Weight gain + Liquid diet

Crohn's Disease Forum

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Cheshire, England, United Kingdom
Hello,

I would like to try a liquid diet. I am from the UK so not entirely sure what is available. I am very slim and weight easily drops off me so it is important I consume a minimum of 1500 calories. I don't want anything containing milk/lactose/sugar. I would also not like to spend too much - have read the enteral diet costs hundreds each week! I would like to try something not so expensive first to see if it works. I have no diarrhea my problem is horrific bowel spasms and feeling unwell associated with that.

Sorry if there are already a lot of threads like this but I am struggling to find things specifically in the UK.

Thank you.
 
Are you looking to do exclusive enteral nutrition or just to supplement your nutrition?

I had a look back over your posts to see if you had a diagnosis and read about your unusual history. Have you been to see your GI again? Because even though you were discharged before, I think these symptoms (and your history) warrant further follow up.

Is a liquid diet something you've discussed with your doctors? Would they give you a prescription? Because that would certainly help with the cost issue :) Formulas are expensive if you have to buy them but perhaps your doctor might agree that this is a good thing for you to try.

Since you want to be lactose free, Fortisip (by Nutricia) might be suitable but it does contain milk proteins and you really can't avoid sugar with these formulas. Despite the issues some of us have with sugar in our diet, these liquid diet formulas can still bring improvements so they may still be worth a go.

Elemental 028 Extra is milk and lactose free but being an elemental formula it is more expensive and less palatable - though I drank this for years anyway ;)

p.s. I'm in the UK and these are liquid diets I've been prescribed
 
In the UK you don't have to pay other than the prescription cost (unless you get free prescriptions), you can get what you need from your doctors.

From 24601's post I take it your undiagnosed? Doctors should prescribe something anyway if you're under weight. I was having Ensures and Fortsips long before I was diagnosed, though they were to supplement my diet, I wasn't on a liquid only diet. You'll probably need more than 1500 calories a day to stop you losing weight, and you'll probably need to have sugar. For a liquid only diet you should seek medical advice anyway really. Having a day or two where you just have a supplement and some soup or something because your symptoms are very bad is one thing, but sticking to liquids only for several days or more - or enteral nutrition - is another.

Have you ever seen a dietician? If not it may be worth asking your doctor for a referal. Why are you avoiding sugar?
 
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I did what 24601 did and had a look at some of your other posts. I'm sorry you're in such a confusing situation. When things go wrong with your body it can make it all the more unnerving when you don't know what's going on and the doctors you're dependent on don't know either. I know this very well because I have another illness that took years and years to diagnose.

Can I ask though, what are you hoping a liquid diet would achieve? It may help with the bowel spasms temporarily, but it's unlikely it will fix the underlying problem.

Do you have a good GP? A GP can prescribe you supplements like Ensure. So can a dietician, if you ask your GP to send you to one. They can help you with diet in other ways too if your weight is a problem or if you feel food makes your symptoms worse. Especially if you're lactose intolerant. You shouldn't need a clear diagnosis to get supplements. It may help you feel a bit more in control of things if you find you can ease your symptoms with diet, or maybe talk to a dietician who gives you sound information about your digestive system even though you don't know what's wrong with it. It may be that diet doesn't affect your symptoms, but it's definitely worth trying.
 
Hi all, thanks for your replies. Basically my GI won't see me - I have had to go back to my GP to be re-referred. My GP has asked me to do a fecal calprotectin stool test and get some blood tests done early next week. If these are abnormal he said he will refer me back to my GI. If they are not abnormal and I cannot get the bowel spasms under control with medication like mebeverine then he may refer me for a colonoscopy (I HATE THEM!!).

In the meantime I have convinced myself this has to be Crohn's and have been obsessively reading about the SCD diet, which has left me rather confused and like I can't really eat anything. I have ordered some books off the internet to give me recipe ideas. I don't think I need a total liquid diet but was kind of asking for the future (when I might?) and weight just drops off me. Right now I could definitely use some liquid supplements so thank you for the recommendations. I'm not sure why to cut sugar out I just thought that was the SCD advice? I definitely have a problem with milk though.
 
