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Diverticulitis - how to cope?

(14 Posts)
Whoremoan Tue 17-Jan-17 17:15:59

I'm awaiting tests to see if i have diverticulitis (bowel infection) as I seem to have all the symptoms of a nasty flare up. I've not been diagnosed with this before and was told I just had IBS 2 years ago when I first became ill.

I've now been incredibly ill for the last 7 weeks, in so much pain in my lower left side, feeling sick, spinal pain, ice cold shivery and night sweats and a whole lot more symptoms like alternating diarrhoea and then not 'going to the loo for about 4 to 6 days. I'm trying to work and look after the DCs but am not sure how to manage the pain and the general feeling of being so ill I could pass out at any time.

I'm avoiding any painkillers as I think Ibuprofen might have contributed to me being ill 2 years ago and my doctor said take nothing for now till I'm diagnosed.

Fellow sufferers, presuming it's diverticulitis - after nearly 7 weeks feeling extremely ill, is there anything I can be doing for myself that might help? At times I've been so nauseous I've not been able to eat for days and then when it subsides and I eat, I feel worse - especially if I then have a poo. It's always so much worse after that. However, if I don't eat, I inevitably feel ill and weak through lack of fuel and nutrients.

My consultant has told me to carry on eating just bland foods - and I've lived of tiny meals of chicken, cod, white rice, mashed potato and rice cakes for 7 weeks now. I've therefore lost almost a stone in weight. But should I stop eating again for a longer period, as I've read that the bowel needs a rest from food if you get a diverticulitis flare?

Any advice from fellow sufferers would be welcome. Two years ago, I think I also had this - undiagnosed - and it took 4 to 6 months to get better. Not sure how I can be in this state for that long again.

catmadcaz Tue 17-Jan-17 17:43:55

Hi I am a fellow sufferer.
The treatment for diverticulitis is 2 antibiotics amoxicillin and metronidozole this is obviously only available by prescription. I can't understand why the consultant hasn't given you these drugs.

My last flare was in September and I was admitted to hospital by ambulance for 4 days after a very scary severe bleed . Before the bleed I had terrible pain and diarrhea for about a month. In hospital I was given IV antibiotics, then sent home with a further two weeks supply of the tablets.

Since then I have been back on the the low fod map diet keep the flare ups minimal. This diet was recommended by the gastro consultant who referred me to a dietician. I seem to get problems when I deviate and especially if I eat any wheat products.
Hope this helps.

Whoremoan Tue 17-Jan-17 19:38:16

Catmadcaz, thanks for your reply. My consultant said that if it were diverticulitis, then I'd have to go on antibiotics but that the antibiotics would likely lead to further stomach problems like clostridium difficile!

My GP on the other hand, said you'd only be prescribed antibiotics if your temperature was over 38C and if anything, apart from night sweats from pain, the rest of the time I'm icy cold and shivering. So I thought that wouldn't mean I'd be put on antibiotics.

Neither will do anything at all until I'm diagnosed however and this may take a month or more, even though i'm using savings to pay to go privately for tests. So I'm currently - and for the second time - receiving no actual treatment. Last time I was incredibly ill for about 6 months. This time it's 7 weeks and counting and I'm exhausted with coping with the pain and other symptoms. I'm only getting about 2 to 3 hours broken sleep a night because of the pain. Was it like this for you?

Both docs have said after the flare up, I'd need to go on a very high fibre diet to help prevent further flare-ups. Ironically, before I first got ill 2 years ago, I'd been on a wholefood, high fibre, vegetarian diet for over 30 years!

My consultant said I had IBS, 2 yrs ago - and to go on a low fibre low fodmap diet....and here I am, now looking at a potential diagnosis of diverticulitis, which he said is caused by a low fibre diet...the one he put me on 2 years ago....

So I'm very confused....I haven't really eaten gluten (well minimally) for 2 yrs now. I have no milk products but because of Low Fodmap diet, I can barely eat any fruit and veg which used to be my main foods. Now I eat bland white foods, chicken and fish.

So how if it that you've bee told to do low fibre low fodmap after a flare up and I've been told that I should eventually go back to high fibre?

Can I also ask you if you've had worse stomach symptoms and any nasty thing like clostridium difficile since being on the antibiotics? My consultant told me that this was a risk I'd have to take but my GP - as above - has said I won't need antibiotics.

