Bowel issues - terrified it's cancer

[babachic]

I had a flexible sigmoidoscopy in November which showed nothing so am now awaiting an ‘urgent’ colonoscopy, but been told it’ll likely be a long wait. I’m just scared and need a handhold/somewhere to vent as I feel I can’t talk to anyone about this without worrying them or seeming dramatic.

Symptoms include:
• Pain in stomach/sides - mostly the left hand side but often all over. Have been given cocodamol for this which does help the pain but obviously doesn’t stop it happening or coming back
• Blood in stool, mostly streaks inside it that I can see and less often in the toilet bowl/when I wipe. This is usually red blood but I had a FIT test which came back positive (score of 51 which my GP said was quite high as a positive is anything above 9?). Bleeding has been there since early this year (May/June time)
• Pressure/urgency to go to the toilet to the point I’m emptying my stools 3/4 times a day and I’m unable to hold it in, like I need to immediately go when I feel it but don’t feel that I fully go each time (no idea if that make sense)
• Constant indigestion - this was less frequent but is now every day regardless of whether I’ve recently eaten or not. I’m having rennie tablets every day but again they’re not helping much. The indigestion has been waking me up some nights too
• Blood tests have shown iron deficiency - not fully anaemic, but quite low
• Bloating/weight gain - no idea what it is but my stomach is massive now. I look about 6 months pregnant and it hurts to have waistbands/jeans touching against my stomach as it’s so huge now. I have a handful of clothes that I can fit into now and this has only been over the past few months.

My GP did a calprotectin(?) test to check for inflammation which came back negative so as far as I know it’s just the bleeding and pain that they’re concerned about. Has anyone experienced this or similar?

I ended up signed off of work from November till now due to the pain and increasing tiredness but I’m starting a new job next week and I’m so stressed about how it will go and needing time off for any procedures/the colonoscopy whenever I get that through. From basic examinations and the sigmoidoscopy they have all but ruled out a fissure or piles, but that makes me more concerned.

Just feeling really anxious and with all the time waiting for an appointment it’s just getting worse. Not sure the point of posting, just needed to get this all out and log it somewhere and possibly speak to someone who has experienced similar

Are you not on a 2 week wait? I needed an urgent colonoscopy in November and had one within a week.

@canyon2000 no, they got my sigmoidoscopy done quickly (within a month) but said they have a huge waiting list for colonoscopy so even though it's urgent it wouldn't be until the new year (I was told this in November). The hospital told me to get a re-referral from my GP to speed it up which I've done and then they said it would still be a long wait. So anxious

It is such a scary time when you think something might be cancer. I had bowel cancer diagnosed late 2019.

Are you in a position you could get colonoscopy privately?
Had GP done two different stool samples? And a tumour marker blood test?

@Squiffy01 thanks for replying and sorry about your diagnosis. Did you have many symptoms?

I had a look at private colonoscopies but they were far too expensive, going to start saving for one though if the wait is likely to be as long as is made out when I contact the hospital. They did 2 different types, one they said was for inflammation and the other to detect hidden blood. They also checked my blood for 'everything' whatever that means and said everything came back normal about from my iron levels which are now pretty low. Would a tumour marker be part of this usually or is it a specific blood test?

I have recently been diagnosed with breast cancer so not a bowel cancer expert but there are delays atm unfortunately in NHS. I would get back to GP and hospital on phone and see if any way can speed this up, with my breast checks gp had said would be cancer, and as first gp dismissed 4 months earlier and very large lump knew I needed to be seen asap. I spent 3 hours on phone to get through which got a 3 week wait down to a week as they put me on cancellation list. It is worth phoning and saying will take cancellations though obviously prep needed for colonscopy but worth a try as many cancellations atm with covid etc. If no luck would go private if it would be quicker and have cash.

Also when I was suddenly given a 2 month delay after being told stage 3 cancer which may be at stage 4 I did a complaint via pals and sent to chief executive and that worked, all got resolved a few hours later and operated on that Friday and results back as stage 3. So complaints route can work as well though they are inundated atm. So sorry you are having to go through this and hope its not cancer. If it comes back clear bloating can be sign of ovarian cancer so worth getting checked for that as well or a ct of whole area. I had a ct from neck to pelvis and that showed most things.

My main symptom was pain in my abdomen generally right lower but could be everywhere. Came and went could go away for weeks sometimes was quite bad sometimes not bad at all.
And my iron levels were low which I never knew was a symptom until they told me.
They said my bowel was quite inflamed so I guess a good sign that yours isn’t?!

Not sure re the blood test sorry. I assume since you had blood and they were doing tests that they would do tumour markers but I honestly have no idea definitely something to ask GP about.

@babachic it must just depend on where you are. I had a colonoscopy at the beginning of November. I had a phone call with the consultant at the beginning of December and I am having another gastroscopy and colonoscopy next week with him, then an mri. I have been surprised at the speed of the procedures and I don't have cancer. He told me that on the phone consultation. He thinks I have colitis.

I have fibroids and those are benign but can grow to watermelon size, caused me to go anaemic and pressure on bladder and mine was much smaller than a watermelon, did give irregular menstural bleeding if you have that, that is invesigated through gynaecology. I would imagine a giant one would cause indigestion, pain in sides etc. At the same time had bleeding from bowel and bladder but none of it was cancer, the bladder tests included blood cancer markers but best to ask exactly what tested and results. Gynae did ultrasound I think.

If you get a cancer diagnosis they normally do lots of tests but if negative needs referrals to different areas if want to check that.

