Crohns / ulcerative colitis sufferers

Soldato
Joined
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Woking
That’s most of us I’d assume? I mean most IBD drugs suppress the immune system in some way.

I think most of us are deemed to be “moderate” risk currently. Certainly IBD hasn’t been named alongside some of the other conditions that pose a high risk.

Within IBD there was a link with guidance for different medications and it was essentially some people taking steroids and newly commenced biological treatment that were deemed to be higher risk.

I do wonder what will be found re: Crohns meds as we get more data, obvs we know we can find it harder to shake off colds/flu etc... on the other hand re: the massive immune response seen in severe Covid19 patients would some Crohn’s meds actually help reduce that? Like might we find Crohn’s patients might have a mild to moderate infection for longer but perhaps slightly reduced chance of the massiveimmune response?

I guess lots just isn’t known yet but at least IBD isn’t named yet among some of the other conditions.

2 weeks ago the advice seemed to be that anyone with a suppressed immune system is to be considered high risk and therefore I isolated myself. It seems like the goal posts have moved a bit because I agree with you now, it seems like we are only considered to be moderate risk. Does that mean we could be shopping, for example?

It would be nice if we had a more balanced immune response. I hadn't realised that Covid19 did that.
 
Caporegime
Joined
29 Jan 2008
Posts
58,912
2 weeks ago the advice seemed to be that anyone with a suppressed immune system is to be considered high risk and therefore I isolated myself. It seems like the goal posts have moved a bit because I agree with you now, it seems like we are only considered to be moderate risk. Does that mean we could be shopping, for example?.

There is a link to an lancet article in this post that I found interesting:

https://forums.overclockers.co.uk/posts/33423540/

Also I posted a link to the below back on the 12th of March - last update 26th of March, I mean I guess everyone is isolating mostly now anyway, link below and have copied the summary - it seems some of the advice re: stopping treatment (if you become infected) is varying a bit between treatments. It could be worth dropping your IBD team an e-mail if you've got some concerns or your case isn't standard etc.. but it sounds like most people will be kept on the same treatment for the moment (unless infected).

Still plenty of unknowns unfortunately and the advice is basically avoid non-essential travel (same for most people I guess).

edit - not this is from an international organisation so the travel advice is not really country specific... the summary re: risks, medications etc.. might be interesting to read though.

https://www.ioibd.org/ioibd-update-...s-with-crohns-disease-and-ulcerative-colitis/
Update: 26 March 2020

Summary of Statements

These statements represent the summation of expert opinion and should be interpreted in the context of the individual patient and the managing healthcare provider who knows her or him. These are not guidelines and these may be updated as knowledge and the situation evolve.

