Abdominal cavity soreness/inflammation? - LUPUS UK


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Abdominal cavity soreness/inflammation?

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Here I am, forcing myself to look hard at the chronic abdominal cavity symptoms that have been simmering & flaring all my 62 years of what has turned out to be infant onset lupus + early onset hypogammaglobulinaemia & lymphopenia + ehlers danlos hypermobility & sjogrens

A bit of background:

Last autumn an abdominal flare hit me, giving the most severe pain & reaction I can recall. Even my brave early onset crohns-patient husband is alarmed & insisting it's time for my GP & me to get this long-time abdominal stuff better understood. Until now, I've been fairly competently lifestyle managing my abdominal stuff...watching it react to meds prescribed for my other multisystem conditions over the years...willing myself to believe I was coping fine without gastroenterology intervention aside from one NHS op & 2 colonoscopies. Meanwhile, over the decades, other more pressing multisystem problems could be getting more attention from my medics (chronic gastritis & pre-Barrett's oesophagitis with gastroporesis being investigated & treated & monitored by gastroenterology....+ other stuff by other clinics: ENT, oral, GYN, urology (inc complex persistent pattern UTIs+ pyelonephritis), Derm, neuro, immunology, rheumatology etc etc....)

But now it's time to observe my abdominal cavity symptoms more closely & prep notes for consultations...+ I've just had the first stage of current investigations: abdominal ultrasound inc internal wand. My last colonoscopy, 3 years ago, was fine. And the 2 NHS stool lab tests re colon cancer were clear. Am seeing my GP on Thursday for the ultrasound report, but I suspect it will be clear. Have already seen my fab urology surgeon and discussed this, so next month I see a urology physio to check my pelvic floor rehab regime. At some point, I suspect I should see a gastroenterologist experienced in immune dysfunction patients....etc etc. But am so busy attending so many different clinics...argh: not another one?!

Well, I could go on & on, but for now I'm posting this because I'm especially wondering:

Has anyone here noticed symptoms of nausea queasiness & dull pain in response to any type of contact pressure, relatively light & brief or prolonged, on any part of their abdominal cavity?

E.g. I haven't been able to wear even relatively tight clothing ever in my life...for many years even properly performed pelvic floor exercises have given these symptoms...just lying the palm of a hand anywhere on my abdomen from the ribs down brings on various degrees of dull aching pain & queasiness, depending on how my abdomen is doing at the time.

(My crohns husband says he doesn't have these sort of symptoms unless he is in a flare. I've had these symptoms pretty much all my life...and they've been gradually getting worse as the decades have passed...the flare that started last October being the worst)

Am trying to start this thread with just that 1 question...I suspect this sort of reactivity can be related to a barrel full of different abdominal conditions...but I just wonder if my predisposition to this sort of pressure/reactive nausea is common/familiar to many of us?

πŸ˜‰πŸ€. Coco

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Vasculitis affecting the mesenteric artery/arterioles maybe? Just a thought.

Barnclown in reply to PMRpro

Sounds possible...apparently my version of lupus is Vasculitis-like. So, what type of consultant would be more likely to be interested?

PMRpro in reply to Barnclown

Pass - vasculitis specialist? Or gastroenterologist?

Barnclown in reply to PMRpro

Yes πŸ€” I'm at my Lupus & Vasculitis clinic in March: will ask about this then, or/& ring our specialist nurse beforehand. Thanks!

No, I don't have that sensitivity (yet). It sounds worrying and you're right to investigate further. I agree with Pro that the lupus/vasculitis clinic would be better placed to asses that side of it in the context of the gastro, though I suspect they'll say that if all tests are fine, then there's nothing they can do.

Have you noticed an improvement in symptoms if steroids are increased, for example? That would give an indication if it is autoimmune related. No response won't exclude it, but it makes it less likely.

