Some time ago I bought some VSL#3 probiotics to see if it helped the gastric problems, and said I'd report back.
First of all, a period of having difficulty getting anything down meant I didn't take it ( that stuff is too expensive to waste). Now, I've got through the best part of a month's worth. Please note my problems are swallowing, only being able to eat small amounts of very soft food, and my stomach emptying very slowly. The previously drastic weight loss has slowed, and only problems with the bowels seem to be due to the Butrans patches and very seldom co codamol, which used to be sorted by yummy lactulose.
Used to be, because the, ermm ....regularity and efficeincy of the bowels are rather textbook superb. No lactulose for some time, and bear in mind the pain meds are very constipating. Is this a result of the VSL#3? Not a clue. In terms of the upper gastric problems, I can tolerate a wider range of soft food. Nothing acidic, coffee, or the teeniest bit spicy still. The best part of three years like this means I only have desperate cravings sometime and know it's not possible. I still need 2 omeprazole twice a day, but some progress.
Buy more? I'm going to wait and see. If I go backwards, I definitely will. It's very expensive, but my food bills are small.
Thus endeth my report. 😋
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Lupiknits
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Sounds positive as a pilot study to me - pleased you are taking this seriously and doing the crossover study part too (the double blind would be a pain). The bottom line is the usual caveat: more study needed...
YAYAY LK 👍👍👍👍 am vvvv glad things are going "pretty good"! ✌️✌️✌️✌️Many thanks for this update. 🥂
A few weeks ago I phoned VSL#3 headquarters and had a good chat with one of the medical advisers. She told me not to bother with their product as long as immunology has me on daily coamoxiclav. Which made me feel sad. But at least she was frank & forthright (she said I'd be throwing money away!)
On the other hand my NHS dietetics & nutrition clinic has me on their treatment plan for patients with my diagnoses (chronic oesophagitis + gastritis + gastroparesis + mixed constipation & diarrhoea) and it specifies plain Activia yogurt (100g per day). Apparently research has proven the strain of probiotic Activia contains (bifidobacterium lactis) is right for us! So am giving this a go now alongside ultra low fibre diet + methylcellulose + ortis cubes🤞🤞🤞🤞
Am vvvv much relating to your history of upper GI issues & how you manage them...it's enough like mine (all started up earlier than I can remember in childhood). No picnic. In 2003 my chronic upper GI stuff flared severely...gastroenterology put me on domperidone & oesomeprazole for 6 awful years which made my diarrhoea extra bad. What a life. Thank goodness that ended when I felt confident enough to manage with only diet & other lifestyle self help. But, as you know, for 18 months now my chronic lower GI stuff has been flaring severely...while my upper GI stuff has continued to cooperate with strict self help management....good old gastro tract swings & round abouts 🙄
Apologies for such a long reply...this stuff is so on my mind....
Am wishing you every best wish...am so glad you posted...am hoping you'll keep giving us news flashes
Thanks coco. Funnily enough plain Activia yoghurt is a desert island food for me. Love it! Now I can get kefir easily I rather like that, too. Interesting that, for me, the VSL has seemed to have given a bit of a perk, even though I'm an Activia girl 😋
The VSL people were good to say you'd be wasting your money x
It's all to do with the population of good bacteria - a lot of experts assert that yogs can't do anything to repopulate the gut as there simply aren't enough bacteria to beat the baddies. VSL#3 has a very large number - you'd need a LOT of yogs to get there!
In clinic on the 5th the dietician was emphasising that NOW 😉 researchers know which strains of probiotic are in which mass produced yogurts. So I'm "prescribed" Activia cause its strain of probiotic (bifidobacterium lactis) is right for my mixed constipation-diarrhoea type dysmotility. And the prescribed dose is: 100g daily! When I'm in clinic again in may, I'll ask which strains of probiotic are right for other types of dysmotility!
