Newly diagnosed

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Hi

I'm new to this site, I'm from Australia I just turned 37 in hospital and last Wednesday the 26.4.17 I was hospitalised for 5 days eventually been diagnosed with this horribly disease.

I was put on a clear liquid diet and then moved onto free fluids.

I had tests done and once diaganosed and pain under some what control I was able to leave hospital with antibiotics.

They sent me home with no diet plan no menu plan no information on what I need to do except call a specialist with a number and book in for a colynoscopy in 3 weeks.

I have come home with no idea of diet what to do what not to do. I investigated on the WEB but nothing relevant.

Only blaza info on what no to eat but very contridictory.

I have had the gastric sleeve almost 2 years ago and all the education I received back then on what to eat with my sleeve is out the window and highbfibre diet is something I never did pristine first any room then veggies , salad etc

I consulted my pharmacist on going on the diet shakes for a little while as it has all the viatamins in it and not high in fibre 3.4 g as I didn't know what else's to do.

I'm still on my antibiotics and I have been drinking my shakes. I felt better yesterday and had a little bit of shredded fresh chicken and this morning I'm feeling it.

I don't know what to do.

Can any one please list foods recommmwnd a website on food we can eat and not.

I'm so confused and concerned.

Can anyone shed some light or suggest anything.

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  • Posted

    Hiya im from Ireland and was diagnosed last November 2016.and my story is exactly like urs word for word, it's terrible nobody seems to no anything about diverticulitis. I went for a colonosapy and i asked the doc what can i eat all he said was drink 3 pints of water

  • Posted

    I was diagnosed in Jan 2017 lousy way to start the new year! I was on dreaded antibotics too! I was ALSO told nothing! I was just wanting to know what kind of shakes are you drinking? 
    • Posted

      I forgot to ask you what test did they run on you to come up with the diagnoses?
  • Edited

    I had ct scan with dye, ultra scans asn internal as well S they initially thought I had ovarian issues and bowl issues and lots of blood tests.

    I'm on th opti fast shakes in oz they use these before weight loss but it has all the vultamons an fibre.

    The paharmasit said to trial them to see if they irritate my bowl. I still have pain. But I figure it's not food .I don't feel comfortable eating food until my pain eases a little and I'm still unsure what to have.

    • Edited

      Hi

      Sorry to hear you have also got this horrible disease, but on this Forum you will find all the information you can't get from the medical profession.  Basically they don't know, as everyone is very different. 

      We have each had to find our own way and what works for us.  As it has been less than 2 weeks since your attack, you still have quite a long recovery period.  It is normally suggested you stick to liquids for a couple of weeks until the antibiotics are finished and the pain subsided a lot.  However, you will still experience stabs of pain for weeks, possibly months until your insides heal from the infection.

      As for your liquid diet, as you have a gastric sleeve, this might be a bit tricky for you to work out what to consume.  The fluids I take at this stage are meal replacement drinks, like Complan or Slimfast, because, as you say, they contain supplements.  I also have soup - clear consomme, or ordinary soup which I blend to a smooth liquid.  In fact I make my own.  Whilst you are on a low residue diet of liquids, you should avoid fibre, so something like cream of chicken soup might be suitable.  Other liquids include yogurt, clear juices like apple juice, jelly, tea/coffee.  Then you can slowly reintroduce small amounts of soluble fibre back into your diet - nothing harsh like potato or apple skins.  At this stage I suggest you keep a food diary to see what irritates your tummy.  You have already noted you were not ready for chicken yet.  I suggest you search for a post from julia1040 and all the replies, as that covers diet very thoroughly.

      Another thing you may be experiencing is constipation.  This is a common side effect of the antibiotics.  Also input = output, and if you don't put in much, not much comes out.  Please don't strain or self medicate.

      You will have been asked to wait to book your colonoscopy, as it will give your insides time to heal first.  It is advised not to have the procedure whilst the inflammation is active.  This will confirm the CT scan results. Most people think the preparation beforehand is pretty unpleasant.  You have to clear out your whole system, and that means sitting on the toilet for quite a few hours.  It is best to prepare the bathroom in advance and you should under no circumstance try and work after taking the prep.  There have been lots of posts about the colonoscopy on the forum which I suggest you read with an open mind.  Some people sail through, but others do find it unpleasant and uncomfortable.  I think it depends on the location of the diverticula.  Mine were in a bad spot and made it impossible to insert the scope. 