Yet another thing to worry about, I'm so sorry x

Barnclown in reply to Purpletop

Thanks PTπŸ™‚. Good question re pred: I suspect these symptoms would be worse if I hadn't gone over to daily low dose pred in September. Before that point, I'd just been taking 4 wk .10mg pred tapers 3x max per year, or more pred during emergencies. Am currently on maintenance 3.5mg pred daily, intending this week to see my GP & phone our lupus nurse to discuss trying an increase to see how my abdomen responds. Otherwise my lupus treatment plan is daily hydroxy + myco + amitrip, all of which have generally helped reduce any symptoms in the abdominal region. That region is complicated by my DES daughter birth defects (gyn internal deformities & adenosis etc inc endo) + my chronic complex persistent pattern urological conditions + spondylosis etc...and of course my sjogrens & ehlers danlos type hypermobility

There is another angle: repeatedly over the years I've found high dose antibiotic courses for one infection had the side effect of reducing symptoms in another of my multisystem conditions. Eg over Christmas, a 2 week course of coamoxiclav for a UTI+pyelonephritis did somewhat damp down this abdominal flare...which is making me think hard πŸ€” XO

PMRpro in reply to Barnclown

Some abx have an antiinflammatory effect...

Barnclown in reply to PMRpro

Glad you're saying so: you know a lot more about all this than I do.

My experiences of antibiotics seemingly having an antiinflammatory effect include:

Without lab tests establishing bacterial involvement, my Pleurisy was treated successfully by my GP via 2 weeks on antibiotics while also on prescription NSAIDs for spondylosis

Chronic gastritis damped down long term after Osteomyelitis in my upper jaw + corresponding sinusitis treated successfully via 5 months on high dose flucloxacillin

IV gentamicin given during rigid cystoscopy with GA, which cleared up chronic 'seemingly' abacterial cystitis


Barnclown in reply to Barnclown

PS have followed up on PMRpro's tip re antibiotics inflammatory effect & here is a good link:


And also from CLINICAL MICROBIOLOGY REVIEWS, 10 Oct. 2000, p. 615-650 Vol. 13, No. 4 Interference of Antibacterial Agents with Phagocyte Functions: Immunomodulation or β€œImmuno-Fairy Tales”? Marie-Therese Labro:

β€œThe use of antibacterial agents as anti-inflammatory drugs falls into four categories:

(i) agents which have been in use for a long time (sulfones, sulfonamides, and clofazimine);

(ii) drugs which have recently triggered interest, particularly in rheumatoid arthritis (cyclines and ansamycins);

(iii) drugs which are effective in specific diseases (for example, macrolides in diffuse panbronchiolitis) and show promise in other inflammatory settings; and

(iv) drugs which could be developed in the near future but are at present only being studied in animal models.

Classical use of antibacterial agents in inflammatory diseases:

In addition to its antimycobacterial activity, dapsone exhibits significant anti-inflammatory activity and has been utilized in many neutrophilic dermatoses and other inflammatory diseases such as dermatitis herpetiformis, leukocytoclastic vasculitis, bullous lupus erythematosus, pustular psoriasis, erythema elevatum diutinum, and Crohn’s disease (36, 96, 169, 303).

Similar indications have been put forward for another antimycobacterial drug, clofazimine, which has proven effective in vitiligo, discoid lupus erythematosus, pyoderma gangrenosum, and pustular psoriasis (53, 233).

The effectiveness of these two drugs in mycobacterial diseases has been also ascribed at least partly to their anti-inflammatory activity. As indicated above, both dapsone and clofazimine significantly depress the inflammatory potential of phagocytes; this property clearly seems to underlie their anti-inflammatory efficacy.

Similarly, sulfonamides have proved effective in the treatment of Wegener’s granulomatosis (325), and sulfasalazine (and sulfapyridine?) displays antirheumatic activity (308).”


I get this type of pain as well (on the right-hand side), especially when I am struggling physically (under physical stress). EDS is a crazy condition (as I have). No surprise if you were completely crippled by 50-60 yrs old with this condition (as someone else posted accurately before). It may well be that you have got some vessel issues somewhere (it does not need to be "vasculitis") - it could be congenital vessel narrowing (from old flare from infancy / childhood etc). I always explain this by saying, "you have got a tree which grows diseases". Sounds like you got one of these trees which I sadly own myself. There's a famous gastro for EDS, peeps with EDS see. It could be dysmotility. Plus, if you have neuro symptoms / neuro issues, then sometimes, you get symptoms in your gut believe it or not. That's why your colonoscopy was possibly all clear previously as mine was. Just an educated guess.. ;-)

