Struggling with my doctors

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ozzyahmed

Joined
Jul 25, 2013
Messages
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Hi there I am new to this forum.
I could actually do with some advice as how to deal with my doctors.

I was diagnosed last year in March with severe crohns disease in the large intestine.
I was immediately started prednisolone which got me to remission. And also started on asacol. Once the steroids tapered down I flared up straight away and was admitted into hospital again. So my doctor started me on azathioprine.
Once I got out of hospital I decided to start SCD, which I had varying degrees of success with. But overall the impression that I got was it did seem to help me but wasnt doing enough to keep my symptoms under control. as i used to have abdominal pain in the morning and my stools still had blood and mucus etc in them, and my bowel movements were 3-4 a day which wasnt perfect.other problems that I encountered on the SCD was that i cudnt introduce many foods from the phases as I seemd to react to everything especially fruits.
So I flared up in december again last year. So my doctor gave me more steroids. And started me on humira, which seemed to make a difference at first but must have stopped working as i flared up a few months later again at the end of june. So they again put me on more steroid and are now telling me to seriously consider surgery.

I have done loads of reading up on the dietary treatment side of things and have seen that people have acheived remission on the elemental diet and especiall the Lofflex diet.
I asked my doctor about this but she is very reluctant for me to try this route and the also claim that il the dietary treatment is only for people with small bowel crohns disease. I have been trying to get her to give me a refferal to cambridge hospital where they do the lofflex diet, but she seems to quite adamant that it wont work, or its not worth trying, and that my crohns has become too "far along" for my crohns.

have u guys got any advice/suggestions etc or know about any other treatments?
Any help much be much appreciated....
 
Hi, I have been on the same meds as u, in the end I had surgery last april, and I'm no better today I 've also been getting sharp pains in my side, funno if that is related, what I'm considering doing is changeing my doctor cos I'm getting told allsorts, the longer they dont know what to do, the more the crohns is affecting me, wouldyou not consider changeing doctors?
 
I've never found diet to be very helpful. I don't think there's any way of knowing whether diet (and which diet) will help you without trying. But the problem is that if diet doesn't help you, or doesn't help you enough, your disease can progress a lot whilst you're waiting for the diet to work, and can lead to complications and possibly the need for surgery, etc.

Although they have more side effects, medications are more likely to help than diet. I would guess that your doctor is worried that your disease is too severe to risk allowing it to worsen if you try different diets and they don't help, whereas someone with a more mild case of Crohn's can take more of a risk in trying out diets. You can of course try most diets whilst taking medication as well, although then you wouldn't know if the diet was helping you.

I think if I were you I would follow your doctor's advice on this - but then diets were not successful for me so of course that influences my view on this. There may also be issues about getting funding to refer you to specialist hospitals or to other doctors.
 
I believe the Cambridge group has a way to test to see if the diet is working and keeping inflammation down for Crohn's patients. Dr. Hunter discusses that in his book.

You might contact the Cambridge hospital and let them know your interest in trying their dietary ideas and see if they have suggestions. Possibly they can offer guidance with your physician in working with you.

Their web sight and contact information can be seen at:

http://crohns.org.uk/
 
Thanks for replying guys.

Ian = I would like to change my doctor. My consultant Is good but not very open to trying other things that aren't conventional treatment or something to do with the diet. I would like to be referred to Cambridge hospital but seems like it may be a bit of a battle trying to get there.
How do u feel after the surgery? Was it worth it? Are u wearing a bag at the moment?

Unxmas= I am on steroids at the moment and I was thinking about trying the diet when the steroids reduce a bit so it might buy me a bit of time?

Beach= thanks I have been thinking about buying his book, I think I will probably get it and have a read
 
Yea I agree with the others here
#1. having a second opinion or getting a different doctor that at least lets you try other things is important. Although if you consider from your doctors opinion if they do not feel that this other diet plan will help you if you go off your meds and get sicker it only gets harder to find a remission later. They do have your best in mind, although it may be misguided.
#2. to be fair I have only heard of people being "cured" of Crohn's with diet when it isn't severe or aggressive, if as soon as you came off of steroids your CD flaired I'd say its aggressive. Not saying it won't be helpful, it may be EXTREMELY helpful but unfortunately after years of trying traditional and nontraditional treatments I'm wary of the thought there is a quick fix. One day though there will be a cure :)

Best of luck!
 
