Crohns / ulcerative colitis sufferers

[dowie]

I think we are talking about the same thing she's fully qualified and well recommended

Some 'nutritionists' have qualifications too, the key thing is just whether she's a registered dietitian or not. I'm not just being pedantic here, it is probably worth checking as some of the dietary advice for Crohns can be completely contrary to normal healthy eating advice that a qualified 'nutritionist' type would give. For example if you've got strictures in the small bowel then you might be advised to eat white bread and avoid brown bread, cut down on fibre, don't eat salads, raw veg etc.. complete opposite of what a 'nutritionist' who doesn't work in a medical setting alongside gastro consultants etc.. would advise.

 

[DB_SamX]

Guys... those of you with confirmed UC or Crohns, can I ask what the 'determining' factor was in your actual diagnosis of this?

i.e. Was it from blood test results, or from a colonoscopy or what?

Reason I ask is I've been suffering for the last 2+ years from unknown lower abdominal disorder of some kind, ranging from pains, to severe constipation, tiredness, lethargy, depression etc - I've had a whole load of tests done, but nothing has come back with any actual diagnosis.

Which in itself can lead into a vicious circle of depression of not knowing what's wrong, and therefore having no treatment. December and January were a lot better, but the last couple of weeks seem to have gone backwards.

The dismissed piles as piles, loss of weight to malnutrition. A colonoscopy confirmed my Crohns. Took at least 9 months for me from start of symptoms to diagnosis.

 

[Aldav]

I know little about UC or Crohn's, but a friend suffered badly from UC about 40 years ago, to the point that a colostomy was scheduled. He was still in his late teens.

He went for an extensive allergy testing program, and went on a radically altered, and restricted, diet. I don't see him very often but, having adhered rigidly to that diet (I guess a colostomy is a potent motivator) he's still fit and healthy today, 40 years later.

I haven't read the whole thread, and have no idea how common an allergic response would be as a cause, or diet as a treatment but it worked for him. Just sayin'.

 

[dowie]

it worked for him. Just sayin'.

'it worked for him'/'it worked for me' it utter nonsense, you don't really know what actually 'worked' for him in this instance

 

[Maccapacca]

I've just got my report from the nutritionist and although I'm probably doing 75% of what she has advised it was well worth it.

We completed a zinc test, I await a 100 food intolerance test and other zinc and vit D tests, she has suggested a good quality omega 3 every day and increase the amount of fish I eat and look at 3 red meat free days a week, she also gave me a list of inflammatory and non inflammatory foods to eat with general wellness guidance.

I could probably redact some of it and make it available.

Biggest suggestions for me are

Complex daily multivitamin (liquid) with high levels of B12 & folic acid
Start on a daily probiotic (candi clear) then move to udo 8
Plenty of natural yogurts, bone broths and sauerkraut
More fish
More veg
Less red meat
Zero processed
Daily cider vinegar and Himalayan salt
Daily tumeric / ginger / coconut oil / pepper / honey / apple juice blend

It's probably a recipe for general well being but the next step for me might be surgery which scare the living hell out of me

 

[dowie]

I'd go see a proper dietitian tbh...

 

[Nazbit]

Hi,

First time I've seen this thread, I'll be following it keenly.

I've had crohns for 15 years now, I was diagnosed when I was 13 and there's very little that I haven't done or had done to me over the years.

I've had a colostomy, an ileostomy and about 7 other operations. I've had perforations, fistulas, fissures, edemas and more infections than I can count, probably 20+.

I've been critically ill twice and had around 4 years of remission in my 15 years with the disease, the longest continuous spell being around 13 months, the rest has been flaring.

I recently worked out that I've spent around 2 years of my life in hospital, 21 weeks is my longest single stay.

I can eat some food but I've had numerous NG feeds over the years and for the last 4 years I've been fed daily using TPN directly in to my bloodstream through a Hickman line.

I've tried all of the immunosuppressive drugs such as azathioprine, mecaptapurine, methotrexate. Steroids such as Budesonide and Prednisolone. Oral antibiotics ciprofloxicain, metronidazole and cyclosporin, IV antibiotics like Tazacin, Ertapenum and Teicoplainin. All of the various mesalazines. Tramadol, Codeine, Morphine and IV paracetamol for pain relief. Loperimide, Buscapan...all the usual stuff you guys will have had, but I've had little success.