  1. The risk of infection with SARS-CoV-2 is the same whether a patient has IBD or does not have IBD.
  2. Independent of treatment, patients with Crohn’s disease do not have a greater risk of infection with SARS-CoV-2 than the general population.
  3. Independent of treatment, patients with ulcerative colitis do not have a greater risk of infection with SARS-CoV-2 than the general population.
  4. It is uncertain if active inflammation from IBD increases the risk of getting SARS-CoV-2.
  5. It is uncertain if patients with IBD who are exposed to SARS-CoV-2 have a higher risk of developing COVID-19 compared to patients without IBD.
  6. It is uncertain if patients with IBD who develop COVID-19 have a higher mortality compared to patients without IBD.
  7. Patients with an ostomy are not at increased risk for COVID-19.
  8. Patients with a J pouch are not at increased risk for COVID-19.
  9. Elective surgeries and endoscopies should be postponed at this time.
  10. It is uncertain if healthcare workers with IBD on immune modifying medications working in an environment with known or suspected COVID-19 patients should continue working in that same environment.
  11. Patients with IBD on immune modifying medications should discontinue any non-essential travel.
  12. It is safe to continue infusions in an infusion center, assuming the infusion center has a screening protocol in place.
  13. 5-ASA does not increase the risk of infection with SARS-CoV-2.
  14. 5-ASA does not increase the risk of COVID-19.
  15. Patients taking 5-ASA therapy should not reduce the dose of therapy to prevent SARS-CoV-2 infection.
  16. Patients taking 5-ASA therapy should not discontinue therapy to prevent SARS-CoV-2 infection.
  17. Patients taking 5-ASA therapy should not stop therapy if they test positive for SARS-CoV-2 but don’t have COVID-19.
  18. Patients taking 5-ASA therapy should not stop therapy if they develop COVID-19.
  19. Budesonide does not increase the risk of infection with SARS-CoV-2.
  20. Budesonide does not increase the risk of COVID-19.
  21. Patients taking budesonide therapy should not reduce the dose of therapy to prevent SARS-CoV-2 infection.
  22. Patients taking budesonide therapy should not discontinue therapy to prevent SARS-CoV-2 infection.
  23. It is uncertain if patients taking budesonide therapy should stop therapy if they test positive for SARS-CoV-2 but don’t have COVID-19.
  24. It is uncertain if patients taking budesonide therapy should stop therapy if they develop COVID-19.
  25. Prednisone (≥20mg/d) increases the risk of infection with SARS-CoV-2.*
  26. Prednisone (≥20mg/d) increases the risk of COVID-19.*
  27. Patients taking prednisone therapy (≥20mg/d) should reduce the dose of therapy to prevent SARS-CoV-2 infection.
  28. Patients taking prednisone therapy (≥20mg/d) should discontinue therapy (taper as appropriate) to prevent SARS-CoV-2 infection.*
  29. Patients taking prednisone therapy (≥20mg/d) should stop therapy (taper as appropriate) if they test positive for SARS-CoV-2 but don’t have COVID-19.
  30. Patients taking prednisone therapy (≥20mg/d) should stop therapy (taper as appropriate) if they develop COVID-19.
  31. It is uncertain if azathioprine/6-MP increases the risk of infection with SARS-CoV-2.
  32. It is uncertain if azathioprine/6-MP increases the risk of COVID-19.
  33. Patients taking azathioprine/6-MP should not reduce the dose of therapy to prevent SARS-CoV-2 infection.
  34. Patients taking azathioprine/6-MP should not discontinue therapy to prevent SARS-CoV-2 infection.
  35. Patients taking azathioprine/6-MP should stop therapy if they test positive for SARS-CoV-2 but don’t have COVID-19.
  36. Patients taking azathioprine/6-MP should stop therapy if they develop COVID-19.
  37. It is uncertain if methotrexate increases the risk of infection with SARS-CoV-2.
  38. It is uncertain if methotrexate increases the risk of COVID-19.
  39. Patients taking methotrexate should not reduce the dose of therapy to prevent SARS-CoV-2 infection.
  40. Patients taking methotrexate should not discontinue therapy to prevent SARS-CoV-2 infection.