I'm now waiting for blood tests results and also to have a CT scan and a flexible sigmoidoscopy, which doesn't sound like much fun.

catmadcaz Thu 19-Jan-17 09:12:51

Hi I will try and explain what has happened to me. I was diagnosed with diverticulitis quite a few years ago I had diarrhea severe pain could hardly walk and had pus discharging from by bottom. I went to the gp and was sent straight to A and E had blood tests and was admitted for 10 days antibiotic drip and had a colonoscopy. This revealed diverticular in the colon they were blocked and infected.
I was discharged and told to keep to a low fibre diet while having this flare and then go to a medium to high fibre diet when recovered.
However because I have always had irritable bowel high fibre is not really for me.
I have over the years had lots of problems not only with my colon but with my esophagus and have recently been diagnosed with dismotility and a Hiatus hernia so have gord as well.
I have had lots of tests and last week was discharged from the gastro consultant. I am thought to be sensitive to wheat/gluten but not at the point where I am celiac as it is not showing in the blood tests.

I have not had clostridium difficile after taking the antibiotics but they are strong drugs and they make you feel horrible. My consultant told me to get some VSL#3 it is expensive but it is apparently the best probiotic you can take. It must be taken after the antibiotics to replace everything the antibiotics have destroyed.
I am feeling very empathetic towards you as it is so difficult to make the Doctors realise how painful and distressing these bowel problems are. The Gp can fast track you for a colonoscopy this can be done within 2 weeks so I would suggest go back and tell them exactly how painful and how intolerable this situation is for you.
Hope you find something useful in this post.

Whoremoan Thu 19-Jan-17 14:25:10

Catmadcaz, that's really useful and also very kind of you. I'm really sorry you're going through so much too and I really feel for you as well.

Of all the illnesses and health issues, the one that always scared me most was anything to do with the stomach and feeling sick, as I love eating and only a bad tummy bug ever really stops me from doing what I want to do in life, like various energetic activities. Now this feels like the worst ever tummy bug times 1000 and is currently into the 7th week. Exhausting! It's very different to a tummy bug though as the pain is incredibly bad and I feel more sick and ill than I've ever felt with flu.

I got blood tests back yesterday and apparently nothing showed up like inflammation, which is the same result as 2 years ago. But I still don't know my exact diagnosis. I've paid for a CT scan and this is happening tomorrow now.

I was fast tracked in the NHS 2 year ago for tests including a colonoscopy, a gastroscopy and a CT scan but nothing showed up, which surprised me, given I was desperately ill for about 4 months and nothing like normal for another 2 months. All of this left me with IBS and so I was put on a low fibre diet.

I'm pretty sure I had back then what I have now and that something was missed. I presume I can't be fast tracked in the NHS again so I'm paying out of my own pocket to speed things up privately - but this will decimate my savings. However, I need to be able to keep working so the sooner I have answers and some treatment, the better in the long run....IF there is a definitive diagnosis this time and if I can get some treatment.

I still have to wait another 2 weeks for a flexible sigmoidoscopy, which doesn't feel very 'quick' despite extortionate costs - but would be better than the NHS I think.

I hate the idea of antibiotics, as my gut flora must already be compromised. I'm surprised at your consultant's recommendation of probiotics as I've asked mine twice now about these, including the other day and he says categorically that there's no evidence that they help and so not to take any.

I've started taking paracetamol but this isn't really touching the pain and I haven't slept more than 2.5 hrs at a stretch for about 4 weeks now, as I'm woken by pain and hot sweats or shivers. It's pretty horrible.

If anyone else has any experience of diverticulitis, it'd be good to hear from you too. Thanks again catmadcaz.

Whoremoan Sat 21-Jan-17 17:22:31

Into week 8 now of being ill and week 5 of severe pain. Still interested in other people's experiences of diverticulitis? Paracetamol isn't touching the pain and it's increasingly difficult to get on with any kind of normal life, however limited and restricted this has become.

I'm now waiting for the CT scan results and then in 2 weeks time have a flexible sigmoidoscopy. Anyone had one of those? I'll be having it without sedation. It's hard to accept that even paying privately, that's still going to be 10 weeks from the time I became ill and still not properly diagnosed or treated.

After that, I'll need to go backinto the NHS as I'll have run out of savings but I'm not sure how that will work or whether there'll then be further weeks of delay for any treatment I might need. Does anyone have any experience of assessment/diagnosis privately and then back to the NHS for treatment and follow-up? Is this a seamless process?

Finally, as I mentioned above, my consultant says there's no evidence that probiotics help stomach problems. Has anyone else heard that from a medic?

StillMedusa Sat 21-Jan-17 23:48:12

Similar story here I'm afraid..and no resolution. I was diagnosed with Diverticular disease a few years back and IBS. in November something flared up and since then I have been in constant pain, in an area that shouldn't be a diverticular pouch! Deep pain and a deep pressure too. It sucks and having had a colonoscopy, ct scan etc in the past no one seems keen to actually DO anything.

