Dastardly Diverticulitis

Hi James

I think you've hit the nail on the head!!!  It's so easy to become complacent, forget your trigger foods, or overeat when out with friends.  At home you can control what goes in and portion size.  When I was still working I never took time off from work and can still remember being doubled over at the photocopier and spending long periods in the loo.  With hindsight I probably hampered my recovery time.  I have long had problems on holiday, most of which I put down to the change of water.  Now, I drink mostly bottled water, and always go for hotels with a buffet, so I can again monitor my food and portion sizes.  I always notify the travel company in advance and have found hotels (the bigger ones anyway) are quite accommodating.  Greater awareness of dietary problems has helped.  In the UK I have started asking for doggie bags in restaurants as well!  It's probably easier for a female!!!!

Hey Felinia - Interesting, I didnt know people worry about water that, at least, I assumed was always safe! I had a huge amount of trouble isolating what the issue really was and knowing how to think about it - I had a colonoscopy about 5 years ago which was relatively clear so we didnt think it was necessarily diverticulitis - maybe a chrones varient or colitis? I got obsessed by IBS/IBD and thought I'd isolated the trigger as carmelised onions! After the last attack a few weeks ago I had a second colonoscopy and lo and behold, it is divo across the whole colon, so need to really jack up the fibre and try and reduce the gut work load (I'll try that soluble fibre additive). Ive talked to relations in France with it and they are very careful about tomato skins and pips - so this blog has been very useful in understanding this soluble/non-soluble fibre business. I must say you seem to have been very good about analysing the issue and developing a process. The most recent attacks of yours, were these related to you 'falling off the wagon' and gorging yourself on some delectable forbidden foyble or were they the result of the emergence on a new trigger? The blasted thing about aging bodies is the moving target aspect of them - the just nail the situation at one point in time and then it moves on and you have to work it all out again! 

All the best 

James 

Hi James

I've had 16 years to come to grips with this.  I think my flare last August was triggered by pigging out on ice cream - my main weakness, and I like the good quality full fat stuff!  Then it just never seemed to clear up.  I was sent for a colonoscopy and CT Scan in late October which confirmed the DD was now severe, whereas it had been moderate before.  I think it just gets worse with age as you say, even if we do everything (more or less) right.  I then had minor flares just before my 2 holidays in February and May, which makes me think psychology also has something to do with it - I was concerned I'd be ill on holiday, so - lo and behold - the weeks before I flare up.  At least I got the pills before I went.  So far I've just got all the old triggers, not new ones.  Gluten/wheat/full fat mainly.  I'm lucky that I can eat things like salads but I do avoid pips, seeds and skins.  Due to other medical conditions, I have quite a restricted diet anyway.  But we can't be saints all the time!!!!!!!!!!  I do make sure I take my Fybogel religiously every day, and a couple of times a week I take a 2nd to make sure I am well and truly empty the next day!!  I suspect because of my other conditions (one since birth) I am well used to pain and restrictions, so cope better than people who are dealing with discomfort for the first time.  Or perhaps I am just lucky and not as bad as some of the posters on this forum!  Best wishes

Hi Felinia - ah ok, so your last major attack was triggered from a known IED! Yes I agree, very hard to be a saint all the time + when nothing has happened for sometime your guard drops and you think somehow your safe ... infact your walking along the same cliff edge you always were! I'm 55 and first started getting symptoms a little over 5 years ago - the scary/worrying thing for me is there appears to have been a substantial deteriation in the colon over the past 5 years, so somehow I need to make signifiant changes to slow the rot down (so to speak!). I do now think there is a pychological aspect as well - at least when ones in the recovery phase and vulnerable. I'm UK based with a friendly GP so have packs of ABs and can get on it at inception, but it still seems to take at least 10 days to throw (and this time 2wks+). I'll get some of this Fybogel tomorrow and give that a whirl - Lebanese food always seems to be fine with me. I tried one of these wholistic fruit etc smoothies the otherday which was well recieved. Your experience of a long time attack free shows it can be done - there is this deeper issue of slowing the progress of the physical deteriation though. The apparent relative lack of the disease within African populations suggests the high fibre soft stool route should help do that. One good thing is I'm now in the NHS colonoscopy pipeline so will get a 5 yearly update - the upside for Divo sufferers is that we are unlikely to be killed off by colon cancer! 

Many thanks for all the info and chats - its really encouraging to find someone who has made good progress at getting the disease boxed in, even with the occational ice cream madness! Maybe switch to sorbet when you get that feeling - not quite as nice but might avoid the Dastardly Divo hangover!

All the Best 

James 

 

Hi James

I had my first attack at 51, so am 67 now.  Until last August I would have said I had managed very well, but the deterioration was going on inside unknown.  I had not heard of the NHS Colonoscopy pipeline, but I wouldn't be able to have another colonoscopy anyway.  The location of my diverticula are such that they cannot actually insert the scope - I had a barium enema 16 years ago and a CT scan last October.  When I was referred I told them about the failed colonoscopy in 2001 but they wouldn't listen and insisted on trying again.  So I had to go through all the prep, only to be met by the same Consultant Endoscopist as before, who had referred to my notes, seen he had failed then, took a quick look and said "No way, Jose"!!!