My long-time standard fav yogurt is Onken Natural Set, which is vvvv mild & not too liquid. Sorry to say I'm realising that my version of chronic upper GI stuff (dysphagia + oesophagitis + gastritis + gastroparesis) isn't very happy with Activia cause it's much more sour & liquid than my type of Onken....☹️ Oh Dear (for many years now I've had to limit & pace strictly how much liquid I take in how often...e.g. my upper GI can't cope with a bowl of soup at one sitting unless I sit there for 2 hours), well, we'll see what the dietician & gastroenterologist say...but I guess I could split this 100g Activia dose into several portions at different times of day...one more thing to figure out 😏...this never ends....
Yes: I was vvvvv impressed by the VSL medical adviser's integrity 🌟🌟🌟🌟
Hope you & yours have a lovely weekend...🍀😘🌷🍀😘🌷🍀😘🌷
What about making your own yog with the right cultures? My own fav yog is Total Greek full fat. I believe the difference is that Greek yogs are drained (must look it up again) which makes them far thicker - and you can do the same sort of thing at home to remove the whey.
😍 I do ❤️ it....don't you find that our kind of overwhelming multisystem stuff makes really simple things like THE type of yogurt you REALLY ❤️: EXTRA ESPECIALLY PRECIOUS & IMPORTANT 😂😂😂😂....I guess this is about: Comfort Food.....
That sounds promising Lupiknits, I've also started taking VSL#3 recently, I've started with half a sachet to let my gut get used to it and so far so good, I seem to have less bloating and less heartburn, I'm only taking one omeprazole as opposed to two and a ranitidine and gaviscon! It may just be coincidence I may just be going through a good spell with the heartburn, time will tell.
I've recently had endoscopies and was told I have diverticulitis and I'm just waiting for biopsy results and my fu appt.
The price does make me cringe but like you I can offset it against my food bill as I'm not eating anywhere as near as much as I used to, very very small plain meals and pretty much nothing in between.
I was taking OptiBac probiotics but they're not as strong and are full of fillers, I also tried Kefir, the ready made bottles are delicious 😋 but the wind was probably equivalent to a herd of cattle's in a day, I kid you not it was baaaaad! 😱🐂🐂🐂
I've started taking kefir too. I mix my VSL#3 into a glass of it. The first few times I had so much wind moving aroud it remimded me of being 8 months gone and an active baby in utero. Those rumbles passed though, and all is well 🌈 Edited to add my dog is scared of loud noises, so I had to let it out out of his hearing x
I have SLE, and I'd be really interested in whats caused your swallowing problems and gatroparesis.
I've been pushing for answers about my gastroparesis for about 9 months now. I've lost 12 kilo's thus far (lucky I was very fat and still have some to spare) - and yes - you do save on food bills ! Lots of nasty processed food/constipation. Iron and vitamin b supplements etc. It all seems horribly familiar.
I know all cases are different - even within the SLE spectrum but I'm struggling to get a clear & solid explanation from my Doctors - most of who'm I'd very very very much like to drown in a shallow puddle at this point..... so I'd be really interested in what you've learnt from yours.
Yes, the radio active breakfast ....scrummy 😱 The doctors have drawn a veil over what is or is not causing my upper gastric problems, which means they don't know. My auto immune problems appear to have started with sudden gastric reflux which I put down to stress and didn't see a GP for some months. Assuming stress was the cause of everything is something I've learned not to do now. I didn't see the GP until my weight started dropping very fast. Two endoscopies and a swallow later they were reasonably happy that it wasn't cancer, but it's clear that the muscles don't work in the way they should. I've had vague explanations about it be connected to other inflammatory problems, with positive blood tests. At the moment, any reflux is controlled by the omeprazole, so the ulcers have healed, but the weight problem continues, in that I can't gain any ( but I'm not losing any either). I've kept track of what foods might be triggering, but can't make any connections, apart from knowing very well what will not "go down" and what is a very bad idea for promoting acid reflux.
