I have crohns, have had a bowel resection and inject myself once a week and have infusions every couple of months. It has literally destroyed my life I had over 25 hospital admissions one year and currently have covid and am really high risk cos im on immunosuppressants. It sucks
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My disease is pretty well maintained through medication although I still have the odd flare up that is more often than not without blood. The thing with chronic illness is you quickly learn you have varying degrees of being unwell and more severe flare ups will have blood in them. Best advice I can give is taking note of symptoms and if necessary keep a food diary. More often than not it’s misdiagnosed as being IBS so the more information that can be given at apts the better.
you really have to push sometimes to be heard, I was starting to feel like I was imagining what was going on with me as the GP kept passing off what I was telling them as being nothing . If they were telling me it was fine then I must be exaggerating kind of thing. I ended up on a drip for 3 days and getting a blood transfusion as I was so severely dehydrated and anaemic from going to the toilet so much. You know your own body and what is different for you, if I could go back and tell myself anything it would be to be more assertive about what was going on and not take no for an answer.
Take care @Milfordcubicle that sucks hope you’ve got a good support network xx
I’m so sorry you’re poorly, the threat of catching Covid this past year has been really stressful - sending lots of healing prayers your way
I have Crohns too, currently on daily meds and Infliximab infusions. It’s tit - literally! If you ever want to chat feel free to DM me x
Yep it took me 18 years to get diagnosed correctly
My heart really goes out to everyone in this thread. The fact we can all relate to each other in one way or another but all have something different wrong with our guts/bowel speaks volumes.
I agree on being forceful with the GP. I went back to mine and they’ve now put me on omeprazole to help my diverticular disease. I do feel a lot better but I’m still so conscious of the slightest thing with my food.
Sending lots of love!
I agree on being forceful with the GP. I went back to mine and they’ve now put me on omeprazole to help my diverticular disease. I do feel a lot better but I’m still so conscious of the slightest thing with my food.
Sending lots of love!
Spoiler: Too much TMI
I was diagnosed with IBS four and a half years ago and within 30 days I was in hospital due to side effects from the treatment. I was sent home with a steroid injection and approx. three months later we found a medicine that would calm the inflammation & stop the unfathomable pain I was in. So basically, for the past four years I have had IBS symptoms (inconsistent and generally unimpressive
) but so long as I wasn’t in physical pain, I wasn’t complaining.
Cut to 2020 and I learned about “live foods” and “gut bacteria.” I think I did myself more harm than good for the past year and a half — constantly worried that I was on the brink of a flare up — but after a LOT of experimenting, I finally have results! My’s are at pre-diagnosis levels on the Bristol stool chart 
Backstory of 2020: I tried kombucha with zero success, Yakult which gave distressing, painful side effects, kimchi which bloated me, and Greek yogurt which brought everything to a screeching halt. Eating a little bit of dairy was fine; eating a lot of dairy, again, pulled the brake. Eventually I realized that a fermented supplement (Biostrath) I would take on and off again was responsible for righting the ship each time. I also realized that introducing too much of a new strain was a big no-no. I was going from never having tried a product to integrating it into my daily routine. Now I know that it takes three days for a brand new healthy bacteria strain to take root in my gut (YMMV) and if I am not balancing it out with other healthy bacterias it will cause huge problems. So, I am now eating live sauerkraut with lunch, pickles or pickle relish in summer side salads, green tea, black tea and live yogurt. (I had cottage cheese but on close inspection, it did not have live cultures included so need to check the ingredients closely for those.) I am looking forward to introducing kefir and trying kimchi again. The key is to not rely on any single fermented food to do all of the work. I’m really excited for this breakthrough and if anyone has any tips or tricks or favorite fermented foods please share!
That’s my probiotic story. Maybe one day I can come off my medicine but I won’t get ahead of myself
Anyway I hope this hard earned knowledge helps someone or at least gets them started in a helpful new direction xx
p.s. Biostrath is the only fermented food I have more than once a day (I started taking it 3x a day per the label’s instructions) and while it doesn’t hurt, I may dial it back to my heretofore 2x a day.
p.p.s. I am starting my prebiotic journey soon. If anyone is interested in updates I will share them!
