Ulcerative colitis

irish_janey · 05-07-2013 1:00am #1

CURED

I suffered UC since I was 15. It got to the stage where doctors were talking about removing parts if my digestive system. I was on a large quantity of drugs and constantly on steroids. I discovered how a product called carageena is used in lots of dairy and protein products as a stabiliser. It's naturally sourced and basically is used to maintain the life span of your foods, alternatively it is used effectively in inducing inflammation. Doctors are so confident that this product can induce inflammation that it is implemented in lab experiments for medical research (ironically). I've done my background research on everything I eat in large quantities on a regular basis and cut everything out that contains this stabiliser. It's now been 3 months since I took my last steroid course and I haven't had any signs of a flare up. It was as simple as that; no magic pills, no gimmicks. As it turns out I ended up cutting most processed food out of my diet altogether and following a paleo lifestyle. I couldn't recommend it enough.

I hope this helps someone else. After 7 years I'm so happy to not have to worry anymore about everyday stuff that the UC would get in the way of.

keelanj69 · 05-07-2013 1:07am

Hey. Have UC for near five years. Couldn't stop bleeding at all for four and a half years. Strung out on steroids (drip and oral) for months at a time to no avail. Started Humira injections recently and they seem to work ok.

Had to leave two colleges over incredibly bad flare ups. So hopefully I can finally start moving on and get back to study.

Glad to hear you are feeling ok.

irish_janey · 05-07-2013 1:14am

Hey, that's good you've found a treatment that works. Have you heard about carageena before? I only heard about it 4 months ago and since removing it from my diet I am back to myself for the first time in years. I have been looking to see if anyone else has been lucky enough to have the same results as me and I'm surprised none of the big sites aren't building awareness about it. It is hugely acknowledged elsewhere apart from the uk and Ireland. Did you ever attempt the diet route of finding some relief?

keelanj69 · 05-07-2013 1:16am

irish_janey wrote: »

Hey, that's good you've found a treatment that works. Have you heard about carageena before? I only heard about it 4 months ago and since removing it from my diet I am back to myself for the first time in years. I have been looking to see if anyone else has been lucky enough to have the same results as me and I'm surprised none of the big sites aren't building awareness about it. It is hugely acknowledged elsewhere apart from the uk and Ireland. Did you ever attempt the diet route of finding some relief?

Waiting a long time to see a Dietician. I wouldn't have a great diet. Girlfriend knows all about that craic as she studies nutrition.

Were you ever asked to go on injections?

irish_janey · 05-07-2013 1:34am

keelanj69 wrote: »

Waiting a long time to see a Dietician. I wouldn't have a great diet. Girlfriend knows all about that craic as she studies nutrition.

Were you ever asked to go on injections?

Yeah, I was adamant that if I was to go start that malarkey I'd not be able to turn it around. Your girlfriend will probably know this too but your digestive and immune system are innate in the way they have not evolved for such a long time that all of the modernised and altered food we are putting into ourselves is just screwing it all up. Basically UC sufferers have an over reactive immune system, you probably don't have many common colds or viruses when you have a flare up because of it... This is your bodies reaction to all the foreign material your putting into it, it's fighting it all off to get it out of your system. On top of that, your body renews itself regularly: skin weekly, organs every few months and bones annually so the food you eat ends up literally being you hence why your body is attacking itself. Kind of why it takes so long to get over a flare up.

If I could recommend anything it would be to look at your diet. It's not necessarily the food your putting into your body but what is being added to things like milk and yogurts that is screwing with you.

Sorry if I've bombarded you at all. I wouldn't say to drop the medicine side of things but definitely give it a helping hand in working by eating "cleaner" foods. The next step after injections is major surgery and though people cope with that its something to avoid at all costs!

Kevster · 05-07-2013 9:28pm

I was diagnosed around 8 years ago but had been suffering from UC symptoms long before that. I never thought anything of my problems, though, so never thought to go to a doctor until my mam 'forced' me.

I was on steroids and anti-inflammatories for around 6 years after that, but I have been medication free since then with only the rare flare-up.

What I find that works is a combination between living a stress-free life, mderatly exercising, and knowing to avoid the foods that just give you pain. It's taken years to find the right balance but I now have it.

This might be of interest, too: I did breast cancer research in my PhD and for a while as a postdoctoral researcher. Above all else, avoid the repeated cycles of inflammation-repair that comes with UC. Chronic inflammation is a quick route to cancer.

Give your health the priority it deserves...

