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.

I’ve had severe complicated diverticular disease (now cured by surgery). The scope should rule diverticulitis in or out for you.

Some of what you list is characteristic of diverticulitis - abdo pain, fatigue, loss of appetite, weight loss all featured strongly for me. No D/V or loud abdo noises though. My several attacks of acute diverticulitis were easily diagnosed by bloods (very high CRP readings), fever, severe localised pain & tenderness and obvious signs on CT imaging.

I never had to give a stool sample - I thought that was more an IBD thing (faecal calprotectin as an indicator of Crohn’s or ulcerative colitis)?

My dh got diagnosed with diverticulitis this year after a hospital,admission with it. He then had a camera to confirm it.

I definitely recommend seeing a gastro specialist and having it further investigated.

Once you have a diagnosis I’d recommend speaking with a dietitian to address dietary management if your symptoms.

Good luck!

@LarkDescending I think diverticulitis can be mild or severe.
Fever can be a symptom, but I think it isn't always.
Did you have peritonitis too?

OP indeed - absence of fever doesn’t rule out diverticulitis.

I didn’t have peritonitis but I had most other known complications over the course of about 18 months and couldn’t eat at all in the end due to large bowel obstruction resulting from severe fibrosis. I did have a significant perforation but fortunately confined in an abscess.

Anyway as a result of all that I had an emergency left hemicolectomy and ileostomy.

I have crohn’s and was diagnosed 6 years ago (at the age of 36).I also have diverticulitis and was very unwell with that last year. The symptoms are similar but I had more localised pain (lower left abdominal pain) with the diverticulitis. I was fobbed off for a long time by my GP before my Crohn’s diagnosis because I was told my symptoms were typical of IBS. It was only when I started seeing blood in my stool that they investigated further. I was diagnosed properly after a colonoscopy. The stool sample test you mentioned is probably faecal calprotectin and with Crohn’s flare ups and diverticulitis flare ups you can have elevated results. I am currently in the middle of a Crohn’s flare and my calprotectin is over 1000, and with my diverticulitis flare last year it was around 700. One typical Crohn’s symptom I had that I didn’t have with diverticulitis is when the urge to go to the loo wakes me from sleep at night. I also have a loud gurgly tummy!

I’m sorry you are going through this. It’s so frustrating and exhausting waiting in limbo to find out what’s wrong and knowing you can’t get the treatment you need to get better without a proper diagnosis.

I had similar last year, had a colonoscopy and was diagnosed with collagenous colitis.

Diarrhoea cleared up a few days before I had my colposcopy, and hasn’t reappeared apart from two episodes of about a week (as opposed to the 4 continuous months). I’ve had to cut a lot of fruit and vegetables out of my diet, and high fibre stuff, and as a side result I’ve put a little weight on, not ideal.

Can you ask to be pushed for an urgent colonoscopy?

@LarkDescending good grief that all sounds awful, I'm so sorry you had to go through all of that. Are you well now?

@RoguePlosive my GP insisted it was all psychosomatic but at the time my DH pushed for a referral as I was too ill to argue on my own behalf. Funnily enough, they listened to him  even though they wouldn't listen to me.
I think it was calprotectin that was raised.

My hope is that this isn't 'just' IBS as it's so difficult to treat and I suspect my GP won't take it seriously .

@ALemonyPea I will be asking for an urgent colonoscopy when I see the consultant on Friday.

I know I should change GP, we haven't long moved to this area and I just went for the first one I found. But one battle at a time.

As I said upthread I've lost my job over this too and they've been writing me a lousy reference. We can get by on DH's salary but I've always worked and I'm worrying at the prospect of being jobless, which I don't think is helping my physical state either.

I have Crohns and have to have a low fibre diet, not high and this isn't uncommon. It does sound like IBD symptoms and if something showed up in your stool sample it could be calprotectin which is an inflammatory marker that isn't present in IBS. You need to have a colonoscopy to identify the problem and then you will know if meds/diet will be the answer. It's rubbish though and I really feel for you with those symptoms. Good luck!

They thought my DF had diverticulosis, turned out to be kidney stones, have they checked for that?

@TheGrowling Thank you - yes I am doing pretty well now, though the dust is still settling as I am only 6 months on from that first surgery (there was a second one 3 months later!). It has not been fun, but I am grateful that what I had was diagnosable and surgically curable.

So sorry to hear that you have lost your job - that’s awful.

Is your specialist a colorectal surgeon, or some other sort of consultant?

@LarkDescending ah good I'm glad you're getting better, you had a horrible time. I wouldn't wish this on my worst enemy, you have my sympathy and if you were a more poorly version of my current state then I admire your bravery too.