Barnclown in reply to Hidden

I like your train of thought πŸš‚, thanks...and in my reply to PT, above, I touched on some of the issues you're mentioning...it's encouraging when you confirm my EDH & chronic neuro symptoms can be relevant

When I started daily myco + pred several years ago, these damped down my chronic neuro symptoms quite nicely, and at the same time aspects of what I've always thought of as chronic pelvic girdle pain also damped down (chronic sacral synovitis was part of that mix, but I feel sure one of the biggest wedges in my pelvic girdle pain diagnostic pie was neuro....but it's only this Autumn/winter that I'm facing up to what I think of as peritoneal cavity involvement (I already have a history of serosal sac inflammation in the pleural cavity))

I have no constipation at all, and have hardly ever had (have loose motions mainly, and frequency tends to be above 'normal'. Am v reactive in that way) so, do you know: would dismobility be less likely in my case? I underwent thorough upper GI motility investigations 10 years ago and was judged 'normal', although I've had trouble swallowing all my life and have always found digesting fats & proteins difficult

My father was also EDH/Marfan & died of a ruptured AAA in his 70s. My mother & her sister survived rectum tumours via radiation etc + colostomy

And on & on πŸ˜œπŸ˜‰

Have come late to this BC. I think the chronic inflammation we suffer affects every body system to some extent.

Just be careful which gastro you see, most are IBS obsessed and dismissive about any abdo pain if it is not straightforward Inflammatory Bowel Disease.

More recent research has indicated that Sjogrens can cause a microscopic inflammatory process in the bowel lining. This will manifest itself like IBS but will be improved by steroids and also some antibiotics, for me Ciprofloxacin is very effective.

My inflammation is concentrated in the pancreatic, biliary area but I also have chronic gastritis despite years of Nexium.

My bowel is very sensitive too and protein and fat cause instant ( within an hour or so) loose stools.

But not all gastroenterologist are enlightened as to this type of inflammation with Sjogrens. Research is ongoing so hopefully it will all become more generally understood soon.

My present Rheumy had to educate the pancreatic surgeon I was under that this condition did exist. Sadly he also had to educate some gastros too, yet you would have thought they would have been up to date on it all.

Mind sets seem to take forever to change in the medical world, and then you get the "two camp system' when they take opposing view points.

Sometimes the simplest thing like listening very carefully to the actual patient is the last thing they do.

Meantime we are all struggling to live some kind of life!

Hope you can get some answers soon.

C xx

Barnclown in reply to cuttysark

Thanks so much cutty: your voice is truly madly deeply that of experience.

Via conscientious diet & exercise & posture training (Alexander Technique) & osteopathy & meditation/mindfulness etc I've been lifestyle-management-coaxing my chronic abdominal symptoms along relatively effectively for so many years/decades that I've become too accustomed to them....and I'm actually glad this severe flare has come 5 years into the recovery of my infant onset lupus diagnosis. At this point, I've seen so many consultants in so many different types of clinical speciality that I can TOTALLY relate to your comments re fashions in gastroenterology affecting consultants' clinical biases. Certainly I see consultants influenced by this tendency in all my different clinics. It dismays me. But I cope. And, since my lupus rediagnosis in 2011, so far only a few consultants have let me down (one chief ortho surgeon & a new dermatologist). So, yes 😜! I'm now I'm dreading having to cope with gastroenterological biases....

but: my 30 years of experience caring for my crohns husband, and reading the crohns & colitis society mag + what I've learned from others here on forum = me feeling more or less brave about referral to gastroenterology. I admit: it's the very prejudices & biases you're describing are exactly what have made me focus of lifestyle managing so intently all these decades...just so I could avoid gastroenterology

So, I've calmly spent the past month forcing myself to look as objectively as poss at my medical history & how these chronic abdominal symptoms fit in. Thanks to the wonderful discusion in this thread , this morning I've had a major breakthrough re how to clearly & concisely present to gastroenterology - should my GP + my rheumatology Lupus & Vasculitis clinic agree I do actually need to be investigated! AND I've found a highly experienced gastroenterologist expert in immune dysfunction patients at the same hospital as my rheumatology dept...+ he practices privately too. My thought is to consider consulting him privately in the first instance, IF my GP + L&V clinic agree I do need gastroenterology input

