Diagnosis 🤩 Gastroenterologist App Update

Sorry for the late reply everyone. I haven’t been very well..

I’ve been eager to let you all know that I finally have a DIAGNOSIS! (Tummy)

👉🏻chronic Intestinal Dysmotility Disorder👈🏻

My CT scan revealed fecal impaction of the colon.

I also have malabsorption syndrome.

I’ve been referred to a expert dietitian. & a multidisciplinary team, pain management too + 🤩 a neurologist , due to numbness strange sensations etc. I’m struggling with my Nerves literally!

Eating:

I expressed that I feel ok if I don’t eat. But food is a must. My dad had noticed that I would be pain free to some extent when I don’t eat anything, which concerned him, & sometimes I can go days without eating at all, no appetite what so ever. which then causes more problems like severe painful constipation. Distension, Intestinal contractions.

if I do eat I have waves of pain with loud growling which has an electric shock effect.

I’ve been severely struggling with what different foods to try, The only thing I can tolerate is mash potato & gravy. If I push the boat out just a little.. I may have a few veggies but I become full very quickly but doesn’t sit well if I add new things. Plain Jane.

my consultant strongly suggested that I must without fail try my very best to eat more than just a few spoonfuls a day. Which I’m doing slowly. It’s all Trial & error.

So with this dieticians help I can find a healthy balance. Before all this started I used to love my food! A normal plate didn’t seem enough back then but now it’s a giants portion. I want to be able to enjoy a meal again, enjoy going out with the family, I miss being able to just simply eat. But I’m sure as time goes by & with the right help from the right people I can learn to love food again 😘 positive thinking.

If all else fails I will have to have an IV fitted in hospital, feeding tubes etc.

But I’m DETERMINED & WILLING to eat, no matter how hard it’s going to be!

We discussed a colonoscopy which was cancelled previously due to my deteriorating state. But I’ve agreed to go ahead for completeness. (To be arranged) he’s chasing up rheumatologist appointment & Cardiology.

Mr Shaw is absolutely fantastic!

I feel like I’m in the light at the end of the tunnel!

So conclusion:

No IBS no infection or virus has caused this gut damage & Intestinal Disorder.

Apart from suffering with excessive acid reflux & GORD for many years he confirmed that it was the Scotch Bonnet Chilli Meal that has caused this chronic debilitating condition

My partner surprised me last year with a romantic night in, Turns out the real surprise was the chilli. He was aware of my gastric reflux & not being able to consume spicy foods, a MILD curry would cause havoc. But still he put the whole chilli & SEEDS in anyway.. he didn’t tell me until I was unable to swallow, sweating, choking & nearly passing out!!

Jeez if only I could go back in time, I wouldn’t of eaten it, I surely wouldn’t be like I am now.. suffering.

Yes I am a bit bitter, but I’m the one that has to endure it. It’s crazy how a chilli can destroy your insides, something innocent became insidious.. It seems so unfair. Slap me- need to be positive... ha

But I am incredibly grateful to finally have a diagnosis!

One down a few more to go....

Next on the list is my Auto immune I have won this battle.. 🤞🏻🙏🏼 I will not loose this war :)

Xx

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HURRAH: Congrats: you’re getting the feedback & the care you really need! I love your attitude. Many thanks for this update!

Everything you’re reporting is vvvv similar to my version of this...seems to me you & i are in much the same boat. At 64, i’m just older... i feel as if i have been coaxing chronic mouth to a**s slow transit dysmotility & inflammatory process along forever.

My univ hospital Gastroenterology Feeding Issues Multidiscipline team refers to my version of this as visceral hyperreactivity with Intestinal Insufficiency segueing into Intestinal Failure due to progressive debilitation caused by underlying connective tissue disorders & immune dysfunction.

Because i have a PID (primary immunodeficiency, bone marrow dysfunction) running alongside all my autoimmune conditions & immunosuppression meds, i’m at highest risk level of infection during enteral & parenteral feeding (tubes etc)...so am doing all i can to avoid all that

I’m just a bit further down the line working with Gastro Nutrition & Dietetics. Currently rice crispies is probably my safest meal, but, like you, otherwise a little bit of mashed potatoes . My appetite is v low, but i’m determined to manage what solid food i can. However, am not even slightly tempted to deviate from the strict widespread food exclusions gastroenterology & i have figured out keep me from Intestinal Pseudo Obstruction blockages typical of patients like us....the results are too ghastly.

