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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:
Lilybensmum1 · 19/06/2016 20:24

Thank you * MrsBrady I hope it's macroscopic colitis for you too! Just feeling a little sorry for myself today that's all.

MrsBrady · 19/06/2016 20:40

aww you're in the right place for a little cry. It's tough!

I saw a thread like this some time ago-think on a IBD forum- and it was a bit hopeful. One poster said she had Crohns but her surgery had been successful, her combination of drugs was working and she was in remission

she said it had an overall positive effect on her life, in that, every day she had a GOOD day, she really appreciated it- just doing normal, everyday things people usually take for granted

do hope your DH starts turning a corner soon

OP posts:
lovesmycake · 19/06/2016 20:41

Pnut I had my levels checked when I came home after diagnosis so feb and I take vit D after my step-mum read some study on how good it is for UBD but I should probably go back to the docs and get them to check again.

It's a bit complicated as my gastro team said if I had any problems they would do a full colonoscopy instead of the partial one I had in hospital in the UK (I live in Norway) and I really don't want another colonoscopy which I know is silly Sad

MrsBrady · 19/06/2016 20:52

it's not silly

colonoscopies suuuuck

that said I would willingly have one tomorrow if it meant they would FIX me Grin

OP posts:
lovesmycake · 19/06/2016 20:54

Oh yes, when they did the first one I couldn't of given five fucks as long as it meant someone would give me an answer Grin but I was in a pretty serious state. Do they ever knock people out for one?

MrsBrady · 19/06/2016 21:09

I don't know about Norway but here they give you a sedative -though it might as well be iv smarties for all the effect it has ime

OP posts:
lovesmycake · 19/06/2016 21:14

I had the colonoscopy in the UK and agree the sedative was useless Sad

Dowser · 19/06/2016 21:22

I had a anaesthetic, think its the right word to knock out any pain in innards while they did a full colonoscopy.

It was bloody bliss. But then I was experiencing a lot of pain from the severe purging I had to do in order to have the procedure.
If my innards felt like that every day I'd be walking on sunshine lol

This was my post 60 year old check because I had bleeding when you do the poo test. Don't know why it triggered blood but everything was gorgeous up there and pain free

Till the anaesthetic wore off lol

JeepersMcoy · 19/06/2016 21:39

Can I join! Please! I need somewhere to rant occasionally about my cantankerous innards. I've had IBS since my teens but had a severe flare up that started last summer and hasn't gone away. I have now been on a low fodmap diet since last autumn and haven't really managed to reintroduce many foods, so still very restricted. I see a dietician who gave me leaflets and sort of looks a bit blank and confused when I ask any questions.

I am bored with not being able to eat out without stressing about whether I will have crippling stomach pains afterwards. I hate having to explain my food issues to people if I visit them. I basically carry around my own snacks with me everywhere now after going hungry at parties so often. I miss being able to eat anything I liked.

On the bright side I have saved a fortune by not being able to eat any takeaways ... ever...Hmm

Dowser · 19/06/2016 23:15

Just read that fodmap diet....nightmare. I thought mine was pretty restricted but it's nothing like that.

I stick to proteins, veggies and carbs like good quality brown rice, quinoa, buckwheat, spelt occasionally and sweet potato.

I have a low fruit diet. Occasional apple or pear. Not every day.

Dark chocolate occasionally. Only eat potato if we eat out . Cheese occasionally.
I drink any herbal tea. Not a coffee or tea drinker. Occasional tonic water with splash of gin.
Once or twice a week.

I eat onions every day and eggs. I eat every veg that I like. I wouldn't like to do that fodmap one.
Is it working if you haven't got over your flare up?

Dowser · 19/06/2016 23:33

I've just dowsed the fodmap diet and like I suspected my culprits are wheat and milk....all, even goats and sheeps. I can have cheese. Onions are fine too.
Something that I don't have to cut out but I don't drink it is fruit juice. It's not detrimental but because of its high sugar content I prefer not to have it.

It's well worth learning how to dowse your foods just to double check what is detrimental and what isn't.

glassgarden · 19/06/2016 23:59

'Dowser Sun 19-Jun-16 19:14:13
Here
www.coloplast.co.uk/peristeen-anal-irrigation-system-en-gb.aspx'

that looks like a fancy enema kit to me Dowser
I'm sure you could get the same effects/ benefits from a 'bog standard' enema kit?

(excuse the pun I know from personal experiences that these kinds of issues are no laughing matter!)