Knowing as much as we now do about the intricacies of my chronic multisystem conditions, I have been leaning towards sjogrens-related inflammation of the peritoneal sac being THE prime suspect influencing both my chronic urological conditions & my chronic lower GI symptoms. These 2 systems (Urinary tract+kidneys & gastro) have been big day to day issues for me since my 20s. My feeling is that when my sjogrens became extra active during perimenopause, my existing urinary tract & lower GI probs were exacerbated...and, as well, perhaps processing my lupus meds has tipped prexisting pancreas &/or kidney grumbling into shouting a bit louder during this past year ...but we'll see...

So, your wonderful reply means an enormous amount to me πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘

Thanks again cutty...wishing you all the best πŸ€πŸ€πŸ€πŸ€πŸ€


Sorry. input a bit late. Ask 'them' ? if they have been monitoring your liver & bile duct emzymes. This should be done when taking micophenolate.


Could these be a standard part of my monthly myco monitoring blood tests? Eg I understand the liver function tests in my monthly monitoring are the ALT/AST & ALK Phos tests....So far these results have been normal. Sorry, am not v clued up re the liver & bile duct part of my blood tests πŸ˜”....am v glad of your help with understanding this! XO

I think you're way more clued up on liver function tests than me. I know my liver function is a bit off from the Mico, but not enough for anybody to take me off the stuff. Past history of Lupus related hepatitis probably hasn't helped. Many moons ago I went yellow and very squeemish for about 8 months / no appropriate care - 'sero negative' biopsy mysteriously cancelled - just luck i recovered)

I get the impression the bile duct emzyme test was beyond the call of duty as my GP who is a specialist himself was very impressed by the nephrologist/generalist specialist - who ordered it. The result for this one was a little off too.

They were all done due to being on immunosuppression, but for which medication I'm not sure) Went from micophenolate mofetil - after 6 months became chronically nauseas on this, then switched to micophenolate sodium - (myfortic) as this drug is essentially the same as micophenolate mofetil, but on a chemical level it represents its chemical state 2 - 3 steps down the line, as it would exist in your own body via metabolism. ( If the interpretation of my Google is correct ?)

( spent a tiny bit of time on azathiaprine too) became very weak on it)

Unfortunately having said all this due to recent chaos I didn't keep a record of the name of - said enzyme..... : (

I could ask my GP in about 3 weeks if you are still curious at that stage?

ps. When you see a gasto person, make sure they have additional qualifications - took me 2 years of pancreatic problems and seeing a 'very basic' gasto man before I essentally self referred via a GP to a gastroenterologist who was also an experienced generalist specialist and endocrenologist. He pretty much knew what was going on the first time I saw him - thank god.


GRRRREAT adviceπŸ‘πŸ‘ŒπŸ‘ MANY thanks!

Please do let me know what your GP says...if you can remember (too much to remember these days...)

Your experience is encouraging!

Am aware re GI probs & myco cellcept V's myfortic...have a lupus buddy @ my clinc who did have to go onto myfortic for those reasons...now you & she are the only myfortic takers I know. I will make a point of asking about this, but I have a feeling this isn't my issue...I was successfully taking myco cellcept for 2 years before this flare, and the basic problem had been an issue all my life anyway.

thanks again. πŸ€—πŸ€πŸ˜˜

Barnclown in reply to cuttysark

PS cutty: I especially like + am grateful for your comment:

More recent research has indicated that Sjogrens can cause a microscopic inflammatory process in the bowel lining. This will manifest itself like IBS but will be improved by steroids and also some antibiotics, for me Ciprofloxacin is very effective.


