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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:
Scarydinosaurs · 07/07/2016 12:27

big that's ok! I know what you mean!

Have you ever had a colonoscopy with biopsies taken? If it's only liquid poo, no blood or mucus, I wonder if that's why they haven't done more? Not to downplay liquid poo- that is rank and horrid in itself.

JeepersMcoy · 07/07/2016 13:15

That sounds like a lovely dinner panda! Are you not cutting out the dairy? You lucky thing :)

Oddly, and this is probably more information than anyone needs, I get constipation with all high fodmap foods except dairy, which sends me running to the loo within 20 minutes. Lactose just seems to hit me in a completely different way to all my other triggers.

bigarse1 · 07/07/2016 13:33

scary - I had a sigmoidoscopy and that showed inflammation but they couldn't see anything else. biopsies said all they showed were 'normal procedure changes'? I have mucous sometimes and blood but I thought that was from the piles? started new meds yesterday and I know it will take a while to sort out correct dose but I'm worse today than yesterday and have gone more than 10 times already. have had to keep the little ones at home today except for school run for the elder cos I just cant seem to get away from the toilet. only difference meds have made is to make me feel sick

Scarydinosaurs · 07/07/2016 14:43

How long ago was your sigmoidoscopy? I first had a sigmoidoscopy and then a colonoscopy and from those they diagnosed the ulcerative colitis because they could see the ulcers? It is my ulcers that bleed- I actually only have heameroids after a flare or after childbirth!

Do you have consultant care? Are you able to have an appointment with them?

bigarse1 · 07/07/2016 15:02

it was in may. due to see surgeon in 2 weeks but I think that's about the piles. consultant I will see apparently in aug but no appointment yet? ive rung and told them I'm going 20 plus times a day and needed to see them and got told that I have an appointment and that's the first they have. then they saw the sehcat scan and pooped themselves and got me on meds but still no appointment

Scarydinosaurs · 07/07/2016 15:29

I think if it was that recent then that would be an accurate diagnosis?? But I'm only guessing- maybe once the piles are gone your sphincter control and digestion will improve and you will go less frequently?

bigarse1 · 07/07/2016 16:08

consultant hasn't really given a diagnosis other than to say it was positive for the bile acid and that he will discuss when he sees me next what that means and whether its just that or that and something else.
I don't want the piles sorted until the diarrhea is under control as just the thought makes me cringe! if I'm still going 20 odd times a day I cant really see how they can do anything as it would be too sore? will see what surgeon says

WhyASpoon · 07/07/2016 16:16

I might have found my people...can I ask for advice or suggestions?

My background (as brief as I can): after a fair few abdo surgeries I started getting lower abdo pain during ovulation mostly, and had a tentative endo dx. Didn't look further as I got pregnant and symptoms went. After a further complicated CS where there was a lot of scar tissue attaching everything together (and tearing my bladder...!) I have the symptoms back again, only worse.

I now have, from ovulation to period, lower abdo pain (mostly right side and not constant but very bad and stabby when it occurs), swollen belly, tenderness around my external scar area, constipation, wind (often smelly...sorry for tmi), etc. The Dr has basically said that its hormonally reactive scar tissue and said to treat the symptoms as all the other hormonal treatments are not ideal, so I have strong version of ibuprofen and a laxative that doesn't help.

I am panicking today that it's some sort of bowel obstruction caused by swelling scar tissue, and that its serious. (As added background, a child in my daughters class recently died of chronic constipation causing bowel perforation and sepsis - I think that was it - so it's worrying me more than it perhaps would otherwise). A friend that I told thinks I'm being daft and to step away from Google.

Regardless, I cannot deal with feeling like this. I feel "normal" for essentially one week in a month, and I don't know what to do.

Thank you for reading. Advice gratefully received.

Scarydinosaurs · 07/07/2016 17:52

big please don't be worried about the cringe! I found once my piles went, my stool control returned. I did have horrific ones post birth, so it may be different for you, but please never worry about the cringe! They've always always had worse!

spoon are you under GP or consultant care? Are you being seen by a gyne or gastro?

WhyASpoon · 07/07/2016 18:15

Currently just the GP. Her thinking is that it's just scar tissue swelling when my progesterone is high. And there's nothing that can be done (there's not really been any consideration of the gastro side of things other than a prescription for laxative).