      I hope this helps a bit.  I can't promise a quick fix - most of us feel rough for weeks, then slowly improve.  So many of the posts here are from people who are just in or getting over a flare, or first timers, and feel rough.  Others like me have been through it all before and know things can get better.  This is a disease for life but with the right diet it can be managed and many of us can go years between flare ups.  I went 6 years between 1 and 2, then a further 6 between 2 and 3.  Best wishes

    • Posted

      thank you Felinia for your post... newly diagnosed at 60... just saw doc for followup to colonoscopy 5 days ago.... any ideas how long flares last?... doc was already talking hi fiber but I am still having pain intermittently... how do I know when it's time to start changing from low residue diet?..... colonoscopy showed diverticulosis and peptic ulcer.... started med for ulcer on 4/28.... any help greatly appreciated

    • Edited

      Hi Cathy

      This is a bit of a tricky one as the pain from the peptic ulcer may be confused with the pain from Diverticular Disease.  My brother had ulcers and he was diagnosed with the Helicobacter Pylori virus as the cause and treated for that.  If I recall, that's a triple whammy of drugs over a couple of weeks, and it finally left him pain free.

      The pain from Diverticular Disease is a different beast.  I notice you said Diverticulosis, not Diverticulitis.  The difference is:  osis means you have Diverticula,  isis means there are symptoms like infection, inflammation, bloating, pain, gut spasms, fever, bleeding, constipation, diarrhoea, (some combination of) which has required medication.  In my various flare ups over 16 years I have had all of these at various times. 

      So were you prescribed any medication specifically for Diverticulitis?  The problem with this disease is that all the terms are so similar, it is easy to mix them up.  If it is just Diverticulosis, it means you do have diverticula in your colon, but they are often symptom free and require nothing but diet modification.  At out age over 60% have diverticula and of those over 75% are symptom free. 

      I am wondering if you had an attack of Diverticulitis, the infection has cleared up and you are just left with Diverticulosis. 

      Another question is - was the colonoscopy just a routine one, or prescribed for a specific reason?  I know some countries routinely carry them out as part of a well-person screening, like a mammogram, whereas here in the UK they are only done as a diagnostic tool.

      The pain from Diverticulitis can niggle on for weeks or even months, sorry to say, as your insides heal.  However the general consensus seems to be to slowly start to reintroduce small amounts of soluble fibre into your diet after a couple of weeks.  The other important thing to do is keep a food diary of all you eat, and a note of whether anything triggers symptoms.  My triggers are gluten, wheat and full fat.  For others it can be dairy, red meat, nuts, popcorn - all sorts of things and we are all different. 

      That is why the information is so generalised, one solution does not fit all.  I am prescribed a soluble fibre supplement which I take daily.  It is a powder which you mix with 12oz water and chug down immediately before it thickens and turns slimy.  This bulks and softens the stool, makes it easy to pass and acts as a mild laxative.  A cleaned out colon is a good colon, as it does not allow bits of material to get trapped in the diverticula and set up an infection or inflammation.  The US version is called Metamucil, the UK is called Fybogel.  Many of us also take probiotics to ensure good bacteria in the gut.  How that would go with your ulcer though I don't know - I would suggest that you would need your doctor's clearance.

      If you look on the right hand side of this page, you will see a section called Related Information.  There is a paper: Diverticula (including Diverticulosis, Diverticular Disease and Diverticulitis).  If you click on that it gives a very full explanation of all the differences and dietary suggestions.  You might find this very helpful reading, but as I said, we each have to find our own solution.  Best wishes

    • Posted

      3 of my children had pylori cleared up with strong antibiotics. My son had a colonoscopy same time as me all was clear. I was told I had multiple diverticula only had one really bad flare up since September I have found beef cheese ice cream fried food fizzy drinks give me diarrhoea so I stay off them the only fruit I swam to be able to eat are bananas
    • Posted