  41. Patients taking methotrexate should stop therapy if they test positive for SARS-CoV-2 but don’t have COVID-19.*
  42. Patients taking methotrexate should stop therapy if they develop COVID-19.
  43. It is uncertain if anti-TNF therapy increases the risk of infection with SARS-CoV-2.
  44. It is uncertain if anti-TNF therapy increases the risk of COVID-19.
  45. Patients taking anti-TNF therapy should not reduce the dose of therapy to prevent SARS-CoV-2 infection.
  46. Patients taking anti-TNF therapy should not discontinue therapy to prevent SARS-CoV-2 infection.
  47. It is uncertain if patients taking anti-TNF therapy should stop therapy if they test positive for SARS-CoV-2 but don’t have COVID-19.
  48. Patients taking anti-TNF therapy should stop therapy if they develop COVID-19.
  49. Vedolizumab does not increase the risk of infection with SARS-CoV-2.
  50. Vedolizumab does not increase the risk of COVID-19.
  51. Patients taking vedolizumab should not reduce the dose of therapy to prevent SARS-CoV-2 infection.
  52. Patients taking vedolizumab should not discontinue therapy to prevent SARS-CoV-2 infection
  53. It is uncertain if patients taking vedolizumab should stop therapy if they test positive for SARS-CoV-2 but don’t have COVID-19.
  54. It is uncertain if patients taking vedolizumab should stop therapy if they develop COVID-19.
  55. Ustekinumab does not increase the risk of infection with SARS-CoV-2.
  56. Ustekinumab does not increase the risk of COVID-19.
  57. Patients taking ustekinumab should not reduce the dose of therapy to prevent SARS-CoV-2 infection.
  58. Patients taking ustekinumab should not discontinue therapy to prevent SARS-CoV-2 infection.
  59. It is uncertain if patients taking ustekinumab should stop therapy if they test positive for SARS-CoV-2 but don’t have COVID-19.
  60. Patients taking ustekinumab should stop therapy if they develop COVID-19.
  61. It is uncertain if tofacitinib increases the risk of infection with SARS-CoV-2.
  62. It is uncertain if tofacitinib increases the risk of COVID-19.
  63. Patients taking tofacitinib should not reduce the dose of therapy to prevent SARS-CoV-2 infection.
  64. Patients taking tofacitinib should not discontinue therapy to prevent SARS-CoV-2 infection.
  65. Patients taking tofacitinib should stop therapy if they test positive for SARS-CoV-2 but don’t have COVID-19.*
  66. Patients taking tofacitinib should stop therapy if they develop COVID-19.
  67. It is uncertain if patients taking combination therapy with an anti-TNF and thiopurine/methotrexate should reduce the dose of the thiopurine/methotrexate to prevent infection from SARS-CoV-2.
  68. Patients taking combination therapy with an anti-TNF and thiopurine/methotrexate should stop the thiopurine/methotrexate if they test positive for SARS-CoV-2 but don’t have COVID-19.
  69. Patients taking combination therapy with an anti-TNF and thiopurine/methotrexate should stop the thiopurine/methotrexate if they develop COVID-19.
  70. Patients taking clinical trial drugs should not discontinue therapy to prevent SARS-CoV-2 infection.
  71. Patients taking clinical trial drugs should stop therapy if they test positive for SARS-CoV-2 but don’t have COVID-19.*
  72. Patients taking clinical trial drugs should stop therapy if they develop COVID-19.
  73. A patient with moderately to severely active Crohn’s disease or ulcerative colitis (new diagnosis or relapsing disease) should be treated with the same therapies you would choose in the pre-COVID-19 era.*
  74. In an IBD patient who tests positive for SARS-CoV-2 and whose IBD meds have been stopped because of this, IBD meds can be restarted after 14 days (provided they have not developed COVID-19).
  75. In an IBD patient who develops COVID-19 and whose IBD meds have been stopped, IBD meds can be restarted after COVID-19 symptoms resolve.*
  76. In an IBD patient who develops COVID-19 and whose IBD meds have been stopped, IBD meds can be restarted after 2 nasopharyngeal PCR tests are negative.
* These are statements that had a higher degree of disagreement amongst the panelists.
 