Looking on Dr. Hunter's Cambridge sight I found he has a blog about his work. He mentions that often times he asks patients to remain on their drug therapy while beginning dietary ideas.

A couple of his posts:

"Medication and Dietary Therapy"

http://crohns.org.uk/professor_hunter/blog/medication-and-dietary-therapy

Many patients with Crohn’s disease ask what they should do about the medication they are taking when they start dietary therapy. Should they stop it straight away? Or should they reduce the dose?

The best advice is to continue on the current drug therapy until symptoms have settled on diet. Most people switch from medication to diet because their pills are not controlling the disease and they therefore still have unpleasant symptoms. Indeed, if a patient is completely well on his medication, there is usually no need to change it. At present no instant cure for Crohn’s is available. The aim must be to relieve symptoms completely so that the patient can lead a normal life, and to keep them controlled until the disease burns itself out, which may take several years. If tablets are doing the trick, why change a winning team?

Most people therefore will start diet because they are still suffering symptoms despite their medication. Under these circumstances it is usually easy to spot the improvement which diet produces. When the symptoms are nicely controlled, then is the time to start reducing the dose in the expectation that it will be possible to stop the tablets completely after a few weeks....
Click to expand...

...When patients are taking two or more different medications for their Crohn’s, it is best for them to seek advice from their clinicians about which to withdraw first, but corticosteroids are usually the first to go because of their wide side-effect profile.

In a very few patients with difficult Crohn’s disease it is necessary to use both diet and medication together to keep the disease under complete control. This is not a reason for anxiety – the aim is to relieve symptoms until the condition has burned itself out, and using diet and drugs together may provide a very satisfactory solution.
Click to expand...

&

"Diet and Crohn’s disease"

http://crohns.org.uk/professor_hunter/blog/diet-and-crohns-disease
 
Hi Ozzy,
I have been seen at cambridge(Addenbrookes). I was referred there by my local gastro who is great, for a second opinion as to the way forward with treatment.
I saw a Dr Steve Middleton, he recommended humira (was on aza already)but also suggested elemental diet (elemental 028). I had an nasojejunal tube in already, and had elemental exclusively for 3 months with gradual introduction of other foods.
He feels it is an extra treatment in adults rather than an only. It worked OK for me, it helped me absorb better and stop losing weight. It tastes foul in my opinion, some drink it orally but i had to have it past my stomach and duodenum so hence the nasojejunal tube.

I have upper GI and small bowel disease though, no colonic involvement.
He has a long waiting list under the NHS. I paid for one consultation with him privately and then my local gastro implemented his suggestions using my local IBD dietician.
He is a really nice guy and very thorough, my local gastro consultant uses him a lot for a second opinion.
 
I have been seeing Professor Hunter regularly since diagnosis four years ago. I can only speak from personal experience but I have followed his regime, using elemental 028s followed by lofflex diet, followed by reintroduction of foods and now know what my food intolerances are. As long as I refrain from eating those I remain perfectly well. Should I eat any of my intolerances I get full blown Crohns and can have diarrhoea 15 - 20 times a day.

I get regular faecal calprotectin tests which show my levels are always within the normal range.

I would urge you to read his books and do as much research as you can. Surely your GP can't refuse to refer you to your hospital of choice?
 
Thanks for replying guys:)

@littlemish - do you feel like it helped improve your symptoms greatly or only held a bit?


@mattie - did you have any problems at all when moving from elemental diet to the lofflex?
And where is your crohns if you don't mind me asking? Large intestine or small intestine?

Thanks for replying u guys are great lol...
 
It improved them a moderate amount. Less diarrhoea, vomiting, weight loss but didn't resolve them. I went onto the lofflex diet after about 3 months sole elemental I think, though it took a long time to be able to introduce foods.
My dietician was invaluable, you need a good dietician who specialises in IBD.

I have only really had dramatic improvement with weekly humira but the elemental diet helped with this improvement. When I have a worsening of symptoms and am unable to eat etc, they always now consider the addition of elemental feeding via ng/nj.
 
