May I ask what peoples symptoms were before having a colonoscopy in terms of pain or bleeding or anything else? Was your bleeding small or large amounts? I’m having large amounts of bright red blood. It’s not just when I wipe it turns the whole toilet bowl water bright red and sometimes there’s blood clots. Pain is severe in my back passage too like a burning stinging and that’s not when I go to the toilet that’s just all of the time. If anything when I go to the toilet I get a relief from pain afterwards for a short time but then it returns. Ive also been anaemic for a while. I’m only in my 30s so GP has been sending me away for quite a few months despite me going back over and over again but I’ve finally been referred for a colonoscopy and waiting for an appointment now. Thank you 

Hi Daisy,  hopefully you won't have too long to wait for the colonoscopy now you have finally been referred..

A small amount of blood in the toilet bowl can look very alarming being bright red means it's fresh and not old [ dark coloured] blood. Haemorrhoids can be internal and external and capable of producing blood when having a BM...hopefully you will get some answers after the procedure. 

For me it was a marked change in my bowel habits, accompanied by distended stomach, low down period-type pains  [ hysterectomy 45 years ago]  sensation of needing to pass motion even after a BM. Five positive qFIT results and referred to Colorectal Consultant. Appointment for colonoscopy last June which had to be cancelled.. follow up appt missed until Nov colonoscopy 17th Dec 24 ...20 week waiting list for results.  There has been no change,  multiple BM,  pain, loss of appetite,  blood ( not all the time) the feeling of needing to have a BM.. seven times since 10 am..now 4.15 p.m

Thinking of you..

.

My apologies if I’m missing anyone else’s journey in this thread but James, yours really struck me. You just seem to have had the rug pulled out from under you completely but you got up, dusted yourself off and asked “what’s next?”. You’re handling it all remarkably well. I’m sure you have the odd wobble here and there but as a complete stranger who hasn’t walked in your shoes yet,  you are properly inspirational

i came here the other day to post my very  positive tale of both my colonoscopy and upper GI endoscopy in the last weeks  (both were absolutely fine experiences and wish I hadn’t read so many horror stories) but as I’m being flung through the NHS at terrifyingly lightening speed for tests I’m glad to know if I get bad new next week not everyone falls apart like I expect I would. 

The very best to you - and any others I may have missed - you’ll kick it’s *** so hard. 

Hi James4000...just wanted you to know I am thinking of you,  stay strong and be kind to yourself xx

Good morning 

Sorry I've been quiet on here. Sometimes that's because I've been trying to get on with things normally; other times I'm struggling. Normal, I guess.

 FishCalledFluffy thanks for your kind words. I hope your journey moves in the right direction, despite the bumps in the road.

 Eastendgirl tangoPotter thanks for all your ongoing support and kindness.

So, my update. I was supposed to have round 2 of chemo last week, got deferred to today, and this morning deferred again. Basically, they take 4 blood readings and 1 of mine (neutrophils) is way too low to have more chemo until it recovers. I'm feeling fine physically (bit of a sore throat, slight headache) but mentally I'm very down. Want to get on with the chemo and shrink the tumour, but have to wait again. And I'm worried about my general health with the very low neutrophils- I was told it can happen but I am concerned the levels are not recovering still. Anyone know more about this?

On the plus side, my bowel movements are much better. Less frequent, easier, etc. I'm telling myself that the 1st round of chemo already shrunk the tumour a bit, which is helping that. Don't know how likely that is, but everything is connected, mind and body, so trying to be positive.

Just hard to feel positive today, after another delay in getting well and my blood showing my immune system has been so smashed, even though I feel ok physically.

I hope you're all doing alright. Let us know how you're getting on

X

James4000... so good to hear from you, I can understand how disappointed and frustrated you must be feeling with yet another delay but.. nothing to be done but staying positive..not easy but essenti for the journey ahead the impact on the immune system is expected unfortunately,  the effects of a cocktail of chemicals on your body takes it's toll. Really positive to hear B.M are easier and m going with you..the 1st round of chemo has begun it's work  Our mind is so strong .. staying clear of the negative thoughts [ never said it is easy]  but really essential.. finding a positive in every day.. however small.. for me it's the birdsong,  the bus ess of nest building going on in the hedgerow,  buds opening,  bulbs emerging from the warming soil.. I put the snow shovels away yesterday.. THAT'S positive,  living in Scotland

Take care James, sending gentle hugs  x

James4000 lovely to hear from you James  I can understand how frustrated you must be feeling.  I’m still waiting for a date for my operation just worried my tumour might be getting bigger while I’m waiting  I keep going for different tests had my heart scanned on Monday to see if I was ok for the op took an hour to do ultrasound on my heart  then rigged up to E C G  we will get there James in the end then we will be well again. My thoughts are with you  keep us posted as we care  xx

Afternoon all

So after 2 delays, it's 3rd time lucky. Having my second round of chemo now.

Hopefully my case will reassure some who may be approaching chemo yourselves. Basically I've felt ok, but my blood/immune system took a bit of a battering. There are 4 main blood readings they're tracking (don't know if that's the case for all treatments). My neutrophils dropped lower each week, but yesterday they had hugely bounced back into the normal range and we'll above thr minimum. So I've having 2nd chemo now.

Hopefully side effects will be minor, like last time. All was fine except I got a high temp the first time round, but it soon dropped and the barage of tests came back OK.

Fingers crossed, another step today towards recovery and cure.

How is everyone else doing? Do you have dates for treatments and ops yet?

J x

Hi J how wonderful to hear from you.. obviously been on my mind and I have been that you would be getting your next round of chemo the delays must feel so frustrating but..you got there, hoping any side effects will be minor and shirt lived...

I'm still waiting for my CT which is on an 8 week wait for urgent referral  [4 March] also for an Ultrasound for an unrelated symptom,  also 8 week wait.. ♀️ ♀️

Stay strong and positive James4000,  sending gentle hugs x

James4000 hi James I’m so pleased things are finally going in the right direction for you and of course we have been thinking about you   My surgeon is happy with all my tests the nurse phoned me today to say he getting back to me with a date for my operation she said things will soon start to happen quickly I’m really nervous about having operation but I know then hopefully will be on the road to recovery  dreading bowel prep lol   Keep in touch x

Hi both

Lovely to hear from you and great to hear some progress is in sight even if you're still waiting for form dates.

Eastend, sounds like you should get scans this month. I hope they come soon, reveal news isn't too bad and you're soon having treatment.

Tango, great that you'll have the op soon. I know the bowel prep is a dreaded step for you. Will be thinking of you and sending you prayers and strength on the day.

J

Hi J and thanku for your kind words and good wishes...getting diagnosis will answer questions after 18 months of investigation [ re colorectal ]  the ultrasound and Orthopaedic referral is for a recent unrelated symptom... treatment is unlikely due to my autoimmune conditions..

Take care J, thinking of you and sending very best wishes x

Hi J and thanku for your kind words and good wishes...getting diagnosis will answer questions after 18 months of investigation [ re colorectal ]  the ultrasound and Orthopaedic referral is for a recent unrelated symptom... treatment is unlikely due to my autoimmune conditions..

Take care J, thinking of you and sending very best wishes x