Crohns / ulcerative colitis sufferers

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!
 
maccapacca said:
Genuinely interested in your thoughts.

Let's all not turn this thread into bickering
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It isn't bickering, being skeptical about this stuff is generally a good thing. What you've linked to has little evidence for it that is all, left unchecked in a thread about a serious condition isn't a good idea. You've been to see a nutritionist rather than a dietitian and you've had some dodgy advice/tests. I don't think that people promoting pseudoscience in a thread about a serous medical condition is at all helpful.
 
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R.O.S.S.I said:
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!
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It's the only book you need really as all the other books are based off this one. Has recommended recipes at the end and then the website will allow you look up if a certain food is permitted on the diet.

Here's the site: http://www.breakingtheviciouscycle.info/

It is a very restrictive diet but it is worth it if there is improvement in your partners health. If it doesn't work then it doesn't work but I definitely think it is a at least worth a go.

The author of the book also states that it was her daughter's doctor that had initially suggested following such a diet. So it's not something she just came up with one day. And she doesn't claim to be a 'nutritionist' or anything. Just states what she did to help her daughter and why she thinks it worked.
 
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FYI there are other ways of eliminating stuff from your diet, I know I keep banging on about it but getting proper advice when doing this sort of thing is better than simply taking a chance/believing in anecdotal advice. You can work with a dietitian to eliminated food.

The below is from a national charity with a health advisory board made up of qualified medical practitioners:

https://www.allergyuk.org/food-intolerance/identifying-your-food-intolerances

The Gold Standard, and only reliable way, to find out which foods are causing adverse reactions in an individual, is by keeping a very clear food and symptoms diary alongside a food exclusion diet. The diet needs to be followed strictly for purposes of diagnosis. This exclusion is then followed by a period of structured reintroduction of foods one by one, whilst keeping an accurate food and symptom diary all along. This is the most reliable way of ‘testing’ for any adverse reaction to a food. This is best done under the supervision of a registered dietitian. GPs can refer suitable candidates to a dietitian. This method of diagnosis is ideally most suitable for people who are prepared to follow the advice strictly and be prepared to keep a food and symptom diary.
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another note on allergy testing

http://www.allergy-clinic.co.uk/introduction-to-allergy/controversial-tests/

Another allergy test of questionable accuracy is IgG ELISA test. This test measures IgG and IgG4 antibodies to various foods which should not be confused with IgE antibody testing in conventional RAST and ImmunoCAP. Most people develop IgG antibodies to foods they eat and this is a normal non-specific response indicating exposure but not sensitisation. There is no convincing evidence to suggest that this test has any allergy diagnostic value [10, 11]. In fact, the IgG response may even be protective and prevent the development of IgE food allergy! IgG4 antibodies produced after high level cat allergen exposure in childhood confer cat allergy protection and not sensitisation [12].
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please seek proper medical advice before trying this sort of stuff
 
Having a bit of a mare at the moment. After the Flu and a chest infection I was put on Amoxacilin which I'm not sure if it has given me a dose of Colitis or something else. Getting blood mainly after my stool and had non urgent Diarreah for nearly 2 1/2 weeks also have some cramping and feelings of needing a big one but passing very little. Not sure if it's a reaction to the Antibiotics or U/C flaring tbh. Both blood and stool samples have come back all ok which is weird. I have also been quite depressed which is something I have never had before and is bloody horrid....

I have been in touch with my U/C team and have an appointment to see the Consultant in May and have been booked for a camera job within 6 weeks but not sure I can wait that long if this does not improve....

I have been so tempted to just go to A&E when feeling down but I doubt I'm an emergency case.....

I just want to know what is going on I'm not very good at waiting....

Apologies for the rant. :-)
 
Antibiotics usually have an adverse effect on your GI tract. Mainly because it causes havoc on the gut bacteria. This could be a potential reason for the change in bowel movements.

However, definitely do consider going to your doctor or A&E.
 
As you're with the NHS is there a nurse help line you can call? I'm being treated privately at the mo but I'm going to move over to the NHS soon as it is probably much better in the long run for chronic conditions.

I'd go speak to your GP in the first instance rather than A&E, as mentioned above antibiotics can mess with your guts anyway. Most GPs can offer a same day appointment if you phone early in the morning alternatively you can try 111 and get your nearest walk in clinic where you won't need an appointment (often open 8am to 8pm 7 days a week) and will probably have a shorter waiting time than A&E.

Basically if you do need to see a doctor then you can usually see one within a few hours without going to A&E (where you'd have to wait for a few hours anyway). If you still need to be seen in A&E then the GP at the walk in clinic can make that call.
 
