Diverticulitis? Something else? What fresh hell is this?

[TheGrowling]

I've NC because this is identifying.

Has anyone else had symptoms like this?
What do you think it is and what's the best treatment?

I've had tests and I'm having more, my consultant has said she thinks it is either diverticulitis or inflammatory bowel disease.

My symptoms are:
Constant pain, sometimes mild, sometimes severe.
Nausea.
Sickness.
Raging diarrhoea.
Weight loss.
Exhaustion - I'm sleeping 11 or 12 hours a day.
My stomach is very loud, when it is bad it sounds like a washing machine.
Loss of appetite.
Some dehydration.

I've been like this for 6 months, I keep going back to my GP but there seems to be nothing else they can do.

Oh yes and just to really put the cherry on the cake I've lost my job because of my sickness absence too.
I've tried to put a cheerful spin on this post but this has floored me and I'm utterly miserable.

Feel free to have a good moan about your own diseases too.
Or anything else for that matter.

It could be IBS. Have you tried modifying your diet. Ban wholewheat and any type of brown bread. Avoid reheating food. Dont eat cold pasta lr rice or potatoes. Avoid dried pasta. Avoid caffeine. Avoid spicy food. Providing I follow this my symptoms disappear.

Have you been referred to a consultant or had any tests? What was the outcome?

Can IBS be this bad?
I'm not being glib, I just don't have experience of IBS.

Yes, I cut out all gluten and caffeine for 2 months.

Then I tried dairy.

Neither made any difference.
When I discussed this with the consultant she said she wasn't surprised that it hadn't made any difference. She ran a blood test for coeliac which came back negative. She also said that as I have no appetite and I've lost significant weight that I should focus on trying to eat, rather than cutting things out.

@anotherangel2 I have seen a consultant, they've run a lot of blood and stool tests.

The blood tests were fine but something (I don't know what) in my stool samples indicates diverticulitis or inflammatory bowel disease.

I think you'd need a colonoscopy to diagnose diverticulitis. That was the case with my mum, anyway.

Have they checked for anal polyps?

You don't say how old you are ? My mother got Diverticulitis in her 70s. It is mainly a western diet problem. I'm sure you know the pain is due to pockets developing and they get inflamed, hence the pain. She was told to up her fibre, avoid certain foods such as nuts, tomatoes etc . She also took a Fybogel a day. She could have really bad days in pain so I'm sorry to hear you have this.
BUT please also ( without wanting to worry you ) and I'm no dr and also due to her story ( and I'm probably cautious because) it either masked or she was misdiagnosed and she had bowel cancer. Have you had a blood test ? Could you request a colonoscopy ? Read up all your symptoms and push for an appointment at the hospital if you are worried.

Whilst typing the above seen you are having it looked into ☺

Have you been referred to gastro in your local hospital? Sounds like you need to be - ask if GP can refer you

Crohn's disease is quite hard to diagnose without a colonoscopy. In fact I had my disease diagnosed after needing emergency surgery for a suspected appendicitis. My bowel had ruptured and I had extensive Crohn's disease with those sort of symptoms.
Am happy to chat on Private message.

Sorry cross post - glad you're getting it sorted out

I think you definitely need further tests. IBD is not IBS and I would expect them to find out which one it is and for you to be on a treatment plan.

Thank you @MizCracker, @whosafraidofabigduckfart and @Namethecat I'm waiting for a colonoscopy appointment, I have to see another consultant first, I have an appointment on Friday.

I'm in my 40s.

It is agony.

I don't know much about IBS.
I think it's a possibility but it hasn't been mentioned to me.

I think that's why the consultant said I should stop cutting things out of my diet; because IBS would be treated with reduced fibre whereas IBD needs an increase in fibre.

IBD does not always need increased fibre. Sometimes the opposite.

IBD are autoimmune diseases.

Do you have another appointment with the consultant?

Can be very painful. If cutting out fibre doesn't work, try eating more. Apples are good as they contain pectin. Soluble fibre, oats, oatcakes, rice, ryvita better than wheat bran. High fibre fruit & veg, carrots, potato, beans/pulses, green leafy veg (salad not so much). Pineapple, or pineapple enzyme digest from health food shop. Plain live yoghurt. Fibre supplement psyllium or fybogel (can be prescribed.)
Avoid sugar, drink plenty water or herbal tea.
Assume they tested for crohn's, which would react badly to fibre.

Cross post

Yes @anotherangel2 I have an appointment with another consultant on Friday.

Oh @Missingstreetlife just reading that food list makes me feel sick but thank you, I'll try apples, maybe cut one up so I can eat a little bit at a time.

I've had blood tests for Crohns.

I had pretty much all your symptoms for about a year and went back and forth to the doctor and finally got an answer when I had an emergency hospital admission and found to have a very badly infected gallbladder and lots of gallstones. I had it removed but still had excruciating pain for 12 months before developing pancreatitis from a stray gallstone left behind. Sounds like you need an endoscopy and a colonoscopy to see what is happening inside.

@TheGrowling my Crohn's didn't show in my bloods initially. It was that severe it only showed up when I had surgery. It is a remitting illness so I can be well and my bloods ok and then the next week they can be awful.
It might be worth persevering down that line. Hope you feel better soon.

I've wondered about that @ejk10, my stools have sometimes been gritty but then they've been every permeation of everything over the past 6 months.

That's interesting @wannabestressfree, I can have spells when I'm ok, not great but certainly better.
When I'm having a good patch and they do tests on me I think 'you won't find anything' and inevitably they don't.
Though as I say, there have been indicators of something in my stool samples.

I'm at my wits end with this, it's been incredibly debilitating.

I am just off to see Crohn's specialist @TheGrowling I will ask the best tests to ask for to indicate Crohn's both when 'well' and 'unwell'
Sucks doesn't it?

It is hideous, and not even recognised properly by dwp, stress the investigations ongoing if you claim esa.
Don't change diet all at once obvs! A chopped, stewed or blended apple on porridge or muesli would be a good start, and increase slowly if you get away with it.
Things with seeds (raspberry, tomatoes) can be a problem and are no no for crohns.
Might be worth seeing dietician or even better nutritionist. Hope you find some strategy soon and get your life back.