23 With Diverticulitis... Help...

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Hello,

I was diagnosed with Diverticulitis at 22 after I had my 2nd really big attack. Less than a year before, I was 21 and had my first attack, but when I went to the ER, I was told I just had a viral infection. I was given antibiotics which seemed to do nothing. I got better and went on with my life. After my 2nd attack just 8 months later, I went to an ER again and they had me set up an appointment to get a colonoscopy to be sure if I had Diverticulitis or not.. That is where I found out I did in fact have it. I have since had 2 more attacks and I am now 23. The most recent one (6 days ago, was so bad it lasted 3 days and I couldn't eat or drink anything without feeling like I was going to die. I had missed 2.5 days of works and I am now very concerned that it will only get worse.. Especially considering I know NOTHING about Diverticulitis. I was told (by my colonoscopy doctor that it was similar to Celiac Disease?? I am wondering if I should be doing more to prevent this from happening because I am tired of going through this pain every few months and then taking multiple days to recover (I still don't feel 100%). I need help.. I have no clue what I should be doing in regards to this. Do I need to make an appointment asap?

Thanks for reading.

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14 Replies

  • Posted

    Hiya

    I would make an appointment with your gp to discuss it and also do your own research online . Also keep a good diary as there might be something your eating triggering it . I've only had one major attack which resulted in me having an abscess. That's ashame you've had it so bad esp being so going I thought I was young when I was diagnosed n I was 38.

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  • Posted

    Dear Maryann

          Sorry this is happening to you! Yes you must make changes to your diet Stay away from fruit that has skin on them at the very least peal them. I know the first attack I had was from eating a lot of grapes! Cook vegetables until very soft. I find fish and chicken are well tolerated. I can have ground beef also. Make a food log!!! Note symptoms and then go back and see what u ate.

    When u start having symptoms of pain, fever, diarrhea go to liquids only and then low residue diet grad add in fiber.

    Keep going back until you get answers!

    You are so young to be miserable!

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  • Posted

    Dear Maryann

          Sorry this is happening to you! Yes you must make changes to your diet Stay away from fruit that has skin on them at the very least peal them. I know the first attack I had was from eating a lot of grapes! Cook vegetables until very soft. I find fish and chicken are well tolerated. I can have ground beef also. Make a food log!!! Note symptoms and then go back and see what u ate.

    When u start having symptoms of pain, fever, diarrhea go to liquids only and then low residue diet grad add in fiber.

    Keep going back until you get answers!

    You are so young to be miserable!

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  • Posted

    You need to read the article about Diverticular Disease on this Forum.  It will explain to you in detail what Diverticula, Diverticulitis and Diverticulosis are.  A brief summary:  Diverticular are small pockets bulging out of the colon wall.  The general condition is called Diverticulosis and is generally symptom free.  When the Diverticular become inflamed and/or infected the condition is called Diverticulitis. 

    If the Diverticula are just inflamed, there is usually pain in the lower left quadrant of your stomach, but it can be in other places as well, depending on the location of the inflammation.  The usual treatment is a fluid only diet for at least 48 hours, to allow your bowel to rest, with a painkiller approved by your doctor and heat pad.  Then the diet should consist of low residue food (no fibre) like mashed potato, steamed fish, clear soup, crustless white bread etc. in small portions, well cooked and well chewed.  As the symptoms settle down, you can start to introduce soluble fibre (Google it) in small quantities and slowly build up the fibre.  Keep a food diary to try and identify any foods that might set you off again.  You should avoid insoluble fibre (it comes out the same way it goes in - ie corn, skins etc).  Some people have no trigger foods, others have some, and some poor folk have lots of trigger foods.  Everyone is different, and you have to find your own way by trial and error.  Doctors, unless they are fellow sufferers, are pretty clueless.