What gets me is that many of us are fobbed off with the IBS label at the earlier stages of this...when receiving the right expert help could go some way to delaying progressive gastro debilitation

Certainly my daily combined therapy SLE & PID meds do help damp down the autoimmune inflammation involved in my chronic GI problems. So i’m glad you’re now also being investigated for autoimmunity

I forget: have you been diagnosed with a type of hypermobility? If not, i hope you’ll ask rheumatology to check whether you are on the hypermobile spectrum...and especially whether you may have hEDS (Hypermobile Ehlers Danlos Syndrome) because my university hospital’s Gastroenterology Multidiscipline Feeding Issues Team has a significantly HIGH proportion of hEDS-type patients in care on “tube feeding” (enteral/parenteral feeding)

What hospital are you at?

Good luck at rheumatology

Looking forward to your next update

Take care 😘🍀😘🍀😘 coco

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PS i’‘ve always reacted SUPER BADLY to chilli: both the chilli peppers themselves and any type of bean and onions, garlic etc. In fact, as the decades have passed, i’ve had to gradually eliminate nearly 100% of all veg, fuit & whole grain fibre from my diet....now resistant starch too...in my case this is due to a hyperreactivity. Immunology is investigating me for a Mast Cell Disorder (MCD). My feeling is that now your health issues are becoming better understood while you’re young and resilient, you and your doctors can help you back to enjoying a varied diet again...but, if you’re anything like me, watch out for chillies, pulses, onions etc 😉😘🍀

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Hey Barnclown 🤩

Feedback is golden ! It feels brilliant to have proper communication. 😀

Aww your most welcome.

I think so too, I think this has been going on for a while, & the Chilli was like the cherry on top! I love how you speak medical ! You’d be a fantastic doctor coco !! You’ve been through sooooooooooooo much !! You deserve a nice big break! & a long ass relax & chill! Somewhere nice or even at home. Superwomen is your new nickname from me 🤩

I like rice crispies :) I’ve tried a small bowel but tend to stick to what I know well. Don’t get me wrong I cook scrumptious meals for my family son & partner & sometimes wish I could try just a little piece but it’s not worth all the pain afterwards. Prior to my digestive problems I loved a fry up every now and then but fatty foods dripping in oil is a big NO. So I have to get the thought outta of my head.

I couldn’t bare the thought of a Intestinal P obstruction..

I’ve read a little & that was enough.

I had my son at 17 I actually didn’t know I was pregnant! I was a slim size 6-8 & was struggling at the time with eating & in a abusive relationship . My GP said it was IBS & there was nothing they could do for me. No tests or medication- (Change my diet was the only solution).

I went for my depo injection & found Out after a scan that i was 5 months pregnant & I assumed my eating issues were because I was pregnant!

But after the birth of my son who is now 14 years old this March I struggled badly with mealtimes & felt better when I didn’t eat. I was accused of having an eating disorder & that it was all psychological. It was the most difficult time of my life abuse/newborn/and severe GI problems. I had no help back then apart from broken promises from my GP. (Referrals to specialists)

So I think fobbing me off with IBS was very wrong, & looking back I deserved the care. I was young, scared & clueless.

My body was out of control, I felt very alone & I tried my best to help myself in that unfortunate & terrible environment. Obviously stress & trauma can make you unwell, but I had so many other physical symptoms that didn’t seem to alert my GP. I was a hopeless cause to them & most definitely unwanted.

My ANA was tested when I was 11 years old. My ANTI DsDNA both positive till this every day, No feedback then or now just keep a close eye they said. At the time I was just a kid who was always ill, I’m an adult now, & sometimes feel so angry that I’ve been left for so long. Once I have my medical records I have proof that my symptoms go way back to being a child. I can’t remember the last time I was 100%. But what I do remember is I was a healthy kid until I turned 10 years old so something went wrong after that. I was born with a squint & visual problems, so I had many operations as a newborn to the age of 4 to correct the damage. But as I said I was fine until my secondary school years & im not sure what happened but I woke up one day and I never got better. 😢

Doctors need to understand that I’ve spent so much of my young life suffering in silence. To be heard is a miracle.