Look after yourselves,
Kevin

Pmarron1 · 01-01-2014 9:04am

Hi,
I've been diagnosed with uc two months ago and I'm waiting to see the specialist. I've been doing a lot of research online and. It seems to be the same pattern for everyone ie flare ups meds different meds more flare ups then finally surgery. I'm on prednoslone now but I'm terrified of the side effects. My job is quiet physical and I can't afford not to be in good health for it. What worked for you sounds great and I was wondering could you help me on this?? I wish there were support groups that I could meet ppl with the condition, I feel alone. I live in the midlands.
Thanks
P

irish_janey · 01-01-2014 9:25am

Hi there!

Happy new year

first thing i would say to you is stop worrying. Out of this whole thing it's the biggest thing I've learnt. The second biggest thing is that I found is my flare ups were a result of me having a hectic, physically demanding and unhealthy lifestyle and were extremely severe when I didn't stop and listen to my body.

One of the first things I would suggest is look at your diet and get food smart. Like you say, there is little or no support in Ireland and I had to learn a lot!! Break down your diet to raw basics- meat and veg and nuts if you can. No fruit, bread, rice, etc or processed drinks. If you like I can send you my diet structure that I trialled for two weeks. It's a great way of a) detoxing your body and b) creating a starting block to add foods to your diet that your body can handle.

Got to run off but il add more soon and throw some more questions my way!

Pmarron1 wrote: »

Hi,
I've been diagnosed with uc two months ago and I'm waiting to see the specialist. I've been doing a lot of research online and. It seems to be the same pattern for everyone ie flare ups meds different meds more flare ups then finally surgery. I'm on prednoslone now but I'm terrified of the side effects. My job is quiet physical and I can't afford not to be in good health for it. What worked for you sounds great and I was wondering could you help me on this?? I wish there were support groups that I could meet ppl with the condition, I feel alone. I live in the midlands.
Thanks
P

iano.p · 01-01-2014 9:35am

Hi irish janey sorry for butting in could i see your diet. I am having a bad flair up and nothing seems to work for me. What you siad would be worth looking into

irish_janey wrote: »

Hi there!

Happy new year first thing i would say to you is stop worrying. Out of this whole thing it's the biggest thing I've learnt. The second biggest thing is that I found is my flare ups were a result of me having a hectic, physically demanding and unhealthy lifestyle and were extremely severe when I didn't stop and listen to my body.

One of the first things I would suggest is look at your diet and get food smart. Like you say, there is little or no support in Ireland and I had to learn a lot!! Break down your diet to raw basics- meat and veg and nuts if you can. No fruit, bread, rice, etc or processed drinks. If you like I can send you my diet structure that I trialled for two weeks. It's a great way of a) detoxing your body and b) creating a starting block to add foods to your diet that your body can handle.

Got to run off but il add more soon and throw some more questions my way!

irish_janey · 01-01-2014 12:29pm

Hi there! Im not allowed to email for some reason....But anyways!!! Im not sayin a controlled diet works, the way I see it is if you are having a bad flare up and taking meds for it but three times a day you eat things that your body struggles to manage it can hinder or make the job harder for your meds and also put more strain on your body and who knows... you may find something that does agitate your UC so its worth a go! Also...I am by far no expert!

What meds are you on at the mo? Diet wise at the moment as you are having a flare up I would say just keep things really bland and simple and an easy guideline is to just stay away from processed foods so anything that isnt in its rawest form.... no dairy or grains of any sort. These are extremely processed food products and have all sorts of additives, preservatives and stabilisers in them.

I dont know what your diet is like at the moment but wait until you are not going through a flare up and maybe give this a go: what I did was broke my diet down into small food groups and then after a 2 week detox I gradually added to it and that way I found out what worked for me. Natural foods can be bad for you as wel as unnatural foods and that is worth taking into consideration. At times I was a bit confused! Its taken me over a year to do it and to anyone Ive ever spoken to about trying it themselves I always say to not be lazy, never take anyone elses word for gospel and go and research yourself.

This time of year is particularly hard to keep to a strict eating regime and at the moment I am on anti inflammatories- mezavont XL and these are the best I have used yet and fingers crossed no steroids! Obviously this isnt a long term solution so I'l be back on my normal eating regime as soon as the festivities are over

A little bit of research worth looking into is paleo lifestyle. Hope this helps

irish_janey · 01-01-2014 12:31pm

Heres what I used....

Try and make any sauces from scratch using any paleo websites as they use mainly unprocessed recipes.

Make sure to drink 2-3 litres of water each day

Day 1
Breakfast- 3 egg omelette with spinach, peppers and greens Handful of Pecans.
Lunch- prawn and avocado salad- greens and tomatoes.
Dinner- Steak/Salmon and lots of greens and handful Almonds.

Day2

Breakfast - 3 Boiled Eggs Salad with watercress, lettuce, cucumber and olives.
Lunch - Chicken stir fry done with spinach, onion, garlic, peppers handful of walnuts.
Dinner- Grilled Steak with peppers and onions and lots of broccoli.