I was on elemental for almost three weeks which took me into remission after which I started on Lofflex. But I immediately regressed and had to reintroduce foods using the elimination method. With Lofflex you are given a range of foods to start with. These are foods which have proven to be the least problematical for Crohns patients according to Addenbrooke's dieticians. I reacted to some food in the Lofflex diet so had to do an elimination diet instead.

With Lofflex you start with a range of foods which you eat for two weeks, then, if you don't react to anything you start to reintroduce additional foods, one new food every four days.

With an elimination diet you stay on elementals but gradually reduce the amount you have as you increase the amount of solid foods. With an elimination diet, you test foods for one day, instead of four days on Lofflex. To test you take a large serving of the food twice a day and watch for reactions. If you react you stay on safe foods until the reaction subsides before starting to reintroduce foods again. Each food is tested for one day apart from wheat, corn and dairy which are tested for seven.The whole process took me about 3-4 months.

My Crohns is in my bottom. I have no Crohns in either the large or small intestine. Crohns in the bottom is quite difficult to treat with diet because all of the digestion has already taken place before it reaches that point! However, I can only speak from experience and tell you that as long as I don't eat my food intolerances I remain perfectly well. If I eat wheat, corn, dairy, soy and a couple of other things I get full blown Crohns with all the symptoms we all recognise and love!
 
@littlemish - its good to hear the the humira worked for you. And the diet seems to be coming along for you as well. Which elemental drink did your dietician recommend?

@mattie. - Which elemental drink did you use if you mind my asking?. I've spoken to a dietician and she's given me some ensure plus to try. But from what I read they aren't the best ones to start off with...
 
I used elemental 028 which are individual drinks in tetra packs. I have read that some people don't like the taste, but have to confess I do! I have no problem drinking them at all.

I always have some in the house, even now four years later, just in case I get a reaction to anything and can nip it in the bud.
 
Elemental 028 extra. I also have some in the house along with my pump. I am hoping if I don't send the pump back I won't need it again. Last 2 times I sent it back I needed it again fairly soon! My cunning plan seems to be working so far!
 
The best advice is to continue on the current drug therapy until symptoms have settled on diet. Most people switch from medication to diet because their pills are not controlling the disease and they therefore still have unpleasant symptoms. Indeed, if a patient is completely well on his medication, there is usually no need to change it. At present no instant cure for Crohn’s is available. The aim must be to relieve symptoms completely so that the patient can lead a normal life, and to keep them controlled until the disease burns itself out, which may take several years. If tablets are doing the trick, why change a winning team?

Most people therefore will start diet because they are still suffering symptoms despite their medication. Under these circumstances it is usually easy to spot the improvement which diet produces. When the symptoms are nicely controlled, then is the time to start reducing the dose in the expectation that it will be possible to stop the tablets completely after a few weeks....
Click to expand...

Do you know if it is as easy to distinguish the effects of diet from the effects of medication as he makes out? If you're on medication and terribly sick, and then you change your diet and quickly feel a lot better, then later taper medications and continue feeling better, I guess it would be obvious but my own experiences and a lot of those I've read suggests it's often not this straightforward, particularly as it's usually claimed that diet can take quite a few months to start working, so it wouldn't be clear if improvement seen later couldn't be from medications starting to kick in or if it was a spontaneous improvement.
 
UnXmas said:
Do you know if it is as easy to distinguish the effects of diet from the effects of medication as he makes out? If you're on medication and terribly sick, and then you change your diet and quickly feel a lot better, then later taper medications and continue feeling better, I guess it would be obvious but my own experiences and a lot of those I've read suggests it's often not this straightforward, particularly as it's usually claimed that diet can take quite a few months to start working, so it wouldn't be clear if improvement seen later couldn't be from medications starting to kick in or if it was a spontaneous improvement.
Click to expand...

I'm not quite sure it matters Unxmas. The objective is to relieve pain and suffering with the tools available. Most who go the dietary route later into treatment, are doing so due to medications not working, or working as well as hoped for controlling IBD symptoms. As a result dietary ideas are looked at, as with Dr. Hunter's program, in hopes of improving the situation.

Some are able to use dietary means to begin with for controlling their Crohns condition. As I've read that can have advantages, as with bone density.

