Dastardly Diverticulitis

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I am 67 perfectly fit up until 6 weeks ago, have a good balanced diet, carry little extra weight, in all aspects very healthy, then acute pain doubled up in agony hospitalised and diagnosed with The dreaded D Liquid diet for about a week with antibiotics seemed to cure it and Colonoscopy scheduled for six weeks later. Two days before the D struck again this time intra venus anti b's and hospital for several days. C scan showed coverage over most of lower intestine and a small perforation. Consultant considered emergency surgery but held off after some improvement, released from hospital  but told it may re occur anytime no real dietary advice just dont eat seeds and nuts. Now walking on eggshells as I am still getting short abdominal pain and frightened to do anything. Due to fly to LA in two weeks and am worried. Does anyone still have recurring pain although no acute frlare up? Considering private consultation with a view to surgery but obviously do not want to end up Bagged!!

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    I have left sided pain most days but seams to ease with fybergel. I am seeing consultant privately on Friday to talk about what he can do if anything to help. They seam to operate more in the US I think you have to be really bad here in the U.K. Before they consider operating. I hope you get some answers
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    Hi

    Sorry to hear you have come down with DD, and 2 flares in 6 weeks.  Where are you based?  Treatment in the USA varies considerably from treatment here in the UK.  In the UK you are rarely admitted to hospital, just treated at home with antibiotics, unless it is an emergency like a blockage, fistula or perforation requiring immediate surgery.  So it sounds like you might be USA based.  However, if you are flying into the USA from outside you MUST update your health insurance - in fact given the closeness of the attacks I wonder if you will even be able to get insured.  You really can't risk another attack in LA without adequate insurance.   If you are USA based you know all about the costs of medical treatment!!

    Howveer the lack of information sounds more like the UK.  There are lots of posts on this forum about diet, one in particular from julia1020 about 8 months ago.  Basically you reintroduce fibre very slowly back into your diet.  Soluble fibre is best.  Most of us take a soluble fibre supplement, Fybogel in the UK, Metamucil in zthe USA, and there are others.  It is a powder which you mix with 12 fl oz water and chug down very quickly before it thickens.  It bulks and softens the stools, making them easier to pass and has a mild laxative effect.  It takes 1 - 2 weeks to start fully working.

    Others also take things like pure aloe vera juice, a natural healing remedy, and proiotics to replace the good bacteria in your gut that the antibiotics have killed off.  I personally make a lot of my own soup, which I blitz to a liquid, getting my veggies in an easily digestible form.  I also have meal replacement drinks on standby if I end up back on fluids only.

    The advice about nuts and seeds seems to have been overtaken recently, but there is no doubt that it does cause some people problems.  Other trigger foods include gluten/wheat, dairy, fat, red meat, popcorn.  All sorts of different things and every person is unique.  It is recommended you keep a food diary to work out what your trigger foods are - those that cause you pain, bloating, cramps, constipation, diarrhoea or any combination.  All are signs of possible inflammation or infection.  I also suggest you read the article on Diverticular Disease in the Related Infrmation section of this Forum and trawl through the posts.

    Most people are like you, new to the disease and looking for guidance, but there are others like me, who have been dealing with this for years.  Like you I am 67 and have had this for 16 years.  I can tell you that there is no cure - this is a disease for life, but it can be managed with dietary changes and if necessary lifestyle changes.  It is not unusual to feel stabs of pain for weeks or even months as your insides heal.  This can be very frightening as you wonder if another flare is on the way.  Rest, suitable painkillers, lots of fluids and see the doctor if concerned.  After my first flare it took a month to ease, then I went 6 years before my next flare.  Again a month to heal and a 4 year gap.  But I have had 3 flares in the last 9 months, with pain of varying degrees most days.  But I am almost back to normal now and only have pain if I eat something I know is a trigger.  So it does get better, but requires patience and care. 

    As you have been told about a perforation I think you need to be extra vigilant.  Surgeries vary - from just removing the infected part and rejoining (no bag) to slightly more extensive with a temporary bag and later re-attachment, to a permanent bag.  Again people have posted their experiences about the surgery - the pros and cons.  One consultant recommended surgery for me last October, but his boss overturned it and I am managing OK without.  So I think you need to research well and think long and hard.  Best wishes

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    • Posted

      Hi Felinia

      Thanks i am in UK, initially treated on NHS but thinking of going to a private consultant as although NHS is excellent I want to be the main instigator of any procedures.I had an inital attack followed four weeks later witha more severe attack witha small perforation,now just finished antibiotics and await internal (Colonoscopy) but CT showed diverticula on most of large intestine so expect some surgery in near future. I keep getting some awareness pain,sometimes as i move or bend but overall it seems OK I am keeping off red meat ,high fibre and drinking lots of water (lack of which I now beleive was one of the main factors in me getting D.) Havent thought about fibre intake (Flybogel) or mild laxatives as I am having no problems AT THE MOMENT! 

      I have no idea what the signs of another attack are and no idea what foods will be triggers so a bit blind at mom. I tend to travel a lot and am concerned as to how this will develop. I am going to carry an emergency pack of Antibiotics so will have some back up if I get another attack. Do many people get attacks in just a short space of time or am I just unlucky?

      Phil

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    • Posted

      Hi Phil

      The normal signs of an attack start with low left hand sided pain or discomfort, but this can be confused with the pain you are currently getting at present as your insides heal.  I too had intermittent pain when bending, stretching and lifting as I healed.  The other signs are that the pain gets worse not easier, you can run a temperature with fever/chills (ie infection), you feel generally unwell, you can get gut spasms, like you would with a simple tummy bug, and you might get bloated with constipation and/or the runs.  But everyone is different.  I went years between my early attacks, but have now had 3 in 9 months.  Others have reported exactly the same mixture of long or short gaps.  Unfortunately they tend to come more frequently with age.

