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.

The trouble with chronic diverticulitis (if that is what it is) is that no treatment short of surgery gets rid of it. Intravenous infusions of metronidazole combined with cefalexin or ciprofloxacin can take the edge off acute episodes and get blood results back to something like normal, but the chronic problem persists and internal scarring builds up.

If this is what you have I sympathise hugely OP. As I said upthread, I was ill with this for 18 months, including 5 or 6 acute admissions, before my emergency surgery. I am self-employed so did not lose my job, but the loss of earnings has added a huge amount of stress to an already very difficult situation.

A couple of further tips from me:

Disregard any online advice to avoid nuts, seeds & popcorn - this is an old notion about diverticulitis and has been discredited in careful modern studies.

Also, if you are having a scope without sedation, don’t hesitate to ask if they will consider using a paediatric (thinner) scope. If you have active inflammation then this can make the procedure easier on you. They will likely have it on hand anyway, as the adhesions which develop in chronic inflammation can cause angulation and distortion of the anatomy & make the colon difficult to navigate.

Whatever the diagnosis, I hope you get an answer soon so that you can move forward towards having it resolved.

My oh was diagnosed last year and it's impacting on other quiet serious long term health issues. We saw an nhs consultant who said that they now don't cut the 'bit' out anymore unless it's a medical emergency- they prefer to treat with antibiotics every single time (now in 3rd bad episode in a year)

We went private with his health cover and saw a different consultant (in a different PCT) and they said the same

@notapizzaeater

Sorry to hear this is affecting your OH too. Yes there is a presumption against resecting for this benign disease - for good clinical reasons, in the sense that it is major surgery carrying significant risk, and it’s only a small minority of diverticulitis patients who have really intractable disease. Most people with diverticulosis never get diverticulitis, most people who have diverticulitis once don’t get it again, most people who have it twice don’t get it a third time, etc. Three acute episodes in one year doesn’t sound promising, though.

I was an NHS patient (London teaching hospital) and had had a diverticular abscess, plus other complications including haemorrhaging, for 6 months before I was even put on a waiting list for elective laparoscopic resection. I didn’t make it to the elective date as an emergency situation developed and I had full open surgery - woke up in critical care to be told they had saved my life.

I don’t intend by my anecdotal situation to alarm anyone - every case is different and I was unlucky with how ill I got - but I do feel rather evangelical these days about taking this disease seriously.

I used to get excruciating flare-ups but I don't any more. I have no idea why, except that I am now scrupulous in avoiding constipation.

@anotherangel2 funnily enough, I suspect the pre colonoscopy clear out will help too.

@RoguePlosive no, no other treatment while I'm waiting. I'm currently prescribed codeine for the pain, cyclizine for the sickness and pregabalin for god knows what - does anyone else think that pregabalin is the current go-to drug for everything or is that just me? - either way, the pregabalin seems to do naff all except make me sleepy.

Thanks @LarkDescending and again, I'm sorry you had such a terrible time. When I do feel like eating popcorn is one of the things I tend to fancy so I'm relieved it's ok.

@notapizzaeater I didn't want to admit this in my PPs because I do support the NHS but yesterday's appointment was private. The first gastronenterology appointment the NHS could offer me was in late October. At this point DH stepped in and said 'we're using my work medical insurance'. So we did, my colonoscopy is in a few weeks time and I'll need an MRI. When I've been prescribed antibiotics for other things I've found this has settled, so I don't mind if antibiotics are the answer.

I decided to be private because I need to be back on my feet and back in work asap.

Believe me, when I have that colonoscopy I'm going to have all the drugs, everything they can offer me. I'm hoping the sedation will provide a brief respite from the pain.

The consultant suggested a number of potential diagnoses, I have an open mind about it all.

The other 'food' I crave are ice lollies. I know that in general terms sugar is bad but they make my mouth feel better and it's a way of getting fluids into me.

Is there anything that I definitively should or shouldn't be eating?

I also meant to say thank you to everyone for sharing your advice and experiences.
I'm grateful to have people to 'talk' to about it all. You all provide a different perspective, which is very useful, I feel quite alone and helpless.

My poor DH is great but I try not to keep talking about it to him, I don't want him to worry or get fed up with me.

My DCs are worried about me, I've lost a lot of weight and I wasn't that big to start with so it really shows. I don't feel I can talk to them because I don't want to worry them even more.

Op I wonder if you could have blastocystis.
Have a look on a website called 'badbugs'. If you google it google will try to change it to bedbugs but insist on badbugs.
Unfortunately I don't think there is an NHS test for it so you would have to have a private stools test, but the treatment recommended on the badbugs website works.

@Dapplegrey I've been tested for parasites but the tests came back clear.