Day 3
Breakfast - Pine nut and spinach omelette 3 eggs Side salad.
Lunch - Chicken salad- , spinach, peppers, olives, Pistachio nuts.
Dinner- Chilli Con Carne with broccoli and green beans.

Day 4
Breakfast - Salmon stir fried with green beans and almonds.
Lunch - Grilled turkey Breast with a pine nut and avocado salad...
Dinner - Prawn Thai red curry with side Salad lots of greens.

Day 5
Breakfast - Home made turkey burgers, stir fried veggies
Lunch - Grilled homemade steak mince Burgers with a pecan nut and avocado salad... Dinner - Prawn stir fried with side Salad lots of greens and almonds

Day 6
Breakfast – 4 eggs scrambled with lots of spinach, watercress and cashew nuts.
Lunch - Salmon Basil Burgers with green beans and Avocado.
Dinner – Greek Chicken Breast kebabs with pecan nuts, lots of lettuce, tomatoes and mushrooms

Day 7
Breakfast - Poached Eggs (2-3) on Roasted Veggies
Lunch – Grilled Salmon on a bed of spinach with mandarin orange Slices and hand full of Almonds
Dinner – Lean Mince Stuffed Bell Peppers with Broccoli and Avocado.

Add different food groups gradually, I was very sensitive and aware of what upsetted my stomach usually within a day so that was usually long enough to test out different food groups though some people recommend a week...

I chanced snacks like dark chocolate and most paleo websites have great snack recommendations! My biggest weakness was cheese, tea and coffee. Portion wise- go nuts! There is no restriction on the amount you can eat so stick to the amount you would usually give yourself. I found writing down my own weaknesses is handy and then think to yourself its 2 weeks of your life that you will have to go without them and its worth it! I used coconut oil to cook with as it is less processed than any other cooking oils available and it has a lower carcinogenic range so it doesn’t alter the value and goodness of your foods! If you drink tea or coffee try swap it for green teas or drink them black.

chinwag · 01-01-2014 12:50pm

[QUOTE I wish there were support groups that I could meet ppl with the condition, I feel alone. I live in the midlands.[/QUOTE]

http://www.irishhealth.com/psg/colitis.html

mgn · 01-01-2014 12:51pm

Hi.Pmarron 1,There is a great site on facebook called Crohns and Ulcerative Colitis Ireland,there are over a 1000 people on it with either Crohns or colitis from all over the country,great site.

keelanj69 · 09-01-2014 6:33pm

Does anybody know if Humira is good after 48 hours out of the fridge? Pharmacist says maybe but a google search says no. Thanks.

suds1984 · 09-01-2014 7:45pm

keelanj69 wrote: »

Does anybody know if Humira is good after 48 hours out of the fridge? Pharmacist says maybe but a google search says no. Thanks.

You're best bet is to get one of those insulin pen cool bags eg: http://www.flemingmedical.ie/epages/FlemingMedical.mobile/en_IE/?ObjectID=11794&ViewAction=ViewProduct or I'm some other variations which are available in pharmacies. Keeps the pen cool for up to 48hrs or so they claim.

lorebringer · 10-01-2014 1:54pm

keelanj69 wrote: »

Does anybody know if Humira is good after 48 hours out of the fridge? Pharmacist says maybe but a google search says no. Thanks.

Phone up your GP or phone the hospital pharmacist - they should be able to tell you.
(my bets are on no though)

Shandog · 13-01-2014 8:29am

I have Colitis about 8 years. Nearly two years since a flare up, im living in the sticks in China at the moment and basically eat Mcdonalds twice a day so in essence just getting empty calories. I have been on Imuran about four years as i was allergic to most other medicines. Imuran scares me anyone else on it or concerned about it

peteb2 · 16-01-2014 3:14pm

any one know where its cheaper to get Mezavant in the UK? Am on 2400 mg of it so need 60 X 1200 tabs. Getting sick of maxing out the Drug Payment Scheme and paying €140!

JamboMac · 02-05-2014 9:11pm

peteb2 wrote: »

any one know where its cheaper to get Mezavant in the UK? Am on 2400 mg of it so need 60 X 1200 tabs. Getting sick of maxing out the Drug Payment Scheme and paying €140!

Have you applied for a medical card don't know why this is not treated like diabetes and the drugs should be supplied free.
Had the symptoms about 2 or 3 years but ignored them and went through camera checks and was diagnosed about November. Got lucky that asacolon works for me and I got a medical card which brought my bill from 144 to 2.50 a month.

peteb2 · 02-05-2014 9:20pm

JamboMac wrote: »

Have you applied for a medical card don't know why this is not treated like diabetes and the drugs should be supplied free.
Had the symptoms about 2 or 3 years but ignored them and went through camera checks and was diagnosed about November. Got lucky that asacolon works for me and I got a medical card which brought my bill from 144 to 2.50 a month.

