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Elimination diet, what to look out for?

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Posted 8/10/2016 7:58 AM (GMT 0)
The extra amount of food didn't even cross mind, I think I've just become obsessed with getting back to 1 solid bm in the morning so any kind of change to that I'm seeing as a backward step. Probably not the best way to look at it considering how much progress I've made since 2 weeks ago.

Your story sounds horrific, the thought of surgery scares the life out of me. It is very interesting to read about though and certainly highlights the fact that nothing is guaranteed in this life. I really do hope that you can find true remission one day and put this nightmare behind you.
Posted 8/11/2016 12:36 AM (GMT 0)
I've been following an elimination diet in the book The Inside Tract by Dr. Gerry Mullin. He has specific instructions for adding food back in...you eat 2-3 servings if you don't react to the first serving, then wait 2 days. If you have no change in symptoms then you can consider that food safe. It's pretty methodical and I've been keeping a food diary to track everything.

I find sugar (as in table sugar used in baked goods, drinks, etc) to be a big culprit so I usually see improvement when I just cut that out. Low residue (low fiber) usually helps slow my system down and gives me some relief.

There are lots of diets geared toward IBD that can give you some ideas of where to start...SCD, FODMAP and many more. As everyone else as said it's so individual.

Good luck. Hope you can find some relief soon.
Posted 8/11/2016 1:17 AM (GMT 0)

UC555 said...
The extra amount of food didn't even cross mind, I think I've just become obsessed with getting back to 1 solid bm in the morning so any kind of change to that I'm seeing as a backward step. Probably not the best way to look at it considering how much progress I've made since 2 weeks ago.

Your story sounds horrific, the thought of surgery scares the life out of me. It is very interesting to read about though and certainly highlights the fact that nothing is guaranteed in this life. I really do hope that you can find true remission one day and put this nightmare behind you.

As most people here will confirm, it usually takes a while to get back to normal (weeks or months, occasionally even years). Basically, if you have IBD you need the patience of a saint, 'cos everything feels like it takes forever.

Thank you. I hope you will never need surgery, although if it does come to that, the chances are it will be okay. Most people get a good result and are happy that they had it done. But that said, surgery isn't all that common anyway: most people with UC never have it.
Posted 8/11/2016 12:36 PM (GMT 0)
Sparkleplenty- a true elimination diet is definitely something I want to do but as somebody above mentioned maybe now isn't the time for me. With me being on the prednisone it's very unlikely that I'm going to get a true reflection on how certain foods agrees with me. I've decided that I'm still going to try and eat a low fibre healthy diet until I heal but forget about the elimination for now unless I notice that something is really causing me problems.

Nicecupoftea- Why is it that surgery is so uncommon with uc? I've read so many stories about people who's lives have been ruined and can't help but wonder why they never took the risk and went for the surgery. Do you think that most of the people online are the worst case scenarios and most of the people who are still living a normalish life we don't really hear about?
Posted 8/11/2016 2:01 PM (GMT 0)
UC555 - Well, surgery isn't that uncommon, but it seems to be becoming more so. And a good thing too, in my opinion. Surgery has genuinely given many people's lives back, but it's also a blunt instrument which can create as many problems as it solves for other people.

www.crohnsupport.com/new-survey-patients-colectomy-surgery-uc/
www.news-medical.net/news/20121213/Colectomy-fails-to-ease-ulcerative-colitis-sick-leave-burden.aspx

Also, your last sentence has hit the nail on the head too. Only about 20% of people with UC have a severe form of it. The rest have mild or moderate disease and many of those people will be in remission most of the time. I have a brother like that: he has a much milder case of Crohn's than I do and he's been in remission for nearly all of the 18 or so years he's had it.

I don't mean to scare anybody away from surgery who really needs it: if you reach that point, then even a mediocre outcome will be better than whatever you were living with before. But there's a reason why surgery is a last-line treatment and not a first-line one.

