IBS/IBD sufferers...

[Jelly Bean]

@Jelly Bean Are you any better?

Ah thanks for asking - yes so much better thank you.
I've been really really strict and tried to 're set' things. I've temporarily pared back my diet to only the things I 100% know don't cause harm. Boring but seems to be working. I think the plain kefir drink every morning has also helped.
I haven't bought the silicol yet but will.

For longer term gut health has anyone tried Symprove? I see it being advertised a lot on IG - it seems quite expensive though.

 

[EllenDeGenerate]

Good to see talk on here about IBS. I was diagnosed with it many years ago, and suffered in silence miserably for may protracted periods. Back then the very mention of it raised a giggle among non-sufferers. Thats thankfully changing.
If anyone is interested, I get great relief during a flare up, from Colpermin (peppermint oil capsules)/ Buscopan.

 

[MickeyMouseClubhouse]

@Shoegal17 @Jelly Bean - Are you both reducing your fat intake? My wife has BAM, and as well as taking Colestyramine, the consultant basically said you need to only eat foods where the 'Traffic Light' on foods is Green for Fat.

 

[Carapop]

Ah great! I hope you still managed to have a lovely holiday?

Bowels are annoying.

I second this motion! But am also incredibly grateful that what I have is even somewhat operational! It was touch and go for a while. We really do take so much for granted don’t we.

 

[Sheabutter]

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!

 

[Blahblah93]

Thank you. Jesus that sounds horrendous for you. I'm so sorry to hear this as I can only imagine how much pain you were in.

I've struggled with flare-ups for so long and then got so unwell last year they suspected appendicitis/diverticulitis (I don't fit any of the criteria) as well but they did a scan and found a severe infection throughout my bowel. They discovered tethering and weak/fatty areas of the bowel.
I was on the bowel ward for a week. However my colonoscopy seemed fine.
But by then my flare up had gone.

I feel like no one cares.
Feel like I may just go private but then o don't even know who to see!
Thanks for the suggestions and help!

Ask to have an endoscopy or a capsule endoscopy. Crohns can be from mouth to anus so your inflamation could be higher up the digestive tract where a colonscopy wouldn't be able to reach.
It's horrible but there is light at the end of the tunnel. Unfortunately you just got to advocate for yourself and don't take no for an answer otherwise they don't do shit.

 

[MickeyMouseClubhouse]

I have Crohn's and currently on day 4 of isolation due to testing positive for covid. I'm double jabbed (was booked for my booster but had to cancel as I felt rough from my flu jab). I feel awful, I'd hate to think what I'd be like if I wasn't jabbed.

Thankfully I had my Humira injection last week. I don't think I'd be able to cope with that and covid!

I had a similar thing, had an infusion then tested positive within a few days. My wife already had it a week before the infusion, which makes me think the infusion weakened me.

I'm still coughing sometimes, 3 months later!

 

[Carapop]

Hi all, my daughter has been undergoing tests for chrons disease & tomorrow we get the results. I am petrified shes only 11, her symptoms have been on going for 3 years. Part of me thinks if we get the diagnosis then we have an answer & part of me doesnt want the diagnosis.

An answer is always better to none. With a diagnosis you can get care and treatment and appropriate support. My friend’s teenage daughter was diagnosed a few years ago and it’s been life changing in all the ways, some good and some bad, but for the first time ever she’s being appropriately medicated and experiencing prolonged periods of remission. Crohns is a chronic illness but it is manageable.

 

[maytoseptember]

I think magnesium citrate is renowned for causing diarrhoea and alternative forms are recommended @ThisIsMyDragName

I tried magnesium glycinate (apparently the type the doesn’t affect the bowel) and it still gave me violent diarrhoea, so I’d be nervous about taking magnesium if I were you

 

[lorballs]

Does anyone suffer from sulphur burps gp
Was pretty much dismissive

 

[Blahblah93]

I can understand the first appointment being so short, without the bloods and stools they can't do the initial tests. When I was diagnosed with Crohn's my inflammation markers on my bloods were over 90, when they should be something like below 8. I was also B12 and Iron Deficient which is another sign of inflammation.

The blood test results would trigger further tests like colonoscopy etc. My IBD Team told me last week the backlog is horrific for MRI and Endo. Talking months rather than weeks.