Communication is key for me, & to be labelled miss understood & complex has caused extensive problems health wise, I waited for them, and as a result I’m in the position I’m in because of them.

I tried to eat well, exercise, I carried the weight of the world on my once young shoulders, I existed in a hostile environment, tried my best to bring my son up on my own, dealt with more health problems, I was told by GP I had post natal depression & my stomach issues were anxiety. It turned out I had rotten retained products & was admitted to hospital for surgery. My menstrual cycle almost after was a complete nightmare, I became anaemic as I would have 2 P* a month so I was basically bleeding all the time. My GP ran some tests after months of visiting his office, looking at feeling like I was dying to find out I had severe endometritis.

So yes I have been fobbed off for a long time. Paying private was the best thing my dad & partner could of done. That got the ball rolling in my labyrinth, thanks to them a few walls have been knocked down & the maze doesn’t seem as intimidating anymore. I can see many paths in front of me now, I’m clueless as to which path to take, I’m not carrying so much baggage now & Thanks to my long awaited diagnosis I finally have a safe place to land.

Hopefully the next path of auto immune will be as refreshing as the yellow brick road..

Yes I’m hyper mobile in all joints. I was diagnosed with benign hyper-mobility syndrome back in 2007 Beighton scale 9/9.

No tests apart from flexing my fingers thumb wrists arms knees into strange positions. I can twist my forearms round the wrong way. I’ve always said I’ve been born back to front. I suffer badly with subluxation in my right knee cap & hip. Years of pain & no relief. I was admitted quite a few times in regards to my hip which pops & cracks. IM LIKE A RICE CRISPY I SNAP CRACKLE & POP 🤪.

As you can see I have many complexities & no one to help me.. diagnosing hyper-mobility syndrome was a complete flop.. and a bad assumption as I was told by a nurse it sounded like I had EDS type 3. I didn’t have enough medical evidence for genetic testing they said but I did I really really DID... & still do.. but I seem to be thrown aside like the rag doll that I am.. & picked up again when they see fit. My dentist thinks I have too much evidence & something has too be done. She’s seen my constant struggle, how my hip pops every time I go from sitting to standing, how unwell I’ve been for the last 2 years, she knows me better than my own Gp that I’ve been seeing since I was flipping born... so it proves I am complex but there are diseases & disorders out there just as complex as me.

I found i great Gastroenterologist & now I’m on the hunt for a great Rheumatologist. The ones I have seen had no idea how to talk to me or even begin to help me.. I was told I was the only one in the family who was hyper mobile, but I’ve recently found out that my late nan my dads mother was hyper mobile in her forearms only. I’m currently doing a family tree, with hereditary health conditions also. It’s mostly cancer on my mothers side & heart diseases on my dad side. I know I don’t fit in any categories as I feel like I’m adopted because I’m the only one suffering with such complexities, but I’m looking for a link..

I’m inbetween cheltenham General Hospital & Gloucester Royal x

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Thanks for this great reply...am so glad you’re here...i feel even more as if we have quite a lot in common...i’m hEDS + infant onset lupus + early onset PID with all the usual comorbidities...and all my life have been plagued by serious & unusual overlapping health issues inc emergencies, malignant cancer, sepsis etc etc....like you, have had to fight hard to get the health system to really help...but now it IS HELPING lots. Sadly, am unable to bear children though, because of 5 months daily inutero exposure to the notorious endocrine disrupting artificial oestrogen Diethylstilboesterol (DES) known as The Hidden Thalidomide because of the dreadful internal reproductive organ birth defects it causes to our foetuses before birth, and the rare gyn cancers in gives us as adults.. My consultants think this DES exposure + familial hDES & MCD (mast cell disorder) tipped me over into being diagnosed with lupus when i was a toddler

In case you or anyone else is curious about DES, here is what wiki has to say:

en.m.wikipedia.org/wiki/Die...

