Colonoscopies and Diverticular disease
Posted , 6 users are following.
I am making this post on my experiences with Diverticular Disease and Colonoscopies - the good and the bad parts - in the hope that it will help others and add to the information already posted by other users.
I was diagnosed with moderate Diverticular Disease 15 years ago aged 51, after I had a severe attack of Diverticulitis, with swamping pain and passing blood, so was referred to hospital by my GP. I had to take Picalax as part of the prep then, and did not find it too bad, although I did struggle with the hunger and liquid only part of the diet that was standard procedure at that time. It was quite fierce for a few hours after each treatment. I remember very little of the Colonoscopy as I was heavily sedated, just that I cried out in pain whilst in a vague dreamlike state. The Consultant Endoscopist told me he was unable to complete the examination due to the location of the diverticula, and I was then referred for a barium enema. This confirmed the disease and I was sent back to my GP with no treatment required.
Over the years I stuck to the high fibre, low fat, gluten free diet recommended by my GP and had only three flare ups, until this year. 3 months ago I started having symptoms so went back for the usual antibiotic cocktail of Cetaflexin and Metronidazole. These were prescribed by phone and for the first time ever, had no effect. I duly called back and was passed the message by a clerk that "these things take time and be patient". After 7 further weeks of constant pain I went back. Phone consultations have their place and can be a good use or resources, but this time I insisted on seeing a doctor. She examined me and did not hesitate. I was immediately referred for bowel cancer screening under the 2 week urgent programme.
This time I was asked to prepare for a Colonoscopy with Moviprep, and when I asked for Picalax, was told the hospital had changed its preparation method as some people reacted to Picalax. I also pointed out that the hospital had been unsuccessful 15 years ago, but nobody took any notice of that, and said I had to have the standard Colonoscopy.
I did not find the diet preparation and fluid only part at all difficult. I got by on herbal tea, Waitrose chicken consomme, and clear apple juice. Also you are now able to eat certain foods like white bread, white pasta and white rice, plus eggs, steamed white fish and grilled chicken until about 48 hours before the examination. I should imagine though that vegetarians would struggle.
I can only describe the Moviprep as grim. You have to get down 1 litre of the mixture plus half a litre of water over a one hour period. Despite me advising the hospital I had a hiatus hernia and could not take acidic liquids, the Moviprep has lemon acid flavouring which triggered my acid reflux. As you can imagine, it was a real struggle to get in down and keep it down. You are advised to stay near a toilet and I would go further than that. I would advise anyone to prepare in advance in your bathroom, with a good book/kindle/tablet, music, spare toilet rolls, some sort of barrier cream (I used Vaseline and Drapolene), some wet wipes, plenty of old towels and flannels for washing yourself, old pants, and get a supply of incontinence pads.
At 6.45pm I was half way through glass 3 after 30 minutes, when the effects struck, down in the kitchen, and I did not make it to the bathroom in time, so I would also advise you to be ready to take the 3rd and later preps in the bathroom. There I stayed for 5 hours, then donned the incontinence pad, and managed catnaps for the next 6 hours, having to get up every 15 to 30 minutes.
The second prep at 6am was much harder but this time I was better prepared. I was due to leave at 12.15pm to get the bus to the hospital, but at 11.45am I was still using the toilet every few minutes. I calculated I had in fact been using the toilet every 2 - 30 minutes for 17 hours. I realised I could never do the 2 hour journey by public transport, and had to ask my neighbour to take me to hospital, via the toilet at Tesco en route.
I duly arived at 2.40 pm for my appointment and at 5.20pm was still in the waiting area. The friend who was staying with me overnight had come to collect me at 4pm and was forced to wait around. I was advised there had been delays, emergencies and difficult procedures for which the hospital apologised. I was eventually the only person left and finally taken in about 5.30 pm, very aware that the department would be closing shortly.
To my surprise, the Consultant Endoscopist was the same person who had seen me 15 years earlier and had refreshed his memory with the original notes. This time the sedation seemed to have no effect whatsoever, as I remember everything very clearly. Within a very short time, the procedure was halted, as again he could not complete the examination. I got the feeling he was expecting this, and also it was past closing time. This time he advised me my Diverticular Disease was now very severe, and that he felt I may need a sigmoid colectomy. I was referred for a CT Colonoscopy to ascertain the extent of the disease, and whether of not anything else more sinister is going on. I was rapidly bundled out of the department, whilst still unsteady on my feet, by the last 2 people left, and the doors were closed behind me.
