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Ulcerative Colitis
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Posted 5/7/2021 3:48 AM (GMT 0)
I’ve learned it’s best to not wait for said sore behind to start using the wipes and cream (and if you’re using butt paste on baby — be advised it burns like hell on me! Desiten or calmoseptine is best) because once you’re raw back there, there’s no stopping it. So after each evacuation, soothing wipes and then cream. Yes you’ll have to constantly reapply the cream but it’ll be worth the extra effort.
Posted 5/7/2021 3:41 PM (GMT 0)
Fingers crossed that you're able to get some answers from the scope. If the symptoms subside 100% the scope could appear normal, but with a calprotectin of 600, there is/was almost certainly inflammation. I know it's stressful but there are tons of treatments, even really noninvasive ones, like suppositories. Good luck with your scope!
Posted 5/8/2021 6:23 AM (GMT 0)
Thanks- wipes and cream are on today’s shopping list! I keep on going- but this all white diet is going to make me constipated! Then catching myself and going, oh wait, it really really won’t...
Posted 5/14/2021 12:54 AM (GMT 0)

nakamura1967 said...
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.

Same thing has happened to me several times now. It sucks because then my doctor just tells me I'm fine and won't let me change meds.
Posted 5/14/2021 12:25 PM (GMT 0)
Welcome back Sara!
Posted 5/14/2021 1:07 PM (GMT 0)

IamCurious said...
Welcome back Sara!

Thank you! smile
Posted 5/17/2021 10:50 AM (GMT 0)
Currently recovering post procedure! Heard mumblings about “lower down” and requiring enemas so it sounds like they’ve found something alright.

I scoffed at posts I’d read about the peep being challenging. It was unimaginably horrible. Got 90% down in the end but am still haunted by that salty oily vanilla taste...
Posted 5/17/2021 10:52 AM (GMT 0)
Oh and thanks for the tips re wet wipes. Made such a difference.
Posted 5/17/2021 3:24 PM (GMT 0)

Candoolili said...
Currently recovering post procedure! Heard mumblings about “lower down” and requiring enemas so it sounds like they’ve found something alright.

I scoffed at posts I’d read about the peep being challenging. It was unimaginably horrible. Got 90% down in the end but am still haunted by that salty oily vanilla taste...

I'm glad to hear you've had the procedure and will hopefully find out the cause of your symptoms soon. It's a relief to get a diagnosis after not knowing what's wrong.

If you do join our elite club of people with UC, I hope you take one day at a time, and don't worry too much if you read posts by us long-timers with pan-colitis. I know people with mild UC that just take mesalazine, and are no-where close to having surgery smile
Posted 5/17/2021 5:14 PM (GMT 0)
What prep did you use?

Do you have a prescription for any meds at this point, and when is your next appt?

Let us know the results of the biopsies.

q
Posted 5/17/2021 5:49 PM (GMT 0)
They’ve sent off biopsies, I didn’t get a diagnosis per se but the surgeon who spoke to me VERY briefly said that it didn’t look too serious and was limited to the lower portion (he did say so many inches but I was still quite sleepy at that point and can’t remember) l got a script for salofalk and will have a follow up appointment with GP when she’s been informed. Maybe it’s proctitis? I suppose the biopsies should highlight if there’s been more extensive inflammation that has healed. Yes I am thankful that it’s mild as I know the spectrum of severity is huge. Have been following crowns and colitis Uk - so many inspirational young people out there with severe IBD.

Quincy- I had the kleen prep, 4 litres of it, thought I was going to explode from the sheer volume. The taste was the worst aspect, the loo visits surprisingly fine!
Posted 5/18/2021 6:24 AM (GMT 0)
Yes...the taste can definitely be a make or break.
I cannot find any unflavoured gallon prep brands anymore...

Salofalk enemas? 2 or 4 gram?

Looking forward to your results. If you do have UC, I hope you will be referred to a GI.

q
Posted 5/18/2021 7:05 AM (GMT 0)
Just suppositories Quincy, 1000mg nightly. I heard them discussing enemas though- maybe that’s a consideration if this treatment fails? Yes it would be good to speak to a specialist who would take a detailed history. Whilst things look ok now I have been flaring for over 3 months and the copious blood and diarrhoea at the start would suggest involvement of higher up areas wouldn’t it?
Posted 5/18/2021 4:13 PM (GMT 0)

Candoolili said...
Just suppositories Quincy, 1000mg nightly. I heard them discussing enemas though- maybe that’s a consideration if this treatment fails? Yes it would be good to speak to a specialist who would take a detailed history. Whilst things look ok now I have been flaring for over 3 months and the copious blood and diarrhoea at the start would suggest involvement of higher up areas wouldn’t it?

