I spent the first 24hrs in icu to stabilise me for surgery. I had blood and was fed through drips. Don’t think a liquid diet and protein shakes would have saved me tbh.....
Crohns / ulcerative colitis sufferers
- Thread starter ColdAsIce
- Start date
I spent the first 24hrs in icu to stabilise me for surgery. I had blood and was fed through drips. Don’t think a liquid diet and protein shakes would have saved me tbh.....
Soldato
I personally don't think doctors discuss surgery enough when it comes to UC. Crohns I can understand as the problem can still persist in other parts of the GI tract but for UC it should alleviate most issues.
It's been 10 months since my surgery and I keep thinking 'when am I going to have a flare up or a bad day?', then I realise it's not going to happen. ****ing in a bag is the best thing that happened to me.
It's been 10 months since my surgery and I keep thinking 'when am I going to have a flare up or a bad day?', then I realise it's not going to happen. ****ing in a bag is the best thing that happened to me.
Soldato
Shielding again
Rant incoming...ever since this second lockdown was advertised last weekend, ministers repeatedly said shielding would not be re-introduced.
Yet, thousands got asked to do so so far, and with only a few hour's notice (I received mine after 8pm last night). Whilst I don't dispute the need for it, or the reasons for doing so, it's appalling that it was effectively introduced with virtually no notice.
Shielding requires employees not to go outside their homes altogether for work purposes, among other restrictions. I am in the privileged position to be able to work from home permanently and with minimal disruption (work being accommodating, which I am extremely grateful for). However, others are not in such a fortunate position, and means they will most likely have to stop working and apply for SSP. They might get furloughed, which is a better alternative, but the lack of notice means employers will struggle to organise replacement staff in time.
At least it's not as bad as the first time as support bubbles and and meeting one person a day outdoors is permitted.
Rant incoming...ever since this second lockdown was advertised last weekend, ministers repeatedly said shielding would not be re-introduced.
Yet, thousands got asked to do so so far, and with only a few hour's notice (I received mine after 8pm last night). Whilst I don't dispute the need for it, or the reasons for doing so, it's appalling that it was effectively introduced with virtually no notice.
Shielding requires employees not to go outside their homes altogether for work purposes, among other restrictions. I am in the privileged position to be able to work from home permanently and with minimal disruption (work being accommodating, which I am extremely grateful for). However, others are not in such a fortunate position, and means they will most likely have to stop working and apply for SSP. They might get furloughed, which is a better alternative, but the lack of notice means employers will struggle to organise replacement staff in time.
At least it's not as bad as the first time as support bubbles and and meeting one person a day outdoors is permitted.
Soldato
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- 25 Nov 2005
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I'm now an official member 
Just got out of hospital after yet another flare up, third one in a month despite being on low strenth steroids for the first of the 3 flare up which obviously weren't strong enough and am now on the stronger steroids again for the last flare up and also on immuno suppressants for long term treatment.
Still trying to learn food types but I'm concerned like last time while I'm on steroids, the roids are going to provide a little buffer so that certain foods may be okay while on steroids but not when off so I dunno what to do, whether I should wait until I'm just purely on the suppressants before doing the food trials as I know there are foods that are perfectly fine for me that I can manage on until then
Not too fussed about having it, it's the flare ups that bother me as they seem to be on the extreme side
My bigger worry is having gone all year without getting covid, now I've a compromised immune system, I kind of wish I had caught covid earlier, especially with this new strain making it more likely to catch, only upside is I can't catch it off parents as they've just had it
Just got out of hospital after yet another flare up, third one in a month despite being on low strenth steroids for the first of the 3 flare up which obviously weren't strong enough and am now on the stronger steroids again for the last flare up and also on immuno suppressants for long term treatment.