Last edited:
Soldato
Joined
17 Jun 2007
Posts
9,300
Anyone received a stay in for 12 weeks letter yet? I’ve not had one and I’m a little bit surprised

I got a NHS 12 week stay inside letter a week last thurs. Just done that survey and It says I'm most likely in the highest risk WTF..
I think its the aza and hypertension thats the triggers.

I'm behind with my blood tests. Not sure what I should do about that really
 
Last edited:
Soldato
Joined
2 May 2011
Posts
11,889
Location
Woking
I got a NHS 12 week stay inside letter a week last thurs. Just done that survey and It says I'm most likely in the highest risk WTF..
I think its the aza and hypertension thats the triggers.

I'm behind with my blood tests. Not sure what I should do about that really

I think if you just had hypertension or just on azathioprine, you'd be OK, but the combination probably enhances the risk.
 

VoG

VoG

Soldato
Joined
20 Jan 2004
Posts
5,870
Location
Nottingham
I got a NHS 12 week stay inside letter a week last thurs. Just done that survey and It says I'm most likely in the highest risk WTF..
I think its the aza and hypertension thats the triggers.

I'm behind with my blood tests. Not sure what I should do about that really

It is the hypertension that's the trigger, i've been following Dr John Campbell on youtube & he does a daily Covid update, he's gone over all the stats & talks at great length about the various added risk factors & hypertension is right up there near the top of the list.
 
Soldato
Joined
17 Jun 2007
Posts
9,300
My BP is Normal now, But thats due to the meds.
I've left a message for my IBD nurse regarding the blood tests...I missed my Dec one so haven't had one since Sept...Due another now but with the stay at home advice???
 
Associate
Joined
1 Feb 2017
Posts
1,052
I got the 12 week letter today. No idea why as I’ve got mild ulcerative colitis which I take Asacol daily for. Only thing I can think of is that I’ve had prednisone 3/4 times in the last 12 months.
 
Soldato
Joined
15 Jan 2003
Posts
4,947
Location
South East
I got a NHS 12 week stay inside letter a week last thurs. Just done that survey and It says I'm most likely in the highest risk WTF..
I think its the aza and hypertension thats the triggers.

I'm behind with my blood tests. Not sure what I should do about that really

Got the letter last week along with the texts. I'm also behind on a blood test which I tried to get sorted out early March only to keep turning up at the hospital to find that they had closed early for the day. I'm on Aza and Pentesa but nothing else and generally have been OK since 2016.
 
Tea Drinker
Don
Joined
13 Apr 2010
Posts
18,419
Location
Sunny Sussex
Been flaring for a few weeks and Prednisolone is working but the side effects for me are quite extreme, not the typical weight gain, moon face but the mood and tension, hateful drug.

I'm on and now not working asacol which worked for five years and azathioprine which again worked for five years, both have pretty much stopped working. Got a phone consultation and a load of blood test to start a biological treatment, which one don't know yet...........
 
Soldato
Joined
24 Dec 2004
Posts
18,876
Location
Telford
Been flaring for a few weeks and Prednisolone is working but the side effects for me are quite extreme, not the typical weight gain, moon face but the mood and tension, hateful drug.

I'm on and now not working asacol which worked for five years and azathioprine which again worked for five years, both have pretty much stopped working. Got a phone consultation and a load of blood test to start a biological treatment, which one don't know yet...........

I hate Pred with a vengeance. Been very slowly coming off it for nearly a year. Down to 4mg now but the side effects are horrendous. My endocrine system has taken a massive pounding and getting it going again without the Pred is fun.....

Biological treatments did not do much for me other than make me sick but I was to far gone for them to get a real chance. A couple of my friends are on them and had fantastic results pretty much symptom free apart from the odd mild lapse.

Hope they get you sorted soon being in a flare is no fun and if they can get you on something other than steroids that works well will be much better too.
 
Soldato
Joined
21 Mar 2012
Posts
4,284
Been flaring for a few weeks and Prednisolone is working but the side effects for me are quite extreme, not the typical weight gain, moon face but the mood and tension, hateful drug.

I'm on and now not working asacol which worked for five years and azathioprine which again worked for five years, both have pretty much stopped working. Got a phone consultation and a load of blood test to start a biological treatment, which one don't know yet...........
Try Methotrexate?
 
Caporegime
Joined
29 Jan 2008
Posts
58,912
I'm on and now not working asacol which worked for five years and azathioprine which again worked for five years, both have pretty much stopped working. Got a phone consultation and a load of blood test to start a biological treatment, which one don't know yet...........

Quite possibly Humira - I'm on that at the mo and not had any bad side effects from it.
 
Caporegime
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58,912
It was mostly some other poster pooley who was being a bit of a numpty and banging on about trying some vegan/raw food diet etc... and how this inflammation we're calling a disease is down to what we're putting in our bodies/bad diet etc..