Post Edited (NiceCupOfTea) : 8/11/2016 8:04:55 AM (GMT-6)

Posted 8/11/2016 2:31 PM (GMT 0)
I would definitely be able to work more now than I could before having surgery. Before, I was lucky if I could get to work. Now, I am able to do whatever i want. I don't know why those articles are so opposite of my experience, but I do feel like those types of articles build unnecessary fear. Of course someone's going to be out the year following a colectomy, the surgery itself requires a lot of time off. I always took sick days, even when I was healthy - people often take a sick day when they have errands or appointments. it's not always related to their actual health. It's a weird study because they mention 20 sick days, and here in the US, that's simply more than most companies will tolerate from an employee. So to me, it just doesn't make sense with my reality.

That other article sounds like it's written by a pharmaceutical company that makes biologics. Biologics are great if they work for you. I was a non-responder, as are about 20-30% of the population. I personally do not wish I had learned about more options. I had enough of living my life within 10 feet of a toilet. I didn't even bother to try xeljanz, and I feel like it was for the best. I don't want to spend another year waiting and hoping, looking for the next thing, going to doctors, waiting for the next flare up. Spending 1000s on drugs and doctors appointments. That's exactly the opposite of the life i am living with my j-pouch.
Posted 8/11/2016 2:47 PM (GMT 0)
If everybody had your experience, nssg, surgery would probably be a first-line treatment for UC and not the last. For the NHS it would even be cheaper: a couple of surgeries at the outset, job done - no more expensive tests, expensive drugs, expensive hospital appointments, expensive hospital stays.

The NICE guidelines are generally highly respected. They are in the business of trying to save the NHS money, not causing it to spend even more money. They don't recommend expensive treatments lightly or without good evidence.

Should add those guidelines are actually out of date now and biologics have been approved for maintenance treatment of UC in the UK. Quite right too.

Post Edited (NiceCupOfTea) : 8/11/2016 8:58:02 AM (GMT-6)

Posted 8/11/2016 5:43 PM (GMT 0)
@NiceCupOfTea, just out of curiosity, how much advertising do you see for biologic drugs? I'm guessing not a lot or none? Jeez, here in the states we are hit over the head with TV commercials and magazine ads for Humira, Entyvio, Stelara, Otezla, Xeljaaz, cosentyx....it's pretty ridiculous. By the way they advertise, every other person has some bowel or auto immune disease. Maybe these drugs could be cheaper if big pharma didn't spend billions afvertising them but the bottom line is their bottom line, profits. And just a noted difference, the USA has the highest cost for healthcare, not surprising.

And ha, as I type this, a friggen commercial for Humira is on my TV. @Notsosicklygirl, it must be nice to watch those commercials without a thought. I'm scared of surgery but I'm coming to the way of thinking, if things get bad, how much time should I waste going from drug to drug, keeping myself in remission? I'm not getting any younger, so this is a concern for me.

Oh ffs, edited to ad that another commercial for a drug called Movantix was just on. It's a drug for constipation you get from being on opiates. 😱
Posted 8/11/2016 5:53 PM (GMT 0)

Verucasalt2.0 said...
@NiceCupOfTea, just out of curiosity, how much advertising do you see for biologic drugs? I'm guessing not a lot or none? Jeez, here in the states we are hit over the head with TV commercials and magazine ads for Humira, Entyvio, Stelara, Otezla, Xeljaaz, cosentyx....it's pretty ridiculous. By the way they advertise, every other person has some bowel or auto immune disease. Maybe these drugs could be cheaper if big pharma didn't spend billions afvertising them but the bottom line is their bottom line, profits. And just a noted difference, the USA has the highest cost for healthcare, not surprising.

Wowww! None at all here in UK as far as I'm aware. That strikes me as kinda weird since Humira seems such a niche drug. I hadn't heard of any of these drugs till I ended up on biologics recently.

