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

[MrsBrady]

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

Me me!!
I'm 48 and have had IBS and milk intolerance since I was 17. Nowadays though it's every day, usually more than once. I literally live on Imodium or the supermarket equivalent. Now I'm wondering whether it could be crohns.

It stopped while I was pregnant with DC2 then started again when he was born. And last year I gave up sugar in my coffee for a month, again this really helped (didn't realise at the time!) but like the poster earlier, bread and pasta do me in, eating pasta makes me feel sick too.

I'm not depressed or anything but I did tell my DH that if I make it to old age id rather do myself in than have someone clean up after me.

Can I join??
I have about 30% of a working sphincter and nerve damage due to a childhood operation for a birth defect. The main indicator that I need to go is stomach cramps but because of the sphincter damage, I can't hold it. This is coupled with almost constant upset stomach. I think they may be unrelated (I suspect I have ibs) but because of the physical damage, I've not bothered going to the dr (they said only come in if I couldn't manage).

I found that I was a new woman when I came off of hormonal contraception. But it seems to be getting worse again. After taking Imodium for years, it began to stop working but after a break from it for 2 children it's a bit more effective than it was again.

Poo accidents don't bother me so much anymore as I've had them my whole life. I carry spare underwear, pads and wipes with me everywhere and have a very understanding husband.

Well it's heartening to know that we are not alone but sad that so many of us are having these problems. I was having diarrhoea several times a day especially in the morning along with pain/discomfort most of the day. Now I generally only have to go once after breakfast and the stools are mostly normal. However I always have some sort of pain discomfort during the day - be it stomach cramps, excess gas or something. It's not so dibilitating now so I can get out and about as normal but it's annoying and frustrating. Up until these IBS symptoms started 9 months ago I'd never suffered anything more than a cold so am finding this really hard to deal with mentally. I would do anything/pay anything to have my health back 😥

MrsBrady, I haven't had a stool test - maybe when I get in front of a GI consultant they'll do one.

Kitty - funny that yours stopped when pg - mine got worse and instead of morning sickness I had morning diarrhoea.

Mine's not terrible, but it does mean that I take rather more days off than my employer likes, so I want an actual diagnosis, iyswim. Either that or I struggle in feeling terrible and don't concentrate all day anyway.

You should not be taking any form of anti diarrhoea medicine if UC is even suspected. Big no no. Im a Crohns patient and have been diagnosed for over 25 years. First thing i do when I'm flaring is switch to the low residue diet. Google will tell you all about it. What sort of poo are you having? Pure water? Floaty mush or mucus and blood? Sorry for directness but as an IBD patient you become very au fait with bowel habits. Have you had a colonoscopy yet?

fucksake wrote reaally long post and it got lost

Kitty have you been tested for coeliac disease? Sorry if you said upthread- my laptop and phone awful slooooooow today. I echo your bit about not wanting someone to clear up after me

it's such a shitter

and Simmi this: I would do anything/pay anything to have my health back with knobs on. If I got in front of a gastro consultant and they told me to live on lard and get up at 4 every morning I'd do it

fucksake wrote reaally long post and it got lost

Kitty have you been tested for coeliac disease? Sorry if you said upthread- my laptop and phone awful slooooooow today. I echo your bit about not wanting someone to clear up after me

it's such a shitter

and Simmi this: I would do anything/pay anything to have my health back with knobs on. If I got in front of a gastro consultant and they told me to live on lard and get up at 4 every morning I'd do it

AlfieBear you sound super brave. Every time sometimes when I shit myself I've been known to cry a bit. I'm fifty ffs.

Can I ask what pads you use? I take spare clothes etc when I go out but the pads I use aren't all that handy- just massive sanitary pads/tena lady sort of stylee. My GP is fabulous and really has my back from a distance if she's sensible but is a bit vague on the poo incontinence

fanjo I've tried low residue, diy approximation of FODMAP, normal eating over course of last 6 months with no obvious change/benefit. Think I have to hit right combo of drugs/food, but I really need a gastro/dietitian to guide I think. I just need to get onto the system

