Crohns / ulcerative colitis sufferers

[Psycho Sonny]

Won't go into detail but braodly agree from personal experience.

Although I am struggling mentally to keep it up atm, since I moved to a pseudo paleo diet 18 months ago, consisting of less carbs, more natural fats from butter, cononut oil, avocado, etc, normal amount of fibrous food (berries, nuts, greens, etc), I have felt better than ever, and my CRP has dropped to normal levels (in combintion with meds). High fibre has always appeared to be a friend of mine. Crohns here btw.

Keep at it. Don't give up if your going through tough times there is only good times ahead with persistence and dedication.

My Crohn's test came back negative. So it looks like I don't have an IBD. I think I have a mild form of IBS which is set off by specific types of dairy. Paneer is the worst for it. Oddly enough halloumi and cottage cheese are fine. Even though both are extremely similar. Everyone is different due to genetics what sets me off might be fine for you and vice versa.

I think I'm also allergic to or have an intolerance to something which is a common ingredient in breads and lager, etc. Some pints give me a terrible sore throat and I mean really bad but others don't I've never been able to narrow it down because in the past we would visit various pubs and drink whatever they had on tap so never really stuck to the same thing all night.

I'm thinking it's a gluten, wheat, barley, malt or something else along those lines that's causing it along with some dairy products. I've been mainly dairy free for several years now. Again it's another myth that we need dairy beyond the first few years of our lives. Probably not required at all after you start having solid foods so around 2 years old plus you could avoid dairy and be 100% fine and grow normally with strong bones with a nutritionally complete diet from elsewhere.

How does one go about getting an allergy test full scale? GP or private hospital? I'd like to know for sure what causes me issues. I'm sorry for all the folk in here suffering and I can symphathise everyone is different but my original post was to simply say crisps should be avoided and if you cannot tolerate any of the alternatives I posted then I'm sure you know what you can tolerate and have an alternative snack that is much better for you.

Vegetable oils are extracted using chemicals and high concentrations of heat, etc. These oils were never consumed at all by humans until the past century. Before that they never existed in the food chain. They are sold because they are cheap to make in terms of mass production and highly profitable much like corn syrup replaces sugar in everything in America.

If one of you tries coconut oil and starts using butter instead of margerine and it improves your health then that can only be seen as a good thing.

I've done some research into Crohn's and apparently overuse of antibiotics can cause it where the good bacteria in your stomach is effectively destroyed and it never recovers from the damage done in the aftermath. I wonder if supplementing actimel and yogurt and other probiotics could help others who are on antibiotics from getting Crohn's. I'm not saying that is the only cause but one potential cause of it and it's not something that they know a lot about in that regard.

 

[DB_SamX]

What kind of milk is cottage cheese made from?

Halloumi is traditionally made frim sheep's milk and more tolerable by lactose intolerant/sensitive people.

Also check out A2 milk from Channel Island milk...better from a digestive viewpoint.

 

[Maccapacca]

Did anyone get their email from Matt Hancock tonight about the covid vaccine?

 

[chipperhead]

Did anyone get their email from Matt Hancock tonight about the covid vaccine?

Nothing, haven't had a shielding letter either like the last two times.

 

[dowie]

Did anyone get their email from Matt Hancock tonight about the covid vaccine?

Nope, I had an e-mail tonight but it was just in relation to shielding etc..

 

[Minusorange]

If one of you tries coconut oil and starts using butter instead of margerine and it improves your health then that can only be seen as a good thing.

I bought some to try just before christmas but haven't got round to using it yet as I haven't fried anything for a while but I'm going to be doing a prawn chow mein soon so I'll use it then in place of the sunflower oil

Did anyone get their email from Matt Hancock tonight about the covid vaccine?

I'm not expecting one given how it's been run I fear I'll be missed off any list with my official diagnosis coming only just before Christmas

I don't even know which vulnerable tier I'm in because nobody has told me, I think it's the 4th one for just immuno suppressants but I'm not entirely sure

 

[dirtychinchilla]

Did anyone get their email from Matt Hancock tonight about the covid vaccine?