Dawndonnaagain · 20/06/2016 00:05

Four sodding times I shit myself last Friday, four. And I wasn't home all day! I had to buy undies, again. I have u.c. and proctitis. Bad flare at the moment.

fanjolamps · 20/06/2016 00:48

loves I would advise you to talk to your Gastro consultant/ Gp about sulphasalazine. It is a god send for joint pain. It helps me massively.

fanjolamps · 20/06/2016 00:52

And please anyone with proctitis insist on rectal foam mesalazine (pentasa) also known as asacort foam enemas. if you are on pred you can so try the pred liquid enemas.

ShortyShortLegs · 20/06/2016 00:55

How sad that there are so many of us with bowel problems :(

Well, I had my appointment at gastro clinic (8month wait) ...the consultant was really nice. He wants to do camera up and down, but I've had to do a stool sample first to check for Calprotectin....it was a bit of a shock but he thinks it's probably Crohn's Disease from my symptoms.

I am pretty worried about having the cameras because I gag with anything in my mouth and have had two hernia repairs which are breaking down again with mesh stuck to the bowel, adhesions, scar tissue, nerve and muscle damage which is very painful even on a good day. And my bum is so sore I've been using Sudocreme Blush I have requested sedation, but the consultant said it wouldn't be a problem and wouldn't be painful!
He seemed determined to get me sorted out though!

fanjolamps · 20/06/2016 01:16

shorty you can request to be knocked out for the endoscopy (camera down) I've never had one without being asleep and couldn't imagine otherwise! For the colonoscopy I'd advise requesting the valium iv.. Also know as conscious sedation. Full colonoscopies hurt a bit though. Its just a case of grin and bare it tbh.

Simmi1 · 20/06/2016 02:43

I had my colonscopy and endoscopy at the same time - I was sedated and literally don't remember a thing - I didn't feel anything at all and didn't feel any different when I was woken up. I also have a strong gag reflex and probably would have suffered without. Also I wasn't particularly groggy after the sedation.

MrsBrady · 20/06/2016 03:30

shorty ime they try and talk you out of sedation with an endoscopy-they want you in and out asap

When I had mine, I let myself get talked out of sedation and had a shit time, only to be told at the end that I should have made sure I had sedation Confused

I'd insist on it if I ever had to have one again. They're pretty unpleasant

OP posts:
Underbeneathsies · 20/06/2016 04:06

Me too!

After the birth of my last baby, I couldn't walk for 5 minutes without needing to explode. And explode I did. Took babe into all kinds of loos in the buggy and in the sling. Just horrible. I thought it was due to my gut being moved about during the cesarean birth. I had adhesions around the bowel which put it into spasm.
Was constantly knackered and reluctant to go anywhere.

Have always had a nervous tummy- just before going on stage / giving talks I would have explosive diarrhoea, so an overactive adrenal response. And just before and during the first days of my period, would explode for a few days as well.

Got a bad tummy big on hols and shat constantly for two weeks. Couldn't sight see, just had to stay in the hotel room, or venture very gingerly to the terrace. Had to put nappy cream on my bum it was so raw, even with a bidet. Came home and took grapefruit seed extract and ponstan.

Had antibiotics for about a year for a persistant infection and back to square one, exploding and swelled up with gas.

Until my GP recommended the FODMAP diet, which after a few weeks did the trick, and for the first time in five years I had a normal poo. No exploding and no cramps. My god just wonderful. A normal one, like before, not runny, scrapy, sore, explosive, gassy, stinky or in tough little bits and then exploding.

I'm fine now, with no IBS at all. I no longer have to carry all the stuff I used to, and can pop out and run around with the kids, without clenching, having to stop walking suddenly wondering if I needed new clothes, or the really awful sudden loo trips.

Maybe try the FODMAP.? It's not a nice diet, no healthy things, but when you're no longer offered a seat on the bus, (if you've been brave enough, or have enough energy to get one), it's doable, and the FODMAP doesn't last forever.

I didn't have any problems when on hormonal contraception, and now am on HRT, still no problems.

