In January this year, following a routine blood test by my GP. It highlighted low ferritin levels.
After having completed a Fit-Test (faecal haemoglobin test), blood was found in the sample. I later went and had a CT Colonography. This highlighted four polyps in my colon.
After a lot of messing around due to a breakdown in communication by my local hospital, my GP finally made a referral to the QE Birmingham. (I always refer to the QE as being the home of my rebirth follwoing my iver transplant in 2016).
Last Thursday, and, wearing a pair of big boy/man pants, I went and had a colonoscopy. I had been dreading this procedure. But all the staff were just great, very professional and caring.
5-polyps were removed during the three-hour procedure. There are still some more baby polyps growing and I’ll need to go back and have these removed again next November. These polyps samples have now been sent off to confirm they are not cancerous, just have to wait for six weeks for the results.
So, what’s all this got to do with the liver then?
I went and searched for any possible connection between my liver transplant journey and the growth of these polyps. I came across a study that was published back in 2017 entitled, “Alcoholic liver disease is a strong predictor of colorectal polyps in liver transplant recipients”.
It is quite heavy read, but this report concludes with the following finding:
In summary, patients with end-stage liver disease may be at high risk of colorectal polyps before and after liver transplant, and screening should be continued in both contexts, although the frequency of endoscopic examination remains unknown after transplant. In our study, alcoholic liver disease strongly predicted post-transplant polyps, and patients with a history of alcoholic liver disease may possibly benefit from more intensive endoscopic surveillance. A larger prospective cohort study of OLT recipients is needed to better characterize the incidence and natural history of colorectal polyps, ultimately with the goal of developing adapted post-liver transplant screening recommendations.
I post this up for information only. It’s not my intention to scare or alarm anyone here. But as these polyps are painless there may well be some people out there who may have these and not know it.
I recommend asking your GP for a FIT-Test, and have a bowl screen test done. After all, prevention is always better than cure, and if nothing else, you’ll have peace of mind.
Richard
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Richard-Allen
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Hi Richard, interesting read.My husband has ARLD. He had a full body scan. This flagged up thickening in his large bowel. He had a colonoscopy. They removed 6 polyps which were deemed as Pre cancerous. He has to go back this week for another polyp to be removed and Sent to histology.
He got his first results in 3 weeks. Fingers crossed that this last larger one is ok too.
He had no symptoms so extremely fortunate that these have been picked up hopefully in time.
Hi Richard, Hope your recovering well! And thank you for your post on this matter
May I ask .. is this just a flag for liver transplant patients with ARLD or in general like myself who HAS ARLD but not post transplant or on any wait list at present 🤔 also did u get any inkling that you had these polyps ? Any pain or anything that we should look for other than asking a GP for this test
No, there was no warning, low Ferritin (Iron) levels were picked up on a routine diabetic blood test. My GP then went in search of a possible causes. I had a FIT test done (poo sample) and this showed blood in the sample.
I had no symptoms apart from being a little tired. I then went and had a CT Colonography scan and which showed up four polyps. One was considered to be quite large.
No one really knows why these polyps appear, but they can become cancerous if they become large. But this can take a while to happen, around 10 years or so. However, they are prone to bleeding at times. This in turn can cause a drop in iron levels and a feeling of fatigue.
I have sent this report off to a Hepatologist friend down at the UCL/Royal Free to see if he thinks there should be a better national screening carried out on liver transplant patients and also those who are being considered for a liver transplant. I feel it should be considered a follow-up routine appointment in post-transplant clinics. But these are just my thoughts.
I was going to post up the trial document but feared the admin would delete it. What this trial does show is that further trials and investigations are needed. However, in the meantime, I do recommend people have a FIT test just for reassurance if nothing else: researchgate.net/publicatio...
so other than a little more tired no other symptoms... it is definitely something that I would never have even thought existed.. obviously I know about colon cancer and bowel cancer yet I've never been asked if I would like this test and I definitely don't know if my feretin levels are low unless it's picked up at QE blood tests
I shall be asking my GP about this, thank you very much for the information Richard, most appreciated..
To my knowledge, patients older than 50 require an annual colonoscopy, as most colon and rectal polyps (precursors to CRC) develop after age 50. According to the information you provided, ARLD patients need an age-independent approach to preventive colonoscopy as I understand it.
Hello Fibro, thanks for your welcome comments. Up until my need to have a colonoscopy, I have never been offered or advised to have one. I had my transplant at the age of 63, and I’m now 69. This was my first colonoscopy.
With all the wonderful media coverage of Dame Deborah James, we are becoming more knowledgeable about the need to have the poop test. Men are most likely more negative about having this procedure carried out than women.
When my GP first made a referral to the QE for me, I received an acknowledgement a few weeks later. This was back in April. In this letter, it told me to ring a certain number if I had not heard anything within two weeks. When rang up three weeks later, I was told that there was a 72-week waiting list and that although my case was urgent, I'd just have to wait my turn.