Nope, I'm not shielded either. I hope that, at the very least, they've got me down in the moderate risk/underlying health conditions category. I was sort of expecting to be put into the high risk, but I suppose I've only got one think wrong with me thank goodness

 

[Maccapacca]

Nope, I'm not shielded either. I hope that, at the very least, they've got me down in the moderate risk/underlying health conditions category. I was sort of expecting to be put into the high risk, but I suppose I've only got one think wrong with me thank goodness

The conditions are quite specific, expect most will fall into the immunosuppressant category. After this think you'd fall into age groups?

Clinical conditions list:

• a blood cancer (such as leukaemia, lymphoma or myeloma)
• diabetes
• dementia
• a heart problem
• a chest complaint or breathing difficulties, including bronchitis, emphysema or severe asthma
• a kidney disease
• a liver disease
• lowered immunity due to disease or treatment (such as HIV infection, steroid medication, chemotherapy or radiotherapy)
• rheumatoid arthritis, lupus or psoriasis
• have had an organ transplant
• had a stroke or a transient ischaemic attack (TIA)
• a neurological or muscle wasting condition
• a severe or profound learning disability
• a problem with your spleen, example sickle cell disease, or you have had your spleen removed
• are seriously overweight (BMI of 40 and above)
• are severely mentally il

 

[dirtychinchilla]

The conditions are quite specific, expect most will fall into the immunosuppressant category. After this think you'd fall into age groups?

I'm more concerned whether they actually track it or not. I was told, when I switched over Stelara mid-2020, that I'd be in a shielded category. I've never received any indication from the government etc. of that.

Not that I want to be shielded...I'm enjoying what little freedom I have these days.

 

[Garyj881]

I have suffered UC for around fifteen years, I was diagnosed through a colonoscopy, whilst not obvious at first on exiting my lower colon he brushed my side wall with the camera and it bled. I had quite a stressful job at the time and found alcohol made me a lot worse. I've never been hospitalised and only been at my worst when stressed. After losing my Mum two days ago, you could say I'm pretty bad with a fair amount of blood.

I generally eat what I want except fruit with skin on and some veg. If I eat nuts, I can produce my own peanut butter. I went nearly a full year with out drinking alcohol (in moderation)but started drinking again after being made redundant in August last year.

I can deal with the stomach aches and pains but toilet visits are difficult. I've probably produced four solids in ten years. Currently on three 800mg Asacol a day. Reading through the thread, has the been any updates regarding a possible cure? Not really expecting one, but some progression would be good to hear.

 

[Maccapacca]

I have suffered UC for around fifteen years, I was diagnosed through a colonoscopy, whilst not obvious at first on exiting my lower colon he brushed my side wall with the camera and it bled. I had quite a stressful job at the time and found alcohol made me a lot worse. I've never been hospitalised and only been at my worst when stressed. After losing my Mum two days ago, you could say I'm pretty bad with a fair amount of blood.

I generally eat what I want except fruit with skin on and some veg. If I eat nuts, I can produce my own peanut butter. I went nearly a full year with out drinking alcohol (in moderation)but started drinking again after being made redundant in August last year.

I can deal with the stomach aches and pains but toilet visits are difficult. I've probably produced four solids in ten years. Currently on three 800mg Asacol a day. Reading through the thread, has the been any updates regarding a possible cure? Not really expecting one, but some progression would be good to hear.

Cure is possibly no where to be seen it's a condition you'll live with. The only 'cure' is to chop it all out and live with a bag or J pouch. On the ladder of treatments three asacols are quite low down, you've yet to go onto immunosuppressants or biologicals. Go see your specialist, do you have an IBD nurse?

 

[dowie]

I don't even know which vulnerable tier I'm in because nobody has told me, I think it's the 4th one for just immuno suppressants but I'm not entirely sure

Are they biologics? I think you might be in the 4th one if so. I seem to be too (on biologics)... I'm a bit skeptical as in terms of actual risk I'm not sure I'm really as at risk of Covid as some of the other groups that get put into group 4, I guess they can't be too granular with these things though and I don't know for sure nor do I want to find out how I'd cope with Covid while on immunosuppressants.

I guess we might well be offered the vaccine in the next month or so (assuming Boris' timetable is adhered to) - on one hand it does feel a bit silly to be potentially getting it in line with the over 70s etc... on the other hand declining it would be silly and they have these set risk groups in place already etc..