It's so nice to be able to swim again without the fear. Flowers

Simmi1 · 20/06/2016 06:32

Oh underbeneathies - how awful! Mine also started after childbirth but interestingly my first was EMC and had no problems. The second 9 months ago was a VBAC with 3rd degree tear and problems started after that. It's been suggested it was the antibiotics I took to stop my stiches getting infected but before my 2 births I hadn't had antibiotics for 20 years but maybe I just have a really low tolerance or something. So sorry it took so long to resolve but glad that it did. Was your husband understanding? Mine is but my bad moods and depression caused by my poo problems have put a bit of a strain on things. A few months ago I was having lots of diarrhoea mainly in the morning and explosive diarrehea as well. I didn't go out much in the mornings. Now my problem is more just not feeling quite right. I might have a normal bowel movement in the morning but it may just feel incomplete. Then I may need to go once or twice again in the day and it will be small pebbles. So just all messed up really. I don't have the happy vitality I had before I got ill and it's just miserable Sad. Even antidepressants are not lifting my mood!

Simmi1 · 20/06/2016 06:33

I've tried low FODMAP but didn't work for me

Simmi1 · 20/06/2016 07:11

As regards the colonoscopy I'm from the uk but in Australia now and had it done privately here. I would not have got one on the nhs in the uk as I'm only 40, don't have any bleeding and no unexplained weight loss so no cancer red flags. I guess they would have been right as the colonoscopy didn't show anything! I would definitely recommend sedation although I don't know what type I had - just that it worked a dream. Also the pre prep was not fun but not as bad as I thought it would be so don't be afraid. My colonoscopy was in December and I wasn't terrible impressed with the gastro as he indicated that he would work with me on a treatment plan if the tests came back clear but then he just fobbed me off when they were clear. Then just recently I took my toddler for her usual mini maestros class and my toddlers friend who usually comes with her mum came with her dad as mum was delivering their no.2. Anyway the dad was none other than the gastro who did my colonoscopy - cringe, cringe, cringe. I sat there knowing that I'd discussed my bowel problems with him and then to make matters worse my normally very healthy daughter who never gets ill threw up in class 😳

Dowser · 20/06/2016 09:24

Good news under beneath
I'm glad someone got sorted. Such dreadful stories here.
Yes it is an expensive piece of kit and if the doc won't prescribe it then yes try a kit from the Internet.
If you want sedation, insist on sedation. You're going to be up to high Doh so they might as well make it easier for everyone.
I know that incomplete feeling simmi. My Russian therapist suggested Triphala from Himalayan herbs. If they won't send it to Australia you maybe can get someone in uk to send it to you. It's from some natural Indian fruit. I really resist taking allopathic drugs as I worry about side effects being worse than the actual condition so I do keep some buscopan for emergencies only. This moves things along but I find the Triphala does that anyway a bit more gently.
I just take it at night. I also take my digestion tea at night. This I used to buy from tiger stores. It's name is ginger tea and I think it comes from Denmark. I find it excellent. It's £2 but smaller tigers didn't carry it or they've changed their stock so I makemy own now using their 20 herb recipe.
You should get some fantastic herbal stuff in Australia ( a bit jealous) . If you want to try it I'll write out the recipe.
Mnetters in Cardiff...can you still buy it in tiger. I'm coming down next month so will stock up.( way hay. Haven't been down since last August!)
I buy their kreuterbitter, peppermint mix all good.
Last night I put down 6 herbal tinctures ( took a full litre of vodka). All for digestion, liver etc. all connected. They'll be ready in 4-5 weeks.
I did rose hips, UVA ursi, hyssop that's anti viral, broom , coclearia or rompe piedra that breaks up stones in kidneys, bladder , gall bladder, and I obviously should have put down some ginkgo Biloba as I can't remember the last one lol.

I'll get another bottle of vodka today and I think I'll put down some calming ones tomorrow like pasiflora, hops , valerian etc
If I'm going to have problems I may as well keep calm about them lol

Just think simmi, you can make your own Australian bush remedies. Fantastic.
My DH is amazing. He's just brought me some squeezed lemon in hot water. Since I restarted drinking it I haven't had any grumbling from my gall bladder.Bliss

Hope you all have a pain free day today ladies and all your poos are nice healthy ones ;-)

AMR123456 · 20/06/2016 09:56

Can I join?
I have coeliacs , microscopic colitis & lactose intolerance
Brady the steroids can take a few weeks to take effect. I have a flare up of MC 3-4 times a year. Last being in April I avoided the steroids that time & it settled on its own after about 3 weeks. I don't always get mega bouts of diarrhoea I will go more often 5-6 day the nausea is the worst for me & I have to take anti sickness medication. My gastro consultant is great. Though last time I saw him he's thinking of bringing me in for iron infusion. ShockAnyone had one?

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