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Original poster

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:
DonnaMurray1 · 29/06/2016 03:52

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howcomes · 29/06/2016 04:25

sorry I haven't read the whole thread but I had awful ibs for 2 + years after a bout of food poisoning. It was hellish as I lost so much weight and felt miserable Nothing seemed to work until finally I cut out all gluten - within a couple of days I felt back to normal. After a year I tentatively introduced gluten back into my diet and fingers crossed I still feel fine. The year off gluten was hard though, I really missed regular bread and pasta but it was doable and totally worth it now. There are a lot more gluten free options about now which helps.

Original poster
MrsBrady · 29/06/2016 10:37

fireandicecubes I can't believe there's SO much regional variation wrt times Shock -glad you're doing well!

fanjolamps how're you doing, any developments? Sadly I'm not at St George's, am shilly shallying between King's and Lewisham, whichever is the soonest...Lewisham had an IBD nurse I was supposed to see, but they've left and the post is unfilled

I don't blame the hospital, I think they're trying to do an awful lot- serving a huuuge urban population- with not very much in the way of resources

it suuuucks. And I bet it'll get worse [pessimist face]

OP posts:
Original poster
MrsBrady · 29/06/2016 10:41

howcomes I got diagnosed with coeliac disease 6ish years ago- it's SO much easier now than it was. The choice and quality of stuff available has improved massively in a relatively short time

ere can anyone tell me about proctitis? I'd never heard of it till I saw dawndonnaagain mention it upthread- sorry, missed first time

me and Dr Google have decided that's what I've got

OP posts:
MrsPnut · 29/06/2016 15:08

Proctitis is where only the rectum is affected, usually with UC. There is Pan colitis where the whole colon is affected which is what I have a diagnosis of or there is Sigmoid where the rectum and very end of the colon affected and Left side which affects up to the bend where the spleen is.

fanjolamps · 29/06/2016 17:09

Yes proctitis is just the fancy name for inflammation localised to the rectum.

indyandlara · 29/06/2016 19:28

I have IBS and have had UTI symptoms but only infections actually there twice, for 8 months now. 3 weeks ago my GP decided that my bladder is irritated by my IBS spasms. I have been prescribed Vesicare and so far so much better!

Simmi1 · 29/06/2016 23:23

That's interesting indyandlara. I think I may have found the culprit for my Uti symptoms. I decided to try some Chinese herbs from a reputable Chinese doctor to treat my IBS. While taking them my bowel symptoms greatly improved but I also got uti symptoms. Just goes to show herbs are not always safe and can react with other stuff. I'm also on 50mg a day of amitriptyline for the IBS. Anyway I came off the herbs and UTI symptoms disappeared. Expecting bowel symptoms may now come back. I've never actually had a Uti and hoping it stays that way!

Original poster
MrsBrady · 30/06/2016 09:36

MrsPnut how are you doing atm? Are you still managing work? Hope a bit better. Pan colitis sounds pretty fucking challenging

I googled the symptoms for proctitis and it all fits- it would account for the blood and snot, which doesn't fit with my microscopic colitis dx.

also I found one source that says it's a relatively minor condition compared with UC. I don't get pain, cramps, sickness and awfulness like a lot of you. Mine is quite literally just a pita. Though I was a bit how very DARE you about one thing I read that said it was mainly to do with STDs

maybe the predniswhatsit will twat it before I get to see the consultant. Crossing fingers everyone starts feeling a bit better today

Flowers
OP posts:
MrsPnut · 30/06/2016 17:56

I'm still working, and organising the school summer fair for tomorrow and doing the accounts for another organisation I'm involved with.
I can just about cope, after tomorrow things will get easier and I can concentrate more on getting well again.

There is a lot of poo talk in my office, and even more at the moment with my flare up! All we need now is a tally chart for how many visits I need to make to the loo.
All of the UC and Crohns types have blood and mucus as symptoms, that is what differentiates them from IBS.

Original poster
MrsBrady · 30/06/2016 18:07

blimey! good that it's going to ease up a bit

sounds like you have understanding colleagues!

I know uc and Crohns have blood and mucus, which is why I was a bit alarmed as microscopic colitis isn't supposed to have either, just watery diarrhoea

since I've got the whole set, I guessed I must have one or tother, but my symptoms arent that severe, just ever present and profoundly fucking annoying

OP posts:
JeepersMcoy · 30/06/2016 18:15

Gah. I was feeling sort of ok but I have just had dinner and now feel crap. I am starting to think I might need to go back to the gp as I am starting to just get pain pretty much ever evening no matter what I eat and how strict I am with the low fodmap. It isn't as bad as it was before I started on the diet but it sort of feels like it is creeping back. My next dietician appointment until mid-septempber so not much help there.

