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Is this UC?

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Ulcerative Colitis
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Candoolili
New Member
Joined : Mar 2021
Posts : 18
Posted 3/29/2021 8:59 AM (GMT -6)
Obviously nobody here can answer this but would like a little advice.

For approximately 10 years (I’m 35) I have been experiencing what appear to be flares.

During one such flare about 3 years ago I noticed blood on stools so went for the relevant medical tests ( blood and stool ) which came back clear. Symptoms eventually fizzled out.

I appear to be experiencing another such flare at present . Here’s my symptoms-

- flare is precipitated by vile weird smelling farts - like nothing I’d normally experience
- white mucus on stool usually noticed before things really kick off
- blood when wiping and mixed through liquid stool
- 3- 5 bms in morning, often very urgent, I’d be sweating and leaning over the sink!
- mucus and liquid passed with farts during the day (in loo only, no accidents) gas feels like it’s coming from “higher up” in my system if that makes sense!

Can’t identify triggering foods per say, tho having large meals seems to make it worse

I’m of Ashke**** Jewish ancestry (grandmother) which interestingly seems to be a risk factor.

Should I push for more tests? Anyone with UC here had tests come back clear prior to diagnosis? Thanks in advance for help, it’s so hard looking after 2 small kids with this

I’m quite a skeptical person by nature and had written myself off as IBS in the past
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quincy
Elite Member
Joined : May 2003
Posts : 33231
Posted 3/29/2021 9:23 AM (GMT -6)
Ask for a colonoscopy with biopsies. Only way to know.

No blood with IBS.

Blood could be from hemorrhoids or fissures.

Welcome to the forum.
q
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momto2boys
Veteran Member
Joined : Jun 2013
Posts : 2519
Posted 3/29/2021 1:03 PM (GMT -6)
I second the colonoscopy and biopsy suggestion! There is no way to know without doing this test. Your symptoms sound just like what I was experiencing when I was diagnosed, but I could not say for sure if you have UC or not!
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VanJordan
Regular Member
Joined : Dec 2019
Posts : 395
Posted 3/29/2021 1:11 PM (GMT -6)
Vile smell can be anything from malaborption, to infection, to inflammation. Stool tests won't necessarily pick up on everything, unless you get expensive private ones done. The standard ones done by doctors only pick up on a small set of micro-organisms.

Vile gas with urgent BMs, mucous and blood points to bowel inflammation. What kind of inflammation and to what extent, would have to be determined by scope unfortunately.

Definitely get more testing. It can only get worse with time if untreated.
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beave
Veteran Member
Joined : Mar 2007
Posts : 2246
Posted 3/29/2021 4:17 PM (GMT -6)
Before getting a colonoscopy, get blood work including CRP, and get the stool test called fecal calprotectin.

If either or both are elevated, a colonoscopy is definitely warranted next.
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Candoolili
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Joined : Mar 2021
Posts : 18
Posted 4/4/2021 6:59 AM (GMT -6)
Thanks all

Quite a lot of blood this morning which I was quite shaken by. Splashed up on the toilet seat when I flushed Formed stools in among the blood and liquid. Just going once a day now tho, I don’t know if that’s an improvement? A little urgency. Sometimes I feel the need to go, go to the loo and just gas and blood is expelled. Often feels like the stools are propelled out by the gas, there’s quite a lot of gas but it smells normal now.

I hope I will be referred for colonoscopy as have looked at the price to have one privately and it’s way beyond my budget (NHS)!

Will ring the GP on Tuesday. It’s got to the stage I am terrified of looking in the loo, it’s just such a shock seeing all the blood
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17854
Posted 4/4/2021 8:43 AM (GMT -6)
You will need a scope to get a diagnosis. Hopefully, the blood work helps to guide your physicians in that direction so you can figure out what's going on. What you describe does sound like it could be ibd but there's no way to know without pathology results. If you have a scope when you're in remission, there may not be signs of inflammation, so while you're having symptoms is the better time to get scoped for diagnosis. Keep me updated. I am sorry you're experiencing this.

Calprotectin test could be very helpful, and much less invasive but it wont give a firm diagnosis. It could still be very helpful in confirming whether a scope is warranted. You should get standard stool tests too but with this being ongoing and on and off over periods, it sounds more chronic.