So all in all, not a good experience, although I did not suffer the extreme pain that some people have reported, as the Consultant did not try and force things. I was also left with a very sore bruised hand for 10 days. I had no appetite for a couple of days, and as soon as I did eat, it seemed that the Moviprep was still working.
A week later I had the CT Colonoscopy, and the whole experience could not have been more different. The diet was the same, but this time the prep was Gastrographin. I was all prepared for a repeat performance, but there was no problem getting down 100ml of aniseed flavoured liquid. It seemed to have no effect and I had a good night's sleep with the precaution of an incontinence pad. During the next day I had no urgent need for the bathroom, until after I had taken the 2nd prep. Then I stayed in the bathroom for 4 hours, but only needed to get up twice during the night.
There was no difficulty getting to the hospital for my 10.20am appointment, and I was actually called in early, before I could even sit down. I had not had a scan before and had been told they were noisy claustrophic things but did not find this at all the case for the type of scan I had. The nurse at my request used my other arm to put in the line (after seeing the bruise from the previous week) and explained the side effects I might feel from the medication. One does give you a very dry mouth and another does give you a warm feeling as it is administered. It can also affect your vision and I was advised not to drive until my sight had returned to normal - usually about 20 minutes.
You are warned that you might feel the need to empty your bladder and that the insertion of the gas will make you feel bloated. I did find that the gas gave me a feeling of stomach cramps but it was just a bit uncomfortable, not unbearable. The actual scans numbered 4 in my case, and each one just took a few seconds, not having to stay still for minutes on end as I had expected. Then it was all over - an efficient, professional experience with minimum discomfort. I went to the cafe and had a cup of tea and roll, and from arrival to departure, including the cafe, I was in the hospital for just 70 minutes.
So now I wait for the results, and just hope there is no sign of cancer in the areas that the original Colonoscopy could not see. Diverticular Disease is a nasty painful illness, in my case the result of a longer than normal colon with extra bends, (according to my copy of the report, which I cross referenced to the Internet to decipher the medical terms). So I suspect I was probably prone to developing the disease despite loving my vegetables. It seems I may be facing surgery in the future, but I'll meet that bridge when I come to it. One positive outcome - I have lost 10 pounds in the two weeks of preparation, and intend to continue to try and lose weight, as I am sure it will help.
2 likes, 40 replies
a60450 Guest
Posted
Hi
I know all you say as sounds just like all we have been through. Dv can change the colon and many issues are in the sigmoid bend. Torsion and thickening is common and as such they can't always reach the parts they need to. Your 2 week wait referral scares you but it's almost certainly precaution as we have been there and got the teashirt many times. But dv in itself has no cancer risk. And you will get the all clear from this! Keep us us posted
Guest a60450
Posted
Thanks for the positive support. I'm off for a break for a few days and hope to have some answers when I return.
Guest a60450
Posted
Hi
FInally got the result of my CT scan after 19 days. All clear for cancer which is good news. However, despite having a diagnosis of severe DV with very thickened tortuous sigmoid, and a recommendation from the Endoscopist for a Colectomy, the Consultant has just dismissed me without seeing me - no further follow up or treatment required, no advice, just another copy of the leaflet I was given 15 years ago, which gives NO guidance on management. 4 months I am still in daily pain and bloating, and now have to rely on this Forum for advice. It seems I need to collapse with a blockage, perforation or fistula before anyone is willing to do anything. That's the NHS for you - save money rather than lives. Fair to say I am pretty disgusted about the lack of guidance and information from the professionals! So I shall follow the eating guidelines everyone has listed here on this Forum (thank you all), and try aloe vera juice.
52331 Guest
Posted
Psyllium is mainly used as a dietary fiber to relieve symptoms of both constipation and mild diarrhea and occasionally as a food thickener. Research has also shown benefits in reducing cholesterol levels.
