Diagnostic limbo - advice for getting answers?

Hi all,

First off: sorry if this kind of a post isn't allowed here, or I'm violating some kind of rule. If so, please let me know and I'll delete it and sling my hook.

I'm a 29 year old man who has had a myriad of complicated health issues for several years now and is currently back on the diagnostic pathway for possible bowel cancer. I'm trying to get a colonoscopy arranged but haven't had a date through yet and sadly think it could be a few months before I can get this booked.

In the meantime, I'm trying to learn more about how I can rule in or out bowel cancer as quickly as possible and also get some advice around what sort of tests I should be looking at. I understand no one on the internet can, and many wouldn't want, to diagnose me, but any guidance or past experience kind people can share would be very appreciated - I'm in a bit of a mental rut why now and unsure of the way forward.

Symptoms

My issues began in mid 2016 when I was taking a medication of all things which caused mild yet pervasive changes to the texture of the skin and muscles all over my body and some other issues like headaches and a feeling of sickness and nausea. Frustratingly, these did not get much better after ceasing the drug and in fact the nausea feelings continued to very slowly worsen.

During the same period I experienced a shift in my bowel habits. It was like some muscles in my lower abs/rectal area weren't contracting properly. Like I would go to tense and push out but nothing would happen. I could still pass stools but they seemed to come out more by gravity or air pushing them out than the muscles, if that makes sense.

I was obviously concerned about this but after a few preliminary investigations with doctors was told there was nothing they could do so I tried to get on with life. But during the next few years I noticed I was feeling fuller in my tummy and experiencing mild bloating. The constipation/trouble passing stools did not improve but if anything got very slowly worse and I noticed increasing, though at this point still mild, weakness in my core.

In mid 2018, I suddenly began experiencing the same weird thing with my muscles in my lower neck as I lost the ability to burp normally. I began swallowing tonnes of air regularly and having these compulsive half burp half hiccup things, literally hundreds a day. I began suffering from bad acid reflux. With these I had episodes of cramping in my lower stomach and shooting pains there and also in my temples.

In early to mid 2019 I started getting aggressive muscle twitching and spasming all over my body but particularly in my ab area. I also had strange attacks of tingling and muscles not coordinating in my tongue and mouth. The reflux remained bad and a near constant. My constipation worsened and I began getting blood in my stool which went on intermittently for about 9 months before stopping.

Throughout the next few years, I have continued to have progressive muscle weakness and mild wasting across my body with snapping sensations in and around my muscles, odd bits of tingling and brutal cramps. The abdominal pain, bloating and stool pushing difficulties have worsened along with a large drop in my core strength and this area does seem to be the focal point. The feelings of near permanent nausea have also continued and increased along with excessive sweating, particularly at night and also muscle shaking. 

I have been having troubles with unusual and varying stool appearance - thick and dark brown colour, diohorrea (spelling!) and flat and then ultra thin ribbony/pencil stools which are about the size of my pinky or pointing finger. This, like all my other problems, has been going on for several years now and maybe began sometime in 2021.

I also suffer from foul smelling farts and stools, reduced continence (anal but also for peeing as well - I'm not incontinent but the urge comes more frequently and powerfully for both and is harder to resist) and near constant gurgling in my abdominal region. 

This is a whistle stop tour of some of my more concerning symptoms from a possible bowel cancer perspective but there are others, which I would be happy to go into if asked.

Investigations

I've had a lot of different checks and investigations to date, but none of the gold standard checks to rule out bowel or other cancers. Because of the neurological nature of a lot of my symptoms this has been checked thoroughly but I've only lighted on a diagnosis of functional neurological disorder. Neurologists acknowledge I have weakness in my legs and arms and, to a lesser extent, my hands, but all this is too mild, they say, to really qualify for a serious neurological condition and I don't have EMG readings and so on that support this either. There was some concern early on about MND, and this is something that still worries me, but rationally the dial appears to be moving away from that, especially the longer I go on but only deteriorate very slowly.

I faced a lot of dismissal from doctors early on, even when my only symptoms were constipation/bowel based and acid reflux based and even when I had this period of frequent blood in stools I never got any further tests.

I was on the list for a colonoscopy several years ago but I never got off it and recently found out the NHS had wrongly marked this as completed. I have had a colonic transit study - where you swallow the capsules and they see where they've got in your body - and I think I've had someone peer up my butt with a microscope of sorts. This would have been in 2021. I have had an occult fecal test which showed nothing recently. I have had an ultrasound of my (very) upper ab area (basically bottom of the pecs), checking for a possible hernia, which showed neither a hernia nor anything else. 

I have had brain and spine MRIs to rule out MS, which neuros were worried about briefly. I have had various x-rays for neck issues but nothing that would really look in detail at my bowels or ab area. 

Concerns

Obviously all the symptoms I'm having are concerning me and are having quite a big impact on my life. I have worsening problems with fatigue, to the extent that some days I will go to work come home and literally just have to lie on my bed because of how little energy I have and how weak my muscles feel. Muscle weakness in varying areas makes certain tasks difficult, such as squatting on the toilet and cutting hard vegetables. Handwriting too is tough as my hands cramp and lose grip on the pen after a short while. 

My bowel problems are some of the most concerning from a diagnostic standpoint, however. I am acutely aware that a number of these overlap hard with bowel cancer symptoms and that the spread of symptoms from there throughout the torso and wider body could be explained by cancer seeding and spreading, following quite predictable patterns. I'm aware that I never got proper tests to rule this out when I first began having issues several years ago and am starting to worry about this quite a lot.

I am getting tests done with doctors but these are going slowly and there have been a lot of mistakes and delays (some from me but mostly from the NHS, which has really dropped the ball for me) and I'm feeling very lost in the system.

I am also, obviously, beginning to get very afraid about what the tests will find. I have had issues that could - and I appreciate it still is only 'could' - be from bowel cancer since definitely mid 2018, and possibly as far back as 2016. If it's that then obviously I will be in a very bad way as it will have had 7 or 9 years of unchecked progression. The various missed opportunities and diagnostic failures so far are playing on my mind a lot as well as my overall prognosis.

I'm not sure, as I say, whether my post is allowed on this forum as I'm only in the diagnostic process - having been advised by some doctors that bowel cancer is worth checking for, even though the paper odds are low - but if it is allowed and anyone can offer advice, help, reassurance, I'd be grateful. 

I've been struggling with various health issues for several years now and this is one of the few stones that hasn't yet been turned over and makes a grim amount of sense given my symptoms and where they originated from.

Thank you.