.  We have enough on our plate we don't need this!! 

I am recently recovered from Covid.  I don’t think I’ve been that sick in a very long time.  Difficulty breathing, constant dry cough, fever, aches, migraine-like headache.  I was fine for the first nine days and then almost overnight the symptoms appeared.  I went to an urgent care center where they’ve been treating hundreds of patients. They put me on a medrol dose pack, z-pack, inhaler, and cough pills - benzonatate. There were a few times that I was close to going to the ER. It took another week+ for symptoms to subside.  I still get headaches but not as debilitating. The only issue with my GI system was diarrhea which I attributed to all the meds, since I’m back to my ‘normal’ BM’s. The cough was so severe that I couldn’t control my bladder, that has since resolved itself. Covid ran through our house. There are six adults (4 young adult children) living home. We all had varying symptoms from loss of smell/taste, to my more severe symptoms.  All-in-all, it’s taken me three weeks to feel better and breath more normal. I am doing breathing exercises daily. My husband had a setback this weekend where a severe headache and body aches reappeared.  It’s a viscous virus.  Be careful and be aware of any symptoms.