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JEEEEEZE what's going ON in there?? Anyone up for a bowel/ibs/ibd/wtf thread

282 replies

MrsBrady · 09/06/2016 10:52

Fed up? Stuck in? Off work? Can't eat? Can't play? Can't or don't want to burden your nearest and dearest? Fancy a bit of a vent?

I'm currently on day infinity of partial house arrest

dx with microscopic colitis this time last year- all good

now having a total bastard of a flare that's been going since January and shows no sign of fucking off

I. AM. SO. BORED. OF. THIS

last week I had to take a poo sample to the gps. Again. The receptionist showed me the elaborate way you're supposed to arrange the bag and label, but I said 'ooh don't worry shsowing me love, that's the last one of these you'll be getting from me'

and less than a fucking week later, there I was again this morning, with me warm bottle clutched in my fist. And I STILL didn't know how to fold the label

I'm worried it might be uc instead. The symptoms seem to tally.

I really really don't want uc. I really really really don't want Crohns can't spell it

anyway. Enough about me. How about YOU

OP posts:
lovesmycake · 20/06/2016 10:07

I've had iron infusions it's nothing to worry about. I took my kindle in and had an hour without the kids which was rather pleasant! It made me laugh that the infusion looks like Irn Bru too Grin

I will ask my gp about the drug for joint pain fanjo, I'm relieved to hear there is something that could help, Thankyou x

bigarse1 · 20/06/2016 10:12

I wonder if anyone can help advise me. I am now at the point that I am scared to eat or drink as it goes right through but of course I cant go without as I get dizzy with the amount that is coming out. what options are there for this?

HisNameWasPrinceAndHeWasFunky · 20/06/2016 10:22

so although 2 weeks on the low FODMAP diet has stopped all the pain and cramping, I'm now constipated. Angry

Its been a few days now.

I have a low fever and feel like I'm coming down with something flu like, but I am pretty sure I just need a good poop. Yesterday was a write off - I thought I had flu for goodness sake I felt so dreadful.

last night I took 2 grams of Vit C. Today I will focus on drinking loads of water and eating citrus.

This really is a rubbish cycle of misery.

(I know my sufferings are much much less than others here are experiencing - hope it's OK just to have a whine anyway. This really affects my life and well being immensely.)

parmalilac · 20/06/2016 10:23

A note re colonoscopy - when I had one they asked me if I wanted a sedative. I was puzzled and asked if it was not usual. They breezily said that it was up to me, and that many ppl do it without one. Thus I said no as I have a fairly high pain threshold .... well without going into detail it was the WRONG decision. I suspect, as pp said, they try to avoid sedatives as it gets lol in and out more quickly. DO request one if they don't insist on it.

MrsBrady · 20/06/2016 10:32

This thread is for EVERYone to have a moan/offload. Constipation diarrhoea and everything in between. IBD IBS intolerances and whatnot. Pre op post op undiagnosed. The Waiters, waiting hopelessly for hosp appointments (me)

Hello all welcome to thread

The toilets are on your left <
(celestial music is piped in so noone can hear you)

Antibac pumps baby wipes loccitane products and sinks on your right >

OP posts:
HisNameWasPrinceAndHeWasFunky · 20/06/2016 10:43

:)

JeepersMcoy · 20/06/2016 12:27

Hello all. It is nice not to feel alone with it all. I find the low fodmap works like a dream for me as long as I stick to it. Any deviation results in horrific stomach cramps and general unpleasantness. I have managed to reintroduce a bit of pasta though which is nice. It is a tough diet at first (I have read hardcore paleo types refer to it as 'the no fun diet') but when the alternative is crippling pain and sickness I find I manage quite well. The worst is not being able t eat onion and garlic. I also have problems with anything deep fried.

For those trying it is pretty low on the fibre so you do need to watch out for constipation. I recommend lots of greens and citrus and chia seeds or linseeds are pretty good as well. Also sourdough bread is low fodmap so if you can tolerate it that is really tasty. I tend to get severe constipation with my IBS anyway so not so bad for me.

