Is this DD?

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This is my very first post on any forum but reading through there seems to be good advice offered.Last year my Colonoscopy showed nothing as did ultra sound. Had CT scan in February 2017 and diagnosed with 'likely' diverticular disease. Some inflammation seen in sigmoid colon with some thickening of bowel wall .No antibiotics offered. Consultant said I can eat anything but no further advice given. Have had low level intermittent pain(mainly left sided pain ) most days for a long while but no constipation or diarrhea. Regular bowel movements .I do take a probotic every day and eat a high fibre diet. GP is lovely but offered very little advice and said it was diverticulosis.I suffer from health anxiety and was put on 10 mg amytryptiline which does help.I thought a CT scan would show diverticular pockets but am not sure if the 'likely' diagnosis means DD or not as not clarified.. Surely inflamation seen suggests diverticulitis.I am at a loose end with this as the pain on a daily basis is quite depressing. I am not sure what a flare up is, so would be grateful for any advice on the way forward. Having read discussions on this forum I understand that there are people with much more severe symptoms than me.

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  • Posted

    My doctor said that some people show signs with intermittent discomfort. Others don't even notice or are aware of it. I'm thinking you are like me and very aware of what's happening. If you were having a flair up you would have noticeable discomfort, lack of desire to eat and an all over "I just don't feel well".

    Watch what you eat and see if it is worse with certain foods. My personal feeling point to how your body digests certain food groups. Hope this helps reassure you.

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    • Posted

      Thanks Madeline.I don't think I have ever had a flare up as my appetite is normal and I do not feel unwell. Because my Consultant told me I could eat what I want I have not really watched my diet so maybe this is an area I should begin with. I have pain for some days and then it goes away for days so I agree it must be to do with diet. I am still not sure what likely diverticular disease means as a diagnosis but maybe I will ask for a repeat scan later on. I am surprised as how little help is given from professionals. I paid for a private consultation for this very woolly diagnosis with no follow up.

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    • Posted

      I completely understand. I don't think they know themselves. My recent surgeon consultation resulted in basically more knowledge but no real answers. Best of luck. Try to relax. My doctor did say stress and worry doesn't help. When u have discomfort how can u not be stressed.

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    • Posted

      Reading all the helpful replies regarding the pain we experience, can I ask what type of pain you and others experience. I understand a flare causes intense pain. My pain is not cramping or spasms. It is more like twinges and/or a dull ache in the lower left pelvis. It is there for the greater part of a day with some days without pain. It is not bad enough to disturb my sleep and I usually wake in the morning with no pain at all. It is not related to when I eat or to when I have a bowel movement. It seems to improve when I go for a long walk. This has been going on from the beginning of March. 
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    • Posted

      Alison my pain sounds very similar to yours. I do not have it when I lie down and it does not disturb my sleep. Like you , I wake up with no pain. I can go for days without pain then it returns usually after I have eaten.My Bmsare normal and regular. It feels like a soreness inside with twinges and a dull ache which is very similar to you. I do believe mine is food related. I too don't seem to have had a flare but worry I might. I have had this since December. I have had colonoscopy ultra sound and CT scan. The last one diagnosis of 'likely 'DD.

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  • Posted

    I wish I could advise but I have similar symptoms to you. I am waiting for the results of an ultrasound but the radiologist said she saw nothing in that area, just a kidney stone in the kidney. But I am sure my pain comes from the left lower part of the pelvis. Having had a few Ct scans years ago for lymphoma, I know I have some diverticula. I have not had a colonoscopy for ten years so that might be my next test. I have pain many days but it is not severe and is not related to bowel movements, which are normal. Blood tests are normal. 
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  • Posted

    Hi Twinster,

    I use to be in the same situation, I adjusted my diet.

    Some suggestions for you.