      I was given cipro and flagyll for suspected diverticulitis..... then had colonoscopy and endoscopy... diagnosis.... peptic ulcer .... diverticulosis.....no additional meds for diverticulosis... i am still on low residue but broccoli goes well... oatmeal sometimes...... between the two and a back issue I am doing my best but itsa struggle..... drinking lots of water and taking a probiotic.....i do feel like there is healing going on as pain is off and on but not as bad..... hoping I can recognize when its time to start slowly adding fiber.... thank you so very much for the support
    • Edited

      It took me about 4 days before I felt like anything other than soup Then I only had chicken mash and veg on a small plate Trouble was it was over Christmas so I missed out on Christmas dinner
    • Edited

      Hi Cathy

      This makes things a bit clearer.  They thought you had diverticulitis and treated for it, but diagnosed diverticulosis with the colonoscopy, which means they didn't find any infection and inflammation.  The way you are describing the pain now fits nicely with your insides healing.  That means the cipro and flagyl did its job, and all you have to do now is modify your diet to keep the diverticulosis under control. 

      As the pain is easing off - and as I said before that can take weeks or months - once your meds for the ulcer are finished (assuming it's not ongoing), I would suggest that would be the time to start to reintroduce fibre.  I still get niggling pains 9 months after my attack last August, and I started carefully with fibre in September.  If I waited until the pain had totally gone, I'd still be on liquids, and a lot slimmer!!!! lol 

      After my 1st attack 16 years ago it took a month for the pain to go, and I didn't have another attack for 6 years.  Then again it was about a month and a further 6 years between flares.  Now I am older and my disease has gone from moderate to severe, the attacks are more frequent and I have to be much more careful what I eat.  When you are pain free it is easy to forget, like I did, and eat things that don't do you any good.

      When I started to reintroduce fibre, I stuck to a meal replacement drink and blended soup for breakfast and lunch, then meals like steamed fish with vegetable puree and yogurt.  The fibre was in the soup and puree, but blended to slip down to be easy to digest.  Now I have porridge made with water, scrambled eggs, omelettes, well cooked veg (or I chew very thoroughly), salads (although some people can't take them), grilled chicken, steamed fish but no red meats as they are harded to digest.  I also avoid fried or spicy food, nuts, seeds, gluten, skins, full fat.  But this is what suits me.

      You might find eating out or with friends a bit tricky at first, but you can usually make sensible choices from menus, and just explain to friends what you need to avoid.  We frequently go to a particular restaurant where the chef is a friend and he tailors the meal for me.  I would pass on the red hot chilli smothered in cheese sauce served with french fries but go for the baked potato (leave the skin) with something like tuna or prawns in light mayonnaise.

      But it will be trial and error, and you will also have to build in what to avoid so you don't aggravate your ulcer.  My diet also takes account of my hiatus hernia and pre diabetes.  Good luck and feel free to ask anything.

    • Edited

      thanks again Felina so much... appreciate the support. Every day is a different day , or so I am learning... today definitely not a good one.... tried ground turkey last evening.... certainly doesn't agree with me.... I noticed the advice about aloe vera juice.... do you think that is advisable when still flaring?.... I also have a supplement.... licorice root which came recommended at health food store but I will b checking with my doc bfore trying it.... thanks again for your kindness and advice..... oh and forgot to ask what you think of smoothies?

    • Posted

      odd thing... my ulcer is not causing pain... i just feel hungry alot..... I think I will stick with low residue for awhile tho I am anxious to start changing my diet
    • Posted

      Hi Cathy

      Yes it can vary day to day.  Perhaps you were not ready for the turkey, or what did you put in it?  That might be the reason.  Aloe Vera is the extract of juice and gel from a plant, found in the Canary Islands.  It has been used for centuries by people as a natural healing remedy, both internal and external.  I don't think it will do any harm, but be warned - it tastes revolting.  I take one teaspoon morning and night, and within a few days of starting, the pain reduced.  But I didn't start until the flare was over, and I was just left with residual pain.  You need the pure juice, not the juice drink with other stuff added to make it palatable.