More recently biological and anti TNF meds such as Infliximab, Adalimumab and Vedolizumab.

I don't know what the future holds, I've been house bound now for about 3 years, and I periodically become bed bound. I might get out once a month for the cinema, a football match or a meal.

I used to be very fit and healthy and active so it's very hard to come to terms with my limitations.

Despite everything I still manage to hold down a full time job and work from home as a programmer. Although my career has been held back and I'm not where I thought I would be, I'm very proud to hold down a professional job.

It's nice to see that there are people here who understand as most people just think oh yeah that's like IBS isn't it.....

Edit - apologies for any spelling, just got an S7 edge, can't type properly yet!!

 

[Aldav]

'it worked for him'/'it worked for me' it utter nonsense, you don't really know what actually 'worked' for him in this instance

Yes, I do. His experience of it was hospital-ordered batteries of allergy tests, including a residential period of a week initially, but then progressing over several months, refining what he could and couldn't eat. It was a last-ditch effort prior to a colostomy, which was a pretty radical option for such a young man. He ended up with a long list of things to avoid, including all dairy products, and most carb-type products, including bread, potato, pasta, etc. I worked pretty closely with him for several years, and he was periodically tested, by the hospital, with slight and calibrated reintroduction of certain food categories, and allergic tests, for years. They did not arrive at a final solution overnight. Every time he varied his diet to include test amounts of the "banned" items, symptoms would flare up. He even tested it out after 20 years clear of all symptoms, still under hospital supervision, and again, immediate signs of symptoms. Without those items, no symptoms.

It's not me saying it worked. It's his doctors. And his 40 years of experience.

What I'm NOT saying is what what worked for him would work for anybody else. It might for some, or it might not for any. But it absolutely did for him. And for anybody else suffering from a condition with the same gross symptoms, the root cause might be similar. Or might not.

 

[mattyg]

Well 7 weeks since starting Azathioprine with no side effects. Boom 4 days ago. 1 hour after taking them my head wants to explode and I really feel like throwing up.

So now its eat before bed and take them hoping I can sleep through the side effects now.

 

[dowie]

It's not me saying it worked. It's his doctors. And his 40 years of experience.

What I'm NOT saying is what what worked for him would work for anybody else. It might for some, or it might not for any. But it absolutely did for him. And for anybody else suffering from a condition with the same gross symptoms, the root cause might be similar. Or might not.

It is meaningless, changes to diet are one thing but the cause of crohns isn't completely established. To suggest it is possibly allergy related based on some approach taken 40 years ago is very dubious. If you were sharing a study/research then that would be one thing but sharing an anecdote about how someone you know did X is a bit dodgy.

 

[Destination]

I've just got my report from the nutritionist and although I'm probably doing 75% of what she has advised it was well worth it.

We completed a zinc test, [n]I await a 100 food intolerance test [/b]and other zinc and vit D tests, she has suggested a good quality omega 3 every day and increase the amount of fish I eat and look at 3 red meat free days a week, she also gave me a list of inflammatory and non inflammatory foods to eat with general wellness guidance.


It's probably a recipe for general well being but the next step for me might be surgery which scare the living hell out of me

what on earth is this test?
How was it performed?
What is the specificy of the 100 items it tests?

Sounds odd conceptually.

 

[dowie]

Sounds odd conceptually.

yup, AFAIK that sort of supposed food intolerance testing tends to be complete nonsense

this sort of recommendation seems like a red flag that he's dealing with 'woo'/pseudoscience too:

Daily cider vinegar and Himalayan salt

'nutritionists' tend to be a bit blase about requiring much in the way of evidence and unfortunately it sounds like maccapacca has gone to see one not too far off this character:

 

[Akmeeda]

It is meaningless, changes to diet are one thing but the cause of crohns isn't completely established. To suggest it is possibly allergy related based on some approach taken 40 years ago is very dubious. If you were sharing a study/research then that would be one thing but sharing an anecdote about how someone you know did X is a bit dodgy.

