Frustration at similar pre-diagnosis symptoms.

[CraigJ]

New member to colon-club here, even though I only bring roughly half of it.
I copy and pasted this thread from the CR thread I made on their site, hoping I could also try to find some answers and reassurance here.

My name is Craig; I'm 26 and roughly a year a go I was diagnosed with Stage 3c bowel cancer after an emergency operation that ended up as a right hemi-colectomy along with my appendix and ileocecal valve. 13/14 lymph nodes were affected (I know this is quite a lot), and I went through 8/12 preventative cycles of folfox. I'm luckily enough to be considered curative at this point as I'm currently NED.

I've had a PET scan and about 5 CT scans since then I have some similar symptoms as I did before the surgery. My last CT scan was just over a month a go and that was clear. Despite this, I continue to get a large amount of discomfort on my right side where the surgery was. When I bend over it feels like there's a ball in my lower abdomen and if I stretch it there's some pain. I also get burning sensations and what I feel like are small bands of muscle going along my right abdomen to the back just between my ribs and pelvis. I've had this numerous times since the surgery/chemo and the CT scans never bring anything up, and I understand that they can't see adhesions or such. I've also had a few other similar symptoms like loud bowel sounds especially in the surgical area, random bouts of sweating (no night-time sweating yet which I had a lot of before my diagnosis), rotating from loose stools to constipation that usually require laxatives or even enemas in extreme situations, a chronic cough and just a general feeling of constant sensation and discomfort like my nerves are constantly active. I'm wondering if any-else in my position has suffered similar problems post-surgery/chemo, because it's incredibly hard to keep my mind off reoccurrence when I keep having these symptoms, even when my Oncologist and Surgeon reassure me.

My current medication is Docusate stool softener and Amitriptyline 10mg to 30mg a night. I have booked an appointment with my GP next week to talk to them about the possibilities of investigating further with my surgeon.

Any information would be much appreciated.

Thanks for your time.

[Robino1]

Have they talked about doing a colonoscopy? If not, I would push to have one done.

[CraigJ]

I had a sigmoidoscopy in january that went all the way up my descending colon and through part of my transverse colon, but didn't go any further. That came back clear apart from a bit of fecal matter mimicking a polyp near my rectum.

Of-course this didn't go all the way to my resection site and beyond so I didn't get a clear picture there. Reason for this I wasn't suffering any particular symptoms at that point. I'll bring it up with my GP, though.

[peanut_8]

Hi Craig welcome to Colon Talk.

Sorry to hear about your diagnosis, and current issues. Have you been getting blood tests along with your CT scans? How are the levels? Especially the liver function levels, and CEA. How long have you had the cough? Is it a productive cough? Is it possibly allergy related?

Lots of us here have recurrent GI issues like constipation and diarrhea, and there are ways to manage the symptoms, like keeping a food diary and noting things that may be causing problems. Or taking a fiber supplement like Metamucil which can help with constipation and diarrhea both. For extreme symptoms some folks have resorted to daily enemas. You can find more info on this using the search feature.

Have you thought about something like CBD oil for your 'general feeling of constant sensation and discomfort like your nerves are constantly active'? On the advice of my physician I recently started CBE oil for insomnia, and am impressed. It seems to have potential for issues like you are experiencing.

Glad to hear that you've booked an appointment with your Dr.

Best Wishes,
peanut

[CraigJ]

I had a blood test with my last CT scan and excluding slightly low red cell count (Doctor said he wasn't too worried as it wasn't near enough for anemia) all was okay. He never brought up my CEA level so I assume it was all okay. The cough I've had pretty much for months now, even during the chemo. I'm beginning to get worried it's chronic because of that.

I used CBD oil quite a lot during chemo, but the problem is it's expensive in the UK and I was off work for a lengthy amount of time. I do take a low dose of drops now and then, and I also take olive leaf extract.

I'll ask for another blood test from my Doctor on thursday, and see about the possibility of investigating further in the problems. I posted this on here mainly to see if anyone else had suffered similar problems post-bowel surgery and chemotherapy.

Cheers.

[DarknessEmbraced]

Welcome to the group!*hugs* Sorry you're having a hard time! I hope that your doctor will refer you for a ct scan so you can get answers.*hugs*

[CraigJ]

Thank you!

I'm worried I've had too many CT scans, since I've had about 5 CT and 1 PET scan since my surgery, which is quite a few. My last scan was clear 24th of march, which was 44 days a go, and I'm not 100% sure but I can't imagine something would've grown in that time to cause noticeable issues.