I try to keep to low fodmap and defo bread etc makes things worse (but I love bread!) Paracetamol and gabapentin help me (on the Gaba for other reasons)

Good luck.. it seems to be an area where docs are not really interested ;/

LarkDescending Sun 22-Jan-17 08:27:36

Sorry you are going through this. I had similar very debilitating symptoms (plus some bleeding) a few months ago. Fortunately I was fast tracked by my GP to a CT colonography and then admitted to hospital for IV antibiotics (metronidazole and ciprofloxacin). I had complicated diverticulitis with an ovarian abscess.

Now after treatment and a period of recovery I feel so much better than I had done for months! The pain and exhaustion were awful. Mind you the feeling of sickness actually got worse during metronidazole treatment - couldn't face food. It's a common side effect.

There is another antibiotic regime, amoxicillin & clavulanic acid, which I think is sometimes prescribed for mild & moderate cases.

I am surprised you are being booked for a flexisig so soon. When I was an inpatient the consultant told me the protocol was to wait 6 weeks from antibiotic treatment to allow the inflammation to subside before performing that investigation (more risk of bowel damage if they go in there while you remain acutely inflamed). So my diagnosis was by CT, and the later flexisig was to check the inflammation had been brought under control and confirm no tumour.

After flexisig I had a follow up consultation with the consultant. To prevent recurrent attacks I was recommended a high fibre diet, with the emphasis particularly on fruit & veg fibre, and lots of water. I didn't ask about probiotics but I do feel that the residual tenderness/sensitivity is less noticeable if I take them.

Whoremoan Sun 22-Jan-17 16:20:52

Thanks Lark. My consultant hasn't yet prescribed any antibiotics so I presume I'll be having the flexible sigmoidoscopy before I have any treatment at all. That's a bit scary if, as you say, they usually wait until any inflammation has gone. I'm not having sedation or anything for the procedure so I really hope it's not going to hurt.

It's worrying that different medics seem to have different ideas and methods as it looks as if there isn't a definitive treatment regime if that's the case.

It was my consultant who put me on a low fibre Low Fodmap diet 2 years ago, after I'd been lifelong on a vegetarian wholefood diet. So it's because of his advice that I've been low fibre - and also eating meat and fish since then too.

It seems weird that the potential suggestion now would be high fibre, when that was what I was on in the first place before I first got so ill 2 years ago. Back then, I was told I had 'post-viral IBS' but this current illness is exactly the same symptoms and feelings as that one was. So if I've been eating low fibre/low fodmap for two years, surely that's been completely contraindicated if I've now got a second flare of diverticulitis?

It looks to me more and more than medicine hasn't really got much of a clear idea about treating digestive diseases/disorders and is fishing in the dark for solutions. Meanwhile it's 8 weeks and counting of no definitive diagnosis and no treatment/pain relief and this is the 21st century ....and I'm paying privately too!

LarkDescending Sun 22-Jan-17 19:46:16

The high fibre recommendation I was given seems to be consistent with current NICE guidelines for diverticular disease. But if you weren't diagnosed with diverticular disease but rather IBS, that presumably explains why a different recommendation was made.

Whoremoan Mon 23-Jan-17 14:17:15

Thanks Lark. I'm sure I was previously misdiagnosed as the symptoms this time are exactly the same as last time.

Tried eating a tiny tiny amount of carrots and green beans last night and have really paid for this today - awful diarrhoea again, nausea, abdominal pain etc. So it looks like I'm still on a very limited diet of white rice, chicken, egg and white fish.

I wish I could get better nutrients into my body but even eating those bland foods in more than tiny proportions, makes me feel more ill. It's like the moment the food gets to my colon, I get a bad reaction. I'm so fed up with feeling ill and in pain.

Uberfluffs Tue 07-Mar-17 09:27:44

I've been having flare ups of this - four over the last 3 years, but each lasts a week to two weeks, not months. I've always been given antibiotics, either oral or IV in hospital. You should be getting them too, that's part of the guidelines for treating diverticulitis.

The antibiotic most associated with C.difficile infection is ciprofloxacin, and it's mainly associated with long stays in hospital, so if you're in severe pain and at risk of complications in other ways I really wouldn't listen to your GP if they're using this to not give you antibiotics. I've found that in general they don't know much about diverticulitis anyway, so always get referred to a gastroenterologist if you can.

