Crohns / ulcerative colitis sufferers

[DanTheMan]

Good luck with it all moogleys, There must be so many mixed emotions going on whilst you wait.

I'm sure, like me, you've read many stories from people who have had their colon removed due to UC. Almost every story I read is a positive one once the initial adjustment period is over.

 

[DB_SamX]

My nutritionist is guiding and easing me slowly into it, so I am not fully paleo yet, and she has been giving me her own guidance docs, but I thought this was a useful visual summary:
https://i.pinimg.com/originals/0a/9e/d4/0a9ed46e094e4d2f17f1180dd263d882.jpg
Interestingly, as I didn't know this, half of the grains are gluten free, yet I still should avoid most of them. Only three I've been told are passable in small quantities. I've made it my resolution to learn more about nutrition this year, as opoosed to just take advice for granted; I want to know why.

Imo, it is worth a shot. I don't have much to lose other than a couple of hundreds of pounds of fees and on supplements - the diet itself seems very healthy, otherwise it's mostly grain based carbs and sugar I am truly missing. It will make eating out more difficult. But if it proves to work, it may bring a lot of worthwhile respite and prevent flare-ups.

A month on a pseudo-Paleo diet, and my CRP (inflammation) level are still high according to my blood test, however what I can say is that I feel less bloated and constipated by having virtually elimitated grains, dairy, refined sugar, and processed foods. I do still have cheat meals e.g. eating out, or when there just isn't an alternative, but the day to day feeling is better - I feel lighted. I have admittedly lost some weight through inherently eating fewer carbs but I can work on this, and tbh I've lost muscle mass by not exercising this last month due to a change in work pattern. Fatigue is still and issue though. Another good aspect is that I am learning lots of healthy recipes and cooking more from scratch.

Supplement-wise, I started taking 4 which should have had had digestive benefits, but hard to say if they've worked. Admittedly I suck at taking them regularly (change in work pattern again), so I have only myself to blame. I had another review with my nutritionist last week, so need to implement a few changes to the above to target reducing my CRP level.

 

[DB_SamX]

Well I’m now in the Surgical assessment unit at Shrewsbury and I’m having my colon removed on Thursday. The surgeons have said it’s a case of it needs to come out now pretty much as it’s so inflamed it’s causing me to be quite a bit sicker than I thought. Drugs are not an option as nothing is likely to work fast enough or at all. The risk of perforation or TMC is too high to wait any longer.

I’m nervous but also happy I’m getting something done that will hopefully help. Means I will have a bag for life...lol but hopefully a life better than now with a bag....

Now to not sleep for 2 days and await the Anxiety that will show up too....

All good fun this U/C crap....

All the best, bud.

 

[dirtychinchilla]

Best of luck MOOGLEYS,

Somewhat Crohn's related...got a really painful hemorrhoid. It's so so so so annoying.

 

[robfosters]

Well I’m now in the Surgical assessment unit at Shrewsbury and I’m having my colon removed on Thursday. The surgeons have said it’s a case of it needs to come out now pretty much as it’s so inflamed it’s causing me to be quite a bit sicker than I thought. Drugs are not an option as nothing is likely to work fast enough or at all. The risk of perforation or TMC is too high to wait any longer.

I’m nervous but also happy I’m getting something done that will hopefully help. Means I will have a bag for life...lol but hopefully a life better than now with a bag....

Now to not sleep for 2 days and await the Anxiety that will show up too....

All good fun this U/C crap....

All the best Moogs. Hope everything goes well.

 

[robfosters]

Best of luck MOOGLEYS,

Somewhat Crohn's related...got a really painful hemorrhoid. It's so so so so annoying.

Do you have to do that gritted teeth and slow movement thing every time you sit down.

 

[dirtychinchilla]

Do you have to do that gritted teeth and slow movement thing every time you sit down.

Absolutely. Made worse by the fact that I went to the gym on Monday for the first time in two weeks and my legs are killing me.

 

[MOOGLEYS]

Thanks guys been fitted for my Stoma today it’s far more comfortable than I was expecting tbh I have had more uncomfortable plasters. I’m due surgery tomorrow as long as all goes ok. Be nice to get a few hours rest without going to the toilet constantly....

I have nervous but excited apprehension..

 

[Hodders]

Moogleys, I'm sure you've got a whole heap on your mind.

All I can say is that a uni mate of mine went through exactly the same procedure as you. 6 months on he said he just wished he'd had it done sooner.

He said it basically gave him his life back.

All the very best for tomorrow.

 

[VoG]

All the very very best Moogs.