Hmmm. I'm not sure I'm entirely comfortable with the idea that only abnormal bloods and fecal calpro warrant a referral to a GI. There are other ways for GI issues to present and typically these would be better investigated and monitored by a specialist gastroenterologist.

But at least your GP is listening to an extent. I would say that even with your history I would try not to worry about it being Crohn's but at the same time do keep a diary of symptoms (without letting that take over your thoughts too much, ykwim) as this can be really helpful to refer back to and to show your doctors. Try to include the effect it has on your ability to do normal things (if it indeed does affect you like that) as it's helpful to be able to give examples of the impact these symptoms have on your life.

I've done SCD in the past as an attempt to control Crohn's (without success) but also to treat SIBO -- for that I get a lot of symptomatic relief by excluding most carbohydrates and that's how I've recently been using it.

It is relatively restrictive but not a bad or unhealthy (at least for most people) diet to follow. Response to diet is very individual though, and that tailoring of a diet specific to you can be very hard work - and it's important to be aware that you may not benefit from dietary changes and can end up on a path to excluding more and more foods which might mean you have nutritional deficiencies in your diet and lead to more weight loss. This was the case for me in the past as really my bowel was only happy when I consumed minimal amounts to no food but I spent ages tinkering with eliminations diets in the hope there were some magic foods I needed to exclude.

I'm not in any way dismissing the benefits that some people with bowel issues get from dietary treatments - you'll read about people who find going on SCD, Paleo, IBD-AID or any of the other diets to be transformative. But there are probably at least as many people who have no response and end up very confused about what they should or shouldn't be eating.

My take on it is that it seems to be much easier for some people who are clear dietary responders but for those of us who have an unclear or very difficult to interpret response (there are many confounding factors, and we simply can't control all of the factors that affect how our guts behave) we can end up lost in a maze of dietary restrictions.

The bottom line I think is that if you want to try a diet - and it's a healthy balanced diet - go for it. Give it a sensible timescale to work but not too long because if it's not working you need to try something different. If it works for you and makes you feel good and you're getting all the nutrition you need, then great but regardless I would still continue with monitoring by your doctors to make sure that any GI issues (like Crohn's disease) are actually being adequately controlled rather than just the symptoms being relieved.

That said, if you want to chat about SCD then feel free to ask me questions and I can give you a better idea of how I eat on that diet and the sub-forum is really helpful, plus a whole host of other SCD and Paleo (which is pretty similar) resources out there on the internet.

I would certainly talk to your GP about supplement drinks and a possible referral to a dietician. Also another diet that can be helpful for people with IBS (and apparently a lot of people with IBD also have IBS) is the low FODMAP diet - find info on that here and, well, lots of places but this article here is easy to read.
 
Well basically he said the fecal calpro is a very sensitive test that should flag up crohn's if I have it. If it comes back negative he is suspecting IBS so thinks I should be able to get that under control... If not then I guess I will be referred back to a GI to look for any other diagnoses but I can't see what else it could possibly be?! Pretty much has to be IBS or IBD from where I'm sitting. I just can't understand how they could unzip me, cut out part of my bowel, look at it under a microscope and not see Crohn's? If they can't diagnose me from doing that then what hope do I have :(

Thanks for your advice r.e the SCD diet. I can definitely tell there is a difference in my bowel habits depending on what food I eat. I also notice that my bowels are affected by stress (exams used to cause absolute havoc on me) and lack of sleep. My bowel spasms have subsided today but I am left with a pain on the right hand side where my appendix used to be. Maybe my scar tissue is sore. I am feeling a lot more well in myself as well I had a mild fever yesterday. I guess if I do have crohn's the good news is (for now) my only symptoms are bowel spasms so hopefully they can be managed by diet. I have no idea how to predict a bowel perforation though that really came out of the blue.

