To ask for reassurance? Colon issues (TW)

[valadon68]

I'd v. much appreciate positive stories if people are willing to share! Have NC.

Having colonoscopy next week. Have had odd symptoms for nine months now - rectal bleeding, spates of diarrhoea and constipation (though it's improved a lot since increasing fibre intake/taking prebiotic), sporadic nausea, reflux and gas. FIT and calprotectin tests normal, negative for h. pylori and coeliac too. Am in my 20s with a family history of colon issues (polyps, cancer) on both sides. Last episode of rectal bleeding was a couple of weeks ago on my period but I have no idea how frequent it's been as I'm a coward and mostly actively avoid looking.
Bloods fine in summer but I've recently been feeling slightly dizzy.
This doesn't paint a great picture to me and I have been so worried and preoccupied for months, so would be hugely grateful for some positive stories of non-scary diagnoses after experiencing scary symptoms.
Also, I recognise that many people are going through much worse now and genuinely hope I'm not being tone deaf here in posting.

I don't have an answer for you, I wish I did. But hopefully the bloods in summer is a positive thing. Could the dizzy be anxiety? Have they considered IBS or coeliacs?

Really hope it's all sorted soon for you.

Sorry you're having to deal with this.

Have you considered rectal endometriosis, given the bleeding has happened while on your period? It can cause all the symptoms you list.

Good luck with getting a diagnosis.

I hope you get some reassuring news.

Could I ask you to make a new year's resolution to try to stop your not looking given your family history, for your own sake it's important that if you see anything different that you are aware.

Do you have an identified genetic predisposition to this type of cancer, you may get regular screening, which might give you peace of mind going forward.

Thanks all, appreciate your kind words and suggestions. Yes, definitely should stop sticking my head in the sand (GP refused to refer me at first, so didn't want to worry with no prospect of resolution!).

The colonoscopy was cancelled today as well due to covid so am not very happy bunny anxiety-wise don't know when it'll be rescheduled.

Ah I'm so sorry to hear that, shitty covid.

Thanks trunumber :)

Thankfully my parents don't seem to be prone to these issues.

Can rectal endometriosis present without painful periods, does anyone know? I used to have horrendous periods as a teen but they've so much better since coming off the pill after a few years.

While I wouldn’t dismiss it, I’d still be more inclined to think coeliac/Crohn’s/IBD.... it sounds horrible, and I’m sorry, but I really wouldn’t recommend taking anything for the symptoms at the moment either, as it may “mask” the source of the problem prior to the colonoscopy.
Have you been eating heaps of gluten, etc? You seriously need to stuff yourself with all the croissants, etc) in the weeks before the colon prep (gruesome) and then your guts will show any “true” damage.

Thanks Justilou, that's a good tip and croissant prep sounds infinitely preferable to Moviprep must say 😏
I suppose I tend not to think of IBD because the diarrhoea has never been that bad - only once a day if I am in a phase of it happening - and I have no pain. Bit of RH discomfort every few months i.e. pulling and burning sensations but not otherwise nothing.

Oh and not sure I have that much gluten (not really a bread person), but then it strikes me that I'm not really familiar with what gluten is in, so something to look out for!

Unfortunately horrendous periods during teenage years and not afterwards would be quite typical. Horrendous periods can be a feature of earlier-stage disease - they ease off a bit as the disease progresses. This isn't the case for all patients - some also have bad periods later. But it was definitely the case for me, I'm afraid.

@valadon68 - I’m not a gluten person either. I naturally avoided it as a kid. Didn’t like bread or toast or sandwiches, etc. Didn’t even like cakes or biscuits, or custard. Even my incindental gluten intake (beer, scotch, bourbon, rye was very, very low!) Seemed my body knew. I tested negative for coeliac twice (wasted bloody biopsies! And it was only when the doctor told me to stuff myself with pizza and croissants for a month prior, that the biopsy results were definitively a yes for coeliac disease. (It was pretty obvious from the symptoms before I got there though 😩) Meanwhile, there are other autoimmune diseases that also manifest as dodgy gut problems, so please make sure that your GP tests your autoimmune markers as well as your vitamin and mineral absorption. It’s amazing how quickly the rest of your health starts to decline once one nutrient is low. I hope you get on top of what’s ailing you and begin to feel better ASAP!

If it’s bright red blood - no need to worry as it’s likely internal heamorrids or a Fischer. If only dark black blood it’s a concern as it could be suggestive of internal bleeding in the bowel. Sounds like you have IBS though so pl don’t worry.

