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
martin_74671 Guest
Posted
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.
52331 martin_74671
Posted
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Guest martin_74671
Posted
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
martin_74671 Guest
Posted
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
Guest martin_74671
Posted
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.
martin_74671 Guest
Posted
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
Guest martin_74671
Posted
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
Guest martin_74671
Posted
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
martin_74671 Guest
Posted
Hi, Janice
Thanks for the replies.
As I said, I've never had any blood before, to the best of my knowledge, but I understand it can happen. I guess my inflammation has just not settled down and I still have quite bad IBS type symptoms. I'm banking on the fact that serious conditions seldom give such clear warnings or overt symptoms. As far as the current spotting is concerned, it is very mild and, unless looked for, would probably pass unnoticed.
The doctor and consultant, today, seemed to lean towards DD rather than anything else and the fact that I had clear colonoscopy 2005 and clear scans in 2010 and 2015 seemed to reinforce that. In addition, I have been entirely well until about six weeks ago, when rumblings began and it seems to me that these notoriously difficult to detect diseases tend not to show their hand easily. If they did, a lot of people would end up being far less unwell.
For now, I just have to wait for the scan and results. While I like Christmas, I must confess that I would rather it wasn't about to get in the way of my scan and results, this year!
Please keep in touch and I will let you know what happens.
Best wishes
Martin
Guest martin_74671
Posted
Hi Martin
I'll keep everything crossed for you, but when I was at this waiting stage earlier this year, everyone was very encouraging - and right! I hope you get the all clear in time for Christmas and can enjoy yourself - with a little bit of moderation! All the best
Janice
martin_74671 Guest
Posted
Thanks, Janice
You're so right about the horrors of waiting- and I'm not very good at it! The mind does somersaults.
I'll keep you posted.
Thank you so much for your support.
Martin
martin_74671
Posted
martin_74671 Guest
Posted
Hi, Janice
I promised to keep in touch.
I had my colonography, this morning and have just got the results by text from my consultant. Full report will follow. No sign of cancer "nothing nasty" as he put it. Extensive diverticular diease and some kidney stones (have had these on and off for 40 years and they show on all scans).
I am very relieved, of course, and want to thank you for your comments and support- it meant a great deal to me.
I will now see a recommended dietician, to see if I can do something to keep things on track a bit more consistently.
Very best wishes
Martin
Guest martin_74671
Posted
Hi Martin
Delighted to hear there are no signs of cancer - a massive relief for you and now you can enjoy Christmas. Your text was very like my letter - extensive DD - and "benign" rather than your "nothing nasty". Clearly your Consultant is not a sufferer either as I would say DD is extremely nasty, but in a different sense!!
As for the diet, everyone is different. I remember you are gluten free like me, but I also stick to a very low fat, low sugar, low acid diet, as I also have a hiatus hernia, high cholesterol and pre-diabetes. It's a bit more limited than for most DD sufferers. In addition I take pure Aloe Vera juice, probiotics, plant stanols, Fybogel and Mebeverine (when required for tummy cramps). The Fybogel and aloe vera are most effective. I also have the very occasional (maybe twice a month) square of Exlax, when I start to show signs of constipation, in order to keep the system clear and not let anything build up.
I have a lot of fluid type food - yogurt, home made soup, vegetable puree, runny porridge, and stick to small portions - little and often so I don't overwhelm the system. I avoid foods with nuts, seeds and pips, and have mainly steamed fish/poultry rather than red meat. It just takes a bit of planning. But this is what suits me and may not be right for anyone else - just trial and error. Your dietician will probably say plenty of good fibre, lots of fluids, small meals.
But today we are off for our pre-Christmas lunch at our favourite restaurant. The chef is a friend and prepares my meals to my request, plus provides a doggy bag. So it's turkey without trimmings with veggies, plus panna cotta without berry compote or ice cream. Half for lunch and half for tea! I get to watch the others enjoy the "Full Monty"!!
So glad all is working out for you. All the very best
Janice
Guest martin_74671
Posted
Just picked up a new post from julia1040. It is a brilliant summary of dietary suggestions for DD sufferers. Suggest you have a look.
Cheers
Janice
52331 martin_74671
Posted
martin_74671 Guest
Posted
Hi, Janice
I'm sorry not to have replied to your messages, including the one before Christmas- they just disappeared and I've just managed, by pure luck, to come across them.
Thank you for all your support and good wishes.
I hope you had a good Christmas- I did, with a great sense of relief!
I'm still waiting to see a dietician and this has meant that I haven't got things back to 'normal' yet, as I don't really know what to do or not do.
Still have some pain but mostly feelings of slight nausea and all the feelings of IBS that have plagued me for years. Certainly not eating with the freedom I was used to! I guess this has shaken me a bit.
I will certainly look at the dietary suggestions you mentioned and intend to try the aloe vera you take.
I'll keep in touch, if that's ok.
Very best wishes
Martin
Guest martin_74671
Posted
Hi Martin
Great to hear you seem to be on the road to recovery and a more normal life at last. I took advice and upped my Fybogel to twice a day, and now apart from the odd twinge, I am pain free. In fact I felt so good I booked another holiday, which involves a 10 hour coach trip to the destination! I'm also off to the Canaries shortly, but that's actually easier to manage!
You might find the dietician a bit limited. Unfortunately one NHS size does not fit all, and you need a bit of trial and error, plus a food diary to find what works for you. I hope you've managed to find the excellent post by Julia1040 - the best on diet I have come across. But it also takes time for the gut to settle - in my case 4 - 5 months.
Look forward to swapping good news!
Guest martin_74671
Posted
Hi Martin
3 months down the line from my last message and I am just about back to normal as I was before the flare last August. Just one minor flare in January. So it's been almost 9 months of 2 steps forward, one step back. I hope you too have continued to improve. I have put myself back on the Slimming World diet, but with some modifications, and so far, touch wood, it works. But one thing I have learned - it takes time and patience, and there are no quick fixes and instant results. Best wishes
52331 Guest
Posted
Guest 52331
Posted
Hi
Twice a day, every day, was making me too loose and irritating my bladder, so now I am once a day for 3 days and then two on the 4th day, or whenever I feel I need loosening a bit more. However the good news is that after almost 9 months I am back to how I felt before the flare, with virtually no pain, just the odd twinge when I forget and move awkwardly. It is so good to wake up pain free, and have normal movements, albeit 3 - 6 a day, but I always went more than once a day anyway.
What I have taken from these 9 months is that the main requirement is PATIENCE. There are no quick fixes with this disease, no chopping and changing every day if something does not work immediately, no right answers. Just trial and error and working out what medications, supplements and foods work for each individual, and time for the insides to heal. This is the hardest thing to accept when you are in pain and fear, when you have a family to care for, a job to do, and you just want to feel better. Most people, like you and I, will get our lives back, but very few of these people come back to the forum once they feel better, to say "yes, there is light at the end of the tunnel".
52331 Guest
Posted
So glad you're feeling better. I am still doing twice per day and having about 6 movements per day mostly 5 in morning.
I can tell you I am very blessed to have figured out what works best for me and it's very encouraging to have folks like you on these forums to help guide the new patients. Take care and god bless you.