I went to the walk in centre but as they did not have my med notes they were little help. They suggest seeing my GP asap as they can arrange follow up appointments and have my med notes so any meds can be subscribed.

Will go to the GP next week. I think a lot of the stress and depression I have been feeling are not helping with my symptoms. The Flu and chest infections really are a nasty illness and I hope I never experience again tbh....
 
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Specialist seems to think I'm doing okay looking after myself. He wants more weight off in the 9 months.
 
MOOGLEYS said:
Not sure if it's a reaction to the Antibiotics or U/C flaring tbh.
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I had a course of antibiotics last summer after getting a chemical burn at work & they set me off for a while, but it wasn't a full on UC flare, more of a grumble that cleared up once ide finished the course, damn shame you can't get seen quicker.
 
VoG said:
I had a course of antibiotics last summer after getting a chemical burn at work & they set me off for a while, but it wasn't a full on UC flare, more of a grumble that cleared up once ide finished the course, damn shame you can't get seen quicker.
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It's a pain as I was fine before the Flu/Chest infection and Antibiotics. Tbh I'm not sure if my Colitis is flaring or I'm having a reaction to the Amoxocillin. I have spoken to my IBD team and had bloods and stool samples done which showed fine but it could still be the Antibiotics. I was told to re-start Azathiroprene as a precaution and up my asacol with another 2 tabs a day.

I think I need to give it a bit more time and let the antibiotics clear out and everything settle down but as I have been feeling down it makes me fear the worst.
 
MOOGLEYS said:
I went to the walk in centre but as they did not have my med notes they were little help. They suggest seeing my GP asap as they can arrange follow up appointments and have my med notes so any meds can be subscribed.

Will go to the GP next week. I think a lot of the stress and depression I have been feeling are not helping with my symptoms. The Flu and chest infections really are a nasty illness and I hope I never experience again tbh....
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that is a shame, you'd hope that with something like the NHS they could all access the same patient database, notes etc.. though the government and good IT don't seem to go together :(
 
I got diagnosed with UC way back in the late 90's. However I've been very lucky (touch wood), and only ever had a few flare-up's. I think I get off very lightly compared to others with it. Mine's kept at bay with Asacol tablets.

Horrible to think how bad it can be though, and a cure would be a god-send. Or should that be a science-send.
 
well there is, just there is much less of it :)

still it isn't like there is a single drugs company with a monopoly on all drugs, fortunately we're in a competitive market so if a cure is feasible there is plenty of incentive to make it happen - potentially something like the MAP vaccine that is due to be trialed shortly (fingers crossed)
 
maccapacca said:
Don't hold your breath. There's no profit in cures.
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The antibiotics industry would like a word with you. The vaccine industry might want a quiet chat as well.

maccapacca said:
Why are hope and research into cures almost always charitable whilst billions are pumped into pharmaceuticals to treat symptoms?
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Pharmaceuticals provide cures as well as treating symptoms. They do this with the help of research institutions.

You should ask yourself why there's so much money in the placebo industry, which doesn't treat or cure anything.

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As of this morning I’ve been put on Pentasa. I'm somewhat annoyed and happy that progress is being made.

I’ve been seeing a GI locally who has run every test known to man for IBS / IBD and this has been happening over the past year at first they wasn't sure if it was IBS or IBD. One the first consultation with him I was discussing my symptoms and all the drugs I have been trailed on which have had no improvement. A long story short he said there is nothing more he could do for me last month and that is indeed IBS.

However, I’ve had this now for around 5/6 years now but it’s got to the point I struggle with work some days and early morning starts are out the question.

As I had lost faith in this consultant and felt like I was getting "fobbed off", I’ve arranged a second opinion and a referral from a friend. However, the new consultant a Professor (I’ve been advise he is one of the best in the country for GI) and not a doctor has review all my notes and couldn't believe the choices this consultant had made, as I had been given nothing for ulcers in the small bowel. So he explained it all to me and said I am symptomatic of Crohn’s and wants to see how I react to the treatment.

So today is day 1. :D
 
I'm using Pentasa suppositorys it's not the most pleasant thing to do but they seem to be helping with my U/C. I also take Asacol and Azathiroprene.

Mornings are worse for me as well at the moment.

Have you had a Colonoscopy ? it's pretty much the only way to know for certain what is going on.
 
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MOOGLEYS said:
I'm using Pentasa suppositorys it's not the most pleasant thing to do but they seem to be helping. I also take Asacol and Azathiroprene.
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I have them in tablet form at the moment and ive been warned about the side effect for the first week. I know they wasn't cheap but if they help they are more then worth it.
 
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