As for immodium/supermarket equiv- I emailed a consultant a while ago and she said no reason not to, but think that's cos my latest diagnosis is microscopic colitis so she's working on that basis- but, because I have blood/mucus more often than not, and my poo is loose but not watery I'm thinking uc. No hint from any medical prof of that- just me and Dr Google

aaaaargh

Anyhoo- I've done the odd (twice a week) immodium just out of desperation but haven't taken any for over a week as I'm very wary of it- for the reasons you've given

Im bowel incontinent too. I use these and get them from the district nursing team at my gp's.
www.incontinencechoice.co.uk/shopbybrand/id-expert-incontinence-products.html

With regards to the dietician, they will advise you to eat more protein, less carbs, and definitely will talk you through the low residue diet. They very much tell you that ibd is not food intolerance (i know you know this) and will get you to keep a food diary to rule out any intolerances you may have as well as the ibd. What meds are you on if you dont mind me asking?
And lastly, mucus and blood are my main presenting symptoms when im having a flare that involves my lower bowel/rectum.

thanks fanjo

how'd you find living with Crohns? And how do you cope with incontinence without crying if you don't mind me asking?

I've been on a low dose of asacol (melasazazazine ) since I got the microscopic colitis dx this time last year. I wasn't showing any symptoms at the time, so it at least seemed to work- till January this year. The GP talked to her contact at the hospital and they suggested putting me on budesonide instead and I've been on that for the last two weeks- no obvious change yet tho

she's trying to get me seen at the hospital sooner (other GP made a fuss and managed to get me an appointment, but not till August gah) and am guessing will need another colonoscopy- last one was this time last year which was when the MC was diagnosed.

Youre welcome OP. Living with Crohn's is to be honest hell. I was in hospital 74 days last year and so far 13 this year. Crohn's affects more than your bowels and i have terrible joint problems, inflamed eyes and wicked mouth ulcers too. I'm having chemotherapy now to suppress my immune system as I've been 5 years straight flaring and I've honestly had enough. One thing you could try is asking to switch from oral mesalazine to the asacol rectal foam. This really helps me with my mucus and blood issues. Im surprised they haven't given you a low dose of prednisolone yet. Thats usually the first option when bleeding ect. Feel free to ask me anything you like, I hope you get some answers really soon.

Sorry I didn't answer the question about incontinence. It has been very very isolating really. I hardly go out these days. I have a radar key and a toilet urgency card both of which you can get from the crohns and colitis association, which help quite a lot. Ive used bathrooms literally everywhere! Yes i use incontinence products but you still have the smell issue even if its not running down your legs if you see what i mean. Im seeing a surgeon soon to discuss options around incontinence surgery as living like this is really no life.

Hi all, can I sneak in here please?

I've just started DD down the road of samples, blood tests and whatnot with the GP.

She only three but once a week she's getting horrid stomach cramps and diarrhoea, which necessitate half an hour on the loo. It's something which has snuck up on me a bit and it was only when it started affecting days out that I really thought to keep tabs on it.

I've taken four different samples to the doctors and we've got an appointment next week for a blood test. Can you tell me what they'd be able to see by blood testing? I was a bit surprised by that and wonder if it's anything to do with the sample results having come back (we've not heard anything back yet about the samples)

Anyway DD is mid height and weight, otherwise completely healthy, eats anything and everything. If it's an allergy then it seems weird that she eats the same stuff all the time but isn't constantly ill? Bread, pasta, gluten, dairy, she's always eaten all of it but I wonder why it's only got worse now?

She was always a gassy baby (could clear a room at days old!) and poos like a 40 year old man rather than a toddler.... Is that any sign of anything?

Sorry for all the questions, I'm just clueless about it. Oh I've been keeping a food diary too for a week or so.

Thanks and wishing good health to everyone....

God fanjo that's so hard

(I was sort of waiting for you to say that the research had caught up with the condition a bit and that you'd been in remission for the last ten years)

flaring for five years

I've only had 6 months of it (which really only involves the D, blood and stuff, no real pain) and I'm up the fucking wall. It's like you say, it's isolating. I keep thinking I'll make the best of being stuck at home but, feeling lousy, painting skirting boards is the last thing I feel like doing

I really hope you get the answers you want from the surgeon (at any rate, the least worst option). Do you know how long you'll have to wait to see him/her?

Thank you for taking the time to post.