Have they not asked for a stool sample to check if you have raised calprotectin first?
If it's not raised then this can point towards IBS.
If it is raised then it can point towards IBD (Crohn's or colitis) and you'll need further investigations and biopsies.

I'm undergoing investigations myself @valadon68 so I'm not massively experienced but that's what I've gleaned so far.

I had a gastroscopy and colonoscopy about ten days ago.

Thanks everyone, and sorry to hear that people have gone through chronic health worries. Good to know that about endo, as my grandmother also had vv. painful periods so there may be a link there. How interesting to hear that your body might have been warning you off gluten, Justilou! How did your colonoscopy and gastroscopy go, Gin?

When I've seen it, it's always been fresh blood and my stool tests were negative for occult blood and inflammation, so perhaps I am worrying for nothing? It's the dizziness and family history, and longevity of the symptoms, that are freaking me out. I've never wanted a diagnosis of IBS and piles more

Am making a note of all suggestions, btw!

You've mentioned the family history, is it something you've been tested for.
I ask because DH has a family history of bowel cancer, a known gene was identified, and it was confirmed that he has that gene. If that is the case you can get regular screening with a view to identifying any changes early.

It does sound like IBS, but I'm a random on the internet so have anything more serious ruled out properly.

I have IBS too, but if I were to experience any new symptoms I'd get them checked out.

Well that's good if you're negative for inflammation @valadon68
As for the colonoscopy well it wasn't pleasant but easier than the camera down the throat, I had sedation and needed gas & air in a certain area which he couldn't access in the end. I don't know why or what means.
Biopsies are just a nip. You hardly feel them.
The worst part was the prep the night before.
My hospital give moviprep, I found it difficult and it made me sick. There are alternatives but some prefer moviprep so it's hard to advise what you'll prefer!
In the meantime you could join the Crohn's/colitis FB group. It's run by the charity so it's moderated and not full of idiots like some medical groups are!
(I mean just for the advice around investigations as there are lots of experienced people on there, not suggesting this is what you have )

Agree completely with @GinandGingerBeer... with something like this, you can have very serious complications if you don’t eat and drink correct foods, and like I said before, doctors may miss things if you change your diet prior to colonoscopy. Also, you could find yourself spending ££££ on unhelpful or even potentially harmful things as none of us really knows the cause of the problem. While we know you are experiencing discomfort, we don’t want you becoming sicker!!! Obviously, you MUST go t9 A&E if your bleeding does get worse.

I’m sorry you’re having difficulties. My son had most of these symptoms and is now on medication for IBS. You’re right not to continue sticking your head in the sand.
Please don’t think what you’re going through isn’t important because we’re trying to deal with Covid - your health is the most important thing and you deserve peace of mind.

Good luck when your appointment is rescheduled.

Thanks for being so kind. I will be sensible if the bleeding gets worse and have added some Guinness and croissants to my online shop...
Hope your son is doing better now chocolate.
All the best with finding an appropriate course of treatment/diagnosis, Gin, at least you've got the scopes out of the way!

To be honest it could be anything. Could be celiac, intolerances , ibs, ibd plus I know endo can cause Bowel issues if it’s high enough. You personally have the same symptoms as me and I have ulcerative colitis but until you have the colonoscopy and biopsy you’ll never know. For now I would make a list of your symptoms when you get them and make a note of any similarities like food, stress etc that happens when you get the hem . My condition flares at certain food. I hope you get it sorted soon .

Thanks Charlotte - I've actually been keeping a food diary since August (!) but I suspect it's a bit of a perfect storm of possible intolerances and anxiety, rather than one cause I can neatly isolate, but I should probably look at it in more detail.
How do you cope with the UC?

@valadon68

Thanks Charlotte - I've actually been keeping a food diary since August (!) but I suspect it's a bit of a perfect storm of possible intolerances and anxiety, rather than one cause I can neatly isolate, but I should probably look at it in more detail. How do you cope with the UC?

Yeah it could possibly be stress. Stress can effect the stomach so possibly. I got diagnosed 6 years ago now. The first year was the worst till I I learnt to manage it and also the medication kicked in. After that I’ve been symptom free since with no problems.

Just bumping this as I finally have a new appointment for the colonoscopy on Sunday - bricking it (sorry)! If anyone has any fluffy stories about having colonoscopies and it all being fine in the end, they'd be very welcome...

I've been feeling really well recently so would be a bit of a kicker if it was something bad! I did get my tests back in Jan and didn't have anemia, so I guess the dizziness was just one of those things.