    If the Diverticula are infected you will usually have other symptoms apart from pain:  cramps, fevers, chills, swamping pains like childbirth, nausea, vomiting, altered bowel movements (constipation and/or diarrhoea) in some combination.  In this case you need antibiotics.  They are NASTY and very strong.  They strip out all the bacteria from the gut - good or bad - and the side effects are more unpleasant than the illness.  It is best to take a good probiotic along with the medication, and for up to a year afterwards, to put back the good bacteria.  You should also follow the same diet as for inflamed diverticula.  You will feel lousy for at least 2 weeks, and it is usually 4 - 6 weeks before you start to feel better.  The residual effects are often depression, fear of eating and loss of confidence.  If you think you have an infection, go to your doctor as you may need the medication to clear up the infection.

    This is a disease where there in NO quick fix, it requires patience, a lifestyle change and is with you for life.  You will need to follow a healthy diet, with soluble fibre, for the rest of your life, keep your weight under control, exercise (basically what every doctor recommends for everything).  It may seem overwhelming but you can follow a perfectly normal active life.  I have managed this disease since 2001 with just 3 flares in the first 14 years, whilst playing competitive sport.  This Forum is full of tips and advice on management and diet. 

    I am guessing you are USA based where they treat the disease much more aggressively than here in the UK.  Elective surgery is often suggested in the USA to remove the colon, but that has its pros and cons as DD can recur or it causes other complications like hernias, adhesions.  I personally would avoid surgery unless your quality of life is severely compromised - here in the UK surgery is only done for emergencies in treating the rare complications of the disease like blockage, fistula, abscess, perforation.  Best wishes - I hope you feel better.

     

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    • Posted

      What an excellent post, very helpful indeed.  

      I have found that eating regularly helps me and surprisingly I started eating white bread sandwiches (never was a fan of sandwiches) and this seems to have kept my symptoms at bay.  However, recently my lack of eating and enormous stress at work seems to have caused another flare up so currently on antibiotics.  

      This is the 3rd flare up I've had and was only diagnosed with DD a month ago (having had a colonoscopy).  My concern though is that the out of hours GP only prescribed metronidazole whereas on the two previous occasions I've had both that and amoxicillin.  I hope the metronidazole is enough ?

       

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    • Posted

      Sometimes Metronidazole is the only prescription, but I always got prescribed with Cefalexin as well.  Some people on just the Metronidazole report it is not enough.  Just recently my GP has been reluctant to prescribe anything at all, citing concerns over antibiotic resistance.  He switched me to Doxycycline eventually, reluctantly.

      I am concerned you are reporting that you have had 3 flare ups in a month or am I misunderstanding?  It takes 4 - 6 weeks usually for a flare up to subside, and the pain experienced during that time is usually part of the healing process, not a flare up.  But people who are new to the disease often do not know this and suspect a flare.  A flare comes with cramps, fever/chills, nausea, changed bowel movements, feeling lousy, all from the infection.  If I do not have these symptoms, my GP says it it just inflammation, not infection and won't prescribe antibiotics.  I follow the liquid only then low residue plan and that usually does the trick.

      There should have been a report from your colonoscopy to your GP.  Have you discussed the results -  if not, you should, and let them know of the frequency of attacks.  GP's in this country don't seem to know much - my previous GP asked me if I had a medical background as I knew more than she did.  Also they are hamstrung by the NHS - treat at home with minimal drugs and do nothing else until an emergency.  So the forum is the best place for guidance.

      You seem to have identified a partial dietary cause, which you can address.  However, stress is also a major cause and more difficult to deal with.  I personally go for treatments like massage, reflexology or a facial, and that helps me to relax - in fact I usually fall asleep.  Others do exercise classes like yoga or pilates.  But the cheapest treatment is to make "me time" for yourself at home, where everyone leaves you alone for a time - have a face pack, chill out with your favourite music, curl up with a glass/mug of something that doesn't aggravate you and read, do relaxation exercises on your bed - you get the idea.

      But if the pills don't work you will have to see your GP.

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    • Posted

      Hi Felicia

      Apologies as I didn’t make it clear. I had two flare ups last year and having one now. 

      My doctors arranged a referral for colonoscopy which I had earlier this month and that confirmed DD 

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    • Posted

      Hello Felinia - your post was very interesting.  Unfortunately I was diagnosed with Diviticular/Diverticulitis when I was in my early 20s.  I am now 61.  I obviously have regular colonoscopies which show I have extensive diviticular (thankfully my ulcerative colitis is in remission).