Still trying to learn food types but I'm concerned like last time while I'm on steroids, the roids are going to provide a little buffer so that certain foods may be okay while on steroids but not when off so I dunno what to do, whether I should wait until I'm just purely on the suppressants before doing the food trials as I know there are foods that are perfectly fine for me that I can manage on until then
Not too fussed about having it, it's the flare ups that bother me as they seem to be on the extreme side
My bigger worry is having gone all year without getting covid, now I've a compromised immune system, I kind of wish I had caught covid earlier, especially with this new strain making it more likely to catch, only upside is I can't catch it off parents as they've just had it
I'm now an official member
Welcome to the clubhouse mate, sorry to hear of your troubles. Just in time for Christmas too.
As for COVID, evidence suggests catching it once doesn't mean you're safe, not something I'd be wishing for fella!
I have been following pretty much isolation protocol since March. Food and medicines delivered, no mixing, walk when I can, but only when it's quiet. Notice on door says I'm ECV, no visitors, leave parcels on doorstep.
We disinfect and remove packaging for anything that comes in. Loose fruit and veg gets washed, hands washed regularly, thoroughly and whenever we touch anything that's come from inside. We're also super vigilant about touching surfaces etc until we've washed, and disinfect touch points very regularly.
I know it's probably overkill, but it's not a risk we're willing to take. Even with a sore bum and a knackered body, I love life
With luck you'll be higher up on the vaccine list and you'll be able to sigh with relief soon enough. To be honest the Mrs and I have enjoyed the extra time together immensely.
As for steroids, they're amazing, but they suck, I'm sure you're eager to get off them asap. Last straw for me was an 18 months of bouncing between prednisolone, budesonide, and beclmatasone (Clipper). The latter being by far the most tolerable for me.
Diet, for me at least, seems to be incredibly important; It wasn't until I really dialed it in that flares got better, then under control, and eventually I could wean off the the angry pills.
Steroids or not, my MO was avoid known triggers, stay balanced and healthy, focus on anti-inflammatory foods; avoid a flare at all costs. Ifm also found digestive rest helpful.
First step for me was to set a rule of no processed crud, refined sugars, additives etc. Carefully reading labels, and making everything from scratch, including doughs, sauces etc. These days I eat plenty of things with skins and seeds, but in the early days they were a strict no go.
What steroids are you on?
What immunomodulator? Azathioprine?
It will get better mate, I promise. They've just got to take you through the journey; they'll find the right treatment for you.
In the mean time you've just got to stick it out, eat well, and keep a loo roll in the freezer
I had a surgery discussion, in very clear terms. But it took a long, long time. When I did finally have the consult, it scared the absolutely bejeesus out of me
Soldato
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What steroids are you on?
What immunomodulator? Azathioprine?
It will get better mate, I promise. They've just got to take you through the journey; they'll find the right treatment for you.
In the mean time you've just got to stick it out, eat well, and keep a loo roll in the freezer
Was on the Budesonide from November to last week but with 2 flare ups and ironically the last one being the day I was due to see my consultant (changed to telephone appointment but 2 days after was in hospital and got to see him anyway lol), he decided to switch me back to prednisolone but obviously being in hospital they've been giving me hydrocortazone through IV because of my vomiting and bloods showing infection, now I'm out I'm able to go back on the pred which I actually found really good last time so I'm happy to be back on it and taking it alongside Azathioprine
Toilet side of things I can manage, it's the stomach cramps and vomiting that does me in as they get really severe, especially not being able to keep down any fluids, seems to be basically a flare up for me blocks my gut so the only way out is the way it came in, then when it subsides I get mild diarrhea for a day and then I'm perfectly fine again, the only issue is the time it takes, it's usually a week from start to finish
Food side of things I eat as healthy as possible, Pasta and Bread are really only the processed stuff I eat, everything else I try to get and make fresh (apart from the odd snack like a packet of sweets or crisps once a week), definitely going to start a food diary now too as I want to experiment adding trial foods to things I know work, going to take some discipline to only try 1 new food at a time as I want all the food but I guess it's the sacrifice needed to be made to ensure I don't go another week in bed again
I really feel for you mate, it's a horrible place to be. Definitely worth speaking to your GP / Consultant / IBD Nurse to see what they can do for any particularly problematic symptoms.
