Starting investigations... advice going forward?

[C3333]

Hi all,

GP has referred me to a specialist and ordered some tests to investigate ongoing bowel issues I'm having. I'm hoping to get some advice to help me be more confident/focused and not miss asking for/giving important information going forward.

For context, I'm an 'always busy' 39yo mum and shift worker - I tend to race through appointments feeling flustered, miss things/ don't communicate well - and everything's a blur at present as I've just been 'dealing' with changing bowel issues day to day, as they've been coming and going, and the days race by for... at least 6 months?

Questions:

- Does anyone have advice/similar symptom stories or insights that might shed light on what is likely relevant for me here and definitely worth mentioning?

- Are there questions/things I'll be asked that I could be prepared for/consider in advance?

- Mucous and blood are concerning when present, but they come and go/don't seem to happen with every motion?

- How relevant are at home tests for FOB etc (pic attached). Is it worth mentioning the tests and results to someone at this point (explanation below)?

And any opinions/insight about symptoms and relevent levels/home tests for FOB/transferrin? E.g. Do the faintness of lines make it less important to mention?

Trying to put things in order, the main 'bowel issues' I've noticed playing up:

Persistent changes in bowel habits/stools

- Used to always be constipated, then started getting frequent diarrhoea (without other infective symptoms).

- Stools frequently 'mushy' and poorly formed/small/stringy... intermittent periods of mucous in varying amounts.

- Sometimes small amounts of?maroon-coloured blood? in stool/?colouring stool or water.

- Increasing frequency and urgency.

I used to open my bowels maybe every 2- 3 days, now I'm going through frequent runs of multiple times a day/night, and with a sudden sense of needing to go !NOW! - like I'd expect with gastro, or like I used to occasionally get a while after drinking coffee... except now it's all the time, obviously not gastro and now I don't drink coffee.

Investigations

> Home FOB/Transferrin and Calprotectin/Lactoferrin tests: positive but faint? (pic attached) - and I've not seen as much ?blood?/mucous for a while?

> Asked GP for a new FOB test form for persistent change in bowel habits/frequent diarrhoea/occasionally maroon colour (stand-in GP had written me up for a FOB test over a year ago along with ob/gyn tests, investigating repeat low iron needing frequent infusions, but I focused on the ob-gyn stuff and skipped it).

Was asked/confirmed frequent abdo pain and grandparent history of IBD/bowlel ca.

GP said FOB not indicated/previous FOB order made no sense (?), and that things sounded inflammatory.

Feeling awkward, I didn't speak up about home tests...

He didn't order FOB but ordered tests for:

fecal calprotectin, MCS, OCP and reducing substances, and referred me to gastroenterologist saying I might need scopes.

Other things (? Worth mentioning?)

- Loss of appetite:

Very noticeably. This started as repeatedly feeling suddenly 'full' after only one or two bites. Now I struggle to even start eating a lot of the time (I have T1 (autoimmune) diabetes though, so often I don't have much of a choice! ...Sugars are well controlled, averages in 'normal' range, so symptoms not related as far as I can tell).

- Flares of severe sharp abdo pains - mostly on the left side (I thought constipation, but now happening more frequently/even with loose stools).

- Bloating and nausea: almost constantly.

- Periods of above belly button pains that will sometimes last days.

- Sometimes food passes fast and not really digested at all.

- Occasions where nausea has got extreme, and then I've vomited undigested food from over 12 hours before (but pretty sure this hasn't happened for over a year though).

- Low grade fever (this has been my norm for many years though, and I have 'inflammatory arthritis/ undifferentiated mixed connective tissue disease', so ?)

I think that's about it for now - for anyone who's still with me to here - Thanks!

[C3333]

Thanks TwinklySunflower,

Glad to hear you found relief with your diet, I'll have a look into trying that.

Sorry for your recent flare up. Can I ask what symptoms you have had that relate?

I hope it settles quickly for you and the colonoscopy results are reassuring/ good!

[C3333]

What a rough trot for you after a long time without symptoms, I'm glad things are helping - here's to continued success onwards and upwards!

I'm not across all the medications/ treatments you mention, but apart from the bright red blood, the symptoms you mention sound very similar... thank you for all the extra information!

[GCCA-Survivor Administrator]

Hi C3333,

Thanks for posting with us. You definitely have a lot going on. And we are with you and want to know what’s going on with your health. I’m glad to see you are seeking the answers. One thing you should do is write everything down so when you are in there with the GP you can check off things as they are covered.

About symptoms … I would always say “Everything is relevant until it’s not.” 🤔😁 Any time there is blood in the stool there needs to be a diagnosis of what’s causing it. It could be many different things, but it’s necessary to narrow down the possibilities and get on a path of being well. Any sudden stool changes out of the norm for you are worth mentioning. The results of at home FOB test are worth mentioning. YES!!! No matter how faint the line may be. Any line would mean further tests are needed.

When discussing bowel habits, know if anything has changed in your diet or did you start some new meds that may be the cause. Frequency is good to know. When I was on a clinical trial, I had to keep a journal about poop frequency and description. “I poop about twice a day but it’s like soft serve ice cream.” Urgency would probably be a good thing to know as well. My whole cancer journey left me with a small window of time to find a bathroom. It is what it is.

Abdominal pain should be covered. Knowing the location is very good information as well. You may need a CT scan to check that out. Food processing is good information as well. Are you absorbing nutrients from your meals? That may require an endoscopy to look into the stomach.

Bottom line, symptoms are relevant until they’re not. You need answers. The 3 biggies are the blood in the stool, the abdominal pain, and the fact your grandparent had bowel cancer. Was your grandparent the only one in the family? Knowing family history is huge. Today, all cancer patients should receive genetic testing to see if there is a hereditary aspect to the mutation. That info could lead to further testing with family members. You could have that testing done on yourself just to make sure. It’s done with a blood draw.