My GP surgery is very strict - you can't get anything without talking to or seeing a doctor, and you can wait up to 4 weeks for an appointment unless it's a real emergency.  So I have to go through hoops to get antibiotics each time, and I can't have anything "just in case".  They always want to see me for DD, have a good prod around, and agree to prescribe after they have scraped me off the ceiling!!  Last time my (new) GP said "you seem to know a lot about this condition - are you in the medical profession?"  I just said "No, learned from bitter experience".  That's the thing - GP's know a little about a lot of things, but us sufferers know our specific condition inside out.

Fybogel needs a couple of weeks to become effective - it's not a quick fix like a full blown laxative, and some people have given up because it does not seem to be working immediately.  You are lucky to get away with a 2 week recovery - it has never been less than 4 weeks for me, right from the start, and this time it niggled on for over 9 months.  Funnily enough today it is playing up again but I think that's because I am on antibiotics for another condition, and that always disrupts my regular pattern.  Like many people with DD I get lots of bladder infections, followed by thrush.  I never had these until last year.

Still I look on the bright side - there are so many people far worse off and/or younger than me.  I still do what I want, have plenty of holidays, and enjoy my retirement.  Have a good week.

I was thinking of trying salad again what do you put in yours I know I can't have cucumber but I was thinking of lettuce beetroot but can't think of anything else

Hey - yes damn annoying they wont give you some AB packs on spec as it isnt like the condition is undiagnosed! The colonoscopy 'pipeline' was really as a result of finding a polip - if its of a particular type (adenoma) you end up on an NHS list which means you get a colonoscopy every 5 years as standard (basically to prevent colon cancer) which is pretty cool. Blast - sorry to hear the position of the div'la makes it difficult to do in your case(not that it is a wildly pleasant experience but you do get more info). Poor you as the the prep is the worst bit! I've been reading some of the other blogs and have been counting my blessings - of course the more insiduous aspect is the worry about what the future will reveal! I dont really like the ABs myself as they always make me feel generally yuk but they definitely nail the fever quickly. Part of me finds it hard to believe that one cant arrest the development if one just finds the right balance...but maybe its like a river that once it starts to miander, just keeps on developing more wiggles! 

Arg - work tomorrow - have been out for best part of 2wks and need to get back - keep enjoying your retirement! will let you know how I get on with the various suppliements etc 

All the best 

J

Hi Susan

I have shredded raw carrot, shredded raw beetroot, finely chopped peppers (you may want to skin them first), sweetcorn (again this can be a trigger food but I am OK with it), spring onions, boiled egg, mixed salad leaves (ie watercress, lambs ears, round, iceberg but not the bitter or frilly ones).  I chew it very well. 

Sorry to hear tomatoes seem to have given you a problem again.  Suggest you record everything else you ate yesterday and keep the record.  It's too easy to get fixated on one thing and forget the rest.  Innocent until proven guilty, not the other way round.

Hi James

I hope you at least managed to get some rest and sun during your time off - but I suppose it wouldn't do to turn up at work with a suntan!!!  As for me, I'm going to sit down and enjoy Wimbledon.

Thankyou. Yes I had forgotten I had small amount of pizza for tea Too much tomatoes I will try your salad and let you know how I get on. I haven't had a flare for a while so trying to keep it that way x

Hi Susan

Try the Sainsburys Sweet and Crunchy salad bowl, without the mayonnaise, shared with something simple like an omelette or poached salmon.  Also pizza contains gluten which is my main trigger.  Today I am suffering from too many strawberries - the first time they have affected me.  So what I have learned (or remembered) is - small amounts, not pig out!

I love strawberries cherries cucumber banana apple oranges haven't had any since last year I will try the salad I go to Sainsbury's for my shopping. Is there anything you can recommend instead of mayo or salad cream. Thankyou

I personally get the "Be good to yourself 1000 islands dressing" as I have to have fat free or very low fat dressing.  But there are plenty of low fat options to try including Extra Light Mayonnaise.  I don't use much - just one tablespoon drizzled over as it is quite strong tasting.  But first you need to find out if you can eat salad anyway - no point wasting money on dressing if you can't.  And if you can still eat your favourite mayo or salad cream, no point in changing!!

