Endo on bowel, diet advice needed!

Hi all

I have posted in here a lot recently and found others responses really helpful, I hope someone has some good advice for me right now!

I am currently waiting to see a bowel specialist for my endo. In was diagnosed two years ago but they couldn't remove the endo. Fast forward 2 years and my life feels like it's falling apart.

I suffer chronic pain, diarrhoea, constipation, severe bloating, blood in stools, fatigue, sickness and I trying to manage all of this by watching what I eat.

The problem I have is I can't seem to ok point what flares me up. Ive tried going gluten free and dairy free but I'm not sure if it's helping.

I like to have drinks with friends but i am considering giving up alcohol as I know this flares me up horribly. Does anyone else have this?

If anyone has any tips or diet advice I would really be grateful. Currently considering a veggie lifestyle as well! Feel like im losikg control of my life and the things I can cannot do!

Thanks everyone in advance

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How long have you been gluten free because it takes months to remove the gluten from your body so I would try for over a month 😮 I would cut down on alcohol red meat and soy 😮 Eat lots of leafy greens and ginger 😮 I've started to take turmeric and peppermint oil everyday they seem to help a lot as well as friendly bacteria 😮

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I have a dairy free, gluten free diet most of the time and have switched to almond/oatley barrista milk in tea and coffee. It’s very difficult to stick to it every day I must admit but any changes you make are bound to make some difference. After my lap I went pescatarian for a month and felt amazing, I avoided soya too as it’s high in oestrogen. I could live that way if all the naughty yummy foods weren’t so easily accessible. How I craved pizza when they brought it home and I sat there with my sardines and boiled veg, I was raging inside! This Christmas I’ve totally let go and indulged in all things I shouldn’t! Good luck xx

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Hi flossy24, I have only recently been diagnosed (in Nov) and suffer with bowel related symptoms too. I have found that cutting out sugar, meat and processed foods has really helped. For example, no fizzy drinks, chocolate, fast food, crisps/snacks etc, meat. I have been having a lot of fresh veg and some fish, almond milk and coconut yoghurt and fruit smoothies. Not going for the quick M+S lunches that I would have normally grabbed on my lunch break but taking in salads and veggie lunches instead. I have cut down on alcohol but not completely stopped. I did this for around a month and although I felt a little constipated at times, I have to say my mood improved massively, I had more energy, less bloating, headaches, nausea and dizziness. I don't think my bowel/digestion problems will change completely until I have surgery. I plan to eat mainly veggie meals wherever possible as it is generally better to eat more fresh food and not feeling bloated and nauseous everyday is something worth smiling about :) Good luck with the diet change!

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Hi, I really feel for you. I had stage 4 Endo nodule attaching my bowel to my vagina and have had non stop digestive issues and reflux esophogitis since my extensive excision op in July. I lost almost a stone in to become clinically underweight. I escaped with a deep bowel shave, avoided a resection and have no infiltrating endo so triggers may be altogether different for you.

The first thing is to start a detailed food and symptom diary to start to identify your personal triggers as everyone is different. ( Bizarrely i discovered onion and garlic are bad ones for me, I'd never have guessed)

I've been veggie since a teen and do think it was a reason why pain was never a big symptom for me it was chronic fatigue, dyspareunia , bladder issues and back pain.

My diet since September is best described as ovo vegan , gluten and dairy free. I avoid acid/sugary and high fodmap foods. I don't do alcohol, chocolate and caffeine either. After being super strict for 3 months I've finally started to regain weight this past week am starting to feel better and to reintroduce eliminated items experimentally. It's not as hard as it sounds once you get going, and I've found some yummy new foods along the way.

Gluten and dairy are both inflammatory and good to avoid. Conversely ginger and turmeric are anti-inflammatory. I also think probiotics helped get my system back in balance.

If you have ibs type issues it may be worth investigating the fodmap diet ( developed by Monash University). I found these of use.

dietvsdisease.org/diy-low-f...

amazon.co.uk/Low-Fodmap-Veg...

Feel free to pm me, good luck XX

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I feel the exact same as you at the moment. I haven't stopped crying over the last few days from the pain and feeling so so uncomfortable.

I have recently given up alcohol as it was making me alot worse and making me flare up.

I also have endo on my bowels and awaiting my mri scan results to see if it's gotten worse.

There is a few good websites online which give a list of foods to avoid. Red meat is one to avoid. Again, I too am trying to find ways to help change my diet. Good luck xx

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Hello, sorry to hear how you are suffering :( I have stage 4 endo with a large module on the bowel and am due quite an extensive lap to remove it with possible colostomy bag temporarily until it all heals. I follow the endo diet usually which is free from dairy, gluten, meat, sugar, soy, caffeine, alcohol, processed stuff (can’t think of anything else off the top of my head). When I am being very good I feel so much better but it was quitting sugar that really helped my bowels and to regulate my ... errr ... movements! 😂

There’s some great info online but especially a website called endo resolved written by a lady called Carolyn levit who has published a couple of endo diet recipe books to accompany it. It’s a massive adjustment and I think for most people it isnt realistic to be 100% committed all the time (I’ve just had Christmas off and now consequently feel crap). I’m actually looking forward to a full endo diet Jan! But even making a few changes and sticking wiTh them should help.

Very best of luck xxx

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I was dairy and gluten free for a year and it didn't help. During that time my pain actually got worse. Let's be honest, if your diet is awful and you swap crisps and white bread for fruit and vegetables you are going to feel better but only because you are eating less rubbish, not because it is a fix for endo. I like to cook and my diet was good anyway, so in the end there didn't seem much point to such a restrictive diet.

I stopped drinking alcohol in January 16 when I had my first surgery (though I didn't drink much anyway) and don't miss it so I have never gone back to it. I'm also caffeine free and have been for a long time and find now after surgeries that if I have the occasional diet coke it causes terrible bladder spasms at night, and that's the only thing I have found makes any difference. If you don't think cutting the foods is working for you then there's no need to persist with it, especially not if it is making life more difficult.

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Sorry to hear you're having awful flare ups. I can totally relate.

You've been given some great advice here regarding the Endo diet. I went gluten, dairy & soy free for 3 months a few years ago as that is the recommended time to see any changes & was still in agony. Turns out it was because I was eating lots of hummus - chickpeas have estrogen in them which doesn't agree with me so I really think keeping an eye on what you're eating is the way forward even though it's so bloody time consuming & frustrating!

Eating lentils & brown rice everyday also makes a massive difference to my bowel movements & subsequently means I have less pain during that time. It also means I feel fuller & less likely to want to eat chocolate & cake!

Good luck with it all. Xx

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Ladies thank you all so much this has been really helpful. I'm going to spend some time really looking at my options and will go from there. I have an ultrasound on Friday to check up on a ruptured follicle to see if it is a cyst so that could well be the source of a lot of the newer problems I've been having. So good to know we aren't alone in our battles! Wishing everyone a healthy 2018 xx

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