In July, I still hadn’t heard anything. I had a routine, six-monthly telephone consultation with a hepatologist at the QE. She said she would raise the paperwork again and mark it urgent. Nearly four months later I got my colonoscopy appointment.
It would appear that our beloved overstretched NHS is still really struggling. So, it's all very well having the FIT test, but the followup treatment is really struggling.
Hello Richard, thanks for your reply. It seems that if the waiting period for a colonoscopy is 72 weeks in an urgent cases, then they probably really do colonoscopies for all patients after age 50 as recommended. This is an absolutely essential diagnostic procedure to avoid going down the one-way road as your case showed and it's not necessary for it to see positive Fit-Test in the stool. Although I absolutely agree with you that few patients find colonoscopy a pleasant procedure.
When you say all patients, do you mean all over 50's or a particular patient group? There is no such annual screening done in the UK. Hubby is 61 and has only ever had 1 colonoscopy (2013) - this to investigate whether there was an issue in his bowel causing anaemia. He like all over 50's is sent a poo test kit in post for screening purposes (every 2 or 3 years).
Yes, I completely agree with you and it is obvious that approaches to diagnostics differ in different countries and this must be taken into consideration. From what I have been able to read, the NHS recommends that anyone aged 60 to 74 who is registered with a GP and lives in England automatically submit an NHS bowel cancer screening kit every 2 years. The programme is expanding so that everyone aged 50 to 59 years will be eligible for screening. This is happening gradually over 4 years and started in April 2021 with 56 year olds. The NHS bowel cancer screening kit used in England is a fecal immunochemical test known as the FIT kit.
hey Richard, just wanted to chime in. I’m 39 with early cirrhosis. I had my first colonoscopy around 8 years ago before I developed arld. Fast forward, When I was in the diagnostic phase a few years ago I had another one and was clear. Then around 4 months ago had another and there was a precancerous polyp removed. For whatever reason they suggested I just come back in another 5 years but I continue with with my endoxcopies yearly. I will bring this up and request one every 2 years instead of 5. Thank you for your post as always. Btw, I had no idea you had a transplant. I was wondering why you were heavy into research since I joined about 2 years ago. Makes sense now!
Thank you so much for this post. I have not had a transplant but do/did have Fatty liver and mild fibrosis (now since resolved). I have had 2 episodes of at least 4 polyps (each time) being removed during colonoscopies. I am still not yet 60 so this happened in my late 40's/early 50's and again this past summer. I also had no real symptoms aside from occult blood found in an in office medical screening. I had wondered if ARLD was in some way a factor (or, perhaps, the lifestyle habits I had that led to my having ARLD).
I sincerely hope all is well with your results Richard ❤️
Were you already participating in the twice yearly routine NHS screening procedure for bowel cancer Richard? Should this not cover most people for this risk?
Up until I went looking for a possible link between liver disease and the growth of these polyps, no one had ever mentioned this to me before. I think a lot more reaserch into this possible link is needed.
When I left the liver transplant ward at the QE back in 2016, most people get discharged back into the care of their local hospital. My hospital didn't want to know. I didn't get to speak or see a consultant for over a year, and even then they just said, "If your still being seen at the QE, you might as well carry on. There's no point us both seeing you".
What I'd like to see is a bowl screening program included as part of a liver diagnosis procedure. So, if a person was to have an MRI or CT of their liver, why not include the bowl too?
Also, for those who are post-transplant, a 12-monthly follow-up should include a CT Colonography, or a colonoscopy exam.
I think also that there is also a belief (especially amongst men) that the “bottom” is an “outer”, not an “Inner” it’s unnatural for someone to have something shoved up their backside, so many men may refuse out of principle. A greater degree of careful education is needed before having this procedure.
i had colon cancer found by the screeningprocess .two yrs later i developed a small 6cm cancerous part of my liver both were eradicated successfully nonmetastasised. reverse connection?
Interesting that this has only come up in relation to Alcoholic Related Liver Disease. Having had Ulcerative Colitis since childhood, as soon as colonoscopies became available in the 70's I've had them regularly since then. It's good Richard that your experience of one (on the whole) was positive and hope your results are favourable. They've improved a lot in recent years and not to be feared in the way that they used to be. UC and liver disease are directly related and as a result my liver team are acutely aware of the necessity of regular Colonoscopies. Fortunately being on immunosuppressive medication has more or less burnt out the Colitis.
bowel and liver share ( bowel cancer and liver liver mets, play well together in the play ground and share their toys lol) liver mets are now being removed, with excellent results, I expect the same is true of bowel mets from livers, after all they take up a quarter of the bodies blood supply.As I’m sure you know polys are usually begin. Good luck, keep me posted please
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