Bright red blood is usually in indication of you going to the loo so much, it's coming from right by the anus. Any bleeding from within the bowels would be darker and in the poo itself.

As you're going to the loo a lot, are you also loosing weight without trying?, I lost 20kg in about 2 months prior to diagnosis.

You can try and see if adjusting your diet helps. Cutting out raw fruit and veg, anything with seeds and eating processed foods, mash, rice, pain chicken. Stop pop, alcohol, coffee as well. If you stop going to the toilet so much, and lose the pain, try and introduce the eliminated items one at a time. Then if you do flare you can take that info to the Dr.

Yup!

And record everything.
I wrote down everything I ate. When I had pain and what scale. How many times I went to the loo and what type it was. If I had blood. Recorded levels of fatigue.

 

[Blahblah93]

After 12months remission, i had to stop my meds because of catching covid and an upper resp infection (on advice with the nurse at my gp) im now in a full blown flare. It started off with a bit of spotting but now theres blood and mucus and the feeling of needing to go and when i go, i just pass the blood. Iv been prescribed prednisone foam enema, im really nervous as iv only ever had oral pred and im shitting it (no pun intended)

Ive been on pred for over a year now (getting a stoma, hoping that helps things). And been off and on for nearly 10.

Set your alarm and take your meds at like 5.30am as it can really affect sleeping (i even got prescribed some sleeping tablets as it got so bad - dont be afraid to ask).

Warn your close family members that you may be abit off as it does effect your mood (im over emotional and get angry quickly)

I have a love hate relationship with that drug. It does wonders for my Crohns symptoms but the side effects from the drug can be challenging.

If you wanna talk about it just drop me a message.

 

[WilmaHun]

I’ve majorly flared up this morning I’ve not eaten anything out the ordinary so I don’t know what could have caused it.

 

[maytoseptember]

I did get sedation. No way was I having it without. I was worried I’d feel strange and woozy but I didn’t. In fact I felt fully “present” in my mind during the whole thing, but later on when I thought back to it, it’s like I’d forgotten most of it. Apparently that’s very common!

 

[Jelly Bean]

Do you mind if I ask which tablet you get from Holland & Barrett? I feel absolutely overwhelmed with the probiotics out there and terrified to try any incase they make my very loose stomach worse. I’m on waiting list for a scan for Bile Acid Malabsorption, something I hadn’t even heard of until very recently.

Omg I have BAM too.
Which prompted me to start the tablets. It was getting so out of hand and depressing. And restrictive.
I take Optibac from Holland and Barret. But it really was a case of standing there and going 'eeny meeny miny mo' tbh. It is overwhelming.
I don't think they'll make things worse for you. I was going to the loo about 16 times a day. I was worried too about making it worse (if possible) but I had nothing to lose tbh. The probiotic honestly made things better within a couple of days. I was so sceptical and was amazed so I don't think it can be all in my mind. I'm still mega careful with my diet and my particular triggers (pasta, bread, pastry amongst others) and still have blips but nothing like it was.

This is the one I usually take - often on special offer. About £10. But really they are all fairly similar.

Optibac Probiotics Every Day Capsules | Most Recommended UK Brand

6 scientifically researched probiotic strains with FOS prebiotics. Supports digestive health. Perfect for every day use. Most recommended UK brand

www.optibacprobiotics.com

 

[TheDragonWithAFlagon]

Does anyone hear get frequent stomach/bowel/intestinal rumbling and gurgling - but not associated with diarrhoea?

If so, does it tend to happen during the night?

I've had this on and off for a while and can be so loud it wakes me up.

Used to - but when I went gluten free, I realised after a while that it hardly ever happens anymore. When it does, Mr D normally disappears off to discreetly check food labels and subsequent evening meals have been things far less likely to carry any risk at all of cross contamination (chicken and potatoes, steak and salad, that kind of thing, rather than something processed labelled GF) until all is quiet again.

Whilst he's never complained of any symptoms, I have noticed that since the house is almost 100% GF (he doesn't want to waste money getting separate things, except for the occasional bag of crisps that I wouldn't like the flavour of in the first place, never mind them being unsuitable), he's stopped trumpeting the onset of sleep as well.

