Buprenorphine Patch

[Nonameme]

Buprenorphine patch 10mg prescribed for chronic pain 18 months ago. No follow up as to reactions, efficacy etc. Did have skin reactions but decided to ‘grin and bear it’. Personally I did not feel I was getting any pain relief and decided to continue to occasionally take my Cocodamol. Have queried pain relief on several occasions and been told I am on the max pain relief and there is nowhere to go.

In July 2022 I started with chronic diarrhoea and after three weeks saw a different GP who organised lots of tests which thankfully found nothing sinister, but neither did they explain the continuing diarrhoea.

There followed months and months, uncontrollable, bowel problems, rendering me housebound, and despite private gastroenterology appointments and investigations nothing could be found apart from diverticulitis which they all decided to blame and offered no help.

Fast forward to December last year and I was yet again referred under the two week cancer protocol to see a colorectal surgeon as a new GP was extremely concerned by the results of my blood test.

At this appointment I was spoken to like a naughty child questioning right from the start how I even managed to get a referral given all the investigations I had had, although no mention was made of the fact that I had been hospitalised with a severe C Diff infection in August 2023.

He told me to go and live my life, what was left of it. There’s nothing we can do about it if it gets too unbearable which it has been for months. There’s only thing for to-remove my bowel and give me a bag so let him know if that’s the case. End of consultation.

This absolutely floored me and incensed My sister who was at the consultation with Me and we decided it was the end of any further medical interventions, and we would manage on our own,

Over Christmas and early January. I suffered immensely with uncontrollable painful diarrhoea and was very close to the end. I have lost five stone which okay I needed but not Like this, I have no energy can hardly walk due to pain and frailty now and I’m just ready to give up.

As a side note after a two year wait with symptoms I was diagnosed with TMJ just over a year ago and I’m still awaiting an appointment with maxofacial.

The Pain is agony I cannot sleep. I cannot rest my head or anything and I really do feel I meet the criteria for PMR, but that’s another problem just adds to my overall feelings of cant go on.

I had slowly been tailoring off all of my medication apart from my Metformin, as I really did feel Lanzanapole had a lot to answer for and I had been told to stop this whilst in hospital with C diff.

I took the final decision not to use the patch two weeks ago, and I have not had diarrhoea since! Obviously, I am suffering a slight increase in pain, but nothing like I expected so they weren’t really being that effective anyway.

The stomach pains were constant and Along with the diarrhoea have gone so can I assume this is not just a coincidence but could that have been caused by patch all along

I have an appointment with my GP next week because just prior to Christmas and after the consultants appointment I just lost it over the telephone when I couldn’t get any help and I’ve now been diagnosed without Face-to-face with being mentally ill and at risk.

So prior to disappointment, I just wondered if anybody had any info on this and what they think has happened. Am I allergic to the patch have they all been mistreating me for months and what should I say /do at the appointment.

Sorry, this is so long-winded, but I had to put the full story for people to understand what I am asking. Thank you in advance.

[BabsyWabsy]

You are having a tough time. I just wondered if you have had any biopsies taken? I am in your age group, and in 2018 I had a colonoscopy because of intractable diarrhoea. Biopsies showed microscopic colitis, very common in females in our age group. Is this something you have had?

[Nonameme in reply to BabsyWabsy]

Thanks for your comments. I have had biopsies and at the time of c diff I asked why I was bleeding pr and they said it was the colitis. According to all tests many things are below or above what they consider normal but everyone dismisses this as diabetes/weight/age related and therefore not important enough to investigate further except new GP who was extremely worried and sent me to the previously mentioned consultant. I have been unable to speak with her since and no report from said consultant appears in my notes.

Having lost both my mother and middle daughter to proven medical negligence I think it entirely reasonable to understand my anxiety. My bladder cancer was ‘diagnosed’ as a bladder stone and I waited over 6 months for investigation and then oh dear! they said the tumours have been there so long they have calcified! and adding insult to injury at the time of my daughter’s death I was shocked to fond the same surgeon involved. Because of where I live there is only one hospital so there is no choice.

[BabsyWabsy in reply to Nonameme]

Good grief, no wonder you are anxious. I don't understand why they are so dismissive, especially when you have already been a cancer patient. Is your choice of GPs also limited? I'm just thinking fresh eyes might help if possible. It took years to get my gut issues taken seriously. In the end, it was a locum who referred me to a gastro. It is frustrating when you don't feel listened to.