Perhaps stool tests and calprotectin are a good starting point but it's likely to lead to a scope or flex sig.
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Candoolili
New Member
Joined : Mar 2021
Posts : 18
Posted 4/14/2021 7:51 AM (GMT -6)
Hi all awaiting feedback from blood and stool work at present. Experiencing quite a bit of mucus now throughout the day which is tinged with blood. Wondering is this typical of UC? Sometimes there’s more of it than others. GP said all my symptoms pointed to inflammation. I don’t have any pain to speak of and feel quite well once the morning has passed.
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nakamura1967
Regular Member
Joined : May 2018
Posts : 162
Posted 4/14/2021 9:39 AM (GMT -6)
Sorry to appear negative but don’t trust the fecal calprotectin test. My son had <50 2/3 times before the camera and being diagnosed. Really need the camera to find out and the biopsies.
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Candoolili
New Member
Joined : Mar 2021
Posts : 18
Posted 4/14/2021 10:03 AM (GMT -6)
Oh really? GP told me that last time I got tested I was <30 for that. I wish I’d pushed for scope at time but was kind of clueless.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1499
Posted 4/14/2021 5:01 PM (GMT -6)
GP should refer you on to a gastroenterologist for a diagnosis. It could be crohns or colitis, you'd need a scope to get a better idea which it is, if either..
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momto2boys
Veteran Member
Joined : Jun 2013
Posts : 2519
Posted 4/15/2021 1:26 PM (GMT -6)
Sounds like you need a scope with biopsies to rule things out. I had all of your symptoms for months before things escalated and I ended up getting scoped and diagnosed with UC.
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UCyousee
Regular Member
Joined : Feb 2014
Posts : 469
Posted 4/18/2021 10:44 AM (GMT -6)
Candoolili, I echo what the previous posters have said - IBS isn't normally associated with blood (or weight loss), so I'd agree that your GP needs to refer you to a gastroenterologist, who will arrange a sigmoidoscopy or colonoscopy to have a look, and take biopsies.

Don't let your GP fob you off - get a referral to a gastroenterologist as that's the only way you'll find out if you have an IBD or not.

The thing with other non-invasive tests is that some work for some of us while others don't. While Nakamura's experience is that the calprotectin test is unreliable, I find it extremely useful because inflammatory marker blood tests (ESR, CRP) don't show the severity of my disease. My ESR never goes out of range, and CRP barely elevates, even when I'm about to have my bowel removed.

Bottom line, you need a gastro to diagnose you.

Good luck!
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Guigsy
Regular Member
Joined : Jul 2020
Posts : 41
Posted 4/18/2021 3:43 PM (GMT -6)
I’ve had inflammatory marker tests come back as normal even when I’ve got flare symptoms. Demand a visit with a gastroenterologist. Write down all the detail so you don’t forget anything and mention it all at your appointment. Push for a colonoscopy with biopsies. Once you get results, you’d be well-served to come back here and ask for advice from experienced people. They’ve helped me in that regard as much as my doctors. Be strong!
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New577
New Member
Joined : Apr 2021
Posts : 15
Posted 4/19/2021 9:12 AM (GMT -6)
I agree with everyone. I was a lifetime IBS sufferer, then 20 years ago the blood and mucous started.
Colonoscopies prior to 20 years ago showed no IBD, but after, the the biopsies from the scopes showed definite ulcerative colitis.
When you are under 50 years old, insurance will pay for a scope if you have evidence of blood.
Don’t screw around with this problem. Get in front of it and confront and treat it.
But first you must have a definite diagnosis that can only be confirmed with a colonoscopy and biopsy.
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Candoolili
New Member
Joined : Mar 2021
Posts : 18
Posted 4/20/2021 2:11 AM (GMT -6)
Thanks everyone for your replies. This is such a wonderful forum and has already made me feel less anxious about an embarrassing and scary issue!

Doctor has phoned me with FC results. Apparently they are at 600 so she has referred me to gastroenterology. She told me there are long waiting lists but felt I wasn’t “urgent” and assured me not to worry. I said I could pay private if I was “in danger” and she felt I wasn’t. Blood results not in yet. Opinions on this outcome welcome! Especially from fellow NHS patients.
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UCyousee
Regular Member
Joined : Feb 2014
Posts : 469
Posted 4/20/2021 2:42 AM (GMT -6)
Candoolili it's so unfortunate that there's a backlog in gastroenterology and endoscopy in the NHS due to the pandemic. If it wasn't for Covid I'd say 'make sure you get referred within 6 weeks at the latest' because if you do have an IBD you're currently not being treated.

If your symptoms worsen (eg bowel frequency, particularly if going at night, blood, mucus increase, increased pain) then insist on being prioritised.