It seems like his friend has followed the specific carbohydrate diet. There is a book on this called 'Breaking the Vicious Cycle' by Elaine Gottschall. The author claims to have healed her daughter's Chrons disease following this diet. I've also read people online say that it has tremendously helped them with their UC/Chron's.

I don't suffer from UC/Chron's myself but I'd recommend people that do suffer from them to look into this. There is also an accompanying website to the book which, to be honest, has most of the important info from the book anyway so you don't even need to buy it. Just Google the authors name and it should take you there.

I make the probiotic yogurt that is suggested in the book/website. It's a much cheaper way than buying probiotics pills and the concentration of friendly bacteria is much higher in yogurt than in pills. I order the yogurt starter from the Rainforest.

 

[dowie]

There is very little evidence for most probiotics AFAIK. VSL 3 was one a gastro suggested as having some evidence of being beneficial, albeit only in a minority of people. Most are basically useless though. The other poster hasn't given any indication that his friend followed the specific diet you're claiming works just that his friend followed a a strict diet. Dietary advice can be helpful and really ought to be sought from a proper dietitian ideally via referral from a gastro consultant.

 

[Akmeeda]

Actually he did give indication that his friend follows the SCD diet when he said that his friend doesn't eat any carbohydrate type foods, including potatoes. Also, there is a lot of evidence that gut microbia play a role in our overall health and I can link some journals in the morning relating to this and use of probiotics, if anyone is interested.

 

[Aldav]

It is meaningless, changes to diet are one thing but the cause of crohns isn't completely established. To suggest it is possibly allergy related based on some approach taken 40 years ago is very dubious. If you were sharing a study/research then that would be one thing but sharing an anecdote about how someone you know did X is a bit dodgy.

Look, I don't know how clearer I've got to be. He was scheduled for a colostomy, because nothing else, and I mean nothing at all, had helped and his condition was getting very serious. But a last-ditch set of allergy tests suggested an approach. He followed the allergy recommendations, and his condition improved. More tests, more stuff to avoid, more improvement. The same trend continued on periodic tests for two decades, and sticking to his diet, he is still fine today.

Where did I suggest a cause of Crohns was established, completely or otherwise? Answer, I didn't. Nor did I suggest or recommend it as a treatment option, simply as a thought. Something that just MIGHT offer something to someone that, like my friend, suffered seriously.

Moreover, I didn't even say he had Crohns. I said I "know nothing" about Crohns or UC, but my friend had UC.

I carefully said "It worked for him". No more. And it did. For 40 years. His doctors concur.

Yet you, in your arrogance, dismiss it as "nonsense" and "meaningless", without you knowing ANYTHING about him or his case. Well, I'm sorry if me trying offer something that just might possibly open a thought to sufferers without having extensive double-blind clinical trial data to back it up in order to meet your exacting posting criteria. Next time I'll submit posts to you in advance for clearance before trying to help, because you are obviously more of an expert than his doctors.

So I'll cheer you up. I'm done with this thread. And with you.

 

[dowie]

I think you've just missed the point, I'm not being arrogant here this is a serious disease and making a claim like 'it worked for him' is dubious. Diet does appear to help but talk of allergy tests etc.. and claims that they 'worked' for some third party are dodgy that is all, if you can't understand why then perhaps it is better that you don't post anecdotes about a disease you don't even have based on some treatment that occurred decades ago which may not even be relevant. Medical threads are banned on here anyway I'd be especially careful about claims of what supposedly worked for others.

 

[R.O.S.S.I]

Interesting stuff about the Specific Carbohydrate Diet, not sure if my Mrs knows about it but I might buy her one of the books. Is "Breaking the Vicious Cycle" the only one worth getting or are there others?

We eat really healthily 95% of the time but if there are other steps we can take in our diet to help her Crohns then i'm all for it!

 

[dowie]

Get her to check with her consultant or a dietitian.

 

[Maccapacca]

what on earth is this test?
How was it performed?
What is the specificy of the 100 items it tests?

Sounds odd conceptually.

http://www.lorisian.com

Here you go

Genuinely interested in your thoughts.

Let's all not turn this thread into bickering and some debating competition or it'll just get locked down and we can revert to bickering about the EU

Wishing you all well