I think I'll give it another week or so and see if it is just a blip. I am assuming that the next step would be a colonoscopy and you guys have really put me off the idea to be honest Wink

GingerIvy · 30/06/2016 18:27

I'd like to join in. I've got diverticular disease. Diagnosis was fast as out of nowhere I had a bowel perforation and sepsis and landed in hospital for 2 weeks on IVs. I've had a bowel perforation and sepsis three times in the last 12 years. I'm currently living on a very low fibre diet, and slowly slowly trying to increase it, backing off the moment it seems too much and I start feeling crampy. I have to pay attention to what I'm eating and how my body feels so that if there's an inflammation, I can drop back to clear liquids for a few days to let my bowel rest a bit. Otherwise the next step is antibiotics.

JeepersMcoy · 02/07/2016 15:26

Hello ginger. It seems to have gone all quite on here all of a sudden. I hope everyone is alright.

I ate out at lunch, got gluten free bread, but forgot to ask for no butter. Half hour later had to make an emergency loo stop with dd in tow. There is nothing quite like the voice of a 4 year old saying 'thats is not a happy poo mummy! That poo smells so stinky it is hurting my nose!' to carry across a crowded public toilet. Blush

bigarse1 · 02/07/2016 17:11

ive posted several times but never get a response. ive been diagnosed with bam today and will see consultant to see if he thinks its stand along or connected with anything else like ibd or crohns

MrsPnut · 02/07/2016 17:40

Bigarse, what is BAM? and have you had a colonoscopy?

Jeepers, the procedure isn't so bad and if it produces a diagnosis and meds that can help then it has to be a positive.

bigarse1 · 02/07/2016 18:52

it stands for bile acid malabsorption.
I had a sigmoidoscopy and a sehcat scan

MrsPnut · 02/07/2016 19:01

Ah, I know it as bile salt malabsorption and that's what my consultant tried to pin on me before I had a colonoscopy and he saw all the ulceration.

bigarse1 · 02/07/2016 19:45

I had the capsule, scan and then scan a week later. that week and the week after I couldn't move off the toilet and they've just got the results back and said it shows I have it? consultant has written to gp and asked them to start me on meds next week. then I see the consultant sometime in aug to discuss how ive been and to discuss whether anything else is going on.
the sigmoidoscopy showed inflammation.
the way ive been feeling lately ive not wanted to eat as everything goes straight through. ive considered asking to be put on a liquid only diet but don't know if they would agree?
how r u doing?

MrsPnut · 02/07/2016 20:01

That sounds rubbish, I was given some meds straight away by my consultant and then changed after the colonoscopy.
I'm getting by, one foot in front of the other. I have steroid insomnia and was up at 4:45 this morning. I also have a very sore bottom which is probably the worst side effect. I get through a lot of sudocrem :D

bigarse1 · 02/07/2016 20:10

I rang them last week literally begging to be seen as I was going 20 plus times a day. they said they would sort something and get back to me. they didn't so I left it 10 days and rang again. said I hadn't had my scan results and she said she would look into it. within an hour she rang back, said she couldn't give results over the phone but that consultant had seen scan report, dictated letter, they had typed letter and posted to me and gp. she kept saying that I must make sure to see gp first thing mon morning (wont be able to get an appointment) and that I would get a copy of the letter. letter came today.
I have 3rd degree haemorrhoids which he has referred me to surgery about but I couldn't even consider having surgery for them all the time my stomach is like it is as surely it would get infected?
I have two poorly children so only get between 2 and 3 hours sleep a night and that's broken so I need as much energy as I can get. I'm hoping this helps, although I wouldn't be surprised if something else was going on too. it would be nice to loose some weight!!!

Naughtytummy · 02/07/2016 20:13

I posted at the start of thread about my diagnosis of BAM.
I didn't have any tests for it just the medication for three weeks and then the medication was stopped and it all returned, so that was confirmation of the diagnosis.
It's a lot better with the medication but I still have a limited diet and if I try to add something new I go back to frequent visits to the toilet.
I am now waiting for a dietician apt for further advice.

bigarse1 · 02/07/2016 20:17

do u know if u get to see a dietician automatically with that diagnosis? which meds are u on? if u don't mind me asking

Naughtytummy · 02/07/2016 20:34

The dietician referral was done before the diagnosis of BAM to look at starting the fodmap diet.
I take colesevalm tablets one tablet before meals to absorb the bile when eating and so stop the excess bile being excreted as diarrhoea.
With these meds I have gone from taking loperamide nearly every day to only taking them about once a week and that's more to give me confidence if going far from home.
If I can help ask away Smile

Simmi1 · 03/07/2016 01:30

Oh bigarse, hope you get a resolution soon - that doesn't sound fun. Do you have anyone who can help with the kids? I'm an IBS sufferer - so don't know much about bam. I have tried low fodmap though - it didn't work for me but it's not that hard and there's loads of information online. The worst fodmap offenders are onion, garlic, wheat, apples and pears.