UC555 said...
Well, this morning has been bitter sweet. Went to the loo twice in the first hour of being up when I've only been going once a day for the last 4 days, seems a bit of a backwards step. On the other hand their was no blood the first time which had me excited, the 2nd time their was a little blood but not as much as previous days. Not sure what to think, are sausage rolls and chocolate muffins the answer or the problem? Was expecting a lot worse this morning so I can't complain too much.

It's natural to look at every single hour of every single day, but people on here have recommended to me to think on a more weekly basis and allow for some natural ups and downs, I have found this advice to be helpful and stress-reducing. However, if it's diet you're looking at ... hmm. That seems like such a tricky thing to work out especially if you are flaring right now and depending on what meds you're on. I really don't know where I'd start with that, although I do notice that if I really strip back my diet I seem to be able to get symptoms down (though I don't suppose it's having an effect on the inflammation). Good on you for really looking at diet though, I don't have the patience or drive atm, especially as I was eating what I pleased in remission. My faith is in the drugs right now and I'm hoping they will really help me out.
Posted 8/11/2016 6:09 PM (GMT 0)

Verucasalt2.0 said...
@NiceCupOfTea, just out of curiosity, how much advertising do you see for biologic drugs? I'm guessing not a lot or none? Jeez, here in the states we are hit over the head with TV commercials and magazine ads for Humira, Entyvio, Stelara, Otezla, Xeljaaz, cosentyx....it's pretty ridiculous. By the way they advertise, every other person has some bowel or auto immune disease. Maybe these drugs could be cheaper if big pharma didn't spend billions afvertising them but the bottom line is their bottom line, profits. And just a noted difference, the USA has the highest cost for healthcare, not surprising.

Zero, thankfully. The UK healthcare system has its faults, but it's never subjected to that kind of commercial pressure.
Posted 8/11/2016 6:13 PM (GMT 0)

Verucasalt2.0 said...
@NiceCupOfTea, just out of curiosity, how much advertising do you see for biologic drugs? I'm guessing not a lot or none? Jeez, here in the states we are hit over the head with TV commercials and magazine ads for Humira, Entyvio, Stelara, Otezla, Xeljaaz, cosentyx....it's pretty ridiculous. By the way they advertise, every other person has some bowel or auto immune disease. Maybe these drugs could be cheaper if big pharma didn't spend billions afvertising them but the bottom line is their bottom line, profits. And just a noted difference, the USA has the highest cost for healthcare, not surprising.

And ha, as I type this, a friggen commercial for Humira is on my TV. @Notsosicklygirl, it must be nice to watch those commercials without a thought. I'm scared of surgery but I'm coming to the way of thinking, if things get bad, how much time should I waste going from drug to drug, keeping myself in remission? I'm not getting any younger, so this is a concern for me.

Oh ffs, edited to ad that another commercial for a drug called Movantix was just on. It's a drug for constipation you get from being on opiates. 😱

We are bombarded with those commercials in CA too. I guess they are likely nationwide.

I wouldn't worry too much about surgery. It's unlikely you will need it, but I am with you, at a certain point, don't give up too much of your life.

I wouldn't say my result is perfect. I got through the surgeries easily, minimal time in the hospital and no complications. It has been a really long road though in general. I was "fine" for quite a while, but not what I would consider "great" - after months, I have come up to a point where I would say I am doing fantastic but a lot of it is perspective. I go to the toilet a lot more than a normal person, but it's not life altering, definitely less life altering than the UC, doctors appointments and drugs were in my case. I was seeing the doctor literally every few weeks at one point - always getting pricked and prodded. Nothing worked, it was getting to be a big problem with work too. I was constantly unavailable. I haven't had any days where I was unable to work in months. Granted, I do go to the bathroom more than other people, but it takes me the same amount of time it takes to pee and I am off all drugs. It's definitely a trade-off. I certainly never wanted to poop more often. The more time that passes, the less I go. I also never expected to get my pre-steroid figure back so that was a huge silver-lining. I'd take my old figure + poops WAY before being chubby, drugged and dealing with UC tongue
Posted 8/11/2016 6:39 PM (GMT 0)
@chickenwings1 , yes, it is weird to be showing niche drug ads but that's how it is. If you watch any sort of TV or read a magazine, you will see drug ads for just about any ailment, the most recent being drugs that will extend your life if you are about ready to check out from lung cancer. Oh and the one for Hep C, which pretty much cures it, if you can afford it.