Unfortunately if I do have crohn's I'm not really allowed to take many drugs like Remicade because I am at risk of developing multiple sclerosis (I had optic neuritis 8 years ago). I am hoping I would be able to just have a course of steroids during flares (bowel spasm days).
 
My journey to diagnosis was pretty easy - once a doctor really took my symptoms seriously and didn't dismiss them as stress, glandular fever, lack of fibre, anxiety or any of those GP faves - as I had raised inflammatory markers in my blood and strictures seen on barium follow through and granulomas seen in biopsies following colonsocopy.

BUT many people on the forum don't present as straightforwardly. Some don't have raised fecal calpro even in a flare. Some don't have granulomas. But Crohn's is a tricky beast and in all likelihood an umbrella diagnosis for a collection of disorders loosely defined by these symptoms.

Basically if you don't have a high fecal calpro, you still might have Crohn's but you might have something else other than IBS - and since that should really be a diagnosis of exclusion, I think your GP should refer you back to the GI before attempting to treat that. Of course many GPs like to diagnose and treat IBS so it wouldn't be unusual but I don't think that makes it right!

If you do accept an IBS diagnosis for now and you notice that foods affect you (are you keeping a food diary?) then the low FODMAP diet might be a good place to start. Some studies say 80% of IBS patients experience some benefit from it.

I would caution against believing diet alone can treat your Crohn's and prevent a similar episode to what you experienced before. As you said these complications can come from nowhere and they can be life threatening so the stakes are pretty high in terms of preventing such complications.

I think there are some other drugs that you can try other than the biologics which you may need to avoid - for example immunosuppressants might be fine. And there are potentially some good new treatments coming through that work differently thinking long term.

For flares, since you're perhaps open to the dietary approach, EEN is similarly as effective and fast acting as steroids and used to good effect in Crohn's patients. I choose to use that for flares over steroids since for me it's more effective and avoids the side effects. Steroids of course have their place for many.

And EN is used by some for maintenance by taking 50% of their calories from formula or repeating 4 week courses of EEN every 3-4 months.

There's also a new IBD diet which has been shown (in a very small study) to induce remission in a similar proportion of patients to EEN when used either for all nutritional needs or with 50% formula. You can read the paper here and the limited foods for this 6 week induction period are here.

Here are some links to the IBD-AID diet I mentioned earlier
http://www.umassmed.edu/nutrition/ibd/ibd-aid-reference/
http://www.umassmed.edu/nutrition/ibd/ibd-aid/
diet chart with phases

As I said, I think it's important for you to get an appointment and follow up with a GI and talk to a dietician but it's good to know what's out there! :)
 
I just want to second everything 24601 said about diet, although I would be even more wary of experimenting with restrictive diets when you're already nervous about eating the wrong thing and you have trouble maintaining weight, because I tried all sorts of diets and they left me physically and emotionally worse than ever. It may be possible to eat healthily on the SCD, but it does have a big impact on how you think about food ("ileagal" foods, etc.) and on your ability to eat in terms of your social life, which is a lot to risk for a diet that's not been proven to work. But I know my view has been shaped by my own excessively negative experiences.

I have found a low fibre diet beneficial, and this is reommended by conventional doctors in the context of many medical conditions.

I also had a perforated bowel, and while the causes of that were very unusual, the surgeon who fixed it (and saved my life) said it had been triggered by my eating so much due to the amount I'd been made to eat while in hospital for refeeding due to my very very low weight - the amount I'd been forced to eat by doctors and dieticians. Too much food triggered the perforation.

So I know all too well how scary it can be to eat the "wrong" thing, but I also know the only way to deal with this fear is to not let it make you paranoid about what your eating, or at least that's the only way I've found. A lot of people will tell you food is bad when it's not, and even when diet does affect you, it's very rare for it to actually be dangerous, except for people with true allergies, or certain other conditions such as my own. I think it's the only way I can deal with my food phobias mentally while still eat a balanced diet and to eat enough to live.
 
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