I was diagnosed with IBS four and a half years ago and within 30 days I was in hospital due to side effects from the treatment. I was sent home with a steroid injection and approx. three months later we found a medicine that would calm the inflammation & stop the unfathomable pain I was in. So basically, for the past four years I have had IBS symptoms (inconsistent and generally unimpressive
) but so long as I wasn’t in physical pain, I wasn’t complaining.Cut to 2020 and I learned about “live foods” and “gut bacteria.” I think I did myself more harm than good for the past year and a half — constantly worried that I was on the brink of a flare up — but after a LOT of experimenting, I finally have results! My
’s are at pre-diagnosis levels on the Bristol stool chart Backstory of 2020: I tried kombucha with zero success, Yakult which gave distressing, painful side effects, kimchi which bloated me, and Greek yogurt which brought everything to a screeching halt. Eating a little bit of dairy was fine; eating a lot of dairy, again, pulled the brake. Eventually I realized that a fermented supplement (Biostrath) I would take on and off again was responsible for righting the ship each time. I also realized that introducing too much of a new strain was a big no-no. I was going from never having tried a product to integrating it into my daily routine. Now I know that it takes three days for a brand new healthy bacteria strain to take root in my gut (YMMV) and if I am not balancing it out with other healthy bacterias it will cause huge problems. So, I am now eating live sauerkraut with lunch, pickles or pickle relish in summer side salads, green tea, black tea and live yogurt. (I had cottage cheese but on close inspection, it did not have live cultures included so need to check the ingredients closely for those.) I am looking forward to introducing kefir and trying kimchi again. The key is to not rely on any single fermented food to do all of the work. I’m really excited for this breakthrough and if anyone has any tips or tricks or favorite fermented foods please share!
That’s my probiotic story. Maybe one day I can come off my medicine but I won’t get ahead of myself
Anyway I hope this hard earned knowledge helps someone or at least gets them started in a helpful new direction xxp.s. Biostrath is the only fermented food I have more than once a day (I started taking it 3x a day per the label’s instructions) and while it doesn’t hurt, I may dial it back to my heretofore 2x a day.
p.p.s. I am starting my prebiotic journey soon. If anyone is interested in updates I will share them!
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I sometimes go a couple of months without any problems but when mine flares up my stomach is absolutely horrific for a days at a time, can't keep anything in. I had diarrhoea about 6 or 7 times in one night the other week from a food that doesn't normally cause me major problems, and I think it's what also caused a UTI I came down with shortly after. Mine seems so random, maybe stress is a trigger 
Just googled live foods and seems I misspoke. Fermented foods is on the money. Live foods are lava for the time being as I go through the slow process of figuring out what my body likes and doesn’t like - for example, it is not loving raw celery I had as a snack
Celery in its rawest form is a live food and *not* what my body needs.Also the teas that I currently drink are loose teas - formosa oolong and an earl grey that goes by the name of lords tea (definitely not a green tea but which came in a green tin
Smart, Sheabutter). Oolong is also referred to as Black Dragon Tea so that is where that confusion stemmed from.Green tea is next to be added after I inspect kefir which, honestly, with its extensive list of bacterias and flavor profile has me quite nervous. But I’m very excited. I’ve wanted to do something like this ever since I watched this short NY Times documentary:
Just not using his method
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Posting updates under “spoiler” heading from now on so that my posts are convenient to skip for people who are not interested.
The kefir was not as strong as I remember; it was mild and sweet, in fact. I purchased a grass fed milk version that was highly rated. Making kefir to align with dietary preference is possible too — just have to obtain kefir granules. I might try it someday to make water kefir which is an ingredient necessary for healthy cream soda. Ordinarily, I don’t drink soda because it adds gas to my digestive tract which is painful to me. However, the effervescence of kefir does not bother me.
Green tea still to come. Still drinking (and enjoying) tea I already have going. I added Yakult to my online shopping. I drank one but I’ve chucked the rest in the freezer to try again towards the end of my experimenting. It was too aggressive after one serving.
Originally my goal was to introduce as many bacteria strains as possible. I’ve since learned about psychobiotics which is the term for certain bacterias that have an affect on mental health. My new aims are to check off a list of strains that have been examined for beneficial qualities and to become in tune with my mental health changes as I add unstudied varieties.
For probiotic foods this week I am continuing with live sauerkraut, cultured cottage cheese and BioStrath. I have added vanilla flavored skyr — if I repurchase it I will order plain. This tastes like vanilla flavored sour cream
For prebiotics my diet includes carrots and bananas and I have added oats. I prepared overnight oats but I will try cooking them now and see if there is any difference in digestion.
I cannot say there have been improvements to my digestion this week. Aside from the day with Yakult, there have not been any regressions.
Green tea still to come. Still drinking (and enjoying) tea I already have going. I added Yakult to my online shopping. I drank one but I’ve chucked the rest in the freezer to try again towards the end of my experimenting. It was too aggressive after one serving.
Originally my goal was to introduce as many bacteria strains as possible. I’ve since learned about psychobiotics which is the term for certain bacterias that have an affect on mental health. My new aims are to check off a list of strains that have been examined for beneficial qualities and to become in tune with my mental health changes as I add unstudied varieties.
For probiotic foods this week I am continuing with live sauerkraut, cultured cottage cheese and BioStrath. I have added vanilla flavored skyr — if I repurchase it I will order plain. This tastes like vanilla flavored sour cream
For prebiotics my diet includes carrots and bananas and I have added oats. I prepared overnight oats but I will try cooking them now and see if there is any difference in digestion.
I cannot say there have been improvements to my digestion this week. Aside from the day with Yakult, there have not been any regressions.
