Just can not get a grip on my IBS symptoms

[Silverumbrella]

And it’s making me so very low and depressed.

I have had IBS for decades.
Its been and down to over the years, some years I’ve managed to keep it at a manageable level, other times it’s been quite bad but I’ve always found a way managed to find a way to settle it or it’s just naturally settled itself.

However, around 5 years ago the symptoms started to become more and more frequent and has now reached a point where I have symptoms daily, on/off all day and even wakes me through the night. I have IBS-mixed but more prone to IBS-d and a constant bubbling, gurgling, growling gut which leaves me feeling very nauseous and with a feeling like I need the loo, on/off all day.

I know it’s a condition which never fully goes away and it’s something to manage rather than cure yourself of but I can’t even get to a place where I can manage it anymore and feel so trapped by this condition. I hardly go out anymore, have the most plain, boring (low fodmap) diet, only drink water and hardly any treats. I am afraid to travel anywhere, go out for meals, theatre trips, the cinema etc. My life has become very small and confined. It affects my relationship with DH and DC as we do very little as a family now.

I appreciate there is also a huge mental health aspect attached to the physical but it’s seems a chicken and egg thing and I can’t break the merry-go-round.

I feel that I haven’t left any stone unturned when it comes to finding relief. I have had many gastroenterology appointments which are always fruitless as my gastroenterologist seems uninterested tbh.
I have had a colonoscopy, gastroscope, pill camera endoscopy, a ct scan, various ultrasound scans and lots of different stool tests.
I exercise, avoid all known triggers, I’ve had lots and lots of CBT and therapy, I listen to gut directed hynoptherapy every day. I have tried all kinds of meds and antidepressants (these make the gut issues worse!).
I have trialled probiotics, tried kefir, live yougurt etc…….with no relief.

No one fully gets its, most people tell me it’s all in my head and I just need to get in with life (Well yeah! That’s what I’m trying to do but effing well difficult when your digestive system constantly reminds you that’s it’s there!).

Is there anything else I could do or try, I am at the point of desperation?

I am hoping someone on here may have been through this and can give me some advice or tips on something that worked for them as I’m getting more and more despondent and feel my life is over.

I think that the silica gel is good also but v expensive!

And it seems doesn't work on its own

OP how are you getting on now, did you try any of the new suggestions on this thread and did any work?

Nogodsnomasters I found going very strictly gluten/wheat free helped somewhat but I was/still am struggling.

However I’ve just been diagnosed with endometriosis and have been told this will be contributing to my digestive issues. Whether I have always had IBS running alongside this or it’s purely caused by the endo I don’t know? Just a very long wait to see the endo team now so only time will tell.

I also tested positive for SIBO which was contributing to my gut issues but have since found out this can be caused by endo too. I have specific antibiotics to treat that.

Have you tried following the Fodmap plan? If not, ask your GP. My husband thought he had IBS, turns out he’s gluten intolerant.

I have MrsSkylerWhite, I’ve been fully low fodmap for the last 5 years. I have had tests for coeliac although I do better without wheat/gluten in my diet so I’m probably sensitive but that’s maybe due to the fructans in the wheat as they are high fodmap.

It's not great that you've been diagnosed with two other conditions but I'm sure it's helped reassure you a bit that it's nothing sinister and that you have some answers as to what's causing all this. Hopefully the antibiotic treatment will help?

I'm going through something similar to you. GP won't refer for colonoscopy as I've no red flag symptoms, no bleeding, blood tests fine, FIT stool sample and cal protectin both normal, h-pylori test normal. I've had a barium swallow test done which was fine. I tried going gluten free last year it made no difference. I've not tried dairy free yet, I would honestly need a replacement because I have milk every single day! I've cut out all reflux trigger foods and quit smoking and I'm on a PPI but I still suffer upper and lower digestion problems of varying degree/symptom every single day. It's genuinely ruining my life and causing me distress.

I’ve had these gut issues since 1998 and people think I’m exaggerating when I say it’s ruined my life but I genuinely feel this way. I totally understand.

It's awful isn't it? I've had IBS symptoms for about 10yrs or more, but it's gradually getting worse, especially over the last 7-8 months. I am diagnosed with GERD so if it's not my bowels playing up it's the other so I'm always miserable 😞

Nogodsnomasters same here, really feel
for you. I have functional dyspepsia and have upper issues too.
Are you anywhere near Perimenopause? My upper issues became so much worse as soon as I got to the age of 45.

No not yet I'm only 35. The reflux got bad enough to see a GP about it in 2021 so I've been on a PPI since then but I'd had milder symptoms of it since about 2019. I've quit smoking, quit alcohol, cut out so many foods but yet still suffer every single day with some symptom or other, a bad day is when all symptoms come at once.

Isn’t it just awful? I have the most boringly plain diet and only drink water yet still suffer. I just want to eat and drink normally like everyone else I know and not have to suffer any consequences for it.

I also have a plain diet and you know what, I wouldn't even mind it if it actually bloody helped but majority of the time it doesn't!