Just very glad that my bowels appear fine, and a good gurgle tells me food is getting through, a bit like a drain unblocking.
I swear......the scrambled egg whites they gave me to eat were glowing green.
: )
Yeah......I know what you mean - answers a bit scarce on the ground. I think with Lupus there's so many different ways it can effect the stomach that its hard to tell. With me they thought going off Prednisolone had depleted the adrenals - but this turned out not to be the case - so they're still thinking.
Mine started with reflux - and like you I didn't think anything of it. But eventually I began to flake out after eating the smallest amount of food. My GP told me to moniter my blood pressure. Turned out my BP drops and heart rate go's up after eating (too much) When I have an empty stomach - it go's the opposite way - high blood pressure, low heart rate. It sucks bad. Knocks me about a bit. I have kidney problems and have to try and keep the BPs as stable as I can.
Initially they told me It was all in my head - (anxiety) - always a very neat fob off for the Doc's. Had to battle that old chestnut for about 6 months until I finally had a gastroscopy that showed the stomach was barely working. (12 hours after eating - the food was mostly still in there with only a little bit in the duodenum) I kind of decided myself to up the micophenolate (as well as the prednisolone) when I heard the news and now after 5 more months the stomach is finally starting to kick in - as in - I'm not worrying about starving to death any more. (mico's seems good for everything)
I'm able to eat three small meals, but have to be careful what to put in there. I'm trying to avoid iron injections by stuffing some red meat in there - but that and dairy the hardest to digest. Its always a lovely feeling when the food just sits there and go's nowhere. Creon (digestive enzymes might come in handy eventually)
And a definite yes......its always a lovely feeling to hear that gurgle (and fart) knowing that its all working 'somewhat'
Right now I think I'm just beginning to preserve my weight so I'm happy. So so very happy I was fat to begin with.
As for the reflux - I take nexium (esomeprazole) but I fear rerflux is part of the condition really. I think the stomach just kicks back what it cant take in ? I'm slowly learning what it feels like when its safe to try and get more food in there. That's helped a bit. Perhaps ask you Doc. about upping the amount of nexium you can take. This really is the stuff for reflux.
There are other drugs that help with gastoparesis, I was on Motilium (domperidone 10mg) for a bit when the gut wasn't working at all. I'm overly drug sensitive and for me It had side effects, so once things started to work I stopped taking it.
Just a quick ps. Just read an article saying Motillium might not be very good for - heart rhythm ? (If I'm reading my medical jargon correctly). This is partly why I went off the stuff.
So glad the VSL is helping lupiknits! I ended up using VSL#3 alternating with a product that is predominantly bifidobacterium to get a wider spectrum of culture. I don't know if this is easily available in Britain, but Renew Life makes Ultimate Flora probiotic and it comes in several different strengths . I usually use the 30 billion strength or higher for this product., depending on sales at the health food store.. here is it carried in the refrigerator case to protect it. Those two probiotics have been a win for my gut.
I also make yogurt and kefir with dry powder cultures that you can get with extra probiotics. If you let it "cook" for longer than usual, the lactose is broken down which means I can tolerate it. It also is thicker that way. You also can easily strain more liquid out of it and make yogurt cheese which is wonderful. This way you can add flavors, fruits or sweeteners to your taste, ability to process and limit sugars.
Thanks. I do, and have, made my own yoghurt for some time, as well as buying it. I looked at making my own kefir but because it's still very new here there's a scarcity of the culture (grains?) to start it, and from what I've see you can only make it in quantaties far greater than I can consume. I'll keep an eye on this, and consider for the future x
I have used VSL3 for years and trade off in the evening with a less expensive brand in the evening. I still have massive bowel problems but I am IGg deficient and. Medicare is now removing gamma globulin for my condition so my stomach is going crazy no matter what I take for it!! Everyday I become allergic to something new! Makes me really sad!
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Stage 3 kidney disease 
I started mepacrine today. 50mg x 3 times a week. In addition to hydroxy and MMF. 
