I have recently been diagnosed by my rheumatologist with HEDS . I have quite a few things going on , one is stomach problems.
I know EDS can affect the stomach.
For at least 2 years I've been having problems with going to the toilet, I put it down to pain medication and the huge amount of antibiotics I had after spine surgery and getting a sepsis infection.
I've tried probiotics, fibre gel , cosmacol and lactose but now the only thing to get anything moving is dulcolax and I have to take 3 at once as 2 doesn't work.
But then all I get is watery diarrhoea.
I can go a week or more with nothing until I take laxatives.
I paid to see a gastroenterologist about 6 weeks ago as the wait time was 24 weeks!
He has ordered a colonoscopy and ct scan which I've had but not the results yet.
He gave me prucalopride but this didnt work at all.
I now have linaclotide which has helped a bit but I'm still not going to the toilet much.
He mentioned its possibly a slow transit thing.
It feels like it's not moving through I'm bloated all the time and my appetite has gone and I only eat small amounts now so I'm not more uncomfortable.
I wake up with stomach pain and bloated which seems odd.
I'm not sure what else I can do I'd linaclotide doesn't work as I think that's what they use for slow transit bowel problems.
Any help would be appreciated.
Thank you
Written by
Megnstan
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It’s no picnic! I’ve had 65 years of this. Am v much feeling for you, megnstan
Although a lot of us, here & on my other support group forums, do share these probs, every case is a bit different. eg i too have early onset Spine conditions involved in my gastro issues...and my gastro issues are further complicated by my other 2 underlying infant onset immune dysfunction comorbidities, both are also connective tissue disorders like hEDS which cause progressive GI tract debilitation): SLE (systemic lupus erythematosus & the PID panhypogammaglobulinaemia (a CVID type of primary immunodeficiency).
You’ve spent a lot of time conscientiously trialling everything the nhs usually asks us to try. And i am sure you’re good at self help + lifestyle management. I conscientiously trialled everything too: NHS stuff + self help etc. did too...of course this takes months/years. And we know when something is having positive effects.
More or less like you, my reactions to all this sort of stuff were negative. But, as we all do, i concentrated in doing. my best to keep going. Now my consultants & co all say the good lifestyle techniques have probably prevented my version of this from being worse than it is...but they just manage symptoms : cannot address the underlying causes & fix them
Several years ago, in desperation at nhs gastroenterology delays, i finally saw a top colorectal surgeon (a colorectal chief at my univ hospital...who had performed my early onset crohns husband’s last bowel resection v effectively). He is a v good listener & quick thinker: he immediately seemed to recognised the patterns, ie that my hEDS hyperreactivity to food residue (aka fibre of any type) had become severe and that i needed:
-to be taken into care by nhs specialist gastro dieticians (i had already been referred so was awaiting my first appt...lucky for me i got a brill dietician who agreed with this chief and is still taking great care of me)
- UlTRA low fibre diet (the type NHS has us eat directly before endoscopies, eg colonoscopy)
- the MOST ultra low fibre laxative treatment combined with an ULTRA mild stimulant (long term daily methylcellulose (Celevac) combined occasionally with tiny amounts of nightly Ortis Cube)
- referral to nhs specialist bio feedback & bowel retraining clinic (the dietician referred me & the specialist nurse there has been a wonder help)
- to remain in care with the gastro dept longterm for what amounts to chronic early onset CTD+AID+PID slow transit + visceral hyperreactivity + malabsorption related intestinal pseudo obstruction + enteric neuropathy segueing into my small intestine becoming unable to digest food of any sort.
The good news is all this has helped & still helps my GI tract to be less symptomatic & more functional...ie i have less pain, bloating etc, the malabsorption & hyperreactivity are less etc etc. But the tough news is that although gastroenterology’s daily longterm methylcellulose Celevac etc is still my life-saver in terms of managing the obstipation + preventing hyprreactions, i am now totally off food by mouth and long term on gastroenterology’s prescription Elemental EEN (Elemental Exclusive Enteral Nutrition aka predisgested amino acid drinks are my sole source of nutrition...this is not a Sip Feed like Complan .& Ensure etc which do need digesting)....i’ve been on Elemental EEN for over 1 1/2 years...and the signs point at my never being able to tolerate &/or digest food again). My nhs multidiscipline team & i aim to keep me functional enough to avoid eventually having to go on parenteral nutrition.
So, i hope something in this long detailed reply is useful to you &/or to anyone reading this...apologies for going on & on, but this subject is v close to my heart & i wish i’d known more about it sooner...of course now we CAN know more about hEDS gastro issues thanks to this wonderful forum + the invaluable cutting edge info EDS UK supplies us its website, support of research, publications etc etc
🍀❤️🍀❤️🍀❤️ Coco
PS For what it’s worth, some more background:
so, yes, i’m 65...and my version of mouth to anus slow transit dysmotility + progressive debilitation & hyperreactivity started in toddler-hood and resulted in all the usual upper GI probs (oral inflammation + ulceration, pre-barrets esophagitis, SIBO gastritis, gastroparesis etc) & lower GI slow transit dysmotility constipation which inflicted teen onset bleeding, prolapsing strangulated piles in me (diagnosed early in the 1970s, but my GP told me this was normal (now i know: NOT SO for general population, but more likely in us)).