 

[Chris344]

Has anyone heard of or tried LiveSpo probiotics?

It’s a soil based probiotic and the reviews seem very good for UC.

 

[Minusorange]

Are they biologics? I think you might be in the 4th one if so. I seem to be too (on biologics)... I'm a bit skeptical as in terms of actual risk I'm not sure I'm really as at risk of Covid as some of the other groups that get put into group 4, I guess they can't be too granular with these things though and I don't know for sure nor do I want to find out how I'd cope with Covid while on immunosuppressants.

I guess we might well be offered the vaccine in the next month or so (assuming Boris' timetable is adhered to) - on one hand it does feel a bit silly to be potentially getting it in line with the over 70s etc... on the other hand declining it would be silly and they have these set risk groups in place already etc..

Azathioprine and yes it does feel weird, my 80+ year old gran hasn't had her vaccine confirmed yet so it feels strange at my health & age wondering when I'm going to get it but this new strain has made me a little concerned, before the diagnosis I wasn't really bothered, now with immuno suppressants it does make me think a little more although my behaviour hasn't changed as I've always been careful to do the most to avoid getting it but this new strain it seems even if you do everything perfectly you still have a decent chance of being unlucky

 

[dowie]

Azathioprine and yes it does feel weird, my 80+ year old gran hasn't had her vaccine confirmed yet so it feels strange at my health & age wondering when I'm going to get it but this new strain has made me a little concerned, before the diagnosis I wasn't really bothered, now with immuno suppressants it does make me think a little more although my behaviour hasn't changed as I've always been careful to do the most to avoid getting it but this new strain it seems even if you do everything perfectly you still have a decent chance of being unlucky

Ah right, that might be a bit different, it's seems to be a lower risk medication re: Covid. though I guess it is an immunosuppressant still. Have you had any shielding letters stating you're clinically extremely vulnerable?

 

[Minusorange]

Ah right, that might be a bit different, it's seems to be a lower risk medication re: Covid. though I guess it is an immunosuppressant still. Have you had any shielding letters stating you're clinically extremely vulnerable?

Nope had nothing apart from the factsheet on the azathioprine a few days ago

 

[dirtychinchilla]

I'm sure someone here is more knowledgeable (probably @dowie), but I'd understood that one of the problems with COVID is that it created this huge immune response that immunosuppressants would actually diminish. Let's hope that's true!

 

[Maccapacca]

I'm sure someone here is more knowledgeable (probably @dowie), but I'd understood that one of the problems with COVID is that it created this huge immune response that immunosuppressants would actually diminish. Let's hope that's true!

Two inflammation biological treatments have been approved for use for covid patients so you never know if you're on biologicals you could already be on a treatment for covid right now. I'm on Infliximab.

https://www.bbc.co.uk/news/health-55574662

There are a small number of case reports on the use of anti-TNF therapy in the acute setting in patients with COVID-19. Two cases have been reported of patients with inflammatory bowel disease flares and concomitant COVID-19 infection in which administration of infliximab led to marked improvement of COVID-19 symptoms

https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(20)30309-X/fulltext

 

[dirtychinchilla]

That's great. I don't know how far you can extrapolate that, but it sounds like we'd do alright!

 

[dowie]

I'm sure someone here is more knowledgeable (probably @dowie), but I'd understood that one of the problems with COVID is that it created this huge immune response that immunosuppressants would actually diminish. Let's hope that's true!

Looking back I did ponder this last April in a reply to you in this thread but this was just me wondering too, I'm no medic.

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?

At the time I also asked a doctor/researcher friend about this back at the start of last year too re: Humira - targets TNF

By coincidence this turned up in the Lancet about a week after posting the above:

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)30858-8/fulltext

TNF is present in blood and disease tissues of patients with COVID-19
5
and TNF is important in nearly all acute inflammatory reactions, acting as an amplifier of inflammation. We propose that anti-TNF therapy should be evaluated in patients with COVID-19 on hospital admission to prevent progression to needing intensive care support.

The two recently approved biologics @Maccapacca mentioned target IL-6. But that article he linked to sounds potentially promising re: anti-TNF therapies. I'm not sure if there ever was a trial with Humira in the end though haven't checked.