      As for smoothies I dont know - I would say if they contain skin and pips they are a no-no.  I can't take them at all as the acid in fruit ones triggers my hiatus hernia.  And with your ulcer you must be careful.  The vegetable ones will contain fibre and some veggies are very indigestible.  I personally find them as revolting as they look!  My friend and I both like peppermint tea, and another friend swears by ginger tea.  All trial and error.  Low residue is a good idea for the time being - I find cream of chicken soup and yogurt quite filling although the diet can give you anti-social tendancies!

    • Posted

      I find yogurt upsets my stomach now I used to eat them all the time I can only eat bananas other fruit upsets me bit is a lot of trial and error
    • Posted

      Thank you for your very helpful reply! I was diagnosed 3 months ago by colonoscopy, and am finding my way through this. I had a CT scan 6 weeks after the diagnosis and treatment, which showed no diverticulitis, so the antibiotics worked. May I ask if you have also experienced anxiety with this? I have had bad anxiety, seemingly for no reason, but I have read that anxiety can go with diverticulitis. I have been searching to find others who have experienced the strange mental symptoms too. I can normally reason myself out of anxious feelings, but not with this, and that makes it worse! I wonder how long it takes to return to normal, and if the anxiety will ever abate?
    • Posted

      My anxiety has been sky high since this. Before I share my anxiety symptoms I'm dealing with can you share yours with me the physcail symptoms of your anxiety please?

    • Edited

      Yes, it started as sort of "butterflies in the stomach" and I just thought it was me worrying about "what can be wrong with me?" After my routine colonoscopy, where they discovered moderate severity diverticulitis, I expected to feel relief, knowing exactly what was the problem, but the anxiety continued, but I thought it was because of the infection. I was on antibiotics and liquid diet for weeks, but still feeling the very nervous, shaky inside, can't talk myself into being rational, anxiety. I found myself going off into all sorts of scary self-diagnosis of other medical problems because I couldn't fathom that anxiety was part of diverticulitis. I returned to my doctor and told him about the anxiety, but he didn't seem too worried. He sent me for blood work and a CT scan. My blood tests were perfect and the CT showed "no divericulitis" so the antibiotics must have worked. I thought that would end the anxiety, but I'm still struggling 6 weeks later, even though I know all my tests were ok. I'm watching everything I eat and taking probiotics and aloe vera. The weirdest thing is that occasionally I feel very apathetic and like I'm not very optimistic, and I don't know if that goes with anxiety or what. I'm normally very up and happy, although I've been a "worrier" most of my life. I've never experienced anything like this. I will have hours where I feel better and more like myself, but then it will wash over me and I can't seem to shake it off. It's almost a heaviness that makes me feel like I'll never be myself again. Earlier on, I would feel ok upon waking up and it would start after I had been up awhile, but now I have mornings when I feel it almost immediately when I get up. From what I've read here I am starting to think I'm not alone in this, and that helps!

    • Edited

      Hi

      A lot of people with this condition do seem to feel higher levels of anxiety and have a past history of worrying, exactly as you have described.  I do not feel the same as I did before my flare up last August, but I did find the CT scan reassuring as it ruled out cancer.  My symptoms are more physical, like a loss of appetite and more frequent need of the toilet.  But there are several members of this forum experiencing anxiety, who I am sure you can share your feelings with.  Best wishes

    • Edited

      Diarrhoea has started again I have only eaten soup and bread and drank water. I have some antibiotics in from last time the dr gave me them but I didn't take them. I am thinking of starting them today just incase it's a bad flare up. What do yo think x

    • Edited

      Hi Susan

      I would not describe just diarrhoea as a bad flare up.  To me a bad flare up is where there is infection and inflammation, causing pain, a tummy that is very tender to the touch, fever, chills, swamping muscle spasms or cramps with and without diarrhoea/constipation.  A bad flare leaves me rolling on the floor crying in pain.  A minor flare causes me some pain on movement and to touch, plus constipation.  My GP treats this with fluids only for a few days and painkillers, to see if it settles.  Do you have any of these symptoms and if so to what extent?  If not it sounds more like a tummy upset. 

      It is so easy in your anxiety to think every niggle, loose movement and twinge is a flare up.  I would say that you are doing the right thing in sticking to fluids, and if it is still there tomorrow, getting a phone appointment with your doctor to see if they recommend medication.