      I was hospitalised for a week November 2017 and had co-amoxiclav antibiotics iv.  

      I am a worrier and am going through lots of personal issues at the moment.  I also have a flare up of DD.  This morning have been put on a course of oral co-amoxiclav. The doctor's (in my surgery) usually point out that there is no correlation between DD and stress. I am so interested to read that you say stress is a major cause for your DD.  Just so relieved that you have highlighted this - it has put my mind at rest.

      Thank you.

      Vivey

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    • Posted

      Lots of people on this forum have said stress is their major cause.  In fact there seems to be quite a well recognised phenomenom where there are physical problems resulting from non physical issues.  I had a very demanding job and that didn't help.  I also have food issues with gluten and full fat.  Now I am retired stress is less of an issue, but food is always there!

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    • Posted

      Hi again Felinia 

      I also wanted to say how well you pinpointed the symptoms of a flare up.  As I said earlier, I had two last year, first in May and second in November.  I believe I've had the very similar symptoms in the past but possibly only inflamed not infected.  The signs were there last week with nausea starting over a few days and then the fever/chills which prompted me to visit out of hours GP as I was sure it's a flare up.  

      I found your post so helpful as I also didn't realise it can take a good few weeks to heal from a flare up and the pain can still continue on and off.  

      What puzzles me though (and at times scares me) is why the symptoms seem to come on in the middle of the night (and usually very severely).  I've often been woken up at night by severe cramping pain and/or severe nausea.  At one point, I was almost scared to go to sleep for fear of what will happen at night.  

      I can quite understand why so many of us end up with anxiety as well as I feel sometimes I'm living in fear of having a flare up at any point but realise I'd not been strict on adhering to the diet I realise was helping me from November to now and that is regular eating, (little and often) and for some bizarre reason, a lot of white bread in my diet (something I've never been a fan of).  

      Any comments/advice are much appreciated.  

       

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    • Posted

      I am lucky as I don't get the symptoms at night.  What I do find though is that I wake up in the morning with bloating and pain, which are relieved after my first bowel movement, usually within 1 - 2 hours of getting up.  So I know mine is probably related to my bowel filling up.  During the day, during a flare and recovery, I can get pains in certain positions, like bending, stretching, lifting, sitting, which I attribute to squashing the inflamed/infected areas of the bowel.  Perhaps yours might also be related to the way you lay or move during the night - only a guess though.

      This disease is different for everyone, and an individual learning experience.  I suspect I am quite lucky, as I don't seem to suffer as badly as some, although I have been through the rolling on the ground, crying in agony bits during the height of a flare.  With the first attack you can wonder if you are ever going to feel better, but over the 18 years I have dealt with this, I have learned what to do that works for me, and I do feel better eventually.  I think knowledge does make it easier to deal with, and that the fear of the unknown is the hardest thing.  That's why a forum can help - you share with others going through the same thing, and those who have come out the other side.

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  • Posted

    I had the same.  Went to ER 3 times.  Doctors didn't help at all!!!

    First, start eating greens (just make like a Kale smoothie or spinach smoothie).  If you have ever taken antibiotics then your gut flora is shot.  Eat fermented foods like sauerkraut or cucumber chip pickles to boost your good gut flora.  Do you have dogs or cats?  If so you may have parasites.  FYI, I've had a bad stomach ever since I was a teenager and now at age 58 I am finally getting this figured out.  Basically, get the good gut flora going, take enzymes every day if your over 40,  take a gall bladder supplement too.  Do your research on line about these topics and I bet you'll be on your way to a better stomach.  I am and it is so nice after a lifetime of stomach problems. Good luck..

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    • Posted

      Please, by no means take this in a bad way, but everything you just said to eat sounds awful. LOL. I absolutely hate all of those! 😂 God this sucks.. I'm never going to eat again because aparently everything I do like and eat is wrong and bad for me... why me..? 😧

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    • Posted

      Good morning, 

      I am going through the same exact thing. I am lost and desperate. This is taking over my life. Have you made an appointment to go see the specialist? 

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