After four years of problems with my stomach and oesophagus, the bowels are now getting as bad. I have periods of difficult and painful constipation, then periods of explosive diarrhea ( mostly at night, and many an "accident" ) Having to get up twice in the night to clear up the mess, shower myself off and get the washing machine on, is not fun in this cold weather
I saw my GP about this recently, and so far we've decided on trying the dietition again, while I keep a food diary. So far, I've spotted my bowels don't like nuts. He's not keen on a colonoscopy as yet because the preparation for it would be rather weakening.
I'm now pretty certain of the kind of food which gets stuck and won't get into my stomach. Meat is a definite. Those episodes leave me unable to do more than sip tea while everything stuck comes back and it takes about 24 hrs. This didn't use to be painful, but is becoming so.
I'm also becoming food phobic to an extent. I've no great appetite but get cravings which I'm often too nervous to act on. I do know what to avoid to prevent acid reflux, and take four omeprazole a day to dampen that.
My cousin, who is 11 years older, is now being investigated for Crohn's, which can start at any age apparently.
Have to just plough on and dream of jam roly poly and custard!
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Lupiknits
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Just an uber quickie - I'm a tad gothic and extremely subjective on this topic so please disregard advice if it doesn't sound right - But SLE can effect the digestive system. If you find protein and fats difficult - then get to a Gastroenterologist with an interest in Lupus. I recently had an 'panrceatic Elas' (Australian pathology) - ie: rather expensive poo test done and found I'm not secreting enough digestive emzyme.
As much as I'd enjoy it - I won't go into too much gruesome detail but it took quite a few samples before I 'achieved' a positive result for the insufficiency. Might have been a matter of timing ?
The Doctors here are working in reverse and have prescribed 'Creon' which is a digestive enzyme supplement - problem somewhat solved..... Getting some much needed nutrient to the brain at last - but they still have to figure out why this has happened.
I think its probably fall out from a nasty flare I had about 3 years ago where I had some extreme gut problems.
I dunno whether I'll ever find the precise answer to this one - I've heard of some Lupus people - if safe - just taking the odd low dose 'creon' to help with energy. Sometimes the damage to the digestive system is very supple.
Having said all this I'm not saying this is happening to you !
Just something to be vauguely aware of in your travels.
Am sending you MEGA sympathy & a basket full of gentle hugs...dose: minimum 3 per day 🤗
Freckle is expert on this...her reply is brilliant..it’s vital to check organ function...pancreas, liver, gall bladder, kidney etc etc
I can’t add much to the info i’ve shared already here in posts during the past 2 years of NHS multidiscipline investigations into the sudden severe onset persistent flare of my childhood onset mouth to a**s GI conditions.
But i’ll ask 1 question: are you hypermobile? Because my univ hosp gastroenterology dept is caring for a relatively high proportion of Hypermobility Spectrum Disorder patients with severe progressive versions of this sort of thing (i am now one of these patients) and has a specific team devoted to the more severe cases of this: the Feeding Issues Multidiscipline Team. And my research via official papers discussing the gastro manifestations of immune dysfunction & connective tissue disorders confirms that patients with SLE, SS, vasculitis, scleroderma etc are all prone long term to progressive gastro debilitation + dysfunction, (especially slow transit motility and hyperreactivity), often due mainly to the sort of muscle, blood vessel and nerve debilitation which isn’t visible via imaging and endoscopic procedures (gastroscopy, colonoscopy, signoidoscopy etc) + is vvvv seldom tested via biopsies. Others here on forum are actively testifying to this reality now too, eg our courageous Twitchytoes
Whether hypermobility is compounding your issues or not, my feeling is that it would be vvvv interesting to get your nhs dietician’s reaction as to when you’ll qualify for feeding issues multidiscipline attention....because your case has always been characterised by both dysmotility as well as hyperreactivity. And, it seems to me that your nutritional status is significantly threatened by this lonnnnnng struggle you’re having moving food efficiently through your GI tract. Eg in my case, i have 3 monthly bloods checked re nutritional status + BMI etc, and i’m in gastro clinic every 6 months because the nhs is so concerned...and i’m on SOS with Gastro clinic & my dietician. Plus i’ve got rheumatology + immunology + oral surgery + periodontics + colorectal + gyn oncology + dermatology + urology ALL helping ongoing with their aspects of my mouth to a**s issues. It’s taken decades & lots of determination...but, at 64 years old, i’m more convincingly diagnosed & getting the care i need
For what it’s worth: I think you deserve this sort of monitoring + a FIMDT approach to your case Right Now. You’ve been SO BRAVE for SO LONG about self help and conscientious life style management. It’s time for the health system to acknowledge the significance of your chronic signs, symptoms + chronic feeding issues and give you more significant support
You have my every sympathy, Lupik, it must dominate your day, every day. No wonder you get both phobic and cravings that you don't feel you can trust. I think one of the most invidious effects of our condition(s) is that they can undermine our trust in what our body is telling us.