      It sounds as though you are actually starting to heal up, which is good.  They won't do the colonoscopy until they are confident you have had time to heal.  There are plenty of posts about a colonoscopy.  Most people find it a bit uncomfortable but not too bad - the prep is worst.  Depending on the location of the diverticula they may not be able to do or complete the examination - that happened to me, but they do have the CT scan to go on. 

      To maintain/prevent they usually recommend fluids and fibre but not the insoluble fibre like potato and apple skins.  This is why I have mine mainly as soup, pureed veggies or well cooked.  You are also advised to stick to smaller meals and chew very well.  The food diary is the best tool for identifying what foods if any cause problems. A bit of a bind but well worth it.  The Fybogel is an easy way to get soluble fibre into the system and stops straining, which is bad for DD.  You do go more frequently, but with this disease I always say an empty bowel is a good bowel - less chance of matter getting trapped and becoming infected.  The spare antibiotics are a good idea.  My DD does not stop me travelling - I've just had 2 trips away and have another 5 booked over the next year.

      The UK is very much against surgery unless a last resort or emergency.  My 1st consultant recommended a sigmoidectomy last October, but his boss overturned it and said manage with diet and antibiotics.  It has taken 10 months to calm down but I am doing OK.  It is major surgery, very invasive, and can take a long time to get over.  It is also no guarantee that the diverticulitis won't return.  Again, there are plenty of posts here - giving pros and cons.  It needs careful research and thought.

      I hope you've got your trip to LA sorted out.  Best wishes

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      I am seeing a consultant privately on Friday NHS wasn't interested in me once they ruled out cancer. Discharged me to GP and told I will be called for a colonoscopy in 5 years I am hoping consultant can give me some answers and maybe so ideas

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  • Posted

    PHil take the advice of Felina. She been through this for years and has great guidance. I'm on a twice per day dose of Metamucil and been pain free for 7 years. Only negative is a have more bowel movements than a normal person. This disease is manageable and this forum is a very good resource somebody like you who is new to it.

    Good luck.

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    It seems like the addition of Psyllium Husk is favoured by most suferers but there are other theories that suggest adding fibre is totally the wrong thing to do and we should keep to small stools via eating less fibre lots of olive oil,pastas,dairy and easily digested mush (mashed veg with oil/butter,soups,etc) Confusion to say the least. I am going to try the PH with a bio culture pro biotic and a reasonable live yoghurt followed by smaller meals of light chicken/fish/pasta mash or rice. I am convinced that here in the west we have been educated to beleive that constipation is when you dont go for a day or two wheras it actually means large heavy stools which require straining to pass. Just look at the size of the exit holes in toilets in Mexico,India,china etc and you get what I mean.In retrospect I think thats what has caused most of my problems as I was always regular but size and weight probably caused long term bearing down which inevitably caused ruptures(diverticula) and subsequently Diverticulitis (If only I had known!!!!)  I am still feeling twinges when I walk for a while or do any persistent bending I also get tired very quickly which all infuriate me as I was very active before this and now I am frightened of starting anew attack. As far as insurance on my trip I managed to get a cover for my condition but it wasnt cheap. My original insurance refused to offer me anything. I do not know at this stage how or what may happen in the future and am just trying to be positive. I much appreciate the various responses on this site although conflicting at times it is a great help for managing the depresion which this can easily bring about.
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    • Posted

      When I saw my consultant on Friday he believes I have overdone the fyber so he told me to cut out the fyber and start again I will see what happens over the next week
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    • Posted

      Phil your on top of this and you're going to figure it out. Note this what goes in your body must come out and when you take PH your not only speeding up the processing but also making you stools sotfter to pass which means no straining.

      Keep your bowels working like a fine tune machine and you will experience less problems in that area. Of course small meal portions is good and healthy diet very helpful. You are on the right track my friend.

      Good luck.

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    • Posted

      Hi Phil

      Yes it can be confusing.  When you are having an attack liquids only/no fibre is the suggested diet.  When you are getting over an attack low fibre, slowly building up is the idea.  Then once you are over the attack, high soluble fibre is recommended to help prevent a repeat attack.  Adding Psyllium husk to the diet keeps the stools soft and easy to pass, plus go more frequently, keeping the colon regularly emptied.

      Glad to hear you got your insurance sorted out - it was probably not something that immediately sprung to your mind.  But it really does sound as though you are getting over your attack.  As you improve, I'm sure you will find your confidence and energy returns.  Your diet sounds sensible for the time being - very similar to what I have when recovering.  When you return, you might like to consider small amounts of veggie puree (carrot/swede/parsnip/potato) or blended soup as a reintroduction of fibre.  I hope you can find suitable food in LA - I always struggle when I go to the USA.  Have a good trip.

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  • Posted

    Hi All

    I am about to use some soluble fibre supplement but not sure when to take it. I have the detail re the amount but do I take it before or after a meal? in the morning or evening? What does the team think?

    Phil

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    • Posted

      Hi Phil

      I always lake mine first thing in the morning as soon as I get up, before having anything.  I then usually have a small BM within an hour, then a proper one about another hour later.  If I have to take one in the evening,I have it about 7pm - 8pm, after my evening meal.  No rhyme or reason, but it seems to suit me.

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    • Posted

      Phil I take two teaspoons of Metamucil in 12 ounces of water in morning and also at night before bed. It keeps me regular and it allows the waste to move through the colon at a fast pace. Keep this in mind if the colon is clear you shouldn't have any flare ups.

      Hope this helps you man. Take care

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