Totally understand about nausea and vomiting, it can be really miserable, and debilitating. I take two medications for it now, although the cause isn't strictly IBD. Took Loperamide for ages too, to help thicken and slow things down, after advice from a nutritionist.
Azathioprine is the first rung of the ladder, lots of us are / were on it and found it helpful. I found it added to my fatigue slightly but otherwise I tolerate it well, and it helps with some of my other diseases.
Another thing worth mentioning is that lot of us have deficiencies, particularly Vitamin D. We often suffer from malabsorption, which is of course even worse when you can't keep anything down! They're probably already testing you, but a conversation with an appropriate medical professional never hurts.
There's quite a divide on the forums as to the efficacy of dietary changes. For me it was pivotal, for others it's made no difference, aside from trigger monitoring.
Food diary is a really powerful tool. For some it can be very enlightening, for others it's vital for establishing the right foods, and for others it's a chance to take back a bit of control from this ***** thing.
For me personally, in the early days I had to be particularly strict (motivated by terror after my surgical consult
) no crisps, cake, sweets, chocolate, red meat, processed meat etcI made my own sauces, never ate out, and primarily stuck to buying things that didn't have an ingredient list, or if they did there was just the one item! I actually found cutting out bread and pasta made me feel so much better, contrary to the advice I received at the hospital. I still barely eat it, and only homemade.
I found home made smoothies (sieved!) a great way to get fruit in the earlier days; I couldn't tolerate it otherwise, and I could only eat certain veg, cooked very well.
As you say, one item at a time, one day at a time. You'll beat it mate, and get back a semblance of normality!
Quick note; Sorry for all the personal anecdotes. I find in these topics it's best to speak from personal experience, rather than offer too much advice. I don't want a holiday, and I certainly don't want this awesome thread to be closed.
In terms of risk, while we're in a slightly riskier category (and seemingly in group 4 for the vaccine if on immunosuppressants, same as over 70 year olds) it doesn't seem to be anywhere near as risky as simply being old. In fact I do still wonder if some of the treatments for Crohn's (biologics) might be useful for severe covid, one steroid obviously has been proven to be useful for extreme cases but I'm wondering if things like humira (which I take) while in general posing a risk for flu and perhaps mean a weakened immune system should I end up with Covid might also be useful in the event it turns into a severe case (where the issue then is perhaps in part trying to reduce the immune response). There seem to have been some comments about how there ought to be studies for this but I'm not sure if there have been any? would be interested if anyone stumbles across any in future.
Well, you'd not want to catch it because of the risks involved but you'd tend to be pretty safe if you have a previous infection (for now). Duration of immunity is unknown but from the data so far reinfection cases are very rare, at the moment, you'd be better protected than from a vaccine even.
Caporegime
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I'd drop the crisps for sure. It's literally the worst thing to eat. Chocolate is far better.
Snacks that are tasty and healthy are
Gherkins
Olives
Berries (various types from blueberries to strawberries)
Salad
Apples
Pears
I don't know the ins and outs of what you can tolerate but I'd be removing crisps. The oil they are fried in is toxic to normal people.
Use coconut oil wherever you can for cooking. Alternatives are peanut (ground nut oil) and avocado oil.
Good luck. Sounds like a nightmare hope they can help you but I'd say you really need to be on your A game too which does take a lot of willpower and determination.
Yep. iirc There has been a case of death on second infection though.
I've not seen you in this thread before so I don't know if you are familiar with the condition, But If I ate what you've suggested during a flare I'd be back in hospital. All the fibre and the skins would be like sandpaper in my guts.
Were all different though so may work for others
Soldato
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It's the Gherkins and salad that would ruin me, Apples & Pears could eat fine peeled, Berries in a smoothie/milkshake, Olives I'm still unsure but I'm going to try some tonight. It's annoying as I love salad and gherkins
During one of my early flare ups. I was living on McDonalds. Anything else gave me bad cramps and kept me on the toilet all night.