SjogiBear in reply to Barnclown

My rheumy and GP agree that Sjogrens is affecting the gut for me as well - unsure whether it is 'basic' inflammation or whether it is nerve related (or autonomic neuropathy). I get pain predominantly on the left hand side and my abdomen is tender generally although is not painful per se if palpated (if that makes any sense). I have also started to get cranial neuropathies connected to the Sjogrens so this may be inter-related I guess. Best of luck with getting to the bottom of your abdominal issues and I hope you get some answers xxxx

Barnclown in reply to SjogiBear

Thanks sjogibear: very helpful: yes, I've suspected autonomic neuropathy involved in my stuff too...forgot to mention this. And my neuropathies are neuro cerebral. Rheumatology indicates sjogrens is involved in flipping everything: some of us are dry all over inside & out 😜. This afternoon I had a v good appt with my GP about the abdomen stuff: thanks to this discussion, I think it went really well. Now I'm ready to discuss this with rheumatology & immunology. I'm planning to add a PS update at the end of this thread tomorrow...too tired this evening.

Wishing you all the best...am so glad you're here: your comments always help (and we seem to be considering somewhat similar stuff)

Take care


Great plan re the excellent gastro you had in mind.

My history with abdominal symptoms is similar to yours ,along with the bladder too and also kidney , though centred more on upper abdo.

Interestingly all my Sjogrens symptoms took off dramatically at peri menaupause time too. At the same time I developed coronary vasospasms and microvascular angina, and dire fatigue that led me to giving up my work completely at the age of fifty.

I think by doing your research first ,as you always do , you are in a good position now for the next stage.

We will all follow your journey closely with great interest.

I have learned so much from the folk on this forum ,and when I get a knock back from the medical world ,it helps set me up again and restart the battle!

Thanks so much for sharing it all.

C xx

Barnclown in reply to cuttysark


Hi Barnclown

So sorry to read of all your added abdomen problems that you really don't need!.

Just an observation that might help you. I have UC and been having Stronger abdominal pain that has responded to my local steroid treatment that I use. It might be an increase in your steroid dose for a while would help. As we both know our illnesses can cause inflammation that doesn't always show up on tests. Good luck for tomorrow talking to your GP, will be very helpful I think. XπŸ‘ŒπŸ»πŸ˜Š

Barnclown in reply to misty14

Many thanks misty! πŸ‘πŸ‘πŸ‘πŸ‘ Am glad you're reminding me of this ultra important point:

"our illnesses can cause inflammation that doesn't always show up on tests"

I'm only now feeling as if I really understand this vital point...perhaps because, despite my inflammatory process starting in childhood, I've only had these 5 years since lupus rediagnosis to formally learn how true this point is....my feeling is that in one way or another this point has been underlined many times here on forum, including recently in that fantastic discussion last weekend (re RA & Glenn Frey). For me, the 'trick' is to learn to listen carefully & objectively to my body, to process/understand what I'm hearing, and then take reasonable action. in effect, I become my own physician to an extent. I find this responsibility a bit mind boggling...but good counselling from expert patients like you helps me keep calm & carry on!πŸ’ƒπŸ‘πŸ˜‰

Yes, both you & Purpletop, above, are recommending I consider increasing my daily pred dose. I think this makes a lot of sense and I will discuss it with my GP, and, if necessary, my specialist lupus nurse. I'm slightly hesitating to get on with increasing my dose of pred because already those 2 weeks on the antibiotic coamoxiclav for my recent UTI+pyelonephritis have somewhat damped down these abdominal symptoms to the point where I can function somewhat better than I could before Christmas. If my GP & SLN say I need referral to gastroenterology now, I'm loath to mask my symptoms further via a higher rise of pred before I see a gastro guy/gal....it's another CATCH 22 situation πŸ€” (dexa vu all over again: this is exactly what I had to juggle this time last year while waiting to be seen & investigated by urology!)😜

Am hoping your greater abdominal pain cooperates with treatment pronto...sending you πŸ€πŸ€πŸ€πŸ€πŸ€πŸ€


Hi barnclown, really feel for you suffering another complication, I cant add any further information or help, but just want to wish you good luck seeing your gp and hope he helps you get some relief from your symptoms. X

Barnclown in reply to KarenC

you've made me smile, πŸ€— which gives me a real boost: you're a dear, karen. thanks so much...wishing you all the very best XOπŸ€

Hi BC so sorry about your abdo problems. Hope you get the right treatment very soon. Let us know how you get on tomorrow.

Just wanted to tell you about symptoms I have, rheumy & GP know about them, but I have not been told what is causing them - I know believe them to be caused by Sjogrens.