The plant from which the seeds are extracted tolerates dry and cool climates and is mainly cultivated in northern India. Psyllium products are marketed under several brand names, such as Metamucil, Fybogel, Konsyl, and Lunelax.
Maggiemoo Guest
Posted
This is a great post, thank you Felinia. I am currently on antibees and some co codamol ( not recommended but the pain is too bad) . I had no idea I had DD until I went to my GP about the pain I kept getting in my left side, hip and back. He said it would be a result of my DD and I said " what are you talking about?" Apparently it was discovered when I had a CT scan for something else. This was last year and and I am now having pain in both left and right side, with the right side being the worst. It is so bad it has kept me off work and I had to see the GP yesterday, hence the Antibees. The pain is awful, but is so much worse in the night and in the morning, with most of it in my hip and lower back, making movements excruciating. GP said to give the antibees a couple of days to kick in but if the pain got too bad ( eh, hello! ) then I was to go straight to A&E. How bad is too bad? I've just been lying in a heap on my kitchen floor in tears!
Guest Maggiemoo
Posted
Just picked this up. Hope by now the antibiotics have kicked in. I found cocodamil knocked me out. However if the pain has not eased, you need to be aware that there are a couple of serious conditions like a fistula or blockage which do need urgent treatment at A&E. Don't be afraid to go back for more antibiotics at the end of the course. I have needed more, as have other posters on this site. Otherwise it does take ages for the pain to go. I too find it worse first thing in the morning when the bowels are full and does ease up after emptying. I also get back and hip pain which my osteopath says are partly a knock on effect on the lower body muscles from all the stress they are going through - like being in a vice was her description. It's early days but I have been taking Aloe Vera juice twice a day for 4 days and I just realised very little pain this morning. Many people have recommended it and it does seem to help. All the best
Maggiemoo Guest
Posted
Morning Felinia and many thanks for your response to my post. I just realised that I have mixed my sides up in my original post lol. Since posting I was whisked away in an ambulance when I blacked out. Long story short, I was admitted to hospital, taken to the Acute surgical unit, poked, prodded, xrayed, pumped full of painkillers, antibees, anti sickness, and all sorts of fluids. Apparently I have a " mild" infection in my rigt side, but pain is all left side. They spoke about colonoscopy but didn't do one and after begging the consultant, they let me home yesterday with a bag of antibiotics, pain killers and stuff to make me go to the loo and I'm to go back to the clinic on Thursday. If this pain is their idea of mild, then clearly they have never experienced it! I will try the aloe vera juice to see if it eases the back pain.
Guest Maggiemoo
Posted
Sorry to hear you ended up going to hospital but at least you got a thorough examination. Don't know if you have had a colonoscopy before but my understanding is now the X-Ray has eliminated a fistula or blockage, they prefer to do the colonoscopy once the infection has subsided. They need to completely clear out your system for that - see my post at the start of this discussion. If the disease is bad enough they might not be able to complete - as in my case. However there is the alternative of a CT Colonoscopy which is easy peasy, although it takes time for the results. However you are still probably going to have inflammation and that will continue to cause pain. My GP Nurse Practitioner has Diverticular Disease and is a mother, and said DD is more painful than giving birth. Bet the hospital person who said "mild" has never given birth! The Aloe Vera should help the internal pain on the left side, not external pain, but I found the best thing for the back pain was gentle massage and a good old fashioned hot water bottle (and also on the tummy). I have been living with this disease for 15 years, and this is my longest episode of pain - 4 months. But be reassured - it does ease up, although you will probably continue to get niggles. Unfortunately it takes time and patience. I have worked out what triggers my pain over the years - in my case gluten and full fat (ice cream!), but for others it is red meat, seeds or nuts. Everyone is different so you need to work out yours, and avoid those foods as much as possible. Other people swear by probiotics like Actimel. Best wishes.
52331 Guest
Posted
Psyllium is mainly used as a dietary fiber to relieve symptoms of both constipation and mild diarrhea and occasionally as a food thickener. Research has also shown benefits in reducing cholesterol levels.
The plant from which the seeds are extracted tolerates dry and cool climates and is mainly cultivated in northern India. Psyllium products are marketed under several brand names, such as Metamucil, Fybogel, Konsyl, and Lunelax.