And here is a personal testimony from a French DES Daughter:

diethylstilbestrol.co.uk/de...

Am vvvv much looking forward to your updates

😘🍀😘🍀😘🍀

PS 😆 gastroenterologists have been recommending rice crispies diets to IBD patients for decades...i know because my early onset crohns husband was on rice crispies when we first met in the early 1980s...he was busy having major surgery (bowel resctions) and struggling to eat anything much at all for decades while on daily steroids. Happily he is now in remission...but totally avoids veg/fruit/whole grain fibre due to intestinal strictures, so my inflammatory bowel illness diet is not a surprise to either of us

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I’m sorry about my genuine but revealing reply . I was hesitant to send it after reading it back, I know it exposes many personal issues about myself but I wanted to able to explain my continuous struggle from a real prospective.

Yes it’s great to be understood, I’m still not good when it comes to understanding all these medical terms & descriptions but I’m getting there. I’m 31 now & this forum & all the beautiful people within it has helped me become this new shade of me. I’m hoping that I can find a way to overcome my GPs neglect, & persevere with getting the help that I need.

I’m sorry to hear that coco, I really am. I have no words.

I will research DES, I’ve never heard of it, but that’s the same with SLE until I had tests for it. It’s confusing because on my ESA sick note it says investigations for vasculitis & Lupus weight loss & pain?????? Ummm huh! Investigations have come to a halt... what the hell ! I’m Totally shook... ACTIONS speak louder than WORDS!

They may have it written on paper, but the fact is they’ve not followed it through. I haven’t seen a Rheumatologist since February 2016?! I’ve been waiting & waiting... no cardiology but they think it’s ok to act like their doing all they can to help me on paper?! When I’m the one ringing up, going in, to be thrown out the door like a basket case. So confusing..

I’m so glad that you now have all the answers & concrete diagnosis’s. I hope when I turn umm at least 40 my battle will be over! That scares me that I’ve spent what seems like forever unwell but I’m 31 now & still waiting to be heard in regards to Auto immune crisis.

I know it takes years to be diagnosed but surely you shouldn’t have to waste your entire life suffering to get an answer. I hope to start living again soon as I’m only existing right now. I read many peoples post on here & other forums & it’s taken them years to get to where they are today but for some it’s been a walk in the park & just getting seen first & sorted whilst others like u & myself seem to get the short end of the stick,

I’m getting somewhere finally with the GI sides of things but the AI has taken its toll on my entire body.. I’m just so god dam tired.. sorry I’m rambling again..

Anyway i have a tick list

Surgery this upcoming Monday

Colonoscopy (date to be arranged)

Cardiology appointment (no clue when) (last appointment was this time last year.. Gp has said referrals been sent same with Rheumatology but I never hear back) even with persistent reminders)

One by one I will find out what’s wrong with me.

X

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Thank you for another beautiful, moving, deeply thoughful reply. You’re a 🎁 Gift to the 🧐 experts investigating you...because you are so self aware, experienced, organised and good at communicating. I cannot wait till you’re seen by rheumatology: Go Girl Go! It’s GRRREAT you have the support of loving family and friends! I think we’ll see you winning this battle way before you’re 40🍀🍀🍀🍀🍀

Yes, my feeling is that you’re turning a big corner and heading into the home straight right now...in my 7 years here on forum we’ve witnessed this wonderful thing happening to one or another of us again & again...you & I are here amongst many others whose disease process began way back in early life....they’ve had to find their way through the diagnostic wilderness for many years, often decades (i was there for 40+ years because my infancy lupus diagnosis got lost when i moved to the UK at 21 (long story)...i didn’t even begin to win my version of this battle until my mid 50s...and i’m still fighting skirmishes now in my 60s, eg in gastroenterology clinic 😏