I was so fatalistic & naive about all this including the nightmare piles that i focused on self help (high fibre Low FODMAP-type exclusion diet) + physio etc. Which could only help so much, ie couldn’t treat the underlying causal comrbidities, so couldn’t slow progressive debilitation. In my v early 30s the NHS gave me an urgent full-on haemorrhoidectimy, which helped, but also handicapped my ano-rectal function enough to create more but different probs, further complicated by my spinal degeneration
Meanwhile from my early 20s onward, my upper GI conditions began to be investigated, diagnosed & taken into treatment buy gastroenterology. And my spine conditions were being managed via self help inc body therapies (Alexander technique, physio, orthotic spine braces etc etc) and eventually a series of nhs pain consultant procedures (bilateral cervical & lumbar facet joint denervations + IMS (specialist deep dry needling). For certain my spine probs aggravate my GI tract issues & vice versa
Thank you for replying you have been through so much.
I havent had a follow up yet from the gastroenterologist as I need to wait for the results of the biopsies they took during the colonoscopy.
The nurse that did it said my bowel all looks fine but she couldnt get into the small bowel as the loops were too tight? But she did manage to get biopsies from it which I think is what the consultant wanted.
I have an appointment to see him in a few weeks.
I'm not sure if it was the spinal surgeries I had that caused this or the years of pain medication or the spinal sepsis infection and months of strong iv antibiotics or it's to do with HEDS or all of the above maybe?
I hope he has some suggestions when I see him, he did mention going to Southampton for slow transit tests maybe.
I waiting for a date for a spinal fusion which should be soon but you never can tell with the NHS.
You’re very welcome, Mandy. You’ve been through a lot too & your acknowledgement means a lot to me.. thanks for giving me a chance to review my version of this: as time goes by, i learn more & more from listening to my bod, discussing this here & on other forums, reading support group lit etc, discussing with clinicians...and, as my understanding grows, putting these things into my own words helps me come to terms with it all + see my way forward. I sense you feel pretty much the same.
Sounds like you’re with a good gastro dept which is taking you seriously & being communicative + proactive about investigations. This is really good!
If i’ve learned anything over the decades, it’s that almost nothing in life has one cause. So i look at the causes underlying all my health issues, including the GI tract stuff, as pie charts, eg each cause of my gastro stuff is a different size pie wedge...for me the biggest wedges are occupied by my primary illnesses: hEDS, SLE & PID (including the chronic mulstisystem sepsis PID has given me, and all the antibiotics i always need etc) ....Any possible side effects of my spine surgeries & meds etc occupy a smaller wedge.... And so on. I’ve needed every treatment, inc every surgery i’ve had. And, just as with the meds i take, i try to accept that no treatment can fix anything totally & no treatment is without side effects. It is what it is
Hang on in there: if you’re like me, once these secondary level investigations are done (colonoscopy, gastroscopy, colon transit testing etc), they may need to move on to tertiary small intestine investigations (video capsule endoscopy (VCR - you swallow smart camera to look inside the small intestine) , MRE (MRI of small intestine) etc)).
The verdict on my bowels/guts (colon + small intestine) Is that they ‘look fine’ too, aside from excessively long lax stretches & tight looping corners & the way they inflame so painfully ballooning my abdomen during bad phases (aka bloating) etc....but investigations have also proven my small & large intestine function & degree of sensitivity are not ‘fine’ at all..eg
- the transit throughout my GI tract is so severely slow that my intestines met the official criteria for having ‘retained’ my VCR capsule
- gastro nutrition & dietetics food type reintroduction protocols ALL fail
- every gastro investigation i’m put through gives me severe hyperreactions, needing months of recovery (and even then my bowels never are quite as function as they were before hand,...which is why gastroenterology & i have agreed to give me a break before further investigations)
As i understand it, the small intestinal part of the GI tract is simply not as well understood by science as the upper GI tract & the large intestine (colon etc to anus). But examining & investigating our small intestine is key to understanding our particular types of probs. My impression is that biopsies of the small intestine itself are performed by specialist consultants under highly advanced OR conditions. I wonder if the part of your small intestine the endoscopy tech/nurse tried to biopsy could’ve been the duodenum? Eg: as in this link
I love the pie chart idea and yes I definitely think lots of things have contributed to where I am now.
It's a lot to come to terms with and I'm still trying to accept that I'm never going to be the same as I was 6 years ago.
The report the endoscopic nurse gave me after said they were not able to incubate the caecum due to constant sigmoid looping.
I'll find out what that means in a few weeks. They did a contrast ct scan as well so I'll find out about that too.
You only have nutritional drinks no food at all?
That must be very hard.
Did you have surgery on your spine ?
Did that make things worse stomach wise for you after?