Guest 52331
Posted
Hi 52331
Thanks - been taking Fybogel for 15 years now, and I have more than my 5 a day fresh veg and fruit. As my disease has got more severe, it seems less effective, and I have just started Aloe Vera and probiotics. Pain has eased considerably over the past few weeks, thank goodness. Here in Devon, UK it seems the treatment is simple - nothing (the cheapest option)! Which is why the forum is so very helpful. One Consultant said surgery but was overuled, but I'd rather avoid the knife. At present I'm just getting on with everything.
52331 Guest
Posted
As you know this disease is manageable and with proper diet, exercise, and stress reduction you can keep it under control. If I can do it anyone can do it.
Keep reaching for the stars.
52331 Guest
Posted
Felinia also try some good old fashioned yogurt. It's going to replace the good bacteria in your stomach and remember that the antibiotic meds kill off all the good and bad in your stomach. Again try switching psyllium products and hopefully that will thicken your stools so you can flush your bowels regularly. You have to flush your system without any pushing and the psyllium will do that for you. If the colon is clear of fecal matter you will stop diverticulitis.
Again, this disease is very managable and you can beat it by following simple steps.
Take care of yourself.
Guest 52331
Posted
Hi
I'm a yogurt salesman's dream - fresh in the fridge, frozen in the freezer, yogurt based probiotic drinks and yogurt based stanol drinks. Only proviso is that they have to be sugar free if possible (pre-diabetic). I'm now feeling very much better than I did a few months ago, and am also making a concerted effort to lose weight, as I know that will also help.
Are you based in the USA? It seems the USA and UK have a totally different approach to treating this disease, both money based. I had never heard of Metamucil here in the UK until this website, but I see I can get it on Amazon. Fybogel is what all the GP's prescribe here, and because of my age, I get it free on prescription. I intend to check the ingredients of both and see if I can spot the difference!
Cheers!
Guest 52331
Posted
Hi
I've taken advantage of having my boiler fixed to look up Psyllium and this is what I found.
"Psyllium is the common name used for several members of the plant genus Plantago whose seeds are used commercially for the production of mucilage. Psyllium is mainly used as a dietary fibre to relieve symptoms of both constipation and mild diarrhea and occasionally as a food thickener. Research has also shown benefits in reducing cholesterol levels. The plant from which the seeds are extracted tolerates dry and cool climates and is mainly cultivated in northern India. Psyllium products are marketed under several brand names, such as Metamucil, Fybogel, Konsyl, and Lunelax."
I also checked the percentages in each brand name and they are virtually identical. So I'll give Metamucil a try for a month, to see if there is any difference for me. As we have all discovered everyone reacts differently! Do you use the powder, or one of the other products? I am currently using the powder.
52331 Guest
Posted
Yes I take the powder Metamucil and the sugar free. Please note the surgeon was the one who recommended the product and it works. It thickens the foods as it passes through colon. Only downside I do go more often and when it's time you can't wait very long cause it's moving out swiftly.
Hope this helps and best of luck to you.
Guest 52331
Posted
Thanks for the post. I've been monitoring your other posts and see you advocate taking the drink twice a day, which I will try, although I am already going 4 - 6 times a day on just one sachet (as recommended by my dietician for DD)!!
I've found Metamucil is the brand name in the USA and the brand name here in the UK is Fybogel. I can order Metamucil from the USA but it costs a fortune after postage and tax. The only UK supplier I found wants to charge around £55 plus p&p per item. Guess they are getting their supply from the USA and passing on shipping and tax to the customer - so it's six of one and half a dozen the other!
Our Fybogel is a sugar free powder and it seems that the orange flavour is the most acceptable. Most people who tried the flavour free version described it as disgusting, or less flattering terms. There is also a lemon flavour. So cost wins out with me. Happy holidays.
52331 Guest
Posted
Let me know how it works for you and Merry Christmas.
52331 Guest
Posted
Felinia I have been through all the Ct scans and colonoscopies just like you. It's hard for folks to believe a simple OTC psyllium product can control this disease along with a good diet, excercise, and stress. I wish all the patients here can be pain free just like me.