Thankyou x

Hi James

this might not be helpful but you can purchase the AB's over the counter in most other European countries so if you are in Spain the pharmacist will be able to recognise the product name e.g.  Co-amoxiclav 500mg  and quite happily sell you a course. I am lucky enough to have a GP who will give me a spare course but I still have to go through the process of getting an appointment.

phil

I am really lucky I can phone DR and speak to them and they leave it up to me if I feel I need to be seen If I say I don't need to they will give me a prescription to collect from the surgery

Hey Felinia - hope your enjoying the sunshine + Wimbledon! You probably did all this years ago but I've started to trawl the medical papers on this wonderful malady - more by way of sharing with the group I found this one :

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3174080/

which  I got a bit out of - it seems there is alot that isnt clear - my main take home was the mean transit time comparison between Ugandan and UK groups - 34hrs vs 80hrs, with stool sizes of 450gr vs 110gr/day. Amazing difference - so it looks like good bulky stools which rock along at a rate of knots are the best a colon can get! 

It seems to me there is an immediate tactical issue of determining how to avoid casusing an attack (so apparently eg peanuts in my case and/or ice cream in yours) and then this much harder (because the feedback info is so scarce) strategic problem of determining a regime that ideally stops the disease progressing... My hope is the fast transit/bulk approach is the way to go (no pun intended!) there.

Without doubt all coals to New Castle for you, but nice to have a group to bounce stuff off!

Interestingly (for me at least) I found there is a condition SCAD which seems to be a form of colitis which occurs between diviticula, not within them - almost like a cross over between DD and IBD - its occurred to me that this might be the thing I have (as no one has yet found out which part of my colon is kicking off) 

All the Best

James

 

Hey - just trying to share a paper with you guys - we'll see if the moderator lets it though - should do as it academic and not plugging anything 

J

Hi James

This was a fascinating read.  In my former life I was a statistician, so appreciated the analysis, and was pleased I remembered enough to understand the results of the testing that had been done!  I remember a recent TV programme where a UK doctor and a villager in India each ate a tin of sweetcorn and monitored transit.  The results were very similar to those reported in the paper, and a great advert for a healthy low fat high fibre vegetarian diet!

Some of the research quoted was dated (like nuts and seeds) and more recent advice does differ.  I was interested to read about the stent procedure for strictures as I have a very narrow lumen, and a blockage is one of my fears.  Still at the moment all is fine.

Well, I had lunch in the garden, did my gardening and it's back to the tennis!

Hey Felinia,

                     haha funny you were a statistician - I'm in the Hedge Fund world and spend much of my time doing statistics (though an old physicist by training) ! Yes, i'm trying to find some up to date review papers (ideally without paying for them!) and that was one freebie I found. It is interesting - makes one realise that there is alot which isnt clearly understood yet - the fact that western populations tend to develop problems in the sigmoid and asian populations on the right side. I have to say I dont like the idea of surgery as once you do it you've shot your bolt - like the idea of management. Ah well - enjoy the garden - lovely day out there :-) 

Hi Filinia, just following your interesting posts on here and was wondering, what are the pills you were taking with you on holiday? I have never been prescribed any pills for this except when I had an infection the first time I was diagnosed.

Best wishes... Maureen

Felinia you know the program. You must keep the bowels moving waste out at a rapid pace. That would be the Metamucil and you must take iit daily and it will also help with loose stools and IBS.

We alll get the good diet and trigger foods. You want the holy Grail it's Metamucil.

You're back!!  In my case it's Fybogel, and for the last month or so, I am finally pain free all day - it's taken around 10 months of 2 paces forward one hop back.  But I feel good now.

I went to my GP before my trips as both times it felt like a flare was coming.  After being duly prodded, poked, and scraped off the ceiling, she recognised I had inflammation going on, and prescribed Cefalexin and  Metronidazole.  I was part way through each course when I went away.  My GP won't prescribe these without consultation and examination, even with my knowledge and history, but I have read here of some GP that will.  But I also always take my daily Fybogel and am surprised you have not been advised to take this (or Metamucil) as a daily preventative.  I also had my trusty Aloe Vera with me, but as pills rather than my usual liquid, as the airlines are so careful with liquids these days.

Thanks Felinia,  My GP would not give me AB's without fever or inflammation.  I thought you may know of some "over the counter" medication.  I do have Fybogel but only take it if I feel constipation coming on, and not on a regular basis.  I'm finding that too much high fibre (especially cereal) seems to be my trigger, which is a bit of a vicious circle as we are told stick to a high fibre diet. 

I've been feeling ok now for the past few days by giving up All bran (which I had only recently started to have for breakfast), but I'm hoping to slowly introduce it back into my cereal intake by maybe mixing it with some lower fibre cereal.  I am taking the Acidoph..+ pectin as recommended by Jacqueline, but wondering now about Aloe Vera?  Do you find that good?   

Yes I'm back. Feeling good and pain free. Twice per day Metamucil and garbage in and garbage out in lighting speed. Keep the colon clean and live pain free. That is the goal of all of us!!!! Keep spreading the word and get these folks moving the crap out of their colons and the flare ups will stop.

God bless you.

Hi felina just a quick note about you having to wait and go through hoops to get your antibiotics, did you know that if you go to Greece or Spain on holiday you can actually antibiotics over the counter with no prescription. Just in case you need an emergency stash. They do all the usual amoxicillin, metronidazole etc. Just a thought.