Hi

Sorry you are going through all this, it's so worrying until a reason for the pain is found.

I have had bowel cancer twice in the past 5 years and as we speak I am waiting for a call from my specialist nurses about a new pain/discomfort.

In my experience a colonoscopy and CT are the 2 main tests to detect bowel cancer, found mine both times. The 'stool' sample test I don't trust as both times I had cancer they came back ok! On the other hand I have met people whose bowel cancer was found by this randomly at age 60 when everyone gets sent a test.

You know your own body, don't give up pushing the Dr's for an answer. The blood wants investigating too, are you anaemic because of this?

I hope you get the answers soon, the anxiety of not getting answers is awful, I am going through lot's of it at the moment, we always imagine the worst.

Top tip..... don't look things up on the internet... we all do it and every symptom has a cancer answer that we tend to stick with rather than all the other possibilities. x

Hi there, thanks so much for replying to me - I appreciate that more than you know. I’m so anxious, I’m trying to keep off the internet but it’s hard cause I do get comfort from it in a way but I know it’s not healthy being online all the time. I’m really sorry to hear about your cancers, do you mind me asking what your initial symptoms were? It’s a tough one with me cause my platelets were high for a couple of weeks and went back to normal soon after. I’m not anemic,not diabetic, not celiac etc - haven’t been checked for Inflammatory bowel disease tho, it’s hard to add the dots together. The main worry is the pain on right hand side it’s so sharp and painful and the indigestion tummy ache and chest pain. I hate being in limbo but I understand the surgery is best way to find out more, so worried tho. How are you feeling at the moment?

So, I'll try keep this as short as I can....

I was being told for 18 months that I had IBS by 6 Drs in that time. (I since moved GP practice).

Symptoms were indegestion and you know the ibs tv ad where there's the knotting pain, that. Low ferratin levels so on iron tablets. Then one day I got a pain in my side/front, thought it was appendict so went to A&E, pain here is usually gall stones they said, had an ultrasound but gall bladder was ok so they admitted me for more tests and it was found by CT that I had a mass in my bowel, could have been a number of things so had colonoscopy and it was confirmed.

Second time 3 years later.... I started having discomfort around the area where small/large bowel was joined after first op. Iron levels dropped, no indegestion this time, marroon coloured soft poo.

It had come back on the joining so more surgery followed by chemo.

My specialist nurse just rang me back, my CT in june was fine and so was my colonoscopy/biopsy 3 weeks ago. Good news but no explanation for the new issue. So still some worry but I won't stop until I have an answer for it.

I found both times anaemia was a big part, my gp said I must be bleeding somewhere for iron to keep dropping as soon as I stopped the iron tablets.

Hope that helped a little, good luck and try not to worry too much. (says me........ the worst worrier ever...)

when you were saying about your initial symptoms first time around it sounds like me with the indigestion and I get a tummy middle pain when indigestion comes on and then if goes. Did your indigestion come and go the first time around? The pains I get on my side sound also familiar as they initially thought I had gallstones but it was clear, I get sharp pain on top and bottom right, was it like a stabbing pain for you? Yeah my stools were like a maroon colour- did you get much ? Mine were very small bits. Only thing I can say is I don’t have anemia. I really hope all goes well for you, are any of the symptoms similar to the other two times. Have you got it checked out yet? 

when you were saying about your initial symptoms first time around it sounds like me with the indigestion and I get a tummy middle pain when indigestion comes on and then if goes. Did your indigestion come and go the first time around? The pains I get on my side sound also familiar as they initially thought I had gallstones but it was clear, I get sharp pain on top and bottom right, was it like a stabbing pain for you? Yeah my stools were like a maroon colour- did you get much ? Mine were very small bits. Only thing I can say is I don’t have anemia. I really hope all goes well for you, are any of the symptoms similar to the other two times. Have you got it checked out yet? 

Indigestion as I remember was very often, got really bad. Also I felt bloated both times. The middle pain used to come and go quite quickly and for a few seconds was really bad but then eased until the next time.

Sorry I can't remember if you said if you had a colonoscopy? If not I would push for one soon. That way you will know one way or the other. I don't want to worry you but if it is anything the sooner it's found the easier to treat.

Every morning when I got up I had to go straight to the loo, as if it was there waiting.

The bad pain in my side went while I was in hospital, so glad I didn't just think whatever it was had gone.I remember the pain in my side being so bad I had to press on it.

i have a Dr's appointment tomorrow, not my usual Dr who has been through everything second time round but I booked one with her for next week in case I need it.

One thing I have learn't is you have to do alot of the work yourself to get to the people you need to see. Keep pestering and colonoscopy will find anything.

ah I hope your Dr appt goes well tomorrow. Yeah Iv been pushing for a few months now,got an endoscopy and colonoscopy on September 11th. Thanks for your messages, it’s nice to have different take on it all.

Hi nica, i have had similar symptoms to you with right side abdominal pain and my platelet count was high. I have had my breasts, overies, womb and lungs checked. I have also had an ultrasound covering spleen, pancreas, gallbladder, liver and kidneys. All clear so far. I am waiting on a endoscopy and colonoscopy, but it is a 10 week wait where I am. 

How did your appointment go on the 11th? 

Hi there, thanks for your reply.

Yes, it's all very odd isn't it. I had upper abdominal scan, and pelvic scan but bloods have some back inflamed sometimes but then go back to normal. They wanted colonoscopy and endoscopy to rule that side out, cause it seems like it was all pointing to that. I had it done and they found a small hyperplastic polyp, so it was not normal but he said it was benign. They've done biopsies on colon so I'll get results back soon. Also, in endoscopy they found hiatus hernia, which explains the indigestion pain I was getting but I'm still getting right sided pain and bad headaches at right side of head. The doctor at my last appt, said if all comes back clear we may need to go down the muscular route. I still think it's something to do with my bowel tho, as I was bleeding and pain feels like it's in the colon. I guess I'll have to wait for results. Did your placelet count go back to normal? I still don't know why I have a high ca125, it's slightly over at 41, and it was 45, so there's no explination for that either. I've noticed a lump on my bottom also lately, sinced colonoscopy which scares me. they would have been it before but it's only come on sincde, so I'll need to go to dr to get that checked too. Any word on a date yet for your endoscopy and colonoscopy? Just to reasure you, it wasn;'t as bad as I thought it was going to be :)

I'm pleased some good news for you and i hope your biopsy come back ok. 

No date for mine as yet, I am dreading it but also cannot wait for it to be done. 

Platelet count went back to high normal range. My bloodcount was low too which has returned to normal. Neither of which they can figure out why. They did put me on iron tablets but I had an awful reaction to them and only stayed on them for 5 days so that cannot account for it. 

I was convinced the pain was gallbladder but ultrasound was clear. Rather then maroon stool i was sick and was convinced that it was blood as red and coffee like grains but the gastroenterologist is not convinced it was said it was probably what i had eaten. 

It is so hard not knowing and it has caused me to be very anxious. So fingers crossed we find out what is going on and we both get good results soon!