Colonoscopies and Diverticular disease

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.

 

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

Thanks for the positive support.  I'm off for a break for a few days and hope to have some answers when I return.  

 

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.

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! 

 

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

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. 

 

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.

Im new to this forum and wonder if anyone can help with some information.

I'm 68 and have been coping with presumed IBS for many years. Two previous colonographies, in 2010 and Jan 2015 identified numerous diverticula and evidence of a number of previous episodes of diverticulitis. It appears that my IBS has actually been diverticular in nature, all along. I have never had any bleeding but, some weeks ago, I thought I had started another episode of IBS. This was more painful, excruciating cramps, pellet stool, mucus and, eventually a small amount of blood. My GP diagnosed diverticulitis and gave me augmentin. The more violent cramps have eased but I still have some cramps and bloating, with watery feelings in my abdomen, and pain and soreness in my right side, near the hip, around where the bowel turns, and along the girdle line across my back. I have had no pain specifically in the left side but know I have diverticula throughout. I also have some (about four or five) very tiny spots of fresh-ish blood in and on my stool, every day for the past two weeks. This is a minute amount but it is there and it is worrying me. My GP says it could still be inflammation. 

Can anyone tell me if they know of similar things, or if they have had similar things happen. All I can see, is information about the large bleeds that can occur and I have only had the original small amount and these continuing spots. I don't have piles ot anything like that. Having had no previous experience of diverticulitis, I'd be grateful for any information at all. 

Many thanks.

Martin get on a regiment of psyllium every day.

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.

Felinia get on a regiment of psyllium every day.

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.

Felinia get on a regiment of psyllium every day.

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.

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.

Hi Martin

Your symptoms sound totally identical to my 1st attack of DD, including the bleeding.  I too was first diagnosed with a rectal tear and IBS until the colonoscopy and barium enema, when Diverticular Disease was identified.  I'm sorry to tell you the pain, bloating and other side effects can last for weeks or months, as you will have seen from other comments, but they do ease up.  Others have suggested the daily supplement Fybogel, which I get free on prescription.  That softens the stools.  Other recommendations are pure Aloe Vera juice and a daily probiotic.  After more than 3 months of pain, these two reduced it to just twinges in a few days.

I would also suggest you try and identify which foods upset you, and eliminate them.  For me it is gluten, fat (ice cream), and eating too much.  For others it is nuts, seeds, red meat.  Everyone is different so it's trial and error, and probably why the NHS can't give more advice, apart from to make sure you have plenty of fibre, but avoid seeded fruits like strawberries, raspberries etc.  I also resort to the old fashioned hot water bottle, gentle massage, and osteopathy.  These help to relieve the muscle tension around your back and stomach and helps overall with the pain, I've found.

I too was told the inflammation and bleeding could last a long time.  However when my symptoms persisted for more than 8 weeks, I went back.  I know is this modern day and age, there is a lot of scary information easily available, and it's easy to over-react.  I said how worried I was about other more sinister reasons, and was referred for another colonoscopy and CT scan, although I was assured it was highly unlikely to be anything else.  As it's been almost 2 years since your last test, you might like to consider this, for your own peace of mind.  I understand you can get this done privately, if your GP does not want to refer you on the NHS, but of course it costs.

There are a lot of us out there living, or learning to live with this disease and many helpful posts on this forum.  I spent a lot of time just reading through other peoples experiences and it helped me greatly.  I hope it helps you too.  Best wishes

Dear felinia

Thank you so much for replying-and for letting me know I am not alone!

It is so important, when everything seems so black and hopeless. With so many years of battling IBS and, in some ways thinking I had it taped, the new development just about threw me. My symptoms are just like IBS -but the advent of the bleeding, however little, terrified me. I have always been watchful for blood, even when I thought it was IBS, so I was looking for something else. Nevertheless, I was shocked to find the little red dots scattered around- and it scared me . So many sufferers and documents only speak about large,painless bleeds- mine is nothing like that and seemed somehow very sinister!

Simply knowing that others have similar symptoms lets me know that all is not lost.

I am very careful about what I eat and have gone gluten free, to take pressure off the system.

As you say, two years since my last scan is long enough and I have asked my GP to refer me and she has done so, already.

I guess the NHS will offer a colonoscopy-my last two were colonographies, following a very painful colonoscopy in 2005, when I found I was profoundly anaemic, due to gastritis, caused by taking ibuprofen! I'll take whatever will give me the clearest answer, in the shortest time.

I already take normacol to soften things up but the pain is still pretty debilitating. However, it is as nothing, compared to the anxiety.

Thanks to 52331, as well-any advice is welcome and helpful and I will think about the psyllium, although I don'twant to mess around too much, while things are so raw!