If only we could survive by just thinking about food. Vegan bacon...chocolate eclairs....fish and chips....There. That's lunch done.
What a good job freckle and coco have something practical to say. Hugs x
You have my sympathies Lupiknits. There was a time I experienced symptoms similar to these. Not so much the constipation but the urgent, explosive diarrhoea.
I was diagnosed coeliac so am now on a strict gluten free diet. Also discovered I had mild lactose intolerance. I can eat chocolate and small amounts of cheese, ice cream etc. but not pure dairy like cows milk and yoghurt. I don’t tolerate fried food or caffeine either.
Since being on this diet for the past ten years my digestive system has been a lot better. I also take acidophilus, a digestive enzyme, with every meal. These are bought fairly cheaply on Amazon.
I hope that you find out what is causing your problems and get it sorted soon. Xx
Yes, Coco, I am hypermobile, but not to the Ehlers degree. It seems to run in the family, but I've only had a three dislocations, though they were not caused by the force that would normally result in one. I think I've just on the extra flexible range. When I had physio, the therapist said I was one of the bendiest patients she'd had.
You're very right about being malnourished, I'm sure. My BMI would qualify me for a psychiatric ED intervention. While I'm getting a bit phobic about food it isn't fear of gaining weight. My greatest fear is seeing myself nekkid ( not that anyone would relish that lol)
So far, all the advice is about eating three meals and snacks a day, and having a biscuit with every cuppa. Trying to get it into anyone's head that time was I'd happily do that but it's physically impossible now is very hard.
When I see the dietition I'm going to be very firm about having the brains to know how to gain weight! I'll also mention the hypermobility to see what reaction there is to that x
Had a feeling you’d mentioned being “bendy”.... there is a new officially approved guide covering Hypermobility Spectrum Disorder & hEDS with a Bang Up To Date chapter on GI mouth to a**s manifestations, investigations, care etc. Here is a link to info about this book in a discussion on the EDS UK HU forum....there are plenty of Hypermobility Spectrum Disorder patients on the EDS UK Forum too:
If you cope better via “understanding” like me, this can be v useful while getting what we need & deserve from the system. The other key: because we have AID/immune dysfunction as well as connective tissue disorder, our immunosuppression meds need to be considered part of our GI combined therapy treatment plan. All my multidiscipline team medics are acknowledging this FINALLY in my case HURRAH
hoping you’ll keep us posted...your way of looking at life always Cheers Me Up 🤩
😘🍀😘🍀😘🍀
PS hEDS has LOTS in common with Hypermobility Spectrum Disorder, so this paper is useful whatever:
I had this problem with one Doctor once. He insinuated I didn't have the intelligence or suitable calmness (god help me - I had an emotional pulse) to be able to recognize a basic physical symptom any four year old could interpret.