 

[dowie]

Good luck for tomorrow @MOOGLEYS

 

[Holdon Tight]

Hope it goes well.

 

[MOOGLEYS]

Thanks guys just waiting now. I’m down as an emergency but they grade emergency levels so need to wait and see how many are graded higher than me to if it happens today.

I hate the waiting.....

 

[WantoN]

Thanks guys just waiting now. I’m down as an emergency but they grade emergency levels so need to wait and see how many are graded higher than me to if it happens today.

I hate the waiting.....

Good luck mate. The good news is that once you've had this done, you will be completely cured of Ulcerative Colitis. Wishing you all the best in your recovery mate.

Do you have the option for an ileal pouch later down the line?

 

[MOOGLEYS]

My operation has been delayed until tomorrow afternoon. Not a big delay so I’m no too bothered. Been fasting all day so really thirsty and hungry......

 

[dowie]

Supplement-wise, I started taking 4 which should have had had digestive benefits, but hard to say if they've worked. Admittedly I suck at taking them regularly (change in work pattern again), so I have only myself to blame. I had another review with my nutritionist last week, so need to implement a few changes to the above to target reducing my CRP level.

Have you asked your gastro consultants about this? I'm not sure that a fad diet is necessarily going to reduce your CRP level or that you can conclude that your CRP level reducing (if you're also receiving treatment for Crohn's) can be attributed to it. I'd try a dietitian if you want diet advice as stuff like this whole 30 diet you have in your previous link seems like pseudoscience promoted by quacks.

 

[WantoN]

Have you asked your gastro consultants about this? I'm not sure that a fad diet is necessarily going to reduce your CRP level or that you can conclude that your CRP level reducing (if you're also receiving treatment for Crohn's) can be attributed to it. I'd try a dietitian if you want diet advice as stuff like this whole 30 diet you have in your previous link seems like pseudoscience promoted by quacks.

In my experience Dieticians and Nutritionists are pretty useless, except for very basic advice.

I value your insight, but I think it's a little insulting to call it a 'fad diet'. IMO, and from reading the stories of many people, manipulating what you eat can have a profound effect for some IBD sufferers. I was on steroids for years; (from Prednisolone to Budesonide and finally Beclomethasone Diproprionate), and their effects had become awful.Even with the best drugs available, including Vedolizumab, I still had terrible symptoms and was awaiting my second appointment prior to surgery to remove my colon.

Determined to do anything I could to avoid it, I spent some time researching before beginning an exclusion diet. Once I had a baseline, I started introducing specific anti-inflammatory foods and supplements, trialing each one/group individually. I felt some relief almost immediately, and as time went on, and I'd formed a diet that worked for me, I was not only able to get off steroids (one of the best things to happen to me), but I had subdued my symptoms to practically non-existent; an incredible feeling I hadn't experienced for many years. Not just my CRP, but my GGT, ALT and AST levels were all down significantly, and my amylase was getting under control too.

I checked some supplements with the IBD team before introduction, but that was it. Since then my life has been so, so much better. If I waver on my diet however, my symptoms start to re-appear.

I'm not saying that everyone needs to go out and follow a diet, or that I have an answer for anyone but myself. But we have the right as sufferers to try what we can to improve our illness, and just because someone has made an informed decision to try a diet that may help them, it doesn't make it a 'fad' .

I was told for years that "diet won't improve your symptoms, but some foods will trigger them. Avoid skins and seeds, and eat simple, processed carbohydrates", and "You could try antidiarrheal medicines to thicken your stools. Oh, and you could try buy VSL#3, if it works you might be able to get a prescription." In all my years with IBD that is pretty much the sum total of the dietary advice I received from all the different hospitals and professionals; not exactly inspiring. As it turns out, diet is the single biggest contributor to not only my IBD symptoms, but other illnesses as well.

 

[MOOGLEYS]

The disease is so different for everyone it’s impossible to say what works for one would work for another. There is so much trial and error involved in finding something that works and is suitable to each person.

At the end of the day if what someone is doing is reducing inflammation and improving their life then that’s nothing but a good thing. We just need to remember that on someone else this might not work or could cause things to significantly worsen.

Half the battle of this illness is finding what works best for each individual.

Until you get to where I am where it’s all just broken and surgery is the only answer....lol

 

[dowie]

In my experience Dieticians and Nutritionists are pretty useless, except for very basic advice.

I value your insight, but I think it's a little insulting to call it a 'fad diet'.