I have bladder and bowel prolapse that need fixing at some point but that's on hold at the moment.
I had a hysterectomy to fix a uterus prolapse a couple of years ago just before my spine surgery and they did my bladder then but it's just fallen back down again.
Thank you again for your helpful reply it's really good to hear from others who understand
Just my thoughts, I have suffered from slow transit and spent a huge number of years suffering from this it is so unpleasant, I had it when I was a child and in my 20's was told I had issues with slowly transiting my poop.
I must have been lucky improving the situation with diet and supplements because before this I was taking laxatives. I removed all refined carbohydrates, I found eating bread, pasta, rice, potatoes, unless mashed potatoes, all contributed to my not going to the toilet, I was also told they contributed to inflammatory too. I stopped eating anything made or containing flour. I also started eating more daily probiotics in the form of supplements, started making my own yogurt and milk kefir, freshly ground flax seed, in addition I started taking liquorice root before bed with water, although stopped this when I read I should not be having continuously, I introduced magnesium into my diet and was happy these made me feel much better and assisted me in going to the toilet, I reduced them recently from 2 tablets a night to 1 and I am still happy. If I stray from my diet and eat refined carbohydrates I am back to slow transit poops again.
Really hope you can get some relief and answers soon.
Glad you like the pie chart idea ☺️ It works for me every time. I think it’s especially good generally in complex 🦓 cases
Yes, my nutrients come solely from Elemental diet on Exclusive Enteral Nutrition (EEN) because my small intestines can no longer digest food. Because Elemental EEN consists of nothing but predigested amino acids, i get the nutrition i’ve been increasingly lacking as i segued from a lifetime of intestinal insufficiency into intestinal failure (this s a spectrum, like any type of organ failure). I am lucky that my upper GI is functional enough to mean i can take my EEN orally by swallowing - some hEDS patients have to take EEN by nasogastric tube. My job now is to stay this functional!
Elemental EEN is so specialist that i needed time to grasp that Elemental EEN is not the same as Sip Feed nutritional drinks aka nutritional supplements eg Complan, Ensure etc. Sip Feeds nutritional drinks are digested by the small intestine
Although i do miss food, i do not miss the terrible worsening symptoms food has been giving me for decades - especially the obstipation & the hyper-reactive diarrhoea. All these symptoms are so well damped down on Elemental EEN that i am feeling better now than i have in MANY years
Am v sorry about your prolapse falling again - that’s no picnic. An op like that followed by spine surgery must’ve been a lot to re over from! The L4/5 posterior instrumented fusion + foraminotomy i had in June seems to have gone ok, but, as you know, recovery takes many months in older 🦓 patients like me, so am not drawing any conclusions.
What didn’t go well, especially for my lower GI tract, was the post op recovery on neurosurgery ward ....because continuing IV fentanyl via pump for 24 hours gave me opioid obstipation with projectile vomiting they misinterpreted as anaesthetic nausea and they reacted by giving me antinausea meds that make slow transit worse + they left me without any pain meds & no hydration...when i’m guessing IV paracetamol + saline fould’ve prevented all that pain & bowel obstruction. But what do i know.
So, on ward after the spine op, it was a bit of a shambles...all that despite intensive liaison between my gastro + immunology + rheumatology clinicians & the specialist neurosurgery nurse (who unfortunately went on holiday the day of my op). Anyway, nearly 3 months of post op coaxing, my GI tract has nearly calmed down again, yaaay!
Anyway, hope you’ve had a pleasant BHW. It’s been good to meet you 💐🍀❤️
PS this is a good official explanation of Elemental EEN:
“The special liquid diets are sometimes referred to as ‘enteral feeds’ or the process as ‘exclusive enteral nutrition (EEN)’. They can be divided into three different types: elemental diets, semi-elemental diets, polymeric diets. The difference depends on the size of the protein molecules and how broken down the protein is. The building blocks which make up proteins are amino acids so an elemental feed has the protein completely broken down into individual amino acids. Semi- elemental feeds will contain short chains of amino acids, while a polymeric feed has whole proteins where none of the protein has been broken down into its smaller constituents.”
It comes from this website, which i’ve found quite useful over the past few years of Gastroenterology investigations because they suspected i had crohns disease and were trying me first on short term crohns Elemental EEN protocols:
I am so sorry you are suffering. I have EDS and my gastroparesis (slow transit) is definitely related. I am thin and 71 years old and the boating made me look pregnant. I am in the states so I do not know if you have Miralax. I use it daily and it helps me with constipation. I eat smaller meals and follow a low fiber diet. I do not understand why your doctor did not order an endoscopy. Also, there are two helpful diagnostic tests. One is nuclear and you eat a small meal and transit time is determined. Another is a bacteria overgrowth test. If you have bacteria overgrowth specific antibiotics are given. Both helped me determine what was causing my bloating and nausea. I also take Omeprazole in the morning. Of course, drinking fluids throughout the day help. I think some oil in your diet helps lubricate you to be more regular. I see a nutritionist regularly.
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