"IBD, Osteoporosis and Osteopaenia"

http://crohns.org.uk/professor_hunter/blog/ibd-osteoporosis-and-osteopaenia

snippet:

...In 2001 Dr Keith Dear, now a consultant gastroenterologist in Chesterfield, but then undertaking research in our department, published a paper (Dear KLE, Compston JE, Hunter JO) Clinical Nutrition (2001) 20, 541-546) which showed that bone densities in patients with Crohn’s disease who had never received corticosteroids, because they were treated by diet or surgery, were no different from people who had never suffered from Crohn’s disease at all. Those treated by corticosteroids, by contrast, had significant reduction in their bone density, even when their age and sex were allowed for. This was, however, a relatively small study, involving only 95 patients in all.

I was very pleased therefore to read an important paper from Canada, published in the March 2013 edition of Clinical Gastroenterology and Hepatology, which confirmed Keith Dear’s findings. Every patient in Manitoba who has a bone density test is recorded on a central data base, and the researchers had as many as 45,714 records to consider. 1230 of these also had IBD – either ulcerative colitis and Crohn’s disease. The results were not strictly comparable to ours, as diet is apparently not amongst the therapeutic possibilities available to patients with Crohn’s disease in Manitoba. Nevertheless, although patients with Crohn’s disease were nearly 50% more likely to have osteoporosis than controls, careful statistical analysis of this massive quantity of data showed that IBD itself had very little effect on bone density. Crohn’s posed a greater risk than ulcerative colitis, but it was a very small effect and the risk of osteoporosis associated with IBD was related to factors well known to increase the risk – including age, sex and, of course, corticosteroids. (Targownik LE, Bernstein CN Nugent Z and Leslie WD Clinical Gastroenterology and Hepatology, 2013,11:278-285)

The moral of the story – if your Crohn’s can be controlled by diet, then so much the better!
Click to expand...
 
In my case the improvement with diet was immediate. It most certainly didn't take a few months to kick in.

When I eliminated foods and then reintroduced them, the effect of any intolerance was known within 24 hours. The longest it took was 2 days and if I remember correctly this was a reaction to corn. I would have to check my diary to be absolutely sure that it was corn, but whatever, 2 days later was the longest it took for me.

That's why corn and wheat are tested for 7 days because the reaction to them can be delayed.
 
I should add that I never used meds to control my Crohns. I was fortunate to discover Professor Hunter very quickly after diagnosis. My consultant at the time had started me on a 400mg dose of asacol, one tablet three times a day, which I continue to take.
 
Mattie said:
In my case the improvement with diet was immediate. It most certainly didn't take a few months to kick in.

When I eliminated foods and then reintroduced them, the effect of any intolerance was known within 24 hours. The longest it took was 2 days and if I remember correctly this was a reaction to corn. I would have to check my diary to be absolutely sure that it was corn, but whatever, 2 days later was the longest it took for me.

That's why corn and wheat are tested for 7 days because the reaction to them can be delayed.
Click to expand...

I just read that almost all corn is GMO(Genetically modified) in nature nowadays. The seeds are as well. So, that could be why it is so toxic to us.I
got this info from a good source "Natural News" newsletter.
 
Beach - I guess I thought identifying the cause of any improvements matters as you wouldn't want to be taking medications and risking side effects unnecessarily. But also if you were feeling better when you were both on a diet and taking medication, you'd want to be as sure as you can be that if you stopped the medication (which is the main goal?) then your disease wasn't going to worsen again if it turned out that it wasn't the diet that was helping.
 
The main goal UnXmas is to get the disease under control, relieving pain and suffering, with the tools available. In the case of Crohn's disease, diet can be used as medication. Monitoring ones IBD condition remains the same for whatever tool(s) are used to achieve remission.
 
I thought that was the point of the article snippet you posted above though - that if people with Crohn's can avoid taking corticosteroids then they aren't any more at risk of bone density loss than those without Crohn's - i.e. that it's the medications that cause osteoporosis, and so if diet alone can be used to control Crohn's without medication, it reduces Crohn's patients' risk of osteoporosis. So you'd want to be sure diet was working in order to aim to avoid medication.
 

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