They're completely different beasts its like comparing a doctor with a homeopath or chiropractor or something, anyone can call themselves a nutritionist and they don't need qualifications and some are prone to promoting pseudoscience. The diets in the jpg are fad diets, that isn't an insult is is fact - they are current fads. AFAIK there isn't a solid evidence base for undertaking a whole 30 diet etc...

for example:

https://www.smartnutrition.ca/smarten-up/whole-30-dietitians-review/

The aim of the diet is to “put an end to unhealthy cravings and habits, restore a healthy metabolism, heal your digestive tract, and balance your immune system.” They promise that the diet will lower chronic systemic inflammation.

However, there’s absolutely no clinical evidence to back up these claims.

Yes, a lot of foods on the “avoid list” are associated with increased inflammation, such as sugar, highly processed foods, and alcohol. Yet, many of the foods on the list have actually been shown to improve gut health and immunity…

• whole grains are associated with decreased inflammation
• yogurt, kefir, and some cheeses contain probiotics which may support gut health and decrease inflammation
• legumes contain fibres and short chain carbohydrates that promote gut health and decrease inflammation

The authors seem to have arbitrarily chosen foods as good or bad, without looking to science. This isn’t really surprising, since they have absolutely NO background in formal nutrition education.

One of the main focuses of the program is to eliminate highly processed foods. The creators even go so far as to say that you shouldn’t try to re-create your favourite treats such as pizza or cookies with ingredients on the approved list.

You might think that, as a Dietitian, nutrition expert, and promoter of healthy eating, I would be totally on board with a diet that seeks to eliminate highly processed foods. I’m not.

Yes, I do want people to rely less on processed foods and prepare more healthy, wholesome, real food meals. Dietitians have (roughly) the same end goal in mind as the founders of the Whole 30. However, I don’t believe the process by which the Whole 30 founders try to accomplish this goal is healthy, or likely to succeed [...]

A dietitian is a qualified health professional, they give evidence based diet advice, this is a very important difference, they work alongside consultants in hospitals. It certainly isn't useless for qualified professionals to provide dietary advice to people in various medical or surgery related circumstances where they might need a specific diet.

If anything it is rather insulting to both lump the two together and claim that they're both useless. Dietitians generally aren't useless nutritionists may or may not be.

The disease is so different for everyone it’s impossible to say what works for one would work for another. There is so much trial and error involved in finding something that works and is suitable to each person.

At the end of the day if what someone is doing is reducing inflammation and improving their life then that’s nothing but a good thing. We just need to remember that on someone else this might not work or could cause things to significantly worsen.

Half the battle of this illness is finding what works best for each individual.

Until you get to where I am where it’s all just broken and surgery is the only answer....lol

Indeed, this is why anecdotes about individual cases or are pretty dubious at best. It isn't like a controlled trial has taken place, someone has tried a bunch of stuff, some of that bunch of stuff may or may not have worked, they might still be undergoing some treatment too (not to mention the disease can flares up and can go into remission regardless). No one is going to know for sure which of the multitude of things they've experimented with actually had any effect, of course trying this sort of stuff often coincides with generally trying to eat healthily, avoid junk etc.. etc.. so I'd take any claims of "XYZ worked for me" with a pinch of salt.

 

[DB_SamX]

Have you asked your gastro consultants about this? I'm not sure that a fad diet is necessarily going to reduce your CRP level or that you can conclude that your CRP level reducing (if you're also receiving treatment for Crohn's) can be attributed to it. I'd try a dietitian if you want diet advice as stuff like this whole 30 diet you have in your previous link seems like pseudoscience promoted by quacks.

Yes, I ran them past my consultant first, and she didn't have any adverse comments, but did rightly say, I should aim to get all my nutrients from diet primarily. However, given Crohns suppressed nutrient abseoption in teh first place, I understand the need for supplements. I've only seen a NHS dietician once in the 15 years I have had Crohns, and all that I was told was to avoid oily, greasy, and spicy food. I think that is very poor.

My nutritionist recommended those having seen my blood test results over the last 6 months, and targeted those nutrients where the levels were not as great. They are not permament; they are merely a boost to get them back to normal levels, as well as try to improve digestive properties of my gut.

I don't think those diets are fads. I am admit they are not conclusive, but there are studies showing they CAN work for some people; even if they don't offer a therapeutic intervention, they are efficient at improving overall health, and how can that be a bad thing? There is one in Gastrointestinal Nursing journal volume 17, number 1 (Feb 19). My aim is to try a diet that helps me reduce my gut inflammation; if it works, great. If not, I won't have any regrets. As I said, my CRP levels may not have dropped, but I feel better already, and that counts for a lot on a day to day basis.