As I have UC that isn't continuous I can sometimes be pretty unwell, but still have semi-formed bowel movements because the liquid stool passes through the inflamed parts in the ascending and transverse colon then start to form as it gets down to the left hand side, and rectum, so my bowel frequency, and the amount of diarrhoea doesn't necessarily correspond with how ill I am.

I think that's the same in reverse for most people in that they can have just a few cm of inflammation in the rectum but high levels of diarrhoea because the stool can't form - ie the amount of diarrhoea and bms doesn't necessarily mean inflammation higher up.

Post Edited (UCyousee) : 5/18/2021 10:33:46 AM (GMT-6)

Posted 5/18/2021 7:01 PM (GMT 0)
That’s really interesting and makes perfect sense UCyousee- thanks for the explanation 🙂
Posted 5/19/2021 5:17 PM (GMT 0)
It does not make perfect sense for someone with UC and limited rectal inflammation to have diarrhea. There are probable other reasons for that.
q
Posted 5/19/2021 5:58 PM (GMT 0)
No this actually does make perfect sense and it is explained by Dr David Rubin from Uni of Chicago on one of the youtube vids from AIBD. I had similar with my healing some years ago and my GI also said that rectal inflammation need not be the cause of diarrhea.
Posted 5/20/2021 6:18 AM (GMT 0)
Sure

q
Posted 5/20/2021 7:33 AM (GMT 0)
Isn’t stool formed in the lower end though? Vague memories from school science? How long does it take biopsys to come back typically, and who makes the diagnosis? GP? Gastro? Is proctitis / limited UC also a lifelong disease? Once mild, always mild typically?
Posted 5/21/2021 5:43 PM (GMT 0)
Biopsies are done by a pathologist. There will be a statement to pathology what the doc suspects.
The results are described by each biopsy and location.
There will not be a definitive diagnosis for UC or CD...but it will be consistent with. Same goes for microscopic colitis or pathogens...etc....
The doctor will make the diagnosis. Not all diagnostics are correct...there have been quite a few with supposed UC that is actually CD. Lots of factor there.

Regarding stool...the whole colon absorbs fluid and pushes stool along with peristalsis.
Food intake can affect passage and shape and consistency of stool.
The stool sits in the sigmoid and sends a signal to the rectum for download (for lack of a better word).
If the rectum alone is inflamed (depends on extent and severity)...it will usually delay that process. Hence more constipation the longer stool sits in the sigmoid. As well...as the process continues, messages are sent to the colon itself to slow down...more constipation, smaller stools.

If inflammation is higher in the colon...generally, or there is an offender in or disease in the small or large intestine...signals through the colon wiill quicken to empty it out faster.

You dont know what you have. When you do and know exactly the results, share them. Get a copy of or access to the pathology results...not just the doctor's coles notes of conclusion. Then get real smart on what it is you have and what meds you need to be on.

q
Posted 6/15/2021 11:29 AM (GMT 0)
Me again!

So I finally got biopsy results (read to me over phone, letter on way) colorectal surgeon has said that I have proctitis and that it should respond to 4-6 weeks on salofalk (which has worked a treat, tbh). Upper colon and left sided something biopsies were “unremarkable”. No onward referrals made.

So is this mild IBD? Or do I not really know yet? 🧐 presumably as I have had identical symptoms in the past, it is a recurrent thing?
Posted 6/15/2021 12:20 PM (GMT 0)
Proctitis is UC in the rectum only. The level of severity can range from mild to severe regardless of the location of the inflammation. This is a lifelong thing, so yes, you will have periods of flare ups and periods of remission. The goal is to keep it controlled so it does not spread.
Posted 6/15/2021 5:25 PM (GMT 0)
Did your doc state proctitis or ulcerative proctitis? Proctitis is a term for rectal inflammation, so until you get the report, you will not know. Doesn't sound like it if he hasn't referred you to a gastroenterologist, however, there are good doctors and not.
It's good you're on rectal meds.

Let us know the exact results when you get them.

q
Posted 6/15/2021 7:50 PM (GMT 0)
The letter stated “proctitis” only. I’m all confused, how do they know if it’s “ulcerative” or not. He barely spoke to me! Hard to care as much when you’re asymptomatic 🤔 but thinking of potential future flares...
Posted 6/16/2021 5:59 AM (GMT 0)
It should say if it's consistent with Ulcerative proctitis.
Let us know when you get the results.

In the meantime, how are you doing?

q
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