Diagnosed with Diverticulitis - advice please

Digestive health
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After thinking that I had IBS for two weeks and in a huge amount of pain, I rocked up at the doctor to be told that I have diverticulitis.  That I would now have it for life and would 'soon find out what suits me and what doesn't.'  When I asked for more info I was told to 'Google it.'  There has been not mention of a colonoscopy (thank goodness) or further treatment once I have finished the antibiotics.

​Sounds stupid I know, but does this mean I have Diverticular Disease?  How often do people have flare ups?  What sort of food should I avoid?  Do people get signs of it up front, and is there anything you can do to head it off?  I do not want to get things out of perspective - but don't want this to control me.  Please help

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Hi Helen

How familiar your story sounds , my doctor wrote it down on a piece of paper and said go online and have a look which frightens the living daylights out of you when you do. I found out 2 weeks ago and have finished my tablets and the condition as gradually easing , I am eating chicken , fish , rice , potatoes , eggs but have made sure I don't eat to much in any one go which seems to be ok at the moment but you always have the fear that something may go off again.

I found this site and have a much more positive outlook on the future after reading many of the posts which help with how to manage things.

I honestly think its a bit of trial and error on what you eat and drink as each of us seem to be able to have certain things where others it causes problems.

I am eating more healthy already and feel better for it and will introduce other things back into my diet as the weeks go by so all being well in a few months time I will be leading a pretty normal life and have a clear understanding of what I can eat and also if I do eat something as a treat I will have to manage it afterwards.

You will be fine once you have finished your antibiotics just take things a bit easy and introduce things slowly but it won't be long before you will feel ok .

Rusty   

 

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Hi Helen, if you have diverticulitis then it means you have an infection in your gut and the doctor would usually prescribe a course of antibiotics. It is not unusual for the pain or discomfort to continue for some time after the infection is clear, whilst you are completely healing. Diverticular disease is what the general condition is called, also sometimes referred to as diverticulOSIS (not diverticulITIS which is when there is an infection).

You are right that this is now there for life, however it's not all downhill from here. Be mindful of what you eat, and avoid things which don't break down in digestion very well, such as seeds, skins, nuts, sweet corn is a good example. White meat and fish are easier to digest than red. If you are having pain or discomfort then stick to simple easily digestible foods, if you are ok then you can be more relaxed about what you eat. Try Google for soluable fibre. Also put DIVI DINERS in the search in this forum and find a whole thread of ideas regarding foods.

Finally, if you have discomfort it isn't necessarily diverticulitis, this condition can flare up without infection at times and you have to ride it through with careful eating, stress is a known factor too, so try to relax and not worry. Good luck.

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I am sorry but the only way to diagnose DD is to have a colonoscopy or scan   I know its not a pleasant exsperiance but it will at least tell you if it is DD or IBS   I was told by my consultant to look it up on the internet she didn't know anything about it. My GP is a little bit more knowledgable. But last time I went to my GO he asked me how come I knew so much about DD I told him from the people on this forum. Eating is trial and error I don't eat skins nuts anything with pips no eggs or fried food. I eat only chicken and fish not red meat   But everyone is different. Keeping a food diary is a good idea. Forgot to say I have DD and IBS took me some time to sort out if I was having a DD attack or my IBS was playing up. Thank goodness I have only had 2 DD attacks it's usually my IBS. I hope this helps and you feel better soon 

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Dear all, thank you for your comments and support.  I really do appreciate it and don't feel so alone and confused now.  I am beginning to feel a little better and will take on board all of your advice and comments, so please keep them coming.  I am also following the thread suggested.  I am sorry that you all have the same problem, but your positive attitudes really do help.

 

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You are welcome x

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You definitely need a colonoscopy to confirm diverticulitis. You will then known 100% what you are dealing with 

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Colonoscopy has been mentioned, however I was initially diagnosed after a sigmoidoscopy which is simpler as it only looks at the lower portion where diverticular disease is most common. It doesn't require the 24 hour fast and colon cleanse which is a blessing, just no breakfast and a swift enema. It is uncomfortable but not intolerable.

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Hi Helen..I know this can be a bit confusing at first but this is a great forum and there is plenty of info on the net. I am recovering from my second bout after about 16 months and still a few days of meds to go, taking 2 antibiotics. A few important things to share that you may not have been told..first, it' a good idea to go on a liquid diet after an episode to let your bowels rest, up to 3 days depending how severe it was, then slowly reintroduce small portions of low fiber foods. After the gut heals it's advised to gradually eat more fiber and then maintain a diet that contains a min of 30-40 grams a day. Another important item is that if you have been prescribed antibiotics, begin to take a good probiotic each day at least 2 hours after taking your meds, this will assure proper maintenance of your gut flora. Find one with a min of 7-9 strains and at least 10 billion units in each dose.

Recovery requires a little patience but you'll be fine. After all I have read about this the 3 things that stand out the most is proper fiber intake, maintain good gut health with a probiotic and reduce stress. Best wishes, be well.