If your bowel frequency and pain is high and you can't cope you can go to A&E (only you can decide when this threshold has been crossed - for me it's about 20 bms day and night, a lot of pain, extreme urgency, but I've read about ppl that stay home with 40 bms, and others that would go to A&E earlier than I do - usually it's my gastro team pushing me to go and me refusing). If this does happen tell the A&E Dr you need to speak to a gastro.

It may be useful for you to chart your bowel movements - put a pen and paper in your bathroom - as the gastro will ask about frequency, and it'll give you a clearer picture of whether you're getting better or worse. You may also want to become familiar with the Bristol stool chart and score the consistency, and amount of blood and pus. If you're starting to heal your bms will start to form.

Whatever the diagnosis I hope you get the help you need to heal.

Post Edited (UCyousee) : 4/20/2021 1:09:35 PM (GMT-6)

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UCyousee
Regular Member
Joined : Feb 2014
Posts : 469
Posted 4/20/2021 2:45 AM (GMT -6)
Re. charting bowel movements I find it useful to note the times down so I can spot gaps and periods of high activity. If I regularly have a 3 hour gap between 2 pm and 5pm for example I know it's a good time to venture out!
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1499
Posted 4/20/2021 3:00 AM (GMT -6)
I no longer use the NHS (am living outside the UK) but my sisters with crohns do, so I know how it works... if you get to the point where the symptoms are significantly impacting your life then you need to insist it's an emergency and they will see you within a couple of days. I'm abroad but fwiw I was sent to a gastroenterologist the same day when I presented at the GP with 20 bloody bowel movements in a day. However my symptoms had gone from 0 to 100 in a couple of weeks. Good luck!!!
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Candoolili
New Member
Joined : Mar 2021
Posts : 18
Posted 4/20/2021 3:45 AM (GMT -6)
Thanks all this is really useful info and will definitely start charting and recording (and looking every time I go) 😭
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1361
Posted 4/21/2021 9:20 AM (GMT -6)
Welcome to the “Leaning Over Toilet to Inspect Poo” club!

😂😂😂
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Candoolili
New Member
Joined : Mar 2021
Posts : 18
Posted 4/24/2021 3:38 AM (GMT -6)
Haha! Thanks flowersgal. There’s something so frightening about knowing there’s something going on in there but not being able to see what! Bloods came back “borderline” elevated CRP, possibly the inflammation doing that, the kidney thingy was borderline too so I’ve a repeat in a months time.

Thanks again lovely people for your expertise and encouragement 😀 hopefully I’ll be back here with some sort of a diagnosis 😀
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TroubledTurds
Veteran Member
Joined : Jan 2004
Posts : 8705
Posted 4/24/2021 5:33 AM (GMT -6)
ya, i agree it's pretty unsettling when your body is assaulting you without provocation or prior consent - and being so elusive as to it's plan -

while you are waiting further medical help, you might look at your diet and lifestyle as possible aids in combatting this - a specific diet for everyone is non-existent, but some folks find keeping a log/journal helps to identify certain aggravators, which can then be avoided - getting plenty of sleep, staying hydrated, and minimizing stressors are a good start in helping your body fight this -

hang in there -

TT
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Candoolili
New Member
Joined : Mar 2021
Posts : 18
Posted 5/6/2021 12:58 AM (GMT -6)
So just an update- I managed to get referred for urgent colonoscopy which is occurring in just over a weeks time! Symptoms are fizzling slightly but still getting bloody blobs and a bit of urgency. Almost hoping it continues so the scope can shed some light on it! Any “prep” tips welcome. Am breastfeeding my little one which is a bit of a pain 🙂 luckily he will take a bottle for when I’m gone
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UCyousee
Regular Member
Joined : Feb 2014
Posts : 469
Posted 5/6/2021 2:41 AM (GMT -6)

Candoolili said...
So just an update- I managed to get referred for urgent colonoscopy which is occurring in just over a weeks time! Symptoms are fizzling slightly but still getting bloody blobs and a bit of urgency. Almost hoping it continues so the scope can shed some light on it! Any “prep” tips welcome. Am breastfeeding my little one which is a bit of a pain 🙂 luckily he will take a bottle for when I’m gone

That's great news that you're being seen soon.

Once the prep starts doing its job you probably won't be able to move far from the toilet while it's at its most active, so I hope you'll have someone else around to look after your baby at that point!

It's a good idea to have some flushable toilet wipes and some soothing cream to hand because the yellow liquid that comes out starts to sting like hell fire after a few bowel movements!

Other than that, follow the instructions carefully including the diet, in order to have a successful prep, and clean colon (although one of the preps didn't work very well for me, so it's not the end of the world if it's not a fully successful prep).

Good luck with it!
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