    1. Don't over eat, eat small portion.

    2. Try not to drink to much soda.

    3. Eating things like pizza and bagels does not help. Hard gluten breads hard to Digest

    4. Take a good daily probiotic.

    5. Drink more water. Eat more fiber.

    No more flare ups for me

    Hope that help you.

     

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  • Posted

    I think food is trial and error but I was told no nuts seeds I can't eat beef fried food chocolate fizzy drinks good luck

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  • Posted

    Hi

    Your CT scan was result was informative.  Diverticular Disease can have two components, the common diverticula or "pockets" which can trap matter and become inflamed and infected.  The other component, far less often reported on, is an actual thickening of the bowel muscle, which is what your scan showed.  I had a scan last October and this is what the Consultant wrote in his report to me.  "There is extensive diverticulosis in a very thickened tortuous sigmoid colon with a very narrow lumen ...."  I was also given an explanatory leaflet.  I did not have inflammation or infection at the time, but I was still getting daily pain.  The leaflet explained that with the abnormal bowel muscle, cramps or spasms can occur.  Your lack of other symptoms suggest this might be the case.  As others have said a flare up does make you feel unwell, with other symptoms as well.

    As your bowel is fine at present you might wish to keep a food diary, to see if the pain worsens after any particular foods, so you will know to avoid them.  For me it is foods containing gluten and full fat.  Others have mentioned their food tips and no-no's.  You say you are following a high fibre diet, but it may be worth seeing how much is soluble fibre and how much insoluble, then trying to have mainly soluble.  I cut out skins from potatoes and fruit as they are insoluble.  Some of the insoluble vegetables, like corn, I have, but pureed in home made soups.  Best wishes.

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    • Posted

      Thanks Felina for excellent advice but it's so hard to know where to begin and I will do what you suggest. Can I ask you if it's possible to have the pain for months as I've had it on and off since December. It is not debilitating but very uncomfortable. My CT scan showed some inflamation so how do I know it has gone if I haven't had antibiotic treatment? I do have severe health anxiety which puts me in a catch 22 situation but I honestly am floundering with this. I worry that it will get worse without treatment of some sort and also that I am not being monitored as such. My GP is really lovely but I feel I can't keep going back with the same problem. I do not intend to let this ruin my life but accept changes will have to be made. It is hard when the pain fluctuates from day to day and I am drawn into the trap of eating what I like once the pain subsides. It doesn't help that my Consultant told me I could eat anything. I would appreciate any further advice on the way forward.

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    • Posted

      Stay away from tomotes seeds corn red meat and see how you get on I am having a really bad flaire up at the moment had DD for years every time you think you got in under control the worse happens this is the worse pain ever . when I just have a small inflamation I stop eating for a few days liquid only it's called bowel rest hope this helps you .2T winster

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    • Posted

      Hi

      Yes unfortunately the pain can last for months.  I have varying degrees most days and have since last August, from nothing to not being able to bend or lift things.  It can take ages for the insides to heal, long after the actual infection, which the medication is for, has gone.  I take paracetemol occasionally, but you should only take that if you have been cleared by your doctor as it can react with other medications.  

      Different countries have different medication protocols for this disease.  In the USA it seems to be medicate, medicate, medicate for up to 2 weeks at a time with Cipro and Flagyl.  In the UK the standard medication for a flare up is: Cefalexin 250mg capsules - 20 capsule over 5 days plus Metronidazole 200mg tablets - 42 tablets over 7 days.  I think the medications are the same, just different generic names.  However some people report bad side effects, in some cases long term.  So some European countries do not treat with medication at all, just a liquid only diet and painkillers, and let nature do the healing.

      My GP has prescribed me with Mebeverine for the muscle spasms, which should not be confused with the pain of infection, and I only take when necessary.  You might like to consider taking pure aloe vera juice, a natural remedy and good for internal healing.  It tastes revolting but I take 2 teaspoons a day!!  As you have anxiety issues I suspect this is magnifying your awareness of the pain.  I think you have correctly identified that you slip back into your old eating habits once the pain eases - I do too!!  Unfortuntaly you may need to accept that you need to change your eating habits until the changes become normal.  I suspect if your infection had not gone since December you would have had increasing pain or a real flare up and you would have known about it!!