It seems, though, that the science of immunology is now Super Fashionable...and Immunologists are getting a lot more attention from everyone....which means rheumatology experts in autoimmune illnesses are having to Raise Their Game in order to hold on to primacy as Leaders in the diagnosis & treatment of immune dysfunction conditions like lupus, sjogrens, scleroderma, vasculitis etc etc. Meanwhile research into the Hypermobility Spectrum is suddenly leaping ahead, with the publishing of the 2017 International Classification of the Ehlers Danlos Syndromes. All these thrilling advances in the science of immune dysfunction & connective tissue disorders mean your generation of patients, and all that follow will HOPEFULLY 🤞🤞🤞🤞 experience convincing diagnosis & more effective treatment faster than previous generations like mine

Sending you Lots of Love, Laura 💐🌈🕊😘

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Love every point you make on that last paragraph and welcome all of it. So relavent to some of us. Hurray, things do appears to be moving on in autoimmune issues, plus all the complexity of these other conditions mixing up the presentation. Bring on the immunologists I say. Also have much respect fro those specialists/patients who think outside the box, where would many of us be without them. Wish I could see where we will be in a few decades time. Thank you for posting Laura and Dear Coco, xx

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YES 😄, Well Said dear lou 😍👍✌️🤞🍀💐

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hey hun, yes I agree coco's replies are always brilliant. your most welcome louise-a xx

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Wishing you all the best and very glad you are getting some answers . Quite a journey, Lou x

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Thank you Louise-a

Sending lots of love & luck your way as well.

X💜💙❤️💛💚🧡

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this reply means so much to me!! the first bit bought a tear to my eye. a HAPPY one.

I love the way you word it! has such a impact on me, I guess were all living in our own Cinderella story, all hoping for our fairy godmother to wave her magic wand and make us all better, I wouldn't mind if it was only until midnight at least I would experience a little freedom from my slavery of illness for a few hours. We all can dream!! I'm slowly making entrance and one day I will go to the ball!

if I can get the answers before 40 that will be a dream come true. I've given myself a target 13 months time I will have all the answers & pieces to my puzzle. by thinking that way I wont feel so consumed by it all. positive thinking.

I've looked at sjogrens, scleroderma symptoms are quite similar to mine. I've been struggling with extreme dryness in my mouth, to the point where my tongue gets stuck up in the roof of my mouth. even drinking fluid doesn't give me the moisture I need. its new to me, plus my eyes water like crazy, the pharmacist said I had dry eye?? but I said being dappy " how can that be when my eyes are dripping wet"

I'm wondering what other tests I might need to confirm lupus? it seems I'm in the category of lupus and vasculitis but blood tests alone are not enough. a star rheum is needed, I was looking at Dr Cruz ive seen others speak highly of him, I'm looking out of my county now for a good specialist as I know I'm not going to find a good one in my hometown.

this forum has helped me beyond belief I would be lost without it, everyone is so supportive and understanding and I have learnt so much from you and others its gold dust. I trust peoples knowledge on here more than I do my own family friends and medical professionals. I'm in awe.

I'm normally really reserved and quite I have never opened up before like I have done on here. your right it is like a big family.

its wonderful to be apart of something special. xxx

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😍 Another WONDERFUL reply ...thank you laura! Maybe you’ll write a book about your experiences of all this...i really think you’d write a 🤩 beauty...i feel certain your story would help A LOT of others.

I love you’re setting targets: GRRRRREAT tactic! 👍🤞💪✌️🌈🕊

Re other tests & differential diagnosis/overlapping conditions, i think this current discussion here can help you get your head around these (it was this gastro post of yours + this amazing discussion which inspired me to post this diagnostic criteria chart & the link to the uptodate website document on SLE diagnosis & differential diagnosis):

healthunlocked.com/lupusuk/...

My primaries seem to be hEDS, infant onset Lupus & Primary Immunodeficiency, my secondaries include Sjogrens, some systemic sclerosus (my Raynauds was childhood onset), small vessel vasculitis & who knows what else...the list keeps growing as the years pass and my current nhs team discover more about what makes me tick. many of us find the treatment process very revealing...as you are already

Seems to me there is an important missing piece of the diagnostic jigsaw puzzle in the differential diagnosis bit of that uptodate website document: hypermobility spectrum illness! My feeling is that these connective tissue disorders overlap too often with autoimmune diseases not to be relevant...and when we read the official 2017 update of hEDS diagnostic criteria etc we find autoimmune conditions mentioned re differential diagnosis. I predict this curious situation will be clarified within the next 10 years...and the cases of patients like you, me & others here will help science/research move this clarification forward 🔮😉