MrsBrady · 20/06/2016 13:54

I've just got a letter from my local hospital

I've got an appointment.......in September Sad

I'm in bits here

I should have been seen a year ago and I wasn't because of an admin problem where they were supposed to send me a follow up appointment and didn't this isn't really an admin problem more a couldn't care less problem

I told them my symptoms had come back in February and have been palmed off ever since

am I supposed to put up with explosive diarrhoea, shitting blood and mucus TILL SEPTEMBER??

it's been going on since January now, getting steadily worse, and I'm worried it's either UC or worse

by the time the colonoscopy appointment comes through I'm looking at almost Christmas

I can't stand much more of this

OP posts:
HisNameWasPrinceAndHeWasFunky · 20/06/2016 14:00

Oh MrsB that's really wretched!

ShortyShortLegs · 20/06/2016 14:18

Lol MrsBrady! Grin
I will definitely request sedation then, thanks all! I have steroid injections into my hernia scar as pain relief and always get sedation for that so at least I know what to expect there. I've had two c-sections and two hernia repairs on the same site, currently waiting on a second opinion from a hernia specialist on a third repair because the general surgeon won't touch me (too risky with mesh stuck to bowel and adhesions, plus I now have separation of stomach muscles) so I am worried about damage from the colonoscopy. I am pretty good at relaxing and letting them get on with procedures usually, but I don't think I will be able to with this.
On instructions fromthe allergy clinic have just done a month of very low salicylate diet, I was supposed to do three months, but it was hell! My poor bowels did not like that at all and my allergy symptoms (swollen, red rash like sunburn, itching, hives, etc.) did not improve at all. I ended up on a course of high dose Prednisolone which has helped me look more like my normal self!
I also have Type 2 Diabetes and the dietician looked through my food diary and said it was excellent, very healthy and not to do Fodmap until after I have seen gastro clinic as I have some major allergies including fish/shellfish/almost all fruits and have a restricted diet already.
They are all worried as I have lost over two stone in a year without trying, and have B12 deficiency but am allergic to the injections! I think it is because the food is going straight through me, lots is undigested, lots of mucous and often blood on wiping but I think that us probably just from going so often. If I eat a filled white baguette and salad at 3pm, I'll be on the loo by 7pm...with explosive diarrhoea, then back and forth to the bathroom all evening. Everything will settle by 2am but then I have such bad pain in my hernia scar/adhesions I can't sleep. And I find all the diarrhoea makes me exhausted, makes my legs ache, ankles swell and gives me hot sweats.
I'm a real catch, red and swollen, hot and sweaty, bloated with wind that smells like rotten eggs and on an exercise/strenuous activity ban until my hernia is sorted......my poor husband has a lot to put up with Blush

PerspicaciaTick · 20/06/2016 14:25

I'm sorry your appointment is not until September. Any chance that a conversation with the PALS at your hospital (making much of the original admin cock up) might speed things up for you?

barbet · 20/06/2016 14:36

Hello everyone ... I just came on to say that if you haven't had your vitamin d levels checked, it might be worth it. I've been on high supplements for a fortnight now (relating to recurrent miscarriages) and it might just be a weird coincidence, but it seems to be helping with my IBS and anxiety symptoms too.

Not necessarily a miracle cure and not something I was expecting at all, but in the last week for some reason I've been able to eat, like, regular food and not curl up on the loo for days on end afterwards!

HisNameWasPrinceAndHeWasFunky · 20/06/2016 14:43

Actually I am low in Vit D and have been for well over a year now - over which time the IBS has been progressively worse.

I do take VitD supplements, but erratically. There has been no improvement in my VitD levels so clearly I'm not taking enough.

I'm making more of an effort to take at lease 1000IU of D3 daily now.

ShortyShortLegs · 20/06/2016 18:17

Sorry MrsBrady I cross posted, my laughing face was for your previous post.