If you don't mind, I'll keep in touch.

Best wishes and thanks

Martin

Felinia try switching products until you find the best one for you. I have had great success with Metamucil. It thickens my food and allows me to flush my system in the most efficient way possible.

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.

Hi Martin

This is where the Forum is so important, when you realise you are not alone, and there are people that understand.  I too thought I had it sorted until the last bout, which just did not clear up.  It is so reassuring to have the tests to confirm what many people told me, and once you get a definitve answer about what it is not, it seems much easier to cope with.

My disease is located so that the endoscopist cannot complete a colonoscopy, but then referred me on to a CT Scan, which was very simple and straightforward - just like a series of X-Rays.  Apart from the prep it was painless.  Funnily enough, I found that after the prep had cleared out my system - and I had 2 preps in 8 days for both tests - the pain and bloating did subside a bit.  I'm just guessing but I wondered if the empty system gave the inflammation a chance to subside.  Since then I have been very careful, with plenty of fluids, soups, no overloading, and taking the psyllium, aloe vera and probiotics.  Yes, it is a lifestyle change, but I am back to doing most things, carefully!

Just a thought - have you done the bowel testing kit by post?  At your age, if you are in the UK, you should have been offered it.  Was it before your colonographies though?  Please stay positive - I totally understand the worry you are experiencing and hope you soon get your all clear.

Hi, felinia

Thanks so much for writing back, again.

Your comments are very intersesting, especially about the subsiding of problems after the bowel prep. Before the last colonography I had in Jan 2015, I had suffered what I thought were severe IBS symptoms for over three months. The scan was clear, thank Heavens, noting severe and widespread diverticula, but, strangely, almost all my symptoms disappeared within 48 hours of the clear out.

As I said in my previous message, I though I had IBS- never had any blood before these tiny specks within and on the stool, after much more overt evidence when, what my GP thinks was a diverticular flare, took place. Those tiny bits of blood are still present daily and it is this that still worries me, three weeks after that attack.

I went to my GP and she referred me under the NICE guidelines for two week referral. I had a call from the hospital the next day and saw a doctor today! Amazing!

Have been examined and poked and prodded and had a very thorough evaluation. I view of the tortuous nature of my colon, they will do the colonography (thank heavens- my precious colonoscopy in 2005 was hell).

I still have some mucus and the blood spots, as well as a rumbly and windy tummy and some discomfort around eating.

I remember you saying that attacks can last weeks- but can this kind of bleeding go on for a long time, too?

I'd be interested to know how things were for you, as your symptoms seemed similar.

I didn't do the screening test in 2015, as I had just had the scan and, in view of events this time, my GP has told me not to do it.

Look forward to hearing fro you and hope you are well.

Martin

Hi Martin

Glad to hear you got the NICE prompt referral like I did.  Sounds like your area is on the ball for you to be seen so quickly.  I had to wait the full 2 weeks and they took no notice of my previous failed colonoscopy, insisting they try (and fail) again - even the same endoscopist!  So it was actually just over 3 weeks before I got my CT scan, and a further week for the result, by post.  

However, unlike you, this time round I did not have any sign of blood that I could see, just the pain, mucus, frequent BM and rumblings.  I have tried to remember how long I passed blood during the first attack in 2001, but I'm afraid I can't remember, only that it was frank red blood, not brown dried blood.  I recall someone saying they were passing blood because they also had gastritis, and someone else had colitis, but I don't recall their time periods.  

I don't know if anyone else on this forum has reported long term blood spotting - it might be worth asking in a fresh post.  I do know that inflammation can cause bleeding, and that the inflammation can take weeks or even months to clear up.  I had my screening 10 months before the flare up and was clear of blood then.  I'm guessing your flare was probably more acute than my recent one, although I did go through a couple of spells of doubled up, rolling around the ground, swamping pains, etc!

It in now over 4 months, and apart from niggles first thing until BM 1, plus the occasional twinge, I am back to normal for me.  My GP nurse did say I could expect twinges for up to a year, but I've got used to them and actually tend not to notice.  I have also lived with chronic back pain (a genetic condition) from the age of 6 so I expect I have quite a high pain threshold.

Sorry I don't have the answers this time, but do let me know how you get on.  I'll also keep an eye on the forum as that might turn up some answers.  By the way, the "felinia" refers to my local nickname due to my cat!

Janice

Hi Martin

I just had a quick look through and several people mentioned polyps.  I looked up the NHS website on bowel polyps and it mentioned they are non cancerous growths that can bleed and cause blood in the the stool.  If found they are usually removed before they can turn nasty.  Just a thought.   Someone else mentioned piles.   So it seems there may be several possible reasons for your spotting.  Here's to a quick answer.

Janice