Biopsies

Hey,

I was just wondering, would UV show up on biopsies if you are not currently in a flare??


Long story short, I had my biopsy results about a month ago and was told it is unlikely I have UC as nothing showed up.
I still have procitis but it looks like the steroid meds have really helped with the inflammation.

I was advised by my consultant to stop taking the meds as he said it was all looking a lot better and he didn’t see the need for them given no UC had shown.

Fast forward 4 weeks and symptoms returned - leaking, a lot of mucus and blood in stool.

I have put myself back into the steroid foam which has calmed the leaking and strange consistency of stool however, I still have a lot of Mucus (yellow and white) and the past couple of days blood has returned.

I was told to contact consultant if symptoms returned but typically they aren’t getting back to me.

Completely at my wits end. I just wondered whether the biopsy could be wrong if I wasn’t in a flare when I had the colonoscopy.

Any advice would be greatly appreciated

Quincy... a consultant in the UK is a GI...but I agree, he doesn't sound like a very good one.

Jess: Do you have the option to switch hospitals? My siblings in the UK with IBD have both had (significantly) better care when they switched to university hospitals.

Well, that "consultant" is really a moron! He has been giving Jessxxx a brush-off for months-- so that she keeps relapsing when discontinuing UP treatment per his dumb recommendations. (And she has 3 small kids to take care of, besides.) I agree with Poopydoop's advice to find a better medical practice where the doctors understand reliable care for IBD patients, rather than suffer repeat flares due to this guy's stupidity and/or negligence. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

I can only speak for myself. I developed bloody, mucus diarrhea in 2012 after food poisening. I had Colonoscopies in 2012, 2013, 2014 and 2015. They ALL showed little inflammation, no UC or Crohns. My blood work was normal during that time period also. I was going to the rest room 20 to 30 times a day. Nothing would stop it.

In mid 2015 I was standing there when a fistula broke thru on my abdomen and waste started pouring out like a fire hose. I went to a little country hospital by my house, who sent me back to the the same ER and doctors that had previously told me "nothing was wrong with me". They suddenly got serious. I was transferred to yet another hospital where I was diagnosed with UC and Crohn's. I was septic and almost died. My blood pressure plummeted and I coded out after one of my surgeries. It took from 2012 to late 2015 for my intestines to show slight inflammation, my blood work was just alittle off, yet I was pooping blood 20 times a day, vomiting, had multiple fistulas develop plus the extra intestinal symptoms. The learning hospital was flummoxed but they all agreed that I was in dire shape, I showed all the symptoms of UC/Crohn's but the scopes and blood work were pretty much normal--even after the fistulas started breaking thru. I was just grateful to finally have someone look at my like I was an ill patient...and not a hypochondriac.... and give me a diagnosis. My blood work and scopes did not change until late 2016 or early 2017. Then suddenly everything came together and definitely said UC and Crohn's. It was one hot mess.

So yes. You absolutely can have your scopes and your blood work come back normal and still have IBD symptoms. It's only after your IBD gets the upper hand that changes start to take place for some people. It took me 3 and a half years and 4 doctors before I was finally diagnosed.... Then another year or 2 for my scopes and blood work to change.

Most of my journey from 2015 onwards has been followed and documented by a learning hospital team of doctors who are the head of their departments AND they still have calls with other specialists trying to understand what's going on. So your journey, your experiences, may be different from others on here.

Based on my experiences, I'd find another doctor that listened to me and erred in the side of caution.

I hope you can find a better doctor and that you feel better soon.

Clo

Thank you for all of your responses, I do appreciate it.

Quincy - to answer your question, no I haven’t seen my results. I was advised by my doctor that I would be sent a copy of my biopsy results at the same time they recieve them - I never was.
I only know the results through the consultant who rang me after persistent chasing up with the hospital and this is when he said there are no signs at all. His words were ‘ you have procitis which had improved significantly with the meds so I don’t see any reason for you to stay on them. It’s not straight forward as to what is causing the inflammation, I’m not sure’
I have been referred to the gastro team which I have an appointment for in January - I’m unsure what they look at or what kind of investigation they will do.

It was the Budenofalk foam enema I was advised to stop taking. I asked whether I should taper off of them and he said there was no need and I could just stop - which i found strange. But I did taper myself off of them

I’ve now started taking it again to see if any improvement - having good and bad days at the minute. Not bad like I was at my worst but getting a lot of pressure isn’t rectum, blood and mucus.

I would love to find a new consultant, I’m unsure how to go about it here unless I go private (which isn’t really an option for me)
If anyone in the uk has switched consultants before, advice on how to do this would be appreciated

Jessxxx, you could start a new thread asking UK forum members how to change consultants. I've seen recent posts here by Ruby777 and Delta_hippo, who seem to be in UK, and NiceCupOfTea (aka NCOT) is definitely in the UK with long experience pursuing IBD treatment, plus Poopydoop is a UKer living abroad now. In the past we had several other members posting from UK (including Scotland) who probably solved their problems so they haven't been participating here lately. But do try putting UK in your title and it might help you to get more specific advice than we forum members in North America can give you. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)