    • Posted

      Thank you I have just a little pain no temp or fever no blood. So I will do what you say and phone in the morning if it's still there. Enjoy your holiday x

    • Posted

      Hi

      If you need to phone tomoroow, just be sure to let them know you have been following the fluid only for 48 hours and still have symptoms.  I am currently ironing prior to packing and cannot wait to get away!!

    • Edited

       Very nervous, shaky inside is exactly what I feel and then a very scary feeling in the chest that thows be into full blown panic! It's hard to do everyday task with these symptoms. I am also premenopause/ menopause and they can cause the exact same symptoms in cluding bowel issues

    • Edited

      I have had some heart racing, too, and a "gloom and doom" sensation. When I try to talk myself off the ledge, so to speak, I realize that I shouldn't feel like this....which scares me even more into thinking I must have something horrible that they missed. I know exactly what you mean about functioning while dealing with these irrational thoughts. I'm hoping that this all subsides as I give it time to heal, even though the CT found no diverticulitis. I could have had the infection for a couple of months before I had the colonoscopy when it was diagnosed, so it could take time I guess. I am 63, so I went through menopause 10 years ago, but that was an "interesting" time of life, as well!

    • Edited

      I am 70 I think I have had DD for many years always had a dickey tummy couldn't eat certain things lots of pain. I would believe the colonoscopy it shows everything up

    • Posted

      This started for me as anal/rectal pain, and no abdominal pain. So by the time I finally went to the doctor a couple of months had passed. Then I had to wait a couple of weeks for the colonoscopy, which surprisingly showed the diverticulitis that the gastroenterologist termed "moderate." The gastro doc said he'd never seen diverticulitis cause rectal pain, but he found nothing else that would cause it. I went on antibiotics for 7 days, which was brutal. 5 weeks later I went back to my GP because I was certain I was dying from something else because of the anxiety, and he did blood work, urine, and the CT to see if I'd healed from the diverticulitis. I really have only had mild discomfort in the lower left that feels a bit like menstrual cramps used to, but they are just mild and don't last. I feel blessed when reading all the other comments here, because what I'm experiencing in the tummy department isn't as bad as some, and I'm praying the anxiety will move on eventually! I'm a wedding florist and I need to be on top of my game when the season starts in a few weeks. The thing I notice about the anxiety is that I can't concentrate and be up and positive when talking to brides, and that just kills me! I feel like I've lost "myself."

    • Edited

      I have stayed in the house that much due to being afraid I may need the toilet or have a accident I have caused myself pain in both knees and hips I always went out every day shopping or meeting friends kept myself busy Since DD took over my whole life as changed not just diet but social. I am worried at the moment because I am having my bathroom changed and I only have one toilet therefore if I need to go what do I do. There is a pub at the end of my road so I am planning to spend a lot of time in there but what do I drink I don't drink alcohol and I can't have fizzy drinks.

    • Posted

      Karo, these symptoms with menopause can come back with vengenace even though you  thought you was through it! I'm 60 my last womans time was June 2016 and menopause has hit me like a ton of bricks. Plus it can drop your blood sugar every hour to 2 hours and the feelings and symptoms are the same. Do you are anyone else on here get the sweats?

    • Posted

      I don't get sweats, I'm usually cold. The drop in blood sugar would explain the shaky feeling. I had a pretty easy menopause, too, but I guess I could be having some hormonal issues because of the diverticulitis.

    • Posted

      Gosh that is rough!! I hope they finish your bathroom quickly!

      My anxiety isn't over needing to find a toilet because, so far, my habits in that regard have stayed pretty normal. This anxiety is just the overwhelming feeling that something is wrong with nothing to substantiate it.

    • Posted

      Fear is a terrible thing. I went through that when I had postnatal depression. I thought even a cold was something worse I believed I was going to die all the time I can't remember how it stopped I think I just woke up one day and the feelings had gone. I do have the odd panic attack now and again. I hope you feel better soon x

    • Posted

      Enjoy yourself Falina! Looking forward to seeing more of your comments and others... thank you so very much... you have been a lifeline! I am waiting one more day but i believe I am ready to try adding fiber... i have been eating broccoli and both white and sweet potatoes and yams with no ill effects... how much fiber and what works to start out with? value everyones opinion and thanks

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