Regarding paying for private care - if you can't afford it, don't do it. The NHS is there to help, you need help, insist on it (I work for the NHS, we really do try to help those who need it with what resources we have).

I talked to a gastroenterologist during my last stay in hospital about the low/high fibre thing. He said that there's a lot of discussion about it but it was his opinion that while I have a flare up it's better to stick to low fibre plain food (eg white rice), and have high fibre food after the flare up to keep things running smoothly and prevent recurrences. I did read that it depends on the type of fibre too - soluble is OK, insoluble not so much.

I've done some research on probiotics using medline/Pubmed (which has abstracts of current research) and actually there have been some good results for probiotics and diverticulitis.

At the moment I'm trying a diet of manuka honey dissolved in warm water every couple of hours, along with turmeric daily (I use tablets) which are anti-inflammatory and act as a prebiotic, and also a probiotic supplement which contains several different species and apparently has been proven to survive stomach acids. Research supports the turmeric and probiotics, and I've bunged manuka honey in because it gives me a bit of energy and is slightly active against Gram negatives such as Pseudomonas and coliforms, although it doesn't seem to have ever been tested with diverticulitis. It also makes my warm water taste better!

I did try using raw garlic as well, but I reeked and it seemed to make the symptoms worse so I dropped that.

If you want to do a bit of research yourself, here is the link to Pubmed but don't look at just one study alone as it's likely to give a very skewed view, look at as much as you can.

Uberfluffs Tue 07-Mar-17 10:05:30

Try this for a representative study including probiotics - DISCLAIMER - I specialise in infectious diseases so I'm likely to think everything's to do with microbiology.

Whoremoan Thu 09-Mar-17 05:47:42

Uberfluffs, thank you for your very helpful posts. Since I last wrote on this thread, I've had loads of tests and nothing has showed up evidence of diverticulitis - ie no diverticular. However, the symptoms of diverticulitis or possibly of Crohn's disease, fit best with what I'm experiencing.

I'm now 15 weeks into being really ill. The diverticulitis-like pain and symptoms are still there but slightly less so - but the flu-type symptoms remain - pain at the base and top of my spine similar to the pain I once experienced when I had meningitis. I'm only functioning at about 25% my normal self and trying to push through and get on with it, makes everything worse.

The slightly raised temperature and shivers I was getting have stopped now and so i think that whatever I've had, is slowly improving. I still can only eat very bland foods and have lost a stone in weight but the awful nausea has diminished. I'm still getting thick white coating on my tongue and still getting the sharp lower left abdominal pain after having a bm.

I'm now at a dead end with the medics. They seem to have ruled out all the obvious, nasty diseases and illnesses but I'm no further forward. I'm worried that it'll again (like in 2015) take 6 to 7 months for me to recover fully. I'm even more worried that I'll have another recurrence.

No one has advised me what to eat or what to do and I've had no proper diagnosis or treatment. The earliest GP appointment they could give me is for two weeks time! I'll then discuss all the results but he won't know what to suggest as there's nothing obvious coming out of the results - except for one - a slightly raised faecal calprotectin level, indicating some 'inflammation'.

In the meantime, I want to try a probiotic, although my gastro consultant is adamant there's no evidence that they work. But there's conflicting evidence on the web about which to take and some can make things worse apparently, if they're not the 'right' bacteria. Can you tell me which you use, Uberfluff?

The gastro consultant has discharged me and didn't have time to discuss any of my questions at my last appointment with him - the flexible sigmoidoscopy. I had to try to ask him questions whilst he did the actual procedure! Once he told me he couldn't see any problems in my lower colon, he sort of gave up on me. I'd like a second opinion from a gastro but it's difficult to suggest that to my GP, as it feels 'wrong' to question a consultant's adequacy. I'm not sure my GP will be willing to refer me on anyway.

Physically, I feel like my body has been fighting something horrendous and I'm still feeling ill and nothing like my normal self. The localised nature of the pain and it's severity, the slightly raised temperature and shivers, the inflammatory-type pain at the base and top of my spine and the ongoing flu-like feeling of illness - suggest to me that 'something' has gone on.

At the worst point, I also had sores in my mouth and herpes sores on my lips, thick white coating on my tongue (still there) a very bitter taste in my mouth, intense nausea so I couldn't eat at all for several days at a time, ongoing urgent need to poo in the middle of the night, waking me from deep sleep, ongoing severe localised abdominal pain that almost made me pass out at times. I don't understand why none of the tests I've had done show up anything.

Does this sound like diverticulitis - or something else? It's nearly 4 months now and before all this began, I was fit, healthy, active, happy and energetic. I'm still so ill and nothing like I was before.

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