"Chronic pain & progressive bowel condition"

In early 2022 I became concerned regarding pain and changed bowel habits. Unaware that some months previously after a endoscopy signs of coeliac were discovered.

At the same time I attempted to see a GP and was referred to a nurse due to feeling something protruding from my back passage. I later discovered everything was likely related. They initially were dismissive of my symptoms and stated the only thing they could do was refer me to a women's health physio for pelvic floor.

I attended there soon after and the physio was so concerned that they made a direct referral to a colorectal surgeon, identifying the problem as a possible bowel prolapse. The physio was attentive and caring and genuinely concerned.

I met a wondered colorectal surgeon at the Vale of Leven Hospital, my concerns were immediately validated. I was listened to, not judged and referred on for appropriate tests with a suspected rectal intussusception.

I then had to wait many months for the tests due to backlogs in the NHS post covid. Over a year after first attending an appointment to raise my concerns I was finally seen by relevant departments for my final test. I took extremely unwell in between and required hospitalisation 3 days.

This time under the care of different medics at the Royal Alexandra Hospital I was left feeling misunderstood, judged & deemed physical stable enough to return home after some initial treatment & promise of follow up as an out patient. I was only prioritised again once my colorectal surgeon stepped in.

I was examined under anaesthetic (EUA) and a benign tumour was discovered. A direct result of the delay in my intussusception being operated on. I now have a severely ulcerated rectum and am in chronic pain. A referral to a more specialised colorectal surgeon at the Royal took many months for me to get an appointment in November 2023.

There has been no progress towards scheduling an operative resolve - which is absolutely the only and best intervention according to all medical sources and journals I have diligently read.

I have been told the waiting list even for this second EUA is over a year. Over a year just so the consultant can examine me under anaesthetic in a day procedure to decide next steps. Meantime I have been given a Coloplast machine to try and ease symptoms while I wait. At exorbitant cost to the NHS. This was sent to me in February.

It took 3 months for the 1 available nurse to have an appointment available to see me. The pain is now chronic. 1 year on I am on daily painkillers and am almost daily incontinent and exhausted. I dread to think what state I will be in one more year down the line. More unwell with significantly more damage to my bowel and probably costing more to the system.

I am only in my early forties. I have 3 children who I want and need to be well for. Throughout this I have remained as productive a working mother as I can, trying to struggle on. I have managed to continually find the positive in many very difficult situations, restricted now to being near home and facilities. However I am now mentally, physically and emotionally exhausted and I need someone to really listen and help.

My symptoms are progressively getting worse. I have no one who can apparently move things on or value me and my life as a priority in the system. I have made upwards of 40 phone calls to secretaries, central appointments, departments, the GP etc in the last 2 years constantly having to chase appointments. I feel totally and utterly abandoned by NHS GGC.

Time since noticing something was wrong is 2 years and 6 months. Time taken to be referred to a colorectal surgeon in the first instance - 8 months. By the physio because the GP and nurse were dismissive .

Time taken to get the required tests to confirm diagnosis - 10 months.

Time since first seeing new specialist consultant to now - 7 months. And nothing has changed.

The ulcers are continually causing problematic symptoms and the pain in my bowel and digestive system is chronic now. Debilitating and frustrating.

I also feel that judgement is occasionally passed as I have a history of 2 time limited moderately poor episodes of mental health. I have however paid for private psychotherapy for many years and am in fact extremely well now in respect of my mental well being. I have held down an well paid professional role for a well known employer in Scotland and have an excellent professional reputation.

Even with my ability to advocate reasonably well for myself I am now at a complete loss as to how to access any kind of compassionate, thorough and methodical approach to joining up all my symptoms and diagnoses.

I have recently discovered that I have other likely connected autoimmune disorders but am struggling with a lack of co-ordinated care and understanding about these issues also. I have undertaken extensive reading and privately funded my nutritional supplements now for 1 year having been told I was not eligible to have these prescribed on the NHS.

During my struggles I have encountered some wonderful individual staff trying their best but overall I am finding myself increasingly desperate & so very saddened by this experience in NHS GGC and have been shocked at how many times I have discovered I was supposed to be 'on a waiting list' but on further examination, probing and questioning discovered I was not.

How can it be that I am waiting 7 months and now being told it could be another year before the surgeon can even examine me under anaesthetic never mind plan for an operation which has good success rates & would improve my quality of life for potentially some years.

Please please take the time to listen to my awful story of a lack of joined up care through various departments and handovers & poor follow up. I do not write this lightly or without due consideration.