Normal endoscopy... now I’m confused!

[Amylmb]

Hi all,

I have written here a few times and have now had a colonoscopy. All my symptoms started again in June and stopped a little while ago. I had lots of blood, mucus, diahhrea bloating, urgency etc. This has passed mainly except the bloating. I was being investigated for ibd but my colonoscopy has come back clear. Does anyone know if that now rules out ibd or could I get a normal colonoscopy because I’m not “flaring up” anymore?

I feel horrid that I don’t know what causes these episodes of feeling so poorly and by the time the apppintments come for scans or tests then they symptoms have passed and it’s been months since it all started.

Any help or advice would be great!

Thanks

Amy

[Viklou]

Welcome to my wonderful world xxx. I've given up being confused and just deal with stuff when it happens. I am waiting on another Colonoscopy as FCP continues on being raised

[Amylmb in reply to Viklou]

Thanks for getting back to me, it’s so confusing isn’t it and also disappointing that I can’t get any help 😒 xxx

[Viklou in reply to Amylmb]

Yes it is but also a relief in a way that it isn't anything more sinister. Have you had an MRI

[Amylmb in reply to Viklou]

That’s true!! I had a normal mri too, goodness knows what’s going on. My chiropractor thinks I may have a ankylosing spondilytis (sp?) so not sure if that’s linked, I’m just not sure any more xxx

[misty14]

Hi amy, im not surprised your confused and its tough having obvious problems but tests/scans come back normal. Usually a clear colonoscopy would rule out ibd. Did they take biopsy's? They can take a while for thdir resukts. My colitis was diagnosed by biopsy alone as its very mild! After the test did they give you the outcome and diagnosis?. Did you have a calprocten stool test before the colonoscopy.?.

Ive had a colitis diagnosis for 10 years and recently had a colonoscopy after a positive stool test and symptoms and im confused too as mine was clear. It appeared too from my gastdos letter he was discharging me back to gp with diagnosis of ibs. Ive managed to be on their list for another appt with him to hopefully clarify it all. My gp urged me to do this.

Im wondering if you could do the same as we do need to know whats happening.?.

Sorry for all the questions. Keep safeX

[Amylmb in reply to misty14]

Thank you for replying ☺️ yes I had biopsies taken, it looks like from from 5 places. That’s good to know biopsies can recognise what’s going on too. They just said colonoscopy was normal and my gastro would be in contact ... but not sure what if anything will come next. My calprotectin results were over 2000 in July at the worst at my symptoms but not had a stool sample since.

I think I will push some more for answers. I’m yet to properly talk to anyone, they all seem to brush me off and like someone else will deal with it, but they haven’t! Fingers crossed you get your answers too xxxx

[misty14 in reply to Amylmb]

If i were you amy, id push to see the gastro as that is what they've said should happen. Especially as your calprocten test was higher than mine and my gastro said it was regarded as high. Its impirtant to have our ongojng symptoms explained.

Fingers crossed you get an appt quickly. Thanks too for your good wishes. Take care and keep safe. Xx

[Amylmb in reply to misty14]

Thank you, I will do, I will keep pushing to see what happens next. If the gastro doesn’t help then I guess I’ll have to wait until the next time 😒 and start all over again.

You take care too, thank you for your replies xxx

[jakelayla in reply to Amylmb]

Hello Amylmb, it's good news that nothing sinister was picked up. Not all colitis shows up during a colonoscopy, Microscopic colitis is generally only diagnosed when examining biopsies. Histology report can take a couple of weeks, but you may get some more answers when it comes through. It's always easier to deal with things when you know what the problem is. Hopefully you will get some concrete answers soon, and start to feel better and easier in your mind. Good luck!

[Amylmb in reply to jakelayla]

Thanks for getting back to me, thats good that they will keep looking at the biopsies too. I just wonder where all the blood came from before if nothing is picked up from biopsies. Hopefully only a little more wait to understand some more. Thank you xx

[Viklou in reply to Amylmb]

They have not taken any biopsies when I had my colonoscopy. Is this normal if the colon looked ok

[jakelayla in reply to Viklou]

I am not an expert by any means Viklou, but biopsies are for picking up anything not visible during colonoscopy. Maybe they had a good reason for not taking any. You could speak with your gasto nurse to confirm this. Take care and good luck.

[Viklou in reply to jakelayla]

I have that's why they want to do another one and to hopefully enter the terminal ilieum

[jakelayla in reply to Amylmb]

This is a confusing journey for sure! Many years ago I was back and forth from GP surgery worried sick about bleeding, my Dr never examined me, just said I was too young for bowel cancer so it must be piles, I used suppositories and as the years passed stopped worrying, when I had my colonoscopy I asked if I had piles and was told no. This colitis probably started in my 30s, I'm now in my late fifties and have just been correctly diagnosed. For about 20 years I thought I had ibs and piles. What a game! Try not to worry too much Amylmb, the answer may lie with the biopsies, and you can be on the road to recovery. Take care.

[Amylmb in reply to jakelayla]

Gosh you have been a difficult journey getting diagnosed. I am sure my mom has been brushed off with ibs too but she doesn’t want to bother asking anymore. Thank you for getting back to me, it’s reassuring to know other people understand xx

[misty14 in reply to Amylmb]

Thanks amy for your lovely message. As they put on your outcome sheet that youll.get a gastro appt you can chase this up with the hospital by ringing the appts dept . I f nothing's been booked then ring the consultants secretary and she will sort one out for you. We have to make sure we get what we need as its easy for us to be forgotten!.

Best of luck amy keep us posted how you get on. I hope you get answers soon. Im glad you've posted as the replies have helped me too. Keep safe Xx

[Amylmb in reply to misty14]

Ahh thank you, you are so kind. I hope that feel better really soon. Thank you for the confidence to keep going with all of this x

[saj12]

We’re you on any steroids meds during when you had the scope?

[Amylmb in reply to saj12]

Nope I hadn’t had any medication, this has happened a few times now, I have lots of symptoms (bleeding etc) but then it all slows down and stops without medication. By the time they do a colonoscopy (months after symptoms start) then there’s nothing to see. I really don’t know what it is any more but don’t want it to happen again x

[saj12]

Have you asked for another fecal test to check if these levels are back to normal?

[Amylmb in reply to saj12]

Not yet, but that’s a good idea, I’ll call doctors tomorrow. Thank you x