Hello not much to add to the previous posts but just wishing you all the very best and hope you get some answers soon. Best wishes lupiknits
I had a bit of a shock today regarding my Gastro problems was at that the doctors as I have shingles and noticed on the screen it said scleroderma of the intestines , that has never been mentioned to me by any Gastro consultant in the past so want to discuss it at my next appointment
My GP couldn't shed much light just said it was the result of my barium swallow and follow-through
😍 Hello dear ☀️...i hoped you’d join in LK’s discussion
Am v sorry you’re learning that gastroenterology investigations are finding more signs of scleroderma 😕...and i v much hope clinic sees you soon to shed more light on this. When is your next appt? I hope 🤞🤞🤞🤞you’re managing “ ok” in the meantime and that your GP is being supportive...am sending you much love & every best wish 💐
Am very interested the barium swallow & follow through is highlighting this (my early onset Crohns husband keeps insisting gastroenterology needs to give me a barium swallow...am planning to ask about this at my next clinic appt...hmmmm 🤔)
Lovely to hear from you 😊 And thank you for your kind words and support. My GP is thankfully as supportive as can be and is often guided by myself. Regarding yourself lovely coco most definitely ask gastroenterology for a barium swallow and follow-through well worth it my barium swallow and follow-through took five hours for it to pass through in the end they had to send me to go and have some food to help it to pass through and the radiographer did say it was probably to do with my connective-tissue disorder that it was getting stuck but obviously now this highlights something else. I was due to be seen in November but have still not received an appointment so will be calling today to find out what's going on. But please regarding yourself ask for one because it could shed some light on your condition I really hope you get some answers.
With having so many different overlapping conditions I always think it's hard to know exactly what causing all the Gastro problems Etc is it EDS hs ,is it sjorgrens lupus small cell vasulitis and now. Scleroderma
Lots of love very best wishes and good things and big healing hugs 🌻💐🌺😘🌻
😍 ☀️ your encouragement means a GREAT DEAL to me: Thank You 💐
👍👍👍👍My feeling is that you are 100% right: it IS hard to know exactly what is causing this 🤷🏼♀️...eg my 60+ years of self help & self observations over of my own mouth to a**s signs & symptoms + 30+ years of observing my husband’s Crohns + everything all my consultants & my husband’s have told us about this stuff + all my studies have convinced me you’re right. The underlying causes are as complex and mysterious as the causes underlying immune dysfunction & connective tissue disorders like SLE, SS, Sc, Crohns, MS, Diabetes type 1 etc etc.
BUT your story inspires me...you give me hope, dear ☀️...you help me to take some comfort from the fact that there are enough similarities between enough of our gastro manifestations to make SOME of the health system acknowledge that “enough” patients like us do suffer with progressive GI debilitations + dysfunctions, that we shouldn’t be fobbed off with the IBS label. These GI issues really ARE happening to significant proportions of us. Enough REALLY good True Detective medics are taking us seriously and trying their best to care for us conscientiously....even though all they can honestly say is that we do suffer from complex GI dysfunction due to comlex underlying causes 🌟🌟🌟🌟🌟
Thank you again...sending you LOTS of love and Festive Best Wishes 😘🍀😘🍀😘🍀
Omeprazole is one of the meds that can trigger colitis. A high dose (60mg) daily of lanzoprasole following an operation on my oesophagus set off collagenous colitis (actually probably started by leflunomide (Arava) and aggravated by the PPI. Over the years with SLE, it has more often than not been one med or another that has caused digestive issues. Maybe worth some research but good luck with the dietician.
So sorry your suffering so much digestive lay. It's important for this not to go on too long because you mustn't become foid phobic!.
Could I ask you when you get an episode of explosive diorrhea do you get other symptoms like mucus, pain, blood and achiness after!. If so then you could have IBD like me and it does need further investigation. I've had episodes at night exactly as you describe and it's horrible and debilitating!. I was diagnosed seven years ago thinking it was IBS as that's more common with lupus.
Hi, PPIs like omeprazole are only ever intended for short term use yet Drs put you on, sometimes for years.
Low stomach acid strangely can have same symptoms as high. As we get older especially our levels drop.
PPIs can cause a B12 deficiency.
I haven’t had the extremes as you but I’ve had the swinging between constipation and exploding (day time). I’ve also had my gallbladder removed.
I started on digestive enzymes, really liking Viridian’s Digestive Aid. I now take a herbal mix of bitters I mix for myself. Unless I overdo the chocolate and ice cream! my system is so much better, regular and a good form 😊
So important to get digestion right, where everything starts from. Gluten free for 3 months too and see if that helps. Should really be GF with AI conditions although I know it can be hard.
Thanks Bluedragon. I've tried periods of cutting down on, or cutting out, the omeprazole, only to have the reflux return at full strength. I neglected going to see a GP about the reflux for some months and ended up with ulcers along my oesophagus and in my stomach. My oesophagus is scarred as a result. A barium swallo demonstrated the stricture and slow transit.