About 10 years ago, diagnosed IBS. Then a couple of years later develop Proctitis (inflammation of the rectum) which was not pleasant at all. Had steroid suppositories for a month. Off work 6 weeks.

Since my problems with ?SLE/RA/GCA started in earnest last July, my symptoms have progressed rapidly. I do have a diagnosis of RA and Hughes syndrome.

I also have very dry eyes and oily tears, dry mouth and sinus problems, constantly peeling lips and very dry skin.

You thread got me to ? Sjogrens so I have just been on their website. I have all of the symptoms listed.

What confuses me is that my Rheumy must know - he must see these symptoms in his clinics all the time. Why oh why do they not tell us so that we can deal with it.


Barnclown in reply to babssara

Oh babs...Good question πŸ‘πŸ‘πŸ‘:

"What confuses me is that my Rheumy must know - he must see these symptoms in his clinics all the time. Why oh why do they not tell us so that we can deal with it"

...I wish I knew the answer...this happens to all of us a lot of the time 😝: it's an awful strain. Thank goodness for our forums...we help each other figure this stuff out!

Not till 4 years years after my lupus diagnosis was recovered did I twig that the widespread Sicca Symptoms noted in the diagnosis section of my rheumatology clinic reports were actually due to seroneg Sjogrens. By then I was already well into annual clinic attendance for sjogrens syndrome therapeutic maintenance & monitoring @ gyn, urology, opthalmology depts etc etc. I did have to emphasise my symptoms in order to get these referrals...and it's been worth that effort: all my sjogrens treatment plans are helping. Wishing you all the best with this...hope you'll let us know how you get on

Re your horrible proctitis experience: OMG I'm so glad you've got that under control 😜... I cannot believe we have this in common too....mine developed in my late teens...it was torture...flared alongside horrific prolapsing haemorrhoids (not caused by constipation etc. Due mainly at that point to ehlers danlos hypermobility connective tissue probs (same stuff mainly causing my paroxysmal haematomas in my other 'holes' & extremities)). Eventually in my early 30s the prolapse etc got so bad that the NHS gave me a full on haemorrhodectomy op...a dreadful experience: friends who are mothers have told me they found it worse than giving birth. But, lucky me, afterwards the proctitis cleared up almost completely...and no more prolapses. Of course the op left me with other probs down there, but these I can at least tolerate! So am sending you 😘 With vast amounts of respect!

Am glad you replied XOXOπŸ€πŸ€πŸ€πŸ€

PS thanks to our amazing PMRpro's reply, above, I've now got a better handle on the antiinflammatory effect of antibiotics...I've posted some info above as a PS ...which may interest you

Hi again my wonderful friend.

Sorry such a delay in replying as been in a full on fisticuffs with a particularly annoying flare.Think this one must have terrier in it as can't shake the darn thing off.Well enough of that.

As you know had full abdo scan as having very similar symptoms as you including the lightest of touch feeling like an elephant mistook me for a bench.I honestly wake up if rest arm on it in my sleep (my abdomen ,not a sitting elephant I hasten to add).

Scan was all clear except for "obvious signs of Eds ie. too much movement in everything".So GP looking into advice on gastro or vascular.I have also wondered if lack of natural saliva from sjogrens problems cause inflammation and dysfunction of digestive system .

With the antibiotic train of thought I had a very interesting conversation with paediatric department as my youngest son who also has Eds has suffered tummy pain and bowel trouble since a toddler which was put down to everything from growing pains to his autism!?

Then gastrologist said it was due to the Eds affecting his gut.This may be part of it but after endless tests ,endoscopy,colonoscopy ,bloods etc due to him having C - Diff ,which they only realised when it nearly killed him, he was put on weeks of antibiotics .This not only got him over the C-Diff. but for months after he had none of the stomach and bowel problems or tenderness .He is to see this paediatrician in March so I am going to quiz him big time about the connection as gradually my son's symptoms have been returning to the stage he was before .As it is obvious that the treatment he had helped him we want to know what,why and when he can be given something to give him his symptom relief and answers .

I really do hope you get some answers and help as you truly deserve them.