Scarydinosaurs · 07/07/2016 18:34

If I were you, I would return and request a referral. I think to say there is nothing that can be done is a little negligent if you only have one 'normal' week in four- surely you can expect better than that??

bigarse1 · 07/07/2016 19:00

scary - didn't mean cringe as in them seeing them, have had lots of children and different ops and everyone has seen everything lol! I meant the thought of them either banding/injecting or whatever they do whilst having diarrhea just makes me think it would be so sore?

Scarydinosaurs · 07/07/2016 19:11

Ahhhh! I see! That makes sense. No- really, I have had banding during dreadful flares and really doesn't make a difference. Try and find other people who have had the same? I really didn't find it sore- or any more sore than it already is!

WhyASpoon · 07/07/2016 19:38

Scary thank you. I've been wondering if I am wasting their time or being a hypochondriac but yes, one out of four (one of the other three is period week so there's a reason for that I guess) isn't a great ratio.

bigarse1 · 07/07/2016 19:42

scary - thanks for that. I have it in my head that it would be horrendous but u cant exactly discuss piles and diarrhea with everyone lol!

bigarse1 · 07/07/2016 19:43

gp has organised more meds. so now on 3 for reflux, the new meds for bam and whatever it is she has prescribed. the little ones are on tons of meds so we now have 2 cupboards of meds

Scarydinosaurs · 07/07/2016 21:34

big I had mine done when I was very young and with no warning! I had been in for a private consultant appointment, and he literally whipped out the banding thingy and set to it Shock. I think I was 18 at the time. But it did make it much better, so I won't hold it against him!

I hope your appointment comes quickly, and you find it helps.

Scarydinosaurs · 07/07/2016 21:53

So, eavesdropping on this ward- two other patients are also here because of IBD related things- that have come in as emergencies! It's scaring me. They're about ten years older than me, and have been in the middle of awful flares and have collapsed/become infected.

They're talking about their mismanagement of their condition and how that led to the flare. It is motivating me to really allow myself to get better and try and get better.

ShortyShortLegs · 08/07/2016 00:01

WhyASpoon - no advice, but I also have scar swelling. I'd never heard of it before. I had two c-sections and two hernia repairs all on the same scar, also lots of adhesions and some mesh left behind from a failed hernia repair. The whole thing swells up when my period is due and also if I have been standing up/hoovered/etc. and is bloody painful. I also have muscle and nerve damage which causes stabby pain, stinging, aching etc.
The pain clinic prescribed Versatis Plasters (which are lidocaine) to stick on and numb the scar. And I did have Lyrica (pregablin) tablets for nerve pain, but I couldn't tolerate them as they made me too sleepy to function, and I was terrified I'd over dose the children on their medicines!
So I take co-codamol for the pain now.

Original poster
MrsBrady · 08/07/2016 09:31

Scary re eavesdropping

From where I'm sitting on the toilet FOR A CHANGE that looks like there's a major fault in the system- gastro clinics so under-resourced and over subscribed people have to wait so long for appointments that they end up as emergency admissions?

That's insane Shock

It must work out far more £££s in long run, dealing with crises rather than controlling conditions in the first place

Fucking tories

OP posts:
Scarydinosaurs · 08/07/2016 10:23

It is isn't it! To be fair- both women were berating themselves for ignoring symptoms and trying to continue as normal, so I feel very pleased that I sought help early on- however, did I only do that because I knew I was pregnant and didn't want further complications? How often do we just go- oh sod it, and carry on making do?

I'm really lucky that now I'm in the system they're keeping a close eye on me and my consultant plus IBD nurse team are fantastic, but I feel I am lucky and this isn't the norm.

lovesmycake · 08/07/2016 12:36

This reply has been deleted

Message withdrawn at poster's request.

Scarydinosaurs · 09/07/2016 19:27

And I'm out! That was a long six days. I have a huge bag of medication and the beginnings of normal digestion again. Thank goodness!

Has anyone else been on steroids for a long period? I've got a six week prescription slowly weaning me off- I feel very shakey on them and when they were testing my blood sugar it was all over the place. Something else to worry about or just the norm?

bigarse1 · 09/07/2016 19:35

I'm glad ur out!!!
I had long term steroids when I was pregnant but that was for sickness (nothing bowel related). all I remember is that they stressed how u have to wean off

lovesmycake · 09/07/2016 21:47

Glad your out of hospital it must be a relief to get home. I had the steroids long term. They made me jittery, I had trouble sleeping and I was super hungry but a couple of weeks after I had started weaning down the symptoms started disappearing.