Soldato
Another fine piece of life advice from Psycho Sonny. It's pretty well documented that the foods which make flare ups worse are those with fibre, skins and seeds...like berries, olives, apples, pears and salad.
Also, I'm struggling to find evidence that rapeseed, sunflower and soy oil is any more or less harmful to humans than coconut or peanut oil? Out of curiosity, I looked at what oil the most popular crisps brands in the UK use and walkers, seabrooks and kettle chips plus the big supermarket brands and none of them use oil high in trans fats.
Anyway...I hope your flare eases soon. As people have said, just try everything you can to get off the steroids asap. They work like a wonder drug but the long term effects of using them does not come to light until its way too late.
I am definitely in the category of 'foods makes very little difference to flares'. I spent years eradicating various foods from my diets to no avail. To be truthful, the healthiest I've ever been is when I was eating predominantly white, processed carbs. In fact, I would say things like white bread and pasta are pretty vital during a flare as we absorb so little so high density, low fibre carbs are good for keeping energy up.
Also, I'm struggling to find evidence that rapeseed, sunflower and soy oil is any more or less harmful to humans than coconut or peanut oil? Out of curiosity, I looked at what oil the most popular crisps brands in the UK use and walkers, seabrooks and kettle chips plus the big supermarket brands and none of them use oil high in trans fats.
Anyway...I hope your flare eases soon. As people have said, just try everything you can to get off the steroids asap. They work like a wonder drug but the long term effects of using them does not come to light until its way too late.
I am definitely in the category of 'foods makes very little difference to flares'. I spent years eradicating various foods from my diets to no avail. To be truthful, the healthiest I've ever been is when I was eating predominantly white, processed carbs. In fact, I would say things like white bread and pasta are pretty vital during a flare as we absorb so little so high density, low fibre carbs are good for keeping energy up.
Soldato
Ignore him. He’s one of those know-it-all know-nothing types. Harmless usually and a bit of fun to be had reading his posts. Semi decently knowledgeable in the home cinema arena though.
Caporegime
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That's because the food industry is heavily invested in profits.
Any oil which has been processed and refined using chemicals or high amounts of heat is alien to humans.
It takes 10-30 generations before the human body can adjust to a major dietary change.
Natural fats are therefore much better for you as humans have been eating them since day one.
Coconut oil is refined without the use of any chemicals or heat. Unlike vegetable oils and margarines which are promoted falsely as being healthy because they are low in saturated fat. Again saturated fat isn't bad for you it's good for you.
Google medium chain triglycerides if you want to do some research.
Short chain fatty acids and long chain ones are the ones you need to moderate.
If you want to pick out ones you will have heard of then it's hydrogenated fats and the likes. Again this is a new thing that's man made and not natural. Much like vegetable oils.
Butter
Ghee (clarified butter)
Coconut oil
The above three are natural and good for you. Coconut oil is so good you don't even need to use it in moderation.
Olive oil is good for drinking or salads (not frying).
Ground nut oil is what I use if I'm not doing Indian and I don't want coconut to overpower the flavour of the food like bacon, etc.
A lot of the studies on fats were wrong and on purpose. Scientists back in the day made a hypothesis on them gathered all the data and then dismissed all the data that never matched their hypothesis then published their study with a perfect trend of saturated fat causes heart disease.
If you really want to know what's good in terms of foods and fats then Google what diets people like Arnold Schwarzenegger had leading up to and during competitions. Obviously not to the same degree or amounts. Like jay cutler would have 300 egg whites a day. So you can assume having 3 egg whites for breakfast is healthy along with say some avocado another food which is tremendous for fighting against heart disease and is full of healthy fat even though it's saturated.
That's the problem with googling food facts so much BS has been made up falsely you will find contradictions everywhere and nutritionists training today at university are still being taught from textbooks containing studies which used only data that matched the hypothesis of the researchers and the other data is missing.
Soldato
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.