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Hi Helen

Susan is right, the only way to be sure you really have Diverticular Disease is unfortunately from a colonoscopy or a CT scan, as the symptoms are common to other diseases of the bowel, like IBS, colitis, Crohns. 

So did your doctor just pluck Diverticulitis out of the air, give you pills, and send you off with no tests, no information and no follow up (typical for a 10 minute consultation when you have to strip then dress and they have to type up their notes in that time), or was the diagnosis reached in a more scientific way (I have little faith in doctors' general knowledge of this disease as you can tell, and I've had DD for 17 years having previously been told IBS with no testing). 

If you had an attack of diverticulitis requiring antibiotics, in addition to the pain you would have had a combination of some of: temperature, fever/chills, swamping cramps, altered bowel movements, tender tummy with hot spots on palpation, back pain, exhaustion, feeling generally unwell.  You should have been tested for infection (blood test, wee test).  If you have diverticulitis without infection (ie just inflammation) antibiotics are not needed and are usually not given.

All the information in your post here from others is sound.  You can expect to feel lousy for a few weeks, particularly as you have been given antibiotics, (the side effects are pretty strong), and have niggling pain and altered bowel movements and frequency for considerably longer.  But this disease, which is indeed for life, is manageable with diet and lifestyle changes.  I need to avoid gluten and full fat, but I can eat some of the foods others have to avoid.

If you are lucky, and make the changes, you may not get another flare up, or go for years between flares (I had just 3 flares in 14 years, and only then because I got sloppy and ate the wrong things).  Many people have multiple diverticula which give them no problems at all - in fact over 50% aged 50+ and 80% aged 80+.  This condition is diverticulosis.  The blanket term Diverticular Disease covers "itis", "osis", and a general thickening and twisting of the bowel.  Not all sufferers have this 3rd symptom, but I do. 

Whilst you are on medication it is best to stick to a liquid diet and as you feel better slowly introduce small amounts of low residue food, building up to a healthy diet with soluble fibre.  see DiviDiners etc.  If you feel twinges and are concerned it is coming back, 48 hours clear liquid diet is advised to give your bowel a rest and allow it to settle down. 

Also you should look to taking probiotics to replace the good bacteria in your gut.  Pills can't tell the difference between good and bad bacteria so kill the lot off - and that doesn't help you process your food.  Lots of advice on here about what's good to take.  At the moment I'm trying "live" yogurt.  The hardest things are:  a) to be patient - it takes time to heal - and there can be good and bad days and b) telling the difference between a healing pain and a recurrence of inflammation or infection.  Susan touched on it because it is only human to suspect the more serious.

I wish you well - quickly!

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Just curious Helen.. what tests were performed for your diagnosis?

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Hi Anthony, thanks for all of the info and advice, it is so helpful as well as giving me confidence. 

Basically I went to the on-call doctor at our surgery (who is acknowledged as a good and experienced doctor to be fair), I told her that I thought that I had IBS and explained my symptoms; severe pain along bottom of abdomen and on left side, nausea, that I felt stomach was 'turned inside out', anal bleeding and mucus.  She examined my stomach, took temp (which was high) and made the diagnosis.  She prescribed two types of antibiotics and codeine painkillers (warning me not to take too many as they could make me constipated.  As I said before she said that I would learn to live with it, google it and to follow a white no fibre diet, gradually increasing fibre.

​That was on the Monday, on the Friday I still had felt little improvement and was feeling pretty confused and distressed.  I went to see another doctor (again who has a good reputation) as I didn't want to spend another weekend in a lot of pain and I wanted to know more about recovery time etc.  The second doctor examined me and said that she agreed with the diagnosis of the first doctor and would have also prescribed the same meds.  She said I needed a bit of patience, which isn't my strongest suit!.  On neither occasion was a colonoscopy mentioned, and having gone on this website I had seen it mentioned a number of times.  Having been back once, I would feel a nuisance to go back again, but I really want to know what I am dealing with.  At the moment, I don't feel up to pressing it but feel as though I should.

​Whilst I am writing this I wanted to ask a really stupid question, how do you work out how many grams of fibre that you have had in a day?

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Ok, first off..there are no stupid questions, that said..your symptoms are right in line with diverticulitis and knowing you dealt with them for some time before treatment, it stands to reason your recovery may take a bit longer.

In respects to fiber, honestly, all that's involved is either reading packages for grams per serving or in the case of fresh produce, check any resource avail incl books and internet and track them.

Remember, low/no fiber at first while gut heals and then slowly incorporate more until a goal of about 40 grams daily is reached. I know how hard it can be to be patient and allow healing being an active person myself who enjoys the outdoors, esp hiking here in Connecticut. Be well and feel free to ask anything you feel.

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Thanks Anthony, I will.  One of my main concerns is the impact it will have on my lifestyle.  I love food and also travelling, for example we spent October in Vietnam and Cambodia, one of the things I enjoyed most was the hiking and eating the local food - and I am worried that I will no longer be able to do that.  Also we take one or two cruises per year, I am worried that if the DV flares up they will treat it as Norovirus and I will be confined to the cabin, never to be seen again ... (my sense of humour is beginning to return).