Sorry to hear you have such a long wait...I waited since Decemeber on the general surgery list (hernia) despite my GP writing four times requesting that I was expidited and put on the urgent list as I was deteriorating. Then they increased the list so I wouldn't have been seen until September at the earliest.
A new GP joined our practice who suggested I paid for a private consultation. It cost me £160 at a local hospital, I waited two weeks and have been referred for a CT scan on the NHS which will be 4-8 weeks wait. And then I'll see the surgeon 4-8 weeks after that on the NHS again. In the meantime I have been referred to a private hernia specialist for a second opinion, which cost around the same price. I know not everyone can afford to do this (I can't, mum has lent me the money) or agree with doing it, but I didn't even realise it was an option. It has fast-tracked me to the second stage. Complaining and badgering got me nowhere.

AMR123456 · 20/06/2016 18:27

Barbet funny you should mention Vit D levels I've been on & on it for couple of years never really brings levels up though. At my appointment with gastro a few weeks ago he sent me for bloods again said if they are still low he'll try me on a new kind of vit D he said its alot more expensive but to try see if that helps. Not sure what it's called though.

lovesmycake · 20/06/2016 18:35

Oh mrsbrady that really sucks Sad

JeepersMcoy · 20/06/2016 20:13

It's so frustrating having such long waits mrsbrady. :(

I have suddenly got terrible trapped wind and cramping for no obvious reason tonight. I suspect it is the reheated chilli I had for dinner. I have noticed I am increasingly reacting to reheated animal fats and cooked dark meats. My dietician says it is common for fats to be a trigger for IBS. It's all up under my ribs and hurts like hell.

I was tested for vit D, thyroids, celiacs and all sorts of other things last summer when I first went to the GP, but apparently I am a picture of perfect health...apart from the fact I can't bloody eat anything that is Hmm

Dowser · 20/06/2016 20:32

My gp used to say. 5000 units in summer and 10000 to 15000 units of vit d3 in winter. I take a spray with k2 added

It helps it absorbapparently.

IDismyname · 21/06/2016 08:11

Mrs B Ring hospital regularly and beg for any cancellation they have. Pester them!
It worked for a friend of mine who was desperate for an MRI a scan.

HisNameWasPrinceAndHeWasFunky · 21/06/2016 09:40

updates.nutrigold.co.uk/assets/pdf/Nutrigold_IBS_newsletter_-_new_for_web.pdf?pa=YWxsb3c=

This is an article detailing a naturopathic approach to dealing with IBS.

5R's:
REMOVE offending food or gastrointestinal infections/ bacteria balances
REPLACE necessary digestive support
REPOPULATE levels of beneficial gut bacteria
REPAIR the gut barrier
REBALANCE by addressing lifestyle, psychological issues and stress

HisNameWasPrinceAndHeWasFunky · 21/06/2016 09:59

For those the LowFODMAP diet didn't work for , I think this about Histamines is really interesting (I've not read about this before). Interestingly many of the high Histamine foods mentioned are low-FODMAP foods.

(from article linked to above)

HISTAMINE & IBS
We have discussed that not all foods raise a measurable immune (immunoglobulin)
mediated reaction potentially resulting in a negative food allergy/ intolerance
test but with IBS symptoms still predominant. For IBS symptoms that do not
resolve with other dietary approaches like removing gluten, dairy and low
FODMAPs foods, it may be useful to consider the levels of dietary histamine.

Histamine acts as an important signalling messenger throughout the body
including the brain and gut. Our body synthesises and stores histamine in mast
cells, especially in the gastrointestinal tract. High levels of histamine are also
present in certain foods (Table 2). A healthy gut and immune system regulates
histamine levels via the enzyme diamine oxidase (DAO), found in high levels
in the gut mucosa. However, intestinal permeability and dysbiosis can reduce
DAO activity and, coupled to high levels of histamine in the diet, may cause
and/or exacerbate IBS symptoms including bloating, cramping and diarrhoea.