I earn too much

JamboMac · 02-05-2014 9:28pm

peteb2 wrote: »

I earn too much

If you haven't tried, I'd give it a shot throw in all the relevant bills you can, I'm a mature student so had bus tickets and college fees and so, although there is a set amount there is also potential allowances under certain circumstances I'm sure when they see people having to put out 1800 a year so they can be useful to society. As I said if you haven't tried give it a shot the worst they can say is your not eligible.

Jamies15 · 22-07-2014 12:49am

Does anybody find they start to get symptoms of a flair up when:
1. They drink quite a lot of alcohol in one go
2. They drink any coffee (I've literally just started drinking it about a month ago and only have about 3 cups a week, I find it helps me study)
3. Exercise (3 or 4 times a week)

I think over the last couple of days I've started to experience the symptoms I always get at the very start of a flair up although as I'm sure everyone knows it's so hard to tell.

Thanks!

peteb2 · 22-07-2014 12:37pm

1) Yes
2) Caffiene is always going to irritate your system. I don't why you started at this stage in life. May as well just give it up now before its too hard
3) No. In fact I find the exercise quite helpful in keeping symptoms away. But everyone is different.

super_furry · 22-07-2014 12:53pm

Coffee is what I believe started me off. Never drank it up until a couple of years ago but within months of starting to drink it, I developed coilitis. Pain in the hole - literally.

shalalala · 25-07-2014 12:41pm

peteb2 wrote: »

any one know where its cheaper to get Mezavant in the UK? Am on 2400 mg of it so need 60 X 1200 tabs. Getting sick of maxing out the Drug Payment Scheme and paying €140!

meet your twin! Broke all the time and no medical card coming. I asked in England and because they have meds on the government it took me a while to get an answer but it ends up the same in England if not more expensive! I cannot remember the exact figure. The best deal seems to be what we get currently which is awful!

ppshay · 30-07-2014 4:43pm

Anyone on the specific carbohydrate diet and making the yoghurt? Do you use the Yogourmet Freeze-Dried Yogurt Starter and where do you get it? Delivery from the US is a killer.

Edit: ...and the almond flour.

0lddog · 30-07-2014 10:15pm

ppshay wrote: »

Anyone on the specific carbohydrate diet and making the yoghurt? Do you use the Yogourmet Freeze-Dried Yogurt Starter and where do you get it? Delivery from the US is a killer.

Edit: ...and the almond flour.

I believe that Total yougurt is still suitable as a starter. ( I've seen it in Dunnes recently )

As for almond flour, ( BTW not the same as gound almond ) if you find it please post where !

JamboMac · 30-07-2014 10:43pm

0lddog wrote: »

I believe that Total yougurt is still suitable as a starter. ( I've seen it in Dunnes recently )

As for almond flour, ( BTW not the same as gound almond ) if you find it please post where !

Fallon and Byrne might have the flour or there is a health food store just across on George's street can't remember the name but you'll see those hippie rocks in the window.

ppshay · 30-07-2014 11:29pm

I used to buy from Lucy's Kitchen Shop but haven't gotten anything from there in a while. The flour is $29.13 delivery for the 5lb bag and the starter is $26.74 delivery for a 12-pack.

Then there is customs to consider these days.

2nd Row Donkey · 31-07-2014 7:13am

Shandog wrote: »

I have Colitis about 8 years. Nearly two years since a flare up, im living in the sticks in China at the moment and basically eat Mcdonalds twice a day so in essence just getting empty calories. I have been on Imuran about four years as i was allergic to most other medicines. Imuran scares me anyone else on it or concerned about it

I had to take imuran after my most recent flare up (along with the usual steroids). It did the trick nicely. What's wrong with Imuran. ..

2nd Row Donkey · 31-07-2014 7:27am

Eh, ok. So I just Googled it myself. That's some list of side effects.

Kinda bizarre that they say to watch out for nausea, abdominal pain, Diarrhoea, change in stool colour etc. like hello, that's the symptoms before taking the drug!!

I definitely had the night sweats. Must have changed my duvet cover every 2nd night for a month.

The other one that stuck out was the reference to this:

This medication may increase your risk of getting a rare but very serious (sometimes fatal) brain infection (progressive multifocal leukoencephalopathy-PML). Get medical help right away if any of these rare but very serious side effects occur: clumsiness, loss of coordination, weakness, sudden change in your thinking (such as confusion, difficulty concentrating), difficulty moving your muscles, problems with speech, seizure, vision changes.

The middle bit ... "sudden changes to your thinking such as confusion, difficulty concentrating"

This one concerns me. I clearly remember struggling in work and at home. Trying to focus, concentrate etc ... Thankfully I was finished the Imuran after about 2 weeks.

Ulcerative colitis

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