Out of curiosity I just checked, New Zealand is the only other country that allows drug ads.

@NSSG, given that I always get the worst case scenario, I did with Psoriasis and Graves, I'm not expecting my Pancolitus to be any different. I would have done the same in your position, for sure. And who knows, maybe more advanced, better surgery techniques will come along or more effective drugs will be available. There's always those things to hope for. If anything, the awareness for IBD is a lot better. Back in my mom's day, she had Crohn's, you never heard anything and it certainly wasn't anything you heard anybody talk about.
Posted 8/12/2016 7:41 PM (GMT 0)
Well, the elimination diet has well and truly gone out the window to be honest with you all and I haven't really noticed any difference apart from being happier. The Pred is probably just masking any issues I have with food if their are any so may aswell leave it until I'm least off that

Nicecupoftea- it sounds like your brother has been lucky with his case of crohn's. Gives me a little hope that my uc might not end up being as bad as I'm fearing.

Notsosicklygirl- your experience with surgery certainly sounds like it's been life changing for you. Just a shame that your kind of outcome isn't guaranteed, hopefully in the future though. Are the outcomes nowadays any better than they were say a decade or 2 back? Are things heading in the right direction or just the same?

Chicken wings- the weekly progress point is a very good bit of advice and 1 that I'll certainly be taking on board, seems like my faith is also in the drugs now too after just eating KFC. Haha.
Posted 8/12/2016 7:55 PM (GMT 0)
UC55 - Most people with UC have a mild to moderate case, so my brother's example may not even be unusual. I do think we see a disproportionate number of severe cases on here, but that's only to be expected. People are far more likely to seek out help when the meds aren't working and they are facing difficult choices. That's how it was for me. My Crohn's actually started off very mildly and stayed pretty mild for another five years, until around 2005. Had it stayed like that, I would never have joined HW - I wouldn't have seen the need to.

Also, while mild cases can get worse, it seems uncommon for mild disease to get as bad as mine did. If UC is gonna turn bad, it's most likely to happen in the first year or two after diagnosis.
Posted 1/9/2018 6:42 PM (GMT 0)
I had symptoms since May 2017, diagnosed with pancolitis in Nov 17. On 2g pentasa a day and Clipper for a month in Nov. Before this was vegetarian and drank a lot of beer. I tried giving up beer but no difference. After months of being told to eat low residue diet, not too much fibre (I mostly ate white bread and chicken), I did a lot of research and then tried a different approach....

Spent a week eating potatoes, peanut butter, soya protein, spinach, and bananas - Diarrhoea reduced, but mucus and bleeding continued. I then changed to a proper elimination diet and things seem to be improving (less pain, better sleep, fewer BMs etc), however my willpower is getting to the end of its tether.

I really can't see myself managing this for another fornight and then introducing things gradually, has anyone had luck with a shorter version of the elimination diet (i.e. not waiting the full 23 days before introducing foods back in)?

My great aunt has crohns and told me to get a bioresonance hair allergy test, but it just seems too far from proper science for me!
Posted 1/9/2018 8:17 PM (GMT 0)
in my opinion, you're changing things a bit too often - healing is a gradual process, so try to be patient and let things work - will they ? hard to tell without enough time -

what are your current meds and symptoms ?

what you eat/don't eat can make a huge difference - but again, you have to be patient at times to see results -
Posted 1/9/2018 10:57 PM (GMT 0)
That's helpful thank you, I think after being so unwell last year before finally getting seen, everyone around me (and myself included) is in a hurry!

Currently on Pentasa 2g per day, blood in stool, mucus and going to toilet about 10 times a day.