For people who are still experiencing IBS symptoms after some dietary changes,
reducing the dietary histamine load for a few weeks during the 5R programme
and supplementing with DAO enzyme may be beneficial (Table 2).
Fermented foods, which have long been associated with naturopathic diets
for increasing levels of beneficial bacteria, are also rich in biogenic amines
that reduce the activity of DAO.43A This means that in the early stages of
an IBS programme, using high scientifically proven probiotic supplements,
alongside dietary approaches to support the levels of beneficial gut bacteria
(see REINOCULATE stage) may manage IBS symptoms better and prevent IBS
flare ups. Fermented foods can be introduced later in the IBS programme and
enjoyed long term when gut structure and function is more efficient.

TABLE 2. HISTAMINE IN THE DIET
High Histamine Foods or
Foods That Release Histamine (HR foods)
Alcohol - champagne, wine, beer, cider and other fermented drinks and spirits
Pickled or canned foods - e.g. sauerkraut
Matured cheeses - e.g. parmesan, mature cheddar
Mushrooms and Quorn
Smoked meat products - salami, ham, sausages, bacon
Fish - tinned and smoked fish and shellfish
Beans and pulses - chickpeas, soy beans, peanuts
Dried fruit, seeds and nuts
Chocolates and other cocoa based products
Vinegar including salad dressings, pickles, mayonnaise, ketchup, mustard
Ready meals
Yeast extract, yeast
Additives - benzoate, sulphites, nitrites, glutamate, food dyes
FruitHR - bananas, strawberries, tomatoes, pineapple, mango, raspberry,
grapefruit, avocado, tangerines
VegetablesHR - spinach, pumpkin, aubergines
Green and black tea (block DAO enzyme)

Low Histamine Foods
Fresh meat (cooled, frozen or fresh) including chicken
Freshly caught fish
Egg yolk
Fresh fruits - with the exception of strawberries, and other fruits listed on the
HR column, most fresh fruits are considered to have a low histamine level
Fresh vegetables - with the exception of tomatoes, pumpkin and aubergine
most fresh vegetables are considered to have a low histamine level
Grains - short grain brown rice, rice noodles, yeast free rye bread, rice crisp
bread, oats, puffed rice crackers, millet flour, pasta (spelt and corn based)
Dairy alternatives - coconut milk, rice milk, oat milk
Cooking oils - especially organic virgin coconut oil
Organic flaxseed oil
Leafy herbs
Herbal teas - including peppermint, ginger or fennel

Simmi1 · 21/06/2016 11:10

That's really interesting Hisnamewas. Have you tried low histamine and did it help? I've not heard of that. Hope you're ok Mrs Brady - I agree about calling for cancellations. Is going private an option?

HisNameWasPrinceAndHeWasFunky · 21/06/2016 12:30

Not tried it - but low FODMAP diet has worked wonders for me (i'm on week 3 now). I've still got a way to go with it, and I have some constipation still, but massive improvement. But the bit about Histamines stuck out for me as several posters on this thread have been saying lowFODMAP didn't work for them at all.

So I'm researching what to do next - how to heal and support my gut etc. I am going to try some good quality aloe vera & later on start up the pro-biotics again.

I do feel that with systemic/dietary issues like IBS, natropathic principles have a lot to offer.

MrsBrady · 21/06/2016 12:33

sorry didn't come back yesterday, I was a bit Blush about having a hissy fit

Grin at xpost Shorty

thanks for all tips, people- I'm doing PALS plus pestering, also have a GP appt next week and hopefully she'll pester too. Again.

re private- I did look at colonoscopy costs but it was ££££s. That's interesting Shorty about just paying for a consultation- THAT's the bit I need, to kick the process off. I'll see if GP knows anything about it

wishing you all a cramp/diarrhoea/constipation/piles/etcetcetc free day (AS IF but we can hope)

OP posts:
Simmi1 · 21/06/2016 12:41

Thanks Hisnamewas - I did a bit more research into histamine intolerance but as I have no non-bowel symptoms (sinus issues, low energy etc) it doesn't feel like that's my problem. Very interesting though!
Good luck Mrs Brady, yeah colonoscopies are expensive - all that money for a 20 min procedure Hmm

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