      This disease can be managed, but it cannot be reversed.  So I suggest you look at the Related Information section on this page, look for the turned down page icon labelled Diverticula (including Diverticulosis, Diverticular Disease and Diverticulitis) and read it.  It will give you a better understanding.

      The normal definitive diagnosis for Diverticular Disease is a Colonoscopy, with a CT Scan as a secondary tool.  You could ask your GP about one, and raise the issues about continuing pain.  You could also ask why no medication, whilst saying you just want to put your mind at rest.  Fear of what might be is always worse than actually knowing.  If they know of your anxiety issues they should understand your need to know.  Good luck

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    • Posted

      Thank you once again. It's a pity you aren't my doctor!!! I had the colonoscopy last year which showed nothing followed by an ultrasound. The CT was the final investigation. I think with having the diagnosis of ' likely' DD it put my mind into some confusion. Have I got it or haven't I? With health anxiety that makes not knowing for definite worse. My pain is low level and does not stop me doing anything but I am certainly aware if it. As it fluctuates so does my anxiety!! I have never been offered any treatment for the inflamation as the Consultant said I didn't need any. However I will take your advice on board and change my diet on a more permanent basis. I have read everything I can find about DD but was a little confused as I've never had a flare up just this fluctuating pain. I'm not even sure if it's a pain as it feels like a soreness inside the bowel with cramp like twinges, mainly left hand side.I would like to thank you for your excellent advice.

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    • Posted

      Hi

      Thanks for the extra information.  I'm not a medical person, but as I understand it, the colonoscopy did NOT show any diverticula, and the CT Scan just showed some thickening of the bowel wall and inflammation.  So I can understand why you did not get given antibiotics - no pouches, no infection, no need!  You can get inflammation without infection which is what you seem to have.  The thickening of the bowel wall is part of the symptoms of DD so I think you do have DD but without any pouches yet.  The pain you describe sounds just like the cramping pain I get from my thickened bowel.  If you think laterally, you can get inflammation in all sorts of places - pull a calf muscle and it gets inflamed and hurts.  You limp for a bit and it slowly eases.  With DD it just takes a lot longer.  Easier said than done, but the thing to do now you know there is nothing seriously wrong, is to take pain killers when needed, be careful how you move and eat, and hopefully your anxiety levels will drop and you will feel a lot better overall.  By the way I have been managing my disease for 16 years and I do remember how difficult it was to come to terms with, when forst diagnosed.  I live a normal life and competed actively in sport until my hip gave out - but that's another problem!!

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    • Posted

      Again my thanks to you. Yes it is difficult to come to terms with but also with the vague diagnosis. My colonoscopy and biopsies showed nothing as did my ultrasound. The CT said slight thickening of the bowel wall and some inflamation along the sigmoid wall.I am still confused with the diagnosis of "some likely signs of DD" as I thought it was all related to the pockets and whether they become inflamed/infected or not. I am still concerned about the low level pain which comes and goes and has done for such a long time. Surely there must be something that can alleviate it but as you say it could be diet related. I have never felt ill with this or to hda fever, loss of appetite or diarrhea or constipation so do not think I have ever had a flare up. The pain does get me down as my thoughts go into overdrive but my GP says they cannot do any more tests and not to worry as there is nothing sinister going on. I just wonder how I would know if the inflamation has gone or if that is what is causing the low level pain for so long. I do take acidophilus daily and pysillium capsules to try and help but I can't help my anxiety when I've had this for so long.Maybe I should ask the GP for a blood test. I begin to wonder if I will ever be ' Normal" again. I appreciate all advice given by you and other members on the forum and will alter my diet and hopefully the pain will go away .

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