For sure, i’d never have been as successful at meeting the targets i’ve set myself while making my way through the diagnosis & treatment process over the past 7 years without everyone here on our 🌟🌟🌟🌟🌟wonderful forum...and now this includes you! Thanks very much laura! 😘🍀😘🍀😘

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Hi there Laura - so glad you’ve at last got a name to stick on your pain. I can relate to all you describe. In fact my husband is a very keen foodie and my inability to cope with swallowing or digesting many of his favourite foods causes us a lot of arguments. I’m not as bad as you and don’t manage to lose weight because I do eat everything he cooks but very slowly with much water sipped between each small mouthful.

I too found myself finally referred to a gastro by rheumatologist who thinks my problem is caused by autonomic dysfunction/ dysmotility.

My gastro consultant was a kind and thinking man who apologised for all my GI struggles to date, put me down for a gastric swallow which I had last week (think it was normal) and has prescribed a fairly new drug used for severe IBS-c and slow transit issues like mine. It is called Constella (Linaclotide) and it has literally been a game changer for me. No more pain or bloating caused by huge quantities of laxatives, relatively normal motility and peace at last from gastric pain. I see him again this Thursday and hope he will allow me to continue on it as it can only be issued by a gastro and my GPs hadn’t heard of it! I honestly feel tempted to give this man a huge hug but will settle for giving him a big grateful grin and telling him he’s changed my life for the better! X

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Wonderful reply twitchy! It’s GRRRRREAT you’re responding really well to these treatments! Am going to be talking about both linaclotide and alverine soon this month when we discuss adjusting my daily oral combined treatment plan to help damp down my lifelong progressively debilitating autoimmune related GI dysmotility manifestations 😘🍀😘🍀

This official NICE linaclotide info is vvvv interesting:

nice.org.uk/advice/esnm16/c...

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hey twitchytoes,

I'm sorry for your suffering, I think the chilli was the cherry on top. I think this dsymotility has been going on for a long time. I think that meal pushed me over the edge! yes not being able to really stomach what your husband/partner cooks can cause that awkwardness and silent treatment. I laugh now, I'm not who I used to be, and I'm little more fragile and not so fierce as I once was, I used to be a chilli con carne lover not too much spice just enough for a little kick and now I'm a nun to all food apart from mash! I cook all the time now and I've made it clear I don't want any more surprises lol !!

I'm SO HAPPY to hear your gastro consultant showed empathy and I'm also glad to hear you've got what sounds like a dream drug that suits you and helps. ill do some research on it. I hope he lets you stay on it cuz if its working seems like the right thing to keep you on it for longer.

its a fantastic feeling when you've been truly helped and cared for, I know I wanted to give my gastro a hug, this will make you chuckle, before saying goodbye, my dad had mentioned about my hair loss, mind you my consultant is a comedian at times he genuinely wants to make me laugh and smile which is so alien to me, anyway he asked if I had seen my gp about it I said yes Dr Plonk mentioned a referral to a trichologist but never followed through right he said rolling his eyes, they are very reluctant to help..plonk I like that laura

I bought out a bag of hair and as he's bold he says " are you trying to tell me something miss keylock, took the bag of hair from my hand and pulled it out and put it on his head.. is that better ! I laughed so hard I nearly pee'd. he's unique! Its nice to be nice.

please let me know how you get on a your app, I hope they keep you on that medication, ill do some research. takecare twitchy xoxo

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Hi Laura,

Auto immune disease can cause dysmotility as well as the inflamation can cause problems with the nerves in the bowel.

mayoclinic.org/medical-prof...

Personally I think the Scotch bonnet chilli explanation is a bit suspect!

Before going on Infliximab I had severe, post prandial abdominal pain. It made me afraid to eat and I lost a significant amount of weight.

Since getting my underlying auto immune condition better controlled the abdominal pain has very much subsided although I still can't eat as much as I used to be able to pre illness.

