IBS/IBD sufferers...

[Blahblah93]

You really have to fight fight fight when it comes to getting a diagnosis or treatment unfortunately . Try to keep a diary/list of symptoms it really helps when trying TJ explain how you’re feeling and your symptoms

Yes! And take photos of your shit (I know it's grim). I did this with the amout of blood I was having, they didn't take me seriously until I showed them the level and then they realised I had a fistula.

 

[MickeyMouseClubhouse]

Sorry to hear you’re struggling
I’d definitely speak to the GP - I have crohns and the symptoms you describe are very similar to what I’ve experienced. Often people forget that IBD isn’t always rushing to the toilet, I suffer extreme constipation and vomiting during a flare as the stricture in my bowel inflames. I’m in no way saying you have a stricture btw! It’s just best to be assessed, and if it is something more that IBS, it’s always beneficial to catch it sooner rather than later. Hope you find something that helps in the meantime

Totally agree,

@sassylash - Best thing to do is get all the tests you can, Bloods, Endoscopy, MRI etc. Worst thing I did was ignore my symptoms for over 18 months, and ended up exhausted and both B12 and Iron Anemic!

 

[hellothere_]

I’m so glad I’ve came across this thread! My doctor thinks I have suspected IBS. I can be on the toilet upto 6/7 times a day , I pump without even knowing I’m doing it, I get horrible cramping, I pass all I can explain as is clear ish mucus (TMI, sorry). He gave me apercap and buscapan. He done a stool sample (all clear/normal), bloods (all normal but low folic acid), gluten intolerance test (normal) buy my symptoms still persist. There’s a part of my worried it’s something more serious (but ruled out most things so unlikely), and a part of me sad as I know there’s no ‘cure’ for IBS. How did everyone feel going through this stage?

 

[Dogwithabone]

Hi everyone, I found something out yesterday I never knew, I had severe Crohn’s for years up until remission a couple of years ago. Been through various failed treatments and surgeries and ended up needing a stoma at 19 yrs old. Anyway my point is has anyone ever heard of acne medication and Crohn’s? Basically it’s an antibiotic - even google clearly states it’s not suitable to ibd patients. I have been prescribed duac for years and years and smothered my face it like no tomorrow anyway, since I stopped using it I have been in remission ever since. Am I right in thinking this could have been what was aggravating it so bad and causing the flare ups and surely I should never have been prescribed this?

 

[maytoseptember]

I was worried about the sedation and thought I might feel woozy and horrible all day, but it wasn’t like that at all. I felt normal the entire time and rested the rest of the day, but didn’t feel unwell.

 

[Never in the World]

I took the 3 doses of Buscopan and it had no effect I guess it’s not ibs cramps after all

 

[Carapop]

Nope. I just deal with it. I hate it when I have an off day and can't go out. Family I imagine, think I use ut as an excuse to get out of things. I can't help it when I know I have to stay near the loo.

I hear ya. I’m on my own too and it is such a lonely isolating condition. And a vicious circle because anxiety makes it worse but how can you not be anxious when you’re liable to shit yourself. And food becomes so complicated and fearful. Takes the joy out of life. I have no advice but can only reassure you that I hear you and you’re not alone.

 

[Shoequeen91]

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!

 

[Summer2011]

I need help, I have been back and forwards to the doctors for years now with on going stomach issues, brain fog, fatigue and generally being run down. I was diagnosed with pernicious anaemia in 2011 following the birth of my daughter & I’m prescribed B12 injections as I can’t absorb the B vitamin in my gut. Prior to lockdown they wanted to test me for coeliac by taking a biopsy of my gut (I attempted the camera twice and couldn’t do it) during lockdown my consultant advised all medical procedures like that had stopped and they were diagnosing via two blood tests. I had them and both tested positive. He then wanted a repeat and this one came back normal (prior to this second round I was very unwell and was eating hardly anything - I don’t feel like the results were acccurate) I followed up with a 3rd 6 months later and again tested positive. This wasn’t enough for a clear diagnosis, however i was given a prescription for gluten free products & referred to the dietitian (who I see every 6 months and still do) I was unable to stick to a gluten free diet. Early last year my consultant got back in touch & said they now have a camera you can swallow and it’ll take 80,000 images of your gut and that will help diagnose. I was unable to complete the prep or swallow the camera so I remain in limbo. I’m very aware of the damage I’m doing to my body but also just terrified. I suffer terribly with heart burn/acid reflux which I’m medicated for, I have episodes of extreme nausea, bloating, dizziness, brain fog, diarrhoea but also anxiety too. I so far haven’t pin pointed any foods that trigger me - it can happen at anytime (usually night) it’s extreme pains, I can’t sleep, usually a hot water or a bath is needed. It means I have quiet a bit of time off work & im now anxious about going out to eat. I don’t know what I hope to achieve from this post so thank you for reading it all. I dunno if I need to improve my gut health as my diet is shocking, try and lower my sugar intake, try and work out what’s causing me so much pain. I’m just sick of living like this and feeling so unwell all the time. I’m fed up of being poorly!

 

[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.

 

[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!

 

[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!