Good to hear that you can go hiking etc. as at the moment I dare not even leave the house!

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Ask your DR for a prescription to take with you just incase you have a flare 

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Yes good idea, I will do. Thanks Susan

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Hi Helen

I guess you are UK based.  From what you have described it certainly sounds like DD and you did at least get a proper stomach examination.  I'm afraid patience is key to recovery, and you will also need to recover your confidence, but that will come as you slowly feel better.  I find that  people who have been fit and active find the recovery time the hardest, not people who have dealt with chronic pain and/or other illnesses for years.  I've read many stories on here of people who have rushed to get back to their normal life, and have caused a setback.  (ie one person ate a large bowl of All Bran (I was told to eat fibre!) before their insides were ready to deal with such harsh fibre, another wondered why a Big Mac and all the trimmings upset them!!!)

As for affecting your life, you will be able to do everything you used to do - I continued to play active sport, walking, gardening.  However, you will have to modify your diet.  The way to do that is, once you are well on the way to recovery, keep a food diary, and note foods which seem to bring back the pain/bowel problems.  It doesn't mean you are having a full blown flare up each time, just that your insides don't like that particular food any more. 

On a cruise you will be able to make sensible choices from the vast buffets.  I have no problems on holidays where buffets are available.  But eating local foods in remote countries - I think that's dicey even without DD.  But perhaps others have better knowledge and can advise you.

If your symptoms don't clear up, or get worse again, please DON'T be a brave soldier, scared of troubling the doctor.  And ask about a CT scan, colonoscopy, or the less invasive sigmoidoscopy.  They won't do do the latter two whilst you are actually being treated for infection - they wait until the infection has subsided.  So the wait could be weeks or months, and in the meantime you should self-regulate your diet.  Regarding painkillers I was always told paracetemol, not aspirin or NSAIDS, as the last two can cause bleeding, the last thing you want with DD.  Hot water bottle or heat pack is also good for the pain.  Best wishes.

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Hello Helen, I'm so very sorry you have this dreadful disease. You have already got some pretty solid information from some of the more knowledgeable people in this forum. I just want you to know that you are most definitely not alone. I have had this mess for 3 years that I know of, mine flared up at least 5 times before I ever went to the Dr the first time. The first time I went to the Dr with it I had been hurting bad for 2 weeks and it would not go away, I became dehydrated and passed out as soon as I walked into my house after work one day. From now on every time you think it may be flaring up go to the Dr, do not wait. I caused myself irreversible damage from being stubborn, no better yet, I was being stupid. This will no doubt change your lifestyle, I'm not saying you can not go on vacations and things of that nature but you are going to have to pay close attention to what you eat. I can't believe they didn't do a colonoscopy on you, I know it seems bad but they are not that bad at all. It will show exactly what you're up against. For lack of a better word diverticular disease sucks, if I hadn't of been so stubborn mine could have been controlled. I'm not trying to scare you by any means but I am a 26 year old male and today at 8am I had to have surgery and they took out my entire sigmoid colon and part of my decending colon. A total of 16", I'm lucky bc they were able to reconnect what's left back to my rectum so I will not have to use a colostomy bag. I'm not out of the woods yet, where it is reconnected could leak and I could have to do another surgery. As far as what you can and can't eat is a tough question, some people can eat stuff others can't. There are some pretty good diets in this forum and I assure you this is the best forum out there for this. A lot of people have had good results with drinking fibre supplements, I'm from America so the names are different on brands so I can't really suggest a brand. I understand that right now you are on a mostly liquid diet, I know its hard to stick with that but it is crucial that you do so to give your colon the proper time it needs to heal. Once you start reintroducing things to your diet you are going to want to start a food log. Every new thing desperately needs to be recorded, things that cause you problems will have to be crossed out bc they will probably always cause you problems. I have not eaten steak in 2 years, but I can eat hamburgers. Another thing is try not to eat anything in high quantities. It was widely said that you are not supposed to eat seeds or nuts with this disease, but recent studies have some conflicting results. However I generally try to stay away from things that are known to not digest well, like peanuts and corn. A colonoscopy is nothing to be scared of it takes 30 minutes and you are asleep the whole time, and afterwards you can't really tell anything was done. I was very nervous about it too, I almost didn't even do it. After it was done thats when they found the irreversible damage I had done to myself for waiting and putting it off. Many people successfully manage this for 20-30 years with minimal flare ups. I would give anything if I had of went sooner. Sorry for this being such a lengthy post. I wish you the best of luck Helen, and you have a whole forum of people here to help you with any information you need.

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Hi Corey

Thank you for making this post and being so honest about your condition and experiences.  It will be invaluable to people who join this forum.  I wish you a very speedy recovery.

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Hi Helen

Just one small rider to Corey's post re colonoscopy.  In the UK you are never given a general anaesthetic, only gas & air or mild sedation.  It's to do with the possible risks of a general anaesthetic and the recovery period.  Many people have no problems and say the prep is the worst part.  But it is still the definitive diagnostic tool.