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Well Said, Keyes...and am glad you include this great official mayo clinic link. 4 years on from the publication of the info about autoimmune gastrointestinal dysmotility (AGID) discussed in this link, i just wish the mayo clinic would give us an official update on how this research is progressing

My case supports the propositions in this link and is similar to yours, in that before going on daily mycophenolate and prednisolone in my early 50s, my lifetime of abdominal visceral slow transit dysmotility & hyperreactivity pain had been more severe for many decades...after a few years we’ve had to double my daily dose of prednisolone, + add daily methylcellulose and antibiotics and greater dietary exclusions due to the relentlessly progressive character of the autoinflammatory process which consistently accompanies my progressive GI mouth to a**s debilitation.

I see the head of my rheumatology lupus service in a fortnight to discuss increasing my daily mycophenolate dose. So, both you and i have gastrointestinal manifestations which respond positively to our immunosuppression meds. 😘🍀

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Interesting because my current slow transit problems only started when I finally tapered off steroids after 7 months. I had blamed the untreated drinking water supply in our rented home but this has me wondering. I see my gastro again tomorrow so very timely. Thanks!

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EXACTLY!!!!

Please let us know what your gastro says!

Have you seen what NICE is officially posting about linaclotide?

nice.org.uk/advice/esnm16/c...

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Ohh this is useful Coco - thanks! Only prob is I have to dash as got MMF bloods in an hour followed by hubby’s job interview followed by OT in hospital so no time to read it properly. Is the gist good or bad for Linaclotide and dysmotility do you think? Maybe he will conclude I do have IBS-c otherwise? I’m not bothered but hope it’s not contributing negatively to other stuff such as swings in BP, OH and dizziness - all of which are pretty bad.

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Linaclotide gets a good NICE review! My feeling is that linaclotide “could” become a steroid sparing treatment for those of us whose GI tract manifestations are already benefitting from daily mycophenolate and prednisolone...ie when our cases need increasing dosage of immunosuppression meds in order to manage our progressively debilitating slow transit dysmotility.

Even if your gastro stubbornly refuses to acknowledge the significance of pred consistently damping down your slow transit dysmotility-related pain etc ....my feeling is that he/she really needs to agree that your gastro issue are best described as only IBSC-like because autoinflammation is clearly involved, and IBS is not inflammatory bowel disease.

As my grizzled gastro said last year: IBS is driving us gastroenterologist to despair: we need a new official IBS review in which the NHS differentiates between IBS and the sort of chronic progressive inflammatory mouth to a**s gastro tract patients like us are living with 🤷🏼‍♀️

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PS for what this is worth:

Re Prucalopride: i’ve read everything NICE & NHS Choices say, and my amateur impression is that there is possibly a reluctance to resort to prucaloppride for IBSC-like cases..more reluctance than re linaclotide...the 2 do seem to function differently. Prucalopride is used for full on laxative-refractory chronic “obstipation”, here is the NICE link:

nice.org.uk/guidance/ta211

My impression is that linaclotide is prescribed for IBSC-like cases where chronic conditions of the upper GI tract are relatively cooperative with long term management (Eg my dysphagea + oesophagitis + gastritis + gastroparesis) but i’m no expert! my chronic dysautonomia makes consultants ultra careful which meds they prescribe, so am not sure whether either linaclotide or prucalopride are appropriate for me

Re Colon transit studies: the first gastro who saw me ordered a CTS along with endoscopies (gastroscopy + colonoscopy) and several standard lab tests via GP. then i saw the colorectal chief who point blank said: we don’t need to bother with CTS in your case because we KNOW beyond any doubt that you have chronic slow transit dysmotility (my upper GI + ileocecal join + pronounced sigmoid colon loop + rectum are especially troubled). The effectiveness of the treatments he prescribed into my multidiscipline combined therapy daily treatment has pretty much proven his assessment’s accuracy...and my colon pseudo obstruction-like signs & symptoms are now so stubborn that they increase when i taper down even only as far as 8.5mg pred

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I have to say that although I already had orthostatic hypotension and other autonomic features I have noticed some extra tachycardia since starting the Constella - but this may be due to the cold virus and other stresses and much anxiety.