@whatsmynametoday it's interesting that you are on low fibre for your Crohns treatment, I thought it was only high fibre. Are you feeling any better?

@Timetobookaholiday kidney stones haven't been mentioned but I don't have any pain in my back. What were your symptoms?

Yes, losing my job is shitty. I'm pretty much bed-bound right now so the job thing is a low hum of anxiety in the back and sometimes the front of my mind at all times. I'm angry too and frustrated.

I'm not very good at being in bed all day. I'm motoring through audiobooks, has anyone got tips for things to occupy me? What did you do?

Netflix on the iPad was my friend when bed-bound

The growling, it slows things down a bit so helps a little. IBD is so individual though in terms of what helps with diet (if anything) some people find less dairy beneficial but it makes 0 difference to me. On the other hand I can't touch things with added salt and things like fruit and veg I've never been so unhealthy trying to get well!

Sounds like an inflammatory bowel disease or similar as your consultant thought, they can range from mild to very nasty. Small intestinal bacterial overgrowth is another possibility.
You need to pester to make sure you get all the tests needed until they find the right diagnosis.

Bowel diseases will tend to make you deficient in some vitamins and minerals which will make you feel even worse. Try some strong multivitamins & mineral tablets while you wait for a diagnosis. Ask your doctor if they have already tested you for your vitamin levels and look at the results. Low iron, B12 or folic acid will make you feel tired and anaemic. Vitamin D may help with IBS, if you have it.

Sorry you are going through this-You need a scope to Diagnose IBDs, or Diverticulitis so I am glad you are going for one soon (raised Calprotectin can indicate an IBD)
Last Year I had almost constant stomach pains,washing machine noises from my belly,burping(from both ends!)and slight back pain-all the worry of what it could be and if today was gonna be any worse than the previous caused me to lose weight too.
Eventually I was sent for lots of different tests-CBC,Celiac,Fecal Calprotectin,Ultrasound,CT Scan,Endoscopy and finally a Colonoscopy-I DID have to really push for this however.
At the end of all that I have been diagnosed with IBS.
TBH I can't find anything that helps me I just have to ride it out when a fare up happens-but the tests did help ease a lot of worry from my mind and I have been so much better since.
I hope the tests will do the same for you and that you get a diagnosis that you can then start to treat.
Being in pain with a stomach ache is the worse I think!

I'm glad you're feeling better @charliebear78. You have my full sympathies, this is the pits.

@NerdyDad I've been trying to take vitamins every day but some days I'm so sick I can't manage it. Thank you though, you are right, I do need to keep my vitamin levels up.

FWIW I'm following the FODMAP diet for IBS type symptoms, but it is restrictive and shouldn't be done without some kind of medical supervision. It's also v. complicated. But I find dietary advice in gastro issues incredibly hard to untangle.

I definitely have diverticulosis - does anyone know if that means I can't have the diagnosis of IBS as well? I have avoided constipation since diagnosis and so no longer ever get the acute diverticulitis which was severe pain. I wish it weren't such a minefield. Good luck finding out what it is, OP.

Try to do very gentle exercise if you can. Swimming is good if you are up to it, short walk or even just simple stretches and yoga. Hot bath, hot water bottle, rub your tummy clockwise. Yes can have ibs and diverticulitis. They will try to say ibs is psychological. Make sure they rule out everything else
Can you claim income related esa?

Sorry, contribution related

I don't know whether I'd be able to claim ESA @sumsumsum, at the moment I'm still being paid by my employer as I work out my notice period.
In theory my GP could decide I'm well enough to return to work and refuse to sign me off so I'd have to go back and work out my notice.

By coincidence, DH was saying last night 'it's clear you aren't going back, I wish they'd just pay you off so you don't have the fear of having to go back to work'. Well, quite.

Today I'm having a 'good' day but I don't know how I'd be if I had to do a days work.

I'm seeing the consultant today so it's a shame I'm feeling ok, if I had to pick a day to feel lousy then today would be it.

Sorry, it was @Missingstreetlife who asked about ESA.

I am trying to exercise though some days it's easier than others.

Update from my consultant appointment (if anyone is interested).

He thinks diverticulitis is more likely than inflammatory bowel disease.
I've been referred for a colonoscopy and an MRI.

I'm pleased but it's just one more step on the road to a diagnosis and I've been in a lot of pain and had diarrhoea and severe nausea.

My heart goes out to people who are more poorly than me.

I am glad you are getting some where. My DH has cohrons and he found the clear out for the colonoscopy improved his symptoms.

That’s great that you had your appointment and are a bit closer to a diagnosis. I hope you don’t have to wait too long to get the tests you need. Are they putting you on any treatment while you wait?