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Calling all exam data on the Despicable Dr D....!

Posted , 4 users are following.

james52892
james52892

Hi Everyone, 

                       I'm really interested in hearing what peoples experiences have been on the progression of  DD over several years? It seems to me that we all really have two mountains to climb here: the first and most immediately important one is to determine our individual triggers (and some of the excellent discussion groups and contributors in the forum have really helped me - thanks guys). The second is to see if we can slow the progression of the DD down or even stop it. The (my!) hope is that the high fiber, low red meat, lots of water style diet will do this, but I was wondering if any one has evidence that this is the case? For example, Ive had two colonoscopies 5 years apart, and know I've experienced substantial deteriation - ie a bunch more diverticula across the colon  (though I wasnt being careful and was still eating red meat etc - didnt know any better!). I've asked some of you about this individually - if you have had several colonoscopies/CT scans spread over some years, ideally with some idea of what your diet was like over the period, it would be great to hear about it and get a sense of whether what I hope is true does actually appear to be the case!

Thanks guys and the best of luck

James 

           

1 like, 5 replies

5 Replies

  • james52892
    james52892

    Posted

    I thought I'd reply to myself (to keep myself company!)

    This post is more strategic than tactical - I know that most of us (myself included!) are in the first instance interested in finding things we can eat which doesnt result in the Dastardly Dr D paying us a unwelcome call!

    But I've gradually trying to reading the liturature and you realise there are many unanswered questions (even to the extent there isnt even consensus on the causes of a flare-up), so if anyone has actual data if, say, a change in diet genuinely slowed the progression of the disease, I would be really interested. I admit I'm motivated by largely selfish reasons: Im now 55 and since the last colonoscopy 5 years ago, know many more diverticula have joined the party in my gut! However, I can see I wasnt on a particularly good diet....that is changing, but I'll have to wait another few years (5, maybe less) before the next colonoscopy andwhen I'll get some idea if a change of diet has done anything to slow the formation of the Ds.

    Some people have shared their stories (many thanks) - just wanted to put the question to any Divo Mystros out there, who might have more data on how their conditions have evolved over time?

    All the best 

    James

    • 52331
      52331 james52892

      Posted

      James for me it's been a daily regiment of Metamucil once in morning and once before bed. It has kept me regular for 7 years now without any flare ups. Yes I watch what I eat and I have cut back on the red meat which my Dr stated we North Americans eat too much red meat and not enough fiber. My success has been making sure my colon is cleaned out and fecal matter is flushed out of my body quickly without straining.

      I'm 52 and only difference I notice is that I must go to bathroom more often. I good advocate of this site is Felinia. Let her explain to you how she manages this disease.

      Good luck to you Sir.

    • james52892
      james52892 52331

      Posted

      Hey! Thanks for replying!

      Ok, so my question to you is, while you have been successful in stopping attacks, do you have any information to suggest that the new diet has slowed down (or even stopped) the formation of new diverticulum?

      I chatted to my doc just recently (after I posted this). Somewhat sadly she is of an opinion that once the diverticlula have started to form, there probably isnt much one can do to actually stopped them dead in their tracks (though there might be things you can do to speed them up like a high meat diet!). Its an interesting view and it was just her opinion, not back ed up by a study. I sort of believe also this might be the case (with the possible exception of, say, making a really drastic change to diet like going completely vegi for example). Her point is that the cultures where DD is rare (Africa based) as like super high fiber - not just you 28grms a day! 

      Thanks for relying though!

      Best

      James 

  • lindalaz
    lindalaz james52892

    Posted

    I think once the diverticular pockets are there, there is no cure to lessen them other than removal of that part of your intestine.  I have been flare free for 1.5 years - I take a dose of Miralax everyday and actually watch my consumption of insoluble fiber.  All of my flares were connected to consumption of nuts, seeds and tough, fibrous vegetables.  I do not eat seeds, nuts or anything that has skins - anything that comes out the way it goes in!  As far as increasing fiber, the damage is done - no going back.  Honestly, if you do any type of research, the major consensus is high fiber is the key to avoiding this disease, but nothing has been proven.  If you are going to add fiber, make sure it is soluble fiber.  
    • james52892
      james52892 lindalaz

      Posted

      Many thanks for the feedback Linda - yes, the idea of something that shinks the existing diverticula is probably next century's technology sadly! The thing I was chasing from the group was if there was any evidence that a high fiber diet did actually slow the progress of the disease and the formation of new diverticula. So far I have one good data point which sadly suggests otherwise, but lets see!

          Currently in the middle of an attack which started yesterday so hearing of another person who has been attack free for a decent length of time is good for moral!

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