What's your diet like? Do you eat a lot of carbs?

I was diagnosed with IBS and suffered on and off for years (not as badly as you're suffering though, I have to say)

When I started low carbing, because I wanted to lose weight, my IBS symptoms completely disappeared.

I realise that you may have a rather more serious condition, but it's definitely worth having a go at cutting right back on carbs - especially bread/pasta/flour/sugar.

PoonamiMum poor little mite. And poor you!

Have they told you what they're testing for? Afaik they do poo tests for infection and also for inflammation- not sure what else. My gps do blood tests for fun all the time- I think it's a sort of belt and braces/just in case approach

don't envy you taking a 3yo for blood tests

poonami Mum great name from blood tests they will be able to see her inflammation markers, its a quick way to tell if they need to go down the route of urgent gastro referral for more detailed testing. They will probably do you a referral anyway but to be quite honest i have no experience of peads gastro so do not know what tests they do or dont do on little ones. Is your dc having any mucus or blood at all in her poo?
mrs brady I'm seeing them again in July. I had to have lots of tests (Mri, Ct scan with contrast dye bowel fuction tests) but they are all done so hopefully they will have a plan for me when I next see them.

thanks BIWI

I do gluten free carbs atm- I'm coeliac

over the last few months I've tried mostly protein/light on carbs, also heavier on carbs, for bulk

neither have made any noticeable difference

GP has advised not to restrict diet (bc coeliac it's already a bit restricted) further for now till I manage to see the consultant, but I'm getting to the stage where I'll try ANYthing. I'm thinking what I don't eat, I can't poo! I want to go OOOOOUUUUUT

Even nippng to Sainsbos is a will I/won't I adventure at the minute

Dust?

Thanks for the welcome.

The doctor said they would see if there's any blood in her stool samples. I haven't noticed blood or mucus in the toilet though. And in having to take four different samples I've been fishing about in there a lot recently!

I'm hanging back on dietary changes as yet partly because I want the doctor to get a full picture and partly because cutting out entire food groups is a pain in the ass (no pun intended) for what is sometimes half an hours discomfort over the course of three weeks.

My brother has had endless gut trouble his whole life though and never really got to grips with it. I just want to make sure if it is something that it's sorted out from day one so she knows and can manage it.

Yes, I'm not looking forward to her giving blood (sorry can't name check on tablet). I'll have to get in lots of chocolate that day and hope it doesn't cause a poonami

I'm a bit shocked to be honest hearing people's stories of what they have to live with. I had no idea

I use maxi goodnight Bodyform with wings (the biggest one they do) so nothing specialist. I'll have a look at that link from fanjo though.

Have any of you got a radar key for locked toilets? I've heard that I'd be entitled to one but haven't got round to getting one as I've always planned my days around toilets so have been OK mostly.

PoonamiMum just to say, a low carb diet isn't about cutting out carbs. You get your carbs from vegetables and salad. And you can get plenty of them that way!

hi can I join too? ive had problems with bowels for 3 years now but due to having poorly twins I have only just got round to sorting it. seen consultant who ordered bloods, a look up the rear end (cant remember what its called?) and they found inflammation and ive had the capsule and scans for the new bad (no results from that yet).
I have bleeding but they aren't sure whther that's from the bowel or the horrendous piles I now have.
I'm really struggling to care for 2 disabled children on top of having to spend hours on the toilet. I eat very little as I'm so worried about it coming out and yet my weight in the last 3 years has rocketed - I now weigh more than I did when pregnant with twins!
the chap doing my camera said he could see inflammation and he was sure the consultant would be able to medicate and make it better but he wouldn't be drawn on what he thought it was - any ideas?

Oh ok thanks for the heads up BIWI

I've just managed to get the last poo sample thank goodness so I can drop them off tomorrow at the doctor.

Put them in my handbag and took out a Bounty I had in there. Don't think I'd fancy the bounty much tomorrow knowing its shared my handbag with a bag of poo for 12 hours

BIWI do you mean do it, or eat it

Alfie I've not got a radar key because only microscopic colitis

I imagine some sort of ceremony when you get one in the toilets at charing cross station: you get handed a golden box of babywipes and a pocket sized glade pine and the key is on a pillow of andrex