Could you ask for a ct scan whilst you are waiting for the colonoscopy? I had a gastroscope, colonoscopy then ct scan in 2019. I had (still have!) similar symptoms to you but without the bleeding which could be as simple as a fissure or haemorrhoid. I am now waiting for a pillcam procedure (to check my small intestines) but have been told it’s a long wait.
I don’t think the waiting time for scans are as long. A CT scan obviously won’t pick up things like inflammation etc so well but would definitely pick up polyps or tumours so that would at least put your mind at ease and they would definitely do an urgent colonoscopy if something was found.
Private CT scans are around £400 if you were able to go privately.

Oh and it may or may not help you but I was having endless broken nights sleep being woken at 2-3am each night with awful indigestion and gurgling guts. I now take a tablespoon of original Gaviscon Ahh night before bed, it has really helped.
I hope you get some answers soon op, constant gut issues are miserable to live with especially with medical tests taking so long. I was on a year waiting list to see a gastroenterologist this year!

@Silkieschickens thank you for replying and sorry to hear about the breast cancer. I found a lump a while ago and that was terrifying too although thankfully was all clear. Hope you're doing okay

I'm in Scotland so I don't think we have PALS here (I googled and couldn't find them) but found something similar I think so will phone them when they reopen in January. I'm on a pill that makes my periods very irregular (not had one since June but that's normal) so hard to tell from that, but have had some period type cramps. No bleeding from my bladder though but the rest of the symptoms seem similar to those of fibroids as you said. Just so scary having to wait for so long with no answers and no support as well, just being fobbed off by whoever I speak to on the phone

@Squiffy01 I'll ask my GP, they told me all the other values for the tests so hopefully will be able to explain more about what was actually done and what it could mean.

@RedPandaWanda thanks for the suggestion of Gaviscon, will pick some up tomorrow. It's a nightmare, I either can't get to sleep because of the pain in my sides or get woken up with horrible indigestion

Never though about a CT scan but Im confused about it all tbh. My GP said they wanted me to have a colonoscopy straight away but I got a sigmoidoscopy instead then halfway through was told they didn't see why it was a sig as it should've been a colonoscopy just constantly getting mixed messages or told different things every time I speak to someone. I will talk to my GP about a possible scan, but £400 is a bit more doable. Colonoscopies were over £1000 when I checked and that didn't include a consultation before/after as well!

@canyon2000 sorry to hear you still don't have answers. Can I ask how you found the colonoscopy? I cried my way through my sigmoidoscopy - it was so painful and I'm nervous for a colonoscopy now. I will definitely be having sedation but I heard you can still feel it you just might not remember it afterwards? I hope you can find out soon and start some treatment to feel better - I read that colitis can be managed well enough so hopefully that's the case

Actually with the fibroid I went to then GP and he organised an ultrasound at the GPs office, it was a private one but £50 or so. Maybe worth asking GP if they can look into fibroids, that is not an urgent thing but if it is one of those would explain symptoms though still do cancer checks.

There is a cancer support thread on general health as well you can join going through checks if it would help, though its not that busy atm but there may be someone on there with bowel cancer.

Without wishing to scare you, you should definitely be on the urgent two week referral for a colonoscopy with those symptoms. Please do not be fobbed off. You must advocate for yourself and insist on an immediate referral or make an appointment privately. Do not wait.

@FoxNet I was told I'd need a colonoscopy on November 17th and still nothing. I've called the bowel screening department at hospital every day from then and been told they're too busy to deal with me and I'm on a list theyre not making appointments for at the moment and to contact my GP to get a new referral. I then did that and it was sent early December (can't remember the exact date) and I callled hospital again and they said they had the new referral but still weren't making appointments for the list I was on. They keep saying if my symptoms are persevering/worsening to let them know and they'll get a consultant to upgrade me, which I've told them is the case every time as they are (the indigestion and pressure etc are new) then get told they'll call me back and nothing. It then repeats the next day when I call back and so on. I just don't know what else to do. I considered presenting at A&E when the pain has been really bad but I know they're already stressed and overstretched and they probably can't make things go quicker but it's just unbearable and I feel like no one believes me or is taking me seriously

@babachic

I'm sorry, that must be really hard. I've experienced similar caring for my husband post his diagnosis and I'm currently having tests due to some persisting abdominal discomfort. Unless you can get anywhere privately, A&E is an option for a CT which may kick things into gear. They system is creaking but you need to be taken seriously and helped. You shouldn't be in this sort of co dirip without knowing what's happening.

@babachic I didn't find the colonoscopy painful at all. I actually found it quite fascinating to see the screen and the endoscopist pointed out everything and explained what she was doing. I had no sedation or painkillers just some iv buscopan. I don't have any symptoms like pain or diarrhoea with my colitis. It was picked up as a result of some blood tests for something else. I do have bleeding from my bowel as I have multiple pseudopolyps which has made me anaemic. I hope you manage to get an appointment soon.

I would be tempted to try A&E though it is horrendous atm, really long waits, full of people with covid with little distancing but I have got immediate CTs through A&E before and you have tried the route you are supposed to and have very severe symptoms. I do not know what system is in Scotland but in England GP can refer to a different hospital and can tell wait times if you can travel further and other hospital have more availability. Even with stage 3 cancer I have been given big delays at first until I complained, system needs a massive cash injection, more beds and more staff. Raise with your MSP too if you have time.

Maybe bit leftfield but have you been checked for Coeliac Disease?

@babachic how are you getting on? Have you managed to be seen yet?

Ulcerative Colitis has almost identical symptoms for my family member with it.

They also have Crohns disease and coelaic disease as well though so its difficult to know which one it is at any given time.

You're not pregnant, are you? No periods, swollen abdomen, indigestion..?

@Squiffy01 hello, symptoms still the same but back to work now so trying to push through. Still not been seen and I haven't been able to get through on the phone lines now - it just keeps ringing out. Just fed up.