We do wish you the best in finding those answers and getting on the path to being well soon. Please let us know about your gastroenterologist visit. You need to narrow down the possibilities of what’s causing all this and the gastro visit should be very helpful.

Thank you,

~Tom, GCCA Survivor - Colon Cancer Connected Site Administrator.

Just a reminder - this group is here to offer support, share experiences, and offer our thoughts - but this is not medical advice, and you should always consult your medical professional(s). Additionally, for all emergencies, seek urgent medical care, never delay.

[C3333 in reply to GCCA-Survivor]

Thanks for the detailed reply Tom! GCCA-Survivor

The response about 'everything's relevant til it's not' 🤔😁 is ... both reassuring and scary - I'll try to keep it in mind and write everything down 🫣🤔

Cheers for heads up about diet/med changes (none) and family hx/ testing for cancer mutations too (just the one grandparent with IBD and 'bowel' cancer, plus uterine ca at this point; two others have had bladder ca and brain tumour respectively)

- I hadn't considered such testing, but knowledge is power and it could help with awareness/early screening etc if at risk - are such tests something primary providers arrange if there's relevent family history, or is it something that would be chased up independently?

Out of curiosity and acknowledging risk of over-comparison on my part, is the 'urgency and small amounts of time to get to the bathroom' something you experienced from the start of your journey?

I've nearly been caught out without warning a few times now, so Veteran tips and tricks for what to watch out for and/or elaborations on it being 'what it is' are appreciated if you have any!

So far I've just started avoiding coffee/large meals even if I don't feel full early.

And then there are days where the feeling of 'bowel nausea' (🤣🤷‍♀️) and urgency is constant/so frequent I just stay home?? (No solutions for those days so far - I'll ask the docs etc too, but after the first few times, gastro-stop etc doesn't really seem appropriate)?

- C

[GCCA-Survivor Administrator in reply to C3333]

Hi C3333,

When I was doing my clinical trial, they would want to know everything going on with me. Everything!!! What may be insignificant to us may mean something to them.

The urgency from when I feel I need to go to the time I better be in a bathroom happened when I started my clinical trial drug. A lot of patients talk about a new norm and that’s one of mine. I have additional issues as I had to have stomach bypass surgery to fix something my immune system did during the clinical trial. I do take Lomotil med for diarrhea help. At the beginning of the trial is was pretty bad but got more manageable the 2nd year. I could barely go 30 minutes between loo visits.😲 I was on Lomotil, immodium and opium tincture to try to deal with it. All that was caused by the immunotherapy drug I was on.

My current situation or norm ... I know from the time I get up in the morning it will be about 2 – 2 ½ hours before I will need to poop. I do eat some breakfast first thing as well. So, if I have to go somewhere or do something like ride my bike, that time frame has to be taken into account. If I want to ride at 7:00 am, I need to get up by 4 am to start my day. I will go to bed a little earlier the night before to help things out. If I’m traveling like driving a long distance, I won’t eat a big meal until I’m where I need to be. I also know that home improvement stores and grocery stores usually have the cleanest bathrooms. But if I manage it right, after that first poop I can pretty much do anything. I just have to watch my meals.

Now, certain things I eat or amounts of certain things could be an issue. I love peanut butter. But if I eat too much, it’s not long before I will need to find a loo. I have to take it easy with the spicy stuff as well. I do pasta and rice very well and add chicken or certain sauces that agree with me. If I over spice, it may not go well. Also, I have to be careful when introducing new foods. I will usually try that at home to determine the reaction.

The key is figuring out what caused your experience. I ate 4 breakfast cookies instead of 2. It doesn’t seem to like me adding walnuts to my oatmeal in the morning. Plain oatmeal with added cinnamon is always good for me. On days when I will be doing something significant like a long bike ride or long hike, I stick to the foods I know won't mess with me too much. I have foods that are inside my "circle of trust" and know when I venture outside of it, I may pay a price.🤔

[C3333]

Thanks Tom, very helpful!

Sounds like you got put through the wringer with that clinical trial - I'm so sorry you ended up with these complications!

Thankful for the inspiration over here! I haven't been out on my (mountain) bike for a while - but I look forward to getting back to it with more confidence!

[Fenella34]

Don't want to diagnosed you but this does all sound more like ulcerative colitis. I have it as well and experienced most of the symptoms you describe. Please don't despair if it is. Once you get on the correct meds, things will seem more manageable.

[C3333]

Thanks Fenella34

I was wondering at that/ considering it might be likely given that's how my grandmother's bowel issues journey started...

Can I ask if you had symptoms that came and went for a while pre-treatment?

I had actually been brushing bouts of diarrhoea/mucous/small amount of blood off as 'probably payback for constipation/ate something dodgy' (albeit over and over again 🤣🙃), but those don't really make sense at this point, so had to actually stop and have a proper think...

And colitis would probably link in with the long history of repeatedly dropping iron... but ? I guess I kinda assumed all of these things should've/ would've been really obvious and in-my-face from early on, rather than on and off/initially slow burn?

[Fenella34]

Yes, my symptoms did come and go. My first flare was the worst but disappeared for 2 months only to return. I also had very low iron.I hope you get some answers soon. I do understand how worrying it is but I often think it's fear of the unknown which is worse. Once you know what it is, the uncertainty goes away and you can feel a bit more in control x

[Greencar12]

Hi there. I'm wondering did you ever get a diagnosis? I'm having similar issues to you, following some dodgy beetroot, and have blood on my stools for around three weeks Will submit a FIT test in the morning, but wanted to get some reassurance