I have written it all down so hoping to see some sort of pattern eventually and get on top of things
Posted 1/9/2018 11:02 PM (GMT 0)
we all understand the desire to right the ship immediately -

let me be the first of thousands more after me to say, GET ON SOME BUTT MEDS NOW !

and if all this sh!t is messing with your life too much (job, family responsibilities, etc.) get on an oral steroid -

call your doc today -

and once the ship is going in the right direction, and especially once you are off the steroid, then start working on some diet changes - but be patient with the meds - otherwise you won't know what's working and what's not -
Posted 1/10/2018 12:34 AM (GMT 0)
2g pentasa is a very low dose you should be on 4,800mgs a day. You should be on a rowasa/salofalk/mesalamine retention enema nightly. Contact your gasteroenterologist and ask for updated prescriptions.

Diet did absolutely nothing for me, others swear by it. But that's UC in a nutshell, results vary wildly person-to-person.
Posted 1/10/2018 8:06 PM (GMT 0)
For me, the food aspect to this disease is the biggest nightmare. I can deal with bleeding, pain, even frequency... I can't deal with such a restricted diet. It is a source of mental health problems for me. And it's something that surgery won't fix because the vast majority of IgG and IgE reactions are taking place in the small bowel. What surgery does is mask the downstream effect, even though the antibodies are still harming you.

The thing to remember about food reaction is that they often take days before the gut reacts. If you just ate a piece of bread, you're not going to know for sure what its impact will be while you feel it moving through your bowels. Unless you have anaphylaxis, there will be a delayed reaction. For example, I'm celiac. When I eat wheat I immediately feel tired, but my bowels don't start shedding their lining and the big diarrhea doesn't start for 2-3 days after the wheat exposure.

On the whole I have not found elimination diets terribly useful. I have many food sensitivities but they are always changing. Leaky gut creates a situation where if you avoid a food, the body will forget about it and will instead become sensitized to new foods. For example, during my first flare I could eat nut butters, then in my second flare I couldn't at all, and now I can again because I avoided them for a year or more. I have this issue with many different foods.

The basic foods that I know I will always be reactive to are: gluten, dairy, eggs, soy, artificial ingredients, gums, and processed foods.

Everything else is highly variable which is why elimination diets are not totally backed by science. As long as the inner bowel wall is exposed to the full brunt of the immune system, then a food that seems safe today could be unsafe tomorrow.

Just remember that it's going to take a while - days to weeks - to notice whether a food or its absence is having an impact. That's why UC is such a difficult disease... there is a lot of guess work. Keeping a food diary is important. If you find yourself flaring and you think it's food related, then don't just assume it's because of what you ate today. Look back at what you ate in the past 3-4 days or so.
Posted 1/12/2018 7:47 PM (GMT 0)
Thank you, I will indeed request some more meds from the Doc on Wednesday. I suppose another oral steroid or enemas may help. I have had some firmer but painful stools (proctitis?) over the last few days which is a blessing. Who knows if it is the medication or the diet, but I have been on the same meds since November, so only big change is diet (and increased amount of cannabis coconut oil - which if I take, means I might be able to wait until 5 or 6am before going to the toilet).

The Pentasa dose was a typo, sorry, meant to say 2g twice a day.

That sounds like a nightmare with the moving target of diet. I suppose that as it goes on I will slowly work out some of things I am sensitive to. I am really hoping beer is not one of them!
Posted 1/12/2018 8:41 PM (GMT 0)
2-grams is a low dose, should be 4.8 grams.

Healing is a dreadfully slow process, taking many months (even though you/I want to be better yesterday). So, I would not preclude that pentasa is still healing you at a slow rate month-to-month. Often it is combination-therapy that produces the best result for us, so it is likely a combination of everything you are doing that is making the big difference. There's absolutely no instant-gratification with an UC. We all wish it was easier and faster, but ultimately it is going to take a lot of time, patience, trial-and-error, and persistence to achieve a remission with your UC.

Good luck!
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