 

[WilmaHun]

Thanks so much for replying. I've had a loss of appetite over the last few weeks but think it could be because I've been winding myself up and googling things. I also flip between constipation and looser stools. My doctor called last week to give me the results of blood tests (but I couldn't understand him ) he said nothing to worry about, and a slight deficiency in vitamin D, as well as inflammatory markers sligthly up (but didn't say why, which has worried me!! My mind is into overdrive. What does that even mean?)

so I'm speaking with a different doc tomorrow, whom I can hopefully understand.

Do you think it's all linked? I literally Google everything any time I have a slight twinge or pain. It's awful.

im a serial googler too. I literally think I google a health related thing every single day, it’s draining and it really does you no good. The anxiety you’re currently feeling probably is making your symptoms seem worse - mine are always worse when I am stressed, nervous, anxious etc. The good thing is your doctor has said nothing to worry about. My tests showed a vitamin D deficiency too.

I hope tomorrow’s appointment with the dr goes well - let us know! And don’t be afraid to ask questions, or ask for clarification if you’re unsure of anything. It’s what they’re there for x

 

[MickeyMouseClubhouse]

I'd take the whole day off yes.
Firstly, you will have to do a little diet they give you a sheet with what's allowed a few days before. Then this can vary but you drink this stuff the night before. About two litres. It tastes awful but a tip is to put in the fridge and drink with a straw. You can add lemonade too. You wouldn't be able to eat. This will make you run to the toilet a lot. Plenty of moist wipes. You get to the point where water is just coming out.

At the hospital you will have a canula put in. You get given some underwear with a flap in the back and two gowns. One on like a dressing gown keeps everything covered. Normally a bad or locker to keep your clothes in.
You lie on the bed on your side and they just open the little flap. Pop the tube in no one can see anything. You will be given sedation anyway by this point and everything feels fine. At points you have to lie on your back. You get to see your bowel in a massive TV . Doesn't last long, some people fall asleep. I haven't because I want to see. They take you to recovery where you have tea, toast and biscuits. Then you on your way. Often I have a bloated tummy so windy the rest of the day.
Honestly, the prep is the worst part. But take the sedation and if you need gas and air. They will be a nurse right next to you, often holding your hand if needed if you feel scared.
Hope this puts your mind at rest.

Good description. I'd add:

• That the bloating feeling is beacuase they pump air in to make space for the camera to see.
• I felt the camera reaching the Terminal Illium end of the small bowel, it's a weird feeling, but not painful.
• The Endoscopy is about 1.5cm in Diameter, it's not painful, they'll examin with a finger first.

When I had one when flaring I ironically felt better just before it, as the bowel prep clears you out, and theres no food getting stuck in the inflamation causing pain.

 

[judgejohndeed]

@Laurst IBS is a diagnosis by elimination so people obtain it different ways, e.g. generally if you have bowel problems you'll have bloods and a stool sample to test for IBD and coeliac, if this is clear really you should have a colonoscopy to confirm a diagnosis of IBS but GPs tend to say people have it when those tests come back clear. It can also be brought on after a bad bout of any kind of food poisoning, gastro etc. It doesn't really matter whether you have a confirmed diagnosis though as most of the time if you have bowel issues then the usual suggested IBS relief will help you - e.g., going low FODMAP and working out food triggers, minimising stress, etc. GPs can prescribe you mebeverine also, I have this on rolling prescription but rarely take it as I find it makes me constipated. Buscopan for IBS works well for cramps for me (over the counter) I was told by a consultant that you can take up to 6 tablets safely, about 3 usually does the trick for me if I'm really in agony. When I'm constipated I take Movicol which can also be bought OTC.

 

[Shoequeen91]

Oh god. I didn't want to say too much but yeah they are horrific. It feels like some sort of medieval torture. I have to have them twice a year. Give me a colonoscopy any day.

You are a remarkable person.

Medieval torture really is the best way to describe it. I’m so sorry to anyone silently reading this who is about to have one. you will get through it though.

Someone really need to look at better ways to explore the throat/stomach/upper colon, the capsule aspect for example needs to be funded asap. If I ever come into a lot of money, I’ll throw money at it myself.