You've prompted me to check again on the omeprazol info and the possible consequences of taking it long term. Not good. I feel in a rock and a hard place! Yet more to check on with the dietician and GP to see of another referral might be needed to gastro.
So sorry to see your struggles....I take one omezaprole a day and I buy gaviscon tablets to help with any acid reflux, they act quickly..I'd recommend them. Are you diagnosed with IBS????
No diagnosis of anything apart from oesophagitis, slow gastric transit and dysmotility. I do take Settlers from time to time. I went off Gaviscon after my last pregnancy, when I practically swigged it from the bottle! Should have realised second son was a whopper. Apart from short bouts of reflux which were definitely related to stress, I had no need for anything for 20yrs.
What bothers me most is when the food is going to, or become, "stuck" and can't get into my stomach, that's beginning to hurt quite a bit x
I was diagnosed with Coeliac disease. It's not uncommon for autoimmune diseases to overlap (I have SLE too). The initial test is a simple blood test, might be worth asking your doctor about. You have to be eating gluten regularly for the blood test to be accurate.
No, I have to be very careful of nuts, too. A recent Lupus writer states how good nuts are for us and I am sure they are nutritious, but unless we can digest them and absorb them, they are not much good to us. I read an article about nuts and inflammation including this one below and think it may be one reason:
Meat is not good with me either. I fancy a little now and again, but always suffer.
The doctors suspected Crohn's with me, but I would not have a sigmoidoscopy as I felt it could set everything off again and I was going through a good spell at the time. With autoimmune it can affect anywhere and I do my best to keep my body flare free by eating little and often of whole foods - not having too much of anything and eating only what I can chew well to a mushy state before it goes down - not easy, but it works most of the time.
Yes, good to imagine the foods you can't eat and imagine you are eating and enjoying them. I did that for a long time. When I was well I used to love cornflakes and milk before bed, but then I couldn't eat them, so I lie in bed imagining I was eating them before I went to sleep - it actually helped me!
What about soups - I make my own when I can and they go down easily. I use herbs that help digestion like dill, rosemary and marjoram.
Keep your chin up and keep smiling as the good endorphins produced help your health. The body doesn't seem to know it is a fake smile and still produces the endorphins!
Thank you C. I do make veggie soups which are good in this weather. I had some accidental success the other day by marinading some raw chicken in a mixture which was mostly Greek Yoghurt. Made it for my son, then tried a little and found it very soft and easy to eat a couple of chunks.
I have TMJ which makes chewing difficult (and chewing everything 30 times is a great way to lose weight because it's so boring!)
Most of the time I do the same as you - imagine eating! The one thing I really, really miss, and instantly sets off reflux is coffee. Mmmmm have to avoid the smell because it makes me drool. The other thing that sets off the reflux is my ex when he's on my low contact list, but can't get it into his head. Fortunately he does not make me drool 😂
I can totally relate to you! I have very similar experiences. The medical professionals I have spoken to about this have no idea what it is causing it. I paid to see a private consultant and he thinks It is probably spasms. When I am having a "loose episode" the pain is really bad and my whole body shakes, I bork and cough up bile. I can be stuck on the toilet for a couple of hours. It's a horrible experience and quite bizarre.
Mine are now linking it to systemic sclerosis. I've had tubes up one end and down the other. Very stupidly, when the extreme reflux started I put it down to stress and didn't see a GP for some time. They found ulcers through my oesophagus and into my stomach. The oesophagul scarring has made it very hard to get food down. I forgot to add I am hypermobile, too.
I opted for a sedative for the first endoscopy, but I'm sure they didn't give me any! A lot of people doze through the whole thing. My GP was afraid of something sinister,so eighteen attempts to take biopsies were made. I was told it couldn't possibly hurt. Yeah, right.
For the second ( I demanded a different hospital) I had no sedative, just the spray to numb the throat and it was far easier. By then the ulcers had cleared but the scarring was clear to see.
Up the other end was fine. The worst part was having to drink all the stuff to empty your bowels completely. The loo becomes your best friend for a time.
None of this is pleasant but it's best to find what the problem might be and get the help you need
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