Take care xx

babssara in reply to littleeffie

Hi Effie Sorry to hear your son is plagued with this dratted illness too. I truly hope he gets some relief soon.

Babs x

You beat me to it: I was just taking famous afternoon πŸ’€πŸ’€πŸ’€πŸ’€ and got up intending to pm you asking how's things😘

Grrrreat reply: πŸ‘πŸ‘πŸ‘ wish none of us had this stuff, but it feels better to have it in good company! πŸ‘πŸ‘πŸ‘πŸ˜πŸ˜πŸ˜ R sitting on us❗️YES: EXACTLY: even just 'resting' a hand in the tumbo makes me feel the urge to projectile v****.

Your youngest: brave little fellow...no chap should have to brave so much...especially so young...hope you'll let us know what his paediatrician says! You're a 🌟 mother❗️

Please keep us posted on progress with your investigations πŸ€πŸ€πŸ€πŸ€


Thanks Babs x


thanks to all of you, i felt ready for my GP appt yesterday afternoon. she is the GP who has followed my case closely for almost 10 years now. we do seem to get along well (knock on wood). she gave me the ultrasound scan report, which revealed nothing sinister: so far so good!

i explained the current state of my abdo symptoms: that i feel 2 weeks on coamoxiclav for the UTI+pyelpnephritis had also damped down my abdo flare enough so that these chronic symptoms are back at a more bearable "normal" level (as outlined above). she agreed this makse sense because coamoxiclav is known to damp down bowel inflammation in ulcerative colitis.

i asked her if the effectiveness of coamoxi + this clear scan report meant we could postpone referral to gastroenterology for further more investigations including more sophisticated imaging etc until the next flare. she said yes, so long as meanwhile, i discuss my abdo stuff in clinics early this spring with rheumatology, urology & immunology, and ask which immune dysfunction-experienced gastroenetrologist i should consult. our aim is for me to try to see the gastro. while my symptoms are actually flaring, which may mean going for a private consultation...but in our area even private can mean waiting several months depending on how popular the consultant is...so the fastest way to see gastro. may well be via referral by my rheumotology clinic to gastroenterology at the same hospital

we discussed the pros & cons of treating my abdo flare with antibiotics &/or increased doses of prednisolone. she advises we use coamoxiclav, because:

my daily sle/ss treatment plan meds (hydroxy + myco + 3.5mg pred + amitrip) very likely actually prevented this october-january abdo flare from being even worse than it was

+because it's always good to keep doses of any med as low as poss,

+because we know the added anitinflammatory action of 2 weeks on coamoxiclav has worked on this abdo flare

= it's best to try coamoxiclav again on any intervening abdo flares while we wait for advice from rheumatology, urology & immunology this spring

i think that's about it. except to say that my crohns husband isn't convinced by the possibility that both my chronic abdo symptoms + my abdo flares might be managed with my sle/ss meds + antibiotics. he wants a more definitive diagnosis of the cause of my abdo symptoms. which is good: he'll continue to pressure me, which means i'm less likely to let my medics fob me off.

as expected, i was absolutely whakko blotto by the time i got home from my gp surgery: the strain of prepping for that gp appt meant i needed a lot of rest & sleep recovery. but i'm ok now

thanks again to everyone: you've helped me enormously to review & make sense of these lifelong abdomen symptoms, which makes me feel calmer about managing them. Also, your support is making it much easier for me to stay confident & reasonable in negotiations with my medics

Purpletop in reply to Barnclown

I'd trust your hubby - he has experience in abdo issues, he knows you and he sees your symptoms every day. If he says push for more, I'd push. He doesn't usually insist, as far as I remember you saying, so this must be serious to him. Sometimes those close to us see us more clearly than we could. X

Barnclown in reply to Purpletop

It means a HUGE amount when an expert patient like you suggests this. You see, during my lifetime of managing lupus & EDH issues, no matter how 'together' my head is and no matter how much I trust my instincts & my medics, I'm always questioning myself, the system, everything.

So, your encouragement to trust him is EXTRA ULTRA important to me. Even though I have been & am trusting badger's instincts already (have been since October when the chronic daily level of symptoms flared, which is when he first started seriously pushing me to get this investigated)


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