Hi, my name is Louise_14! Has anyone got advice for dealing with diverticulitis and IBS D?

Hi @Louise_14, and a big welcome to you to the forum. Please excuse the lengthy reply but I hope some of it might help you 🫠😊.

I was diagnosed with IBS (m) c 3 years ago (the jury's still out for me whether I have got that). I also have diverticulitis which I've had c 25 times in the last 4 years. My history with it all is complex with 7 intestinal diagnoses since I was very ill with Covid in Nov 2020 and after a lot of tests.

My starting point for advice would be to ask if you've been under the care of a gastroenterologist and had tests. Bile acid malabsorption is often misdiagnosed as IBS for instance. This is tested via a SehCAT scan.

Have you had faecal calprotectin tests (indicates the inflammatory levels in the bowel which can be indicative of inflammatory bowel disease, Crohn's Disease or Ulcerative Colitis).

Have you had a colonoscopy that shows you have diverticular disease and the severity of it.

Have you been tested for coeliac disease (the Gold Standard is via a gastroscopy).

Sorry, I digress, you asked specifically about diet.

I was on a low fodmap diet but this should be done under the guidance of a dietician or other qualified medical professional. It is, briefly, where fermentable carbohydrates, which triggers symptoms like bloating, pain, gas in people with IBS, are eliminated over 2 to 6 weeks then reintroduced one at a time to figure out which foods need to be excluded or reduced in the diet. It was incredibly tedious and it didn’t work for me.

I'm often on the BRAT diet (toast, banana, apple sauce and rice) if I have D & V or nausea. It is not recommended any longer unless for only the very short term as it is not healthy. I just tend to fast for 24 to 48 hours, the latter is not pleasant (nor healthy).

I eat Greek yoghurt every day with the L. Bulgaricus, L. Acidophilus, S. Thermophilus and Bifidus, L. Casei cultures). Many of the yoghurts do not contain these cultures. That helps me as well as Gluten Free bread and crispbreads and lactose-free milk (I'm not coeliac).

Also, low inflammatory type foods could help and I've rarely drank alcohol which can cause inflammation.

I have pancreatic failure and am under a colorectal surgeon, gastroenterologist and dietician as I cannot absorb food or micro and macro nutrients but am on pancreatic enzyme replacement therapy to help. My preference would be TPN now but that, and surgery, are unlikely to be offered to me so its just a case of managing it day to day.

A charity I can recommend is Guts UK. Their helpline number is 0300 102 4887 Mon to Fri 10am to 2pm.

The IBS Network were brilliant but closed due to lack of funding in June but their forum can still be accessed via 'Health Unlocked'.

It may be a good idea to ask your GP for a dietician referral. My bone health has been severely affected by lack of nutrients etc and a 2 year wait for referrals didn't help!

I am not an expert by any stretch of imagination. I am a nurse (was) but any knowledge I've got has come just from my experience with it.

I hope you find a way forward Louise that helps you manage what can be very debilitating conditions. Any questions please feel free to ask or DM me. With very warmest wishes.

You're very welcome Louise. Sorry this is lengthy again!

The fact you've had a cholecystectomy may be relevant, especially as your Consultant picked up on that two years ago; I'm guessing they didn't organise a SehCAT scan.

Forgive me as you'll probably know this but the liver still produces bile but it produces a continuous flow directly into the small intestine and can overwhelm it (as opposed to going into the gall bladder, the reservoir) and therefore releases bile acids. I cared for patients following this surgery who then needed to go on a low fat/dairy, low processed foods, no spicy food etc etc!). Some needed to go on bile acid binders (Colesevlam) as it can cause D as it increases the risk of bile acid malabsorption [BAM] which itself, causes D.

It's also often important to go on high dose vitamins and minerals but only via a prescription off GP. I was prescribed Colesevlam but could not tolerate it however my results for BAM were negative - big however though - I'd took Loperamide (Immodum) to be able to get to the appointments which were likely to have skewed the results. My gastroenterologist went out of her way to help hence the trial prescription for Colesevlam.

So I don't take Colesevlam. The prescribed vitamins/minerals I take are ZM3 high potency. Plus CalciD for osteopenia. I have a 18% FRAX score on my Dexa scan so a high risk of a major orthopedic fracture of the spine or left hip over 10 years. In my case no doubt contributed to by a c 3 year delay in treatment for malabsorption and malnutrition.

An 'easy' test to have is faecal elastase which identifies if you're absorbing food (if felt to be relevant) or a SehCAT scan to check if it's BAM.

I also had an MRI small bowel study that showed damage to my small intestine (and less villi/absorption area) but the cause is unknown.

My own experience has led to me being dubious at diagnoses of IBS when other potential causes have not been exhausted; I had 2 consultants initially (2 different hospitals), basically a first and then second opinion. I requested a third opinion and am very pleased I did as it got me to where I am now which is not great, but at least I'm on the right medication.

Sorry I don't mean to overload you with information but it is so very easy to be dismissed with an IBS diagnosis when other avenues may not have been explored, especially as no amount of dietary changes will necessarily improve the situation if there's other, contributory factors.

Once again, my apologies for the length of this, especially if it isn't relevant to your situation. All the very best to you and take care.

Just edited sorry to say, incorrect to say no amount of dietary changes will necessarily improve the situation - of course some dietary changes can still help! My 'bad' as they say! 🫠😊

Thanks Louise 😊 @Louise_14

All the information I've given is a bit all over the place I'm afraid! Moreso because I've included stuff I've got going on.

Most importantly, everything I've mentioned will have more symptoms, besides D. So it's hopefully fairly 'straightforward' for you to identify, or suspect, whether they apply to you, or not.

Please excuse me stating the obvious (and I'm not trying to diagnose 😁) but it might be worth you looking at some of the conditions before your appointment to see if you have the symptoms, or not, so that it helps you, and then your doctor, to narrow it down and to get any relevant tests you may need and makes the very best of your time - I'm glad you've got a supportive GP now.

Bile acid malabsorption being one of them to check.

Finally, I didn't mention Rapid Gastric Emptying ('Dumping Syndrome'); this is where the contents of the stomach, as well as bile, empty too quickly, into the small intestine; it causes D and nausea and a few other symptoms in the first stage, anything between c 5 and 30 minutes after eating.

The second stage, which not everybody will get, occurs c 1 to 3 hours after eating and has worse symptoms including hypoglycaemia/dizziness/ fainting. This is more common in people who've had bariatric or gastric surgery; it can also occur (more rarely) following gall bladder surgery/removal of gallstones etc.

Also worth looking up SIBO - small intestine bacterial overgrowth.

It may end up being IBS but that diagnosis should only really be after other avenues have been properly and appropriately explored; even something like Coeliac Disease can cause permanent damage if left undiagnosed and without a gluten free diet.

I think I've exhausted the whole of the gastrointestinal system now, in one way or another 🤣😂.

Please always feel free to ask me anything as and when anything comes to mind. I hope you have a relaxing evening and take care.