Also today I learnt the very hard way why it’s important to follow instructions on my prescription sticker and wait 30 to 60 minutes after taking the capsule before eating anything. Never again will I deviate from this instruction!

I see the gastro again tomorrow morning so plan to mention the fact that I have some renal involvement - which it says can complicate things with Linaclotide. Xx

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Thinking of you even more than usual today: good luck 😘🍀😘🍀😘🍀

PS thanks for making this point re following tab instructions (OMG: what happened due to your deviation?!)

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Ugh - it was highly embarrassing and awkward as I was on my own on beach with one of the dogs waiting for my hubby to be interviewed. Ended up in toilets of a beach cafe with torch as lights timed out - no spares pants or pads as I usually take with me as have become a tad complacent since starting Constella. Thank heavens it was quiet and was able to make good use of wet wipes, dog poo bags and my leggings, which were unscathed! So let’s just say I got a lot for my £2.50’s worth of pot of Earl Grey and I won’t go back there in a hurry! X

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URGH....Well Done...am vvvvv glad to know this before i start talking to consultants about constella....but am ready: have had experiences like that as my GI hyperreactivity has worsened... a particularly awful time un an airport loo “springs” to mind...😘🍀

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It was truly horrendous and then my hubby was a bit late out of his interview so I just had to drive myself straight to the hospital on the other side of town 30 mins away and queue for parking and walk as fast as I could to the OT department to get a resting splint made! I was 15 mins late but the lovely OT forgave me! X

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🤦🏼‍♀️...❤️ that 🌟 OT 😘🍀

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My slow transit improved dramtically when put onto steroids. If taper to low will re emerge quickly..xx

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Good you are getting somewhere - I have lived this way for 18 years now, no meals out or eating what others cook; only what I cook.

I can eat pinches of chilli, herbs etc. in my meals, but certainly not large amounts.

For some reason, I don't need large amounts for it to have a positive effect on my body and also give a good flavour to my food.

I now weigh 8stone approx. and from being 5stone 10lb when I started, it is certainly an improvement.

Keep us all posted on what you are doing and how it is going - positivity is the key issue.

You can do it!

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Am glad for you, Cann! We’ve got to get into a regime that keeps us as functional as poss.

Do your lupus immunosuppression meds help you manage your GI issues?

Am wondering, how tall are you?

At my worst i was 6.8 stone and 5ft 8.5in

😘🍀😘🍀

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I am 5ft 4in.

I don't take any drugs now as I can't.

My body just doesn't know what to do with them and they make me ill.

I was taking many drugs before becoming seriously ill in 2000 including iron tablets and aspirin for the anaemia and thrombocytosis. My liver was damaged and I had bleeding in my stools from the aspirin. I just use muscle testing taught to me by a knowledgeable kinesiologist to find out what I need. I use herbs and kelp for the thyroid problem, but only by testing for what and when.

Infections knock me off balance and I have to start all over again, but I know now roughly what to do to manage myself as I am scared doctors may kill me, as they almost did in 2000 by giving me antibiotics I should not have had with penicillin allergy and loads more drugs my body couldn't take.

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Wow! Well Done! You’ve been through a lot, you know your body extremely well, are very self aware and are succeeding in managing your health issues extremely successfully without prescription treatments...Brilliant!

I know what you mean: some medics have done their best to finish me off several times over the decades 😉 ...lucky for me, my current collection of medics is doing me proud - after a lifetime of conscientiously relying on complementary medicine, body work therapies and self help techniques while avoiding prescrip meds as much as poss, i now am in great need of the health care establishment & prescrip meds: just when they can & do really truly help me a lot 😘🍀

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If it works for you, that's great. There is a lot of good done in the health service, but also thousands die each year from the wrong treatment or trauma or something else. It is a lottery and we have to make a choice as we go as to what is right for us. I made some bad choices and my body had enough.

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Hi Laura

So pleased you have a diagnosis for your horrendous problems!. I'm sorry you have so much to cope with but glad your going to get the help and treatment you need from the MDT. At last your really getting somewhere with all your health problems!. That Gadtro is fantastic and glad he's going to chase Rheumy and Cardiology for you. Keep us posted and keep fighting and you'll get there. X

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