I really recommend Symprove. It's not cheap but it has been life changing for me
Thank you for the recommendation! Unfortunately it is not available in my country.
Does anyone suffer with endometriosis? I was diagnosed a couple of years ago and put my bowel issues down to that. I had surgery to remove it and my doc advised there was no endo on the bowels but I'm still suffering with bowel issues.
I'm still suffering with diarrhea every morning (2-3 times), cramps in lower tummy, worse on the left side but can happen all over, I have chronic fatigue nearly all the time, headaches, joint pain and the most annoying thing has been recurrent mouth ulcers all over the back of my throat.
My GP has done bloods and my CRP levels have been consistently raised, she mentioned this can happen with IBD.
Has anyone experienced anything similar? I don't know wether to go back to gyne or try a gastroenterologist?
I'm still suffering with diarrhea every morning (2-3 times), cramps in lower tummy, worse on the left side but can happen all over, I have chronic fatigue nearly all the time, headaches, joint pain and the most annoying thing has been recurrent mouth ulcers all over the back of my throat.
My GP has done bloods and my CRP levels have been consistently raised, she mentioned this can happen with IBD.
Has anyone experienced anything similar? I don't know wether to go back to gyne or try a gastroenterologist?
It could be diverticular disease. Ask for a CT scan if possible as this was how mine was diagnosed, sometimes it can be diagnosed by colonoscopy but because of how young I am doctors weren’t keen on using this as a way of diagnosis for me.
Usually cramps on the lower left side are diverticular related, I tend to get them in the upper left side though. I was really fatigued, not as much now but I have been making sure to take magnesium and B12 daily for the last six months on and off. Also my CRP is only ever slightly raised and more so borderline than a major concern.
No one really knows about diverticular disease when I mention is so may be worth looking it up or mentioning it to your doctor. Mine was only diagnosed after I was hospitalised for four days this year cause I couldn’t keep fluid down.
Hope this helps slightly.
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Thank you so much. Will definitely mention this to the doctor because the left side pain has been going on for years, thought it was ovary pain but I think it's more digestive problem now.
No problem
It’s funny you mention ovaries as with my CT scan there was a cyst on my left ovary which turned out to be a functional cyst.The CT scan massively helped but I know they aren’t always so easy to get. Worth an ask at least and sending positivity your way
I have Crohn's Disease and IBS. I've had the majority of my bowel removed and I'm currently on a chemotherapy drug and steriods. Been having to have a liquid only diet for the past 4 months on and off. Currently in hospital with an anal fistula that requires surgery. Oh the joys of having IBD.
Sending love
I have Crohn's and had an anal fistula 10+ years ago, the pain from that was awful. I was so relieved after the surgery.
What medication are you on at the moment?
I'm currently on Methotrexate and tbh I absolutely hate it, the side effects are draining. Currently on 40mg of steriods (for 4 weeks then tapering off over 3 months). Yeah man the anal fistula is not fun, the amount of blood loss was insane before I got it diagnosed. Had to have a blood transfusion as had really awful anemia. Hoping I might get a drug change and once this op is over I should start feeling more human. I think if nothing changes a stoma is on the cards which tbh I'm kinda hoping for as I need to get some sort of life back.Sending love
I have Crohn's and had an anal fistula 10+ years ago, the pain from that was awful. I was so relieved after the surgery.
What medication are you on at the moment?
I have been diagnosed with IBS and started on mebeverine. I don’t think it’s making any difference at all to be honest.
I had a McDonald’s on Saturday and I’m still in agony with cramps and bloating. This is the worst flare up I’ve had, I’ve been in tears with it. Is there anything at all I can do it ease the pains?
I had a McDonald’s on Saturday and I’m still in agony with cramps and bloating. This is the worst flare up I’ve had, I’ve been in tears with it. Is there anything at all I can do it ease the pains?
This is me.
Currently being referred back to my bowel consultant as my gynaecologist is like nah this isn't endometriosis.
They think it's Crohn's
I have endo but it looks this has masked the crohns and I was just ticked off the list and now the gynaecologist is like it's not endo but I have fallen through the cracks.
I have been extremely ill. It's no fun.
I've been hospitalised a few times, with severe bowel Infections. They've found tethering and weak areas of the bowel and scars etc
I have some hideous problems that doesn't coincidence with my period or ovulation.
Blood in stools
Fever...feels like I'm coming down with flu
Migraine
Sinus problems
Blood in stools
Mucas in stools
All of a sudden horrendous diarrhea
Constipation
Extreme tiredness with a flare-up like 14 hours sleep and still can't wake up
Brain fog
Face rash with flare up
Mouth ulcers
Have had angular cellulitis that needs strong meds as my body can't clear it up and fight the infection
Horrendous stomach pain in areas I can pinpoint ...like I was to pull my intestine out
Stomach pain makes me faint
Idk if this is crohns but I have it in the family and my GP is now going back to my bowel consultant.
I don't buy that it's endometriosis
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