Would switching to a diet such as Huel help?

I'm not sure why it would?

If you're not having a flare up then it's just food. If you are having a flare up then it's got a decent amount of fibre in it and that could cause extra irritation/pain in some people.
 
Soldato
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Hampshire
Changing to an anti inflammatory diet had the biggest impact on my IBD. More than biologics.

It's what got me off steroids, and I'd been switching between three for about a year and a half.

Everyone's different, and I'm not saying it would work for anyone else, but it certainly did for me.
 
Soldato
Joined
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5,692
Would switching to a diet such as Huel help?

Changing to an anti inflammatory diet had the biggest impact on my IBD. More than biologics.

It's what got me off steroids, and I'd been switching between three for about a year and a half.

Everyone's different, and I'm not saying it would work for anyone else, but it certainly did for me.

I'd avoid Huel as a method of trying to improve IBD symptoms, I use Huel but only when I'm not flaring (which is roughly 90% of the year).

Diet has enabled me to come off medication (after over 15 years). I removed gluten from my diet, cleaned it up the rest of my diet, have mild alcohol consumption, avoid dairy as much as I can, and that's it. High fat, high protein, medium carbs. No more symptoms.

Been doing this for over two years now, have never felt better.

Last years colonoscopy revealed I still have UC, that's never going away, but the symptoms can be controlled in my instance (everyone is different and they need to find their own path, keep experimenting).

Mild to moderate weekly exercise can't be undervalued either, and as much sun exposure as you can - avoid caffeine and sugar if it's a trigger.

If you're not having a flare up then it's just food.

No, not all "food" is created equal. Not even close.

The Western diet is a shambles and is mostly the blame for most modern diseases, namely diabetes and obesity.

Let food be thy medicine.
 
Caporegime
Joined
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Diet has enabled me to come off medication (after over 15 years).

You don't know that, aren't in a position to make that claim - you're a sample size of 1.

No, not all "food" is created equal. Not even close.

The Western diet is a shambles and is mostly the blame for most modern diseases, namely diabetes and obesity.

Let food be thy medicine.

That isn't what I claimed - I never said all food is created equal, I'm essentially saying I'd suspect huel is neither here nor there re: whether it helps if you're not having a flare up. Maybe it will be negative, it does seem to have a funny effect on some non-IBD people when they first try it.

Some foods might irritate the gut/exacerbate things with IBD and it is generally a good idea to eat healthily.

You might observe that you can't tolerate certain foods or that they do trigger flare ups and exclude them from your diet - note that doesn't equate to a claim that food can allow you to come off your medicine or put you into remission.

You still have this underlying condition regardless of what you eat and whether you go into remission or come off medication is down to the disease progress itself not just whether you've eliminated foods that can exacerbate the disease - eliminating foods that exacerbate the disease AFAIK just eliminate that additional aggravation etc...

It's also important to do this stuff with a dietitian - I mean yeah you can observe that X or Y seem to irritate things via an elimination diet, it's not perfect but it can give you a rough idea of stuff to cut out - but if someone were to say eat only organic vegan food, do yoga, pray to Buddha, drink a special tea, take various supplements from some health food shop and cut out dairy and gluten and then claim that that program has helped in reality they don't really know... in doing that they might have eliminated some stuff that may have otherwise aggravated things but also they may have eliminated more than they needed to and added in things that are superfluous.

Eliminating too much needlessly is perhaps a concern too. Ideally you do this stuff with an IBD dietitian involved (not a nutritionist) and with some guidance from them.
 
Soldato
Joined
27 Dec 2011
Posts
5,692
You don't know that, aren't in a position to make that claim - you're a sample size of 1.

I am very much in a position to make the claim that my diet has changed my personal medical circumstance.

That isn't what I claimed - I never said all food is created equal

You said it's just food, implying there's no difference between food A and food B, when there is.
 
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