[BabsyWabsy in reply to BabsyWabsy]

Another thought. Have you been tested for Bile Acid Malabsorption? It seems to be little known by GPs.

[Nonameme in reply to BabsyWabsy]

I paid to see gastro privately as GP would not refer and he did test for it but it was never mentioned in the results. I have type 2 Diabetes well controlled have been anaemic for years with no known cause and have been treated for low B. 12.

[BabsyWabsy in reply to Nonameme]

I assume you have been tested for coeliac? That can cause anaemia and low B12 and other nutrients.

[xjrs]

Is the appointment to find out whether Buprenorphine caused your gastro problems and whether they should have considered whether this was affecting your health much earlier? If this is the case and you have a complaint, you could always get support from PALS (patient advice and liaison service):

nhs.uk/nhs-services/hospita...

[Nonameme in reply to xjrs]

Coeliac was mentioned as not positive but possible both by Gastro and whilst in hospital but no treatments were ever offered. Appointment is to deal with my ‘mental illness’ as diagnosed during a very stressful phone call following Consultant’s appointment. I had not requested this appointment but was given it following my last e consult when I Informed the surgery that as I had been told to get on with it I was not asking for any help just wanting them to add to my notes that I had had another flare of rectal bleeding and had lost 12 pounds weight over Christmas. I was e mailed the appointment. I then read my records which stated following the phone call after seeing consultant during which I was extremely distressed theGP had diagnosed me with mental illness I will check my records and post back the exact term used

[Nonameme in reply to Nonameme]

EUPD is the term she has used.

[xjrs in reply to Nonameme]

Very frustrating. What they forget to realise is that when someone has been through so much and hasn't been dealt with so well, it is natural that they are going to get upset.

[Fergie53]

Hello, I’m so sorry for you, it sounds like you’ve not been treated holistically at all and medics just rude to you!

I’ve had no experience of that patch but sounds like you’ve had a reaction to it, I would carry on with your other medication.. x

[Nonameme in reply to Fergie53]

Thank you

[MyStar86]

So sorry to hear of your awful experience, I just wondered did all your bowel issues just completely go away the day after you took the patch off? Did you not get any withdrawal symptoms just coming off it so quickly after being on it for so long? Did the bowel issues start as soon as you started the patch? Did you ever have any bowel issues prior to using the patch? Did you get any other side effects from the patches? Sounds like you have done amazing to cope so well without needing the patch and coming off has helped you so much. I hope you get the help that you need soon

[Nonameme in reply to MyStar86]

Thank you for your reply. I had never been told the patch could be involved but lost all hope after interaction with Consultant. I had never been entirely convinced that I was actually getting much if any pain relief anyway. It was sheer hopelessness that made me decide not to replace one week so I just did not.

No side effects were noticed with regard to withdrawal which did make me think they had never relieved any pain and yes stomach pain immediately dis appeared that day as did diarrhoea which has remained absent completely from that day also 18 days and counting. I am told I look better I feel better and have regained the will to live and also my appetite. Family have gained use of bathroom!

I do not know the exact date I was prescribed the patch I do know I was never monitored at any time. I believe the stomach problem started after first applied or within a few weeks but was never considered as a possible cause.

GP yesterday was surprised but would not consider any alternative pain relief option. Just saying never heard of that before will remember for next time.

Only other recognised side effect was skin problems around patch site.

For what I hope is an unrelated set of symptoms diagnosed after 3 years of suffering as TMJ over a year ago and still awaiting a maxofacial consultation I have now suggested to GP could this be PMR which she pondered and has ordered blood tests. Will wait and see what results from this. No appointments available for test at GP at present. Interestingly she has also stopped dead my sertraline which I have been on for over 4 years. She is same GP who diagnosed me as mentally ill but this was not mentioned during the interview.

On a side note a few years back she also stopped dead my zopiclone which should have been tappered. Again I suffered no side effects other than their efficacy when required. To this day sleep mostly evades me and I have always blamed this for my general malaise , but this was because of the core - action with morphine when prescribed following burst appendix and whilst in hospital I suffered night terrors and this was blamed. Obviously the morphine was sopped post hospital but she still felt the need to stop them

Sorry this is so long but I needed to answer your queries. Hope I have covered everything.