21,110 members16,732 posts


I can't think of a better subject heading. For the last few weeks my bowels have becomes very erratic. Up until now, I haven't had any problems except constipation caused by pain meds and solved with a glug of lactulose.

For well over a week I've felt bunged up something terrible , with a noticeable tummy bulge. It's uncomfortable but not painful. When I move my bowels it feels like it isn't the full poo. This is very new to me. I was consulting Mr Google and noticed that I might be developing symptoms of IBS. I will give it a little longer before seeing my GP, and think I'll splurge on more VSL#3. Oh, and I have less wind than usual.

The only change in diet recently that I can think of is that I've been eating less of my favourite natural yoghurt, and am starting to enjoy all the fresh summer fruits coming into season. Love the stuff, and couldn't eat it for a year when my upper gastric problems were at their worst. I could indulge last year with no problems. The only fruit I can't eat is any kind of melon except water melon. Other melons make my lips, mouth and throat swell and I haven't had any for over 30 yrs.

Any ideas? I drink plenty of water, have tried the prune route etc.

I'm bothered that the upper gastric problems are extending further along/down.

11 Replies

Sympathise. My bowels are a bit sluggish too, shall we say. Lactulose helps me, plus loads of water. Might be good to get checked out if you are feeling bunged up and swollen though.

Are you the person who changed their diet recently?

1 like

Thanks for the sympathy! I think Twitchy is the most recent to try the anti-inflammatory diet.


Ah that's right. Very frustrating to have these symptoms. Like a merry-go-round (it's controlled here, but oh, look what's popped up now!).


SORRY to say: this sounds a lot like the lower GI flare I've been having investigated for 20 & I share similar upper GI conditions, I think (chronic early onset oesophagitis, dysphagia, gastritis caused mainly by bowel bacteria overflow, gastroparesis, duodenitis) and dysmotility (slow transit motility from mouth to a**) due to underlying immune dysfunction + connective tissue disorders giving IBSC-LIKE signs & symptoms.

For sure, this 20 month lower GI flare has made me realise FULL ON that chronic upper GI conditions tend to be mirrored by lower GI's all connected 🤷‍♀️...and the older we are, the more coaxing along our GI tract seems to tend to need

Apologies for repeating some of the detail in my many posts on these 20 months of investigations 😉, but, for what it's worth....this is what's helped me cope most:

- ultra Low Fibre Low FODMAP anti inflammation exclusion diet

- daily methylcellulose (Celevac) insoluble Nonfermentable Bulking Agent to compensate for low fibre diet, with the right level of hydration (eg raw fruit especially is a killer for me, and has been for some time....have had to gradually give up all sorts over the past, say 20 years...berries etc...alsi pears & melons have been no nos for ages....)

- daily Ortis cube as stimulant, again with the right level of hydration

- my daily combined therapy lupus meds, to damp down GI inflammatory process

- my daily immunology treatment plan: coamoxiclav antibiotic indefinitely, to damp down the bowel bacteria overflow-related gastritis

Now gastroenterology's nutrition & dietetics clinic has had me referred to allergy clinic for Mast Cell Activation Syndrome (MCAS) investigations re this persistent lower GI flare (but phew, at least meanwhile the bloating & distension & dysmotility are finally a lot less severe thanks to the Celevac + Ortis + low fibre diet!)

Your description really makes me wonder about you & is a link:

I forget: do you also have Ehlers Danlos hypermobility in your mix, like me?

Sadly, osmotic laxatives like lactulose & movicol just make my lower GI issues worse...l avoid them totally now, with agreement of my gp & gastroenterology

Am sure you'll get some great replies

Hope you'll let us know how you get on with figuring this out & managing it....usually we're advised to start by seeing our GP....

🍀😘🍀😘🍀 coco


Thank you coco. It's just one long tube isn't it? Goes wrong at one end and works its way along. I don't have Ehlers Danos but last year physio remarked I was the bendy-flexiest patient she had seen. I've had a couple of dislocations but they were in circumstances when anyone could have had them.

I've had a look at FODMAP before. I'd try anything under a dietician's advice if this gets worse. The only dietary advice I've had before was to help me gain some weight and was just about eating more, overlooking the fact that I'd love to do that if I could.

Ortisan I know from when my mother took it I'll try it. Anything like senna just cramps and hurts.

I've looked at the MCAS link. Interesting. To date I know that bee stings and jungle hornet stings result in anaphylactic shock ( but the liklihood of being stung by jungle hornets again is close to zero). I do have plenty of other year round allergies, mostly contolled by daily antihistamines and keeping my distance from cats, horses, rabbits and goats.

I'm keeping a diary of food and intestinal results. I've discovered quite comprehensively what to excude and avoid from experience to control most of the upper gastric problems, though sometimes my stomach will refuse anything.

As ever, GP is the first port of call, though the CTD clinic has given permission for me to seek an expedited appt if I lose more weight. At the moment I'm steady on a couple of pounds/ a kilo less than this time last year.


🤷‍♀️ guess we've got stuff in common...whatever it "actually" is 😂😉

If you do try ortis cube go up on the precautions online & talk to your GP....they can both be got hero colorectal chief said:

2 Celevac a.m. & 2 Celevac pm with plenty of water

Only 1/2 ortis cube pm before bed with plenty of water

This does work for me so long as I follow an ultra low fibre diet


1 like

I forgot the squatty potty! I haven't got one, but it's interesting. I'm too delicate to describe one, although I'm happy to head my post "Bowels". Try googling if you haven't heard of them 💩😀


Hi L. Can't even begin to join this conversation as off to Glasgow in a bit and need to get up and take my Lactulose, drink tons and hope. I never have to worry about the other extreme these days but I'm forgoing my liquid Senna today just in case. Otherwise I find coconut water and raspberries plus plenty of dates and figs and prune juice have become my good pals while on this AIP diet. And always masses and masses of water! Poor ol' bladder though - phew?! Xx

1 like

Hi lupie it's

Sorry to read of your lower GI problems. As coco rightly says our digestive system is from mouth to anus and it's very common to have IBS like problems thanks to lupus. Stress alone of coping with such an unpredictable illness. Fruit usually should help you go so maybe the change of yoghurt is to blame. Bloating can be very painful and uncomfortable. You can have peppermint oil capsules prescribed or buy them OTC but I think it's wise to speak to your GP about this change of bowel habit if it doesn't improve.Thete are also other treatments your GP could prescribe for IBS. Have you also had to take extra painkillers or changed any as they can be very constipating!. I hope you improve soon. X


I've had 'sluggish' bowels for years and have taken psyllium husk supplements to keep things moving. Upper GI problems - too long a story to bore you with, let's just say the pain of oesophagitus, diverticulosis, bile reflux and acid reflux was intensified when I had trapped wind under my ribs and radiating through to my back. I'm heading for Nissan fundiplication surgery and I wanted to try some self help measures to ease the pain before I make a decision about whether I go ahead with the op. Stopped the psyllium supplement and decided to give VSL#3 a go along with modifying my diet. Have been taking it for a month and am amazed at how much better I'm feeling. Within a week my sluggish bowels were more regular, I've had a massive reduction in bloating and trapped wind. I still need to look at my diet because I have excluded a lot of foods because of the severity of the reflux. I had to eliminate nuts and seeds completely for example, but one step at a time.

Sounds like you're doing a lot of the right things Lupiknits, hope things improve.

1 like

Thanks grannyjogger. hope you can improve without needing surgery.

1 like

You may also like...