Hi OP, just wanted to check on the type of low fodmap you're following, as you've mentioned kefir (lactose) etc in past posts so I wondered. My apologies if you've 'been there, done that' many times already.

I saw a dietician about 10 days ago and was sent a copy of the Guys and ST Thomas' and KCL FODMAP guide (you can only get via dieticians), and it's stricter than most of the stuff I've found on the internet and goes into more detail about the hidden ingredients. I'm following strictly for 4-8 weeks and then will try to include some ingredients (cooked onion being my first choice, as I can't cook much right now!).
For instance, I'm not buying any sweet snacks as they all have either glucose-fructose syrup, inulin, flavourings or sweeteners such as sorbitol. I've also bought main meals from Field Doctor, and although they're mildly strange in taste (I assume due to the lack of cooking with onion or garlic), they're pretty good, not vastly expensive (if you buy the meals for 2 and then use over 2 nights), and are definitely strict. I've only been on it for 4 days, but have lost 2 lbs in 4 days (welcome side effect currently), and my guts are definitely pretty quiet for the first time in years. Additionally my Barretts oesophagus (which causes terrible indigestion when flaring, even when on 4 PPIs a day) is also pretty quiet too. I had wondered if 1 was flaring the other, so that pans out so far. The only other thing I've cut out is uncooked tomato, as it seems to annoy my stomach, although it's low FODMAP.

Of course, this could all go to shit (pun intended) in a few more days, but so far, it's good. I did also notice that Field Doctor have a low FODMAP service, with a dietician too...I've not tried it, but who knows. I don't work for them by the way.

Hi op, being incredibly lazy and not reading the full thread thoroughly (just did a quick scan), but if it’s not been mentioned before, have you had a SeCHAT scan to check for bile acid malabsorption? That can be a cause of IBS d.

Hi KnackeredBack, thanks for your reply.

I have been following the low fodmap strictly under the UCHL with one their dieticians. I tend to stick to very basic foods which I cook from scratch.
I have to read labels for all ingredients, stuff like inulin and sorbitol kill my digestive system.

I really like the Field Doctor meals which I have in when I can’t be arsed to cook. I agree they taste a little bit bland but tbh I’ve eaten without foods like onion and garlic for so long that I have become used to it.

Glad to hear it’s helping you, nothing worse than gut issues ruling your life is there?

Sadly I’m still struggling but I’ve just found out that I have endometriosis, saw a specialist yesterday and he believes a lot of my gut issues are probably caused by this so this will be a whole new avenue I’m having to go down (it’s only taken 20+ years to diagnose me 🙄).

I hope you continue to see positive results from the diet, good luck with it all.

I've given up trying to work out what causes my gut issues. I take a loperamide every night, go to the loo without fail in the morning, and no longer have to panic about where the nearest loo is or what I can eat and when. My mental health is so much better which I'm led to believe is good for gut health.
Nurse is aware I'm doing this and says it does no harm.
I've had this 16 yrs, can eat something no problems, the next time I'm chained to the loo. We've established garlic and onions are a no no and dairy in moderation.
Hope you get some answers OP.

Auntie-sitting I had the BAM scan last year, it was clear but I have just been diagnosed with endometriosis and have been told this is probably causing some of my gut issues.

Rowgtfc72 I’m the same, have packets of Imodium everywhere!

Gosh OP, that's just what you need (not). I think we may have similar genes, as I also have endo and have had ablation in the past to help. It caused raging diarrhoea monthly. I hope that surgery helps significantly. x

Crikey, we do have very similar stories. Do you have your endo under control? Can I ask if you take any medication for the endo? Saw a specialist yesterday and he has recommended the mini pill but I’m so worried it will make my gut issues worse but feel I don’t have much choice especially as his only other recommendation what Zoladex which he said would plunge me straight into full menopause with all the symptoms.

Hi OP. Yes, thankfully my endo is now under control. It was worst after my first two DC, although with hindsight I realised that I'd had it since adolescence and had just put up with it all. I had the ablation and a cyst removed and then a year later was pg with no3. After that, it all died down a bit and although I've gone on HRT to help with joints/bones (spine is useless), it's very obviously a bleed and not a period so to speak - feels completely different and I imagine, what a 'normal' period should feel like. I'm going to see what this next one is like whilst being on low FODMAP, as hopefully it should be better, although who knows. My DD18 was diagnosed with endo a year ago and following ablation, is on the minipill, which has helped with the endo a bit. I'd give everything a try, as you've nothing to lose if it's this rotten.

Are they doing to do some ablation to get rid of the endometrial tissue before you go on anything hormonal? I wouldn't have thought that the minipill would help much otherwise, as the hormones help to reduce the speed of endo recurring, but don't help with any endo tissue there right now (AFAIK).

I think we may be talking about different ablations lol
I had a uterine ablation where the lining of the womb is burnt causing scar tissue which stops heavy bleeding, you absolutely must not fall pregnant after as it’s very dangerous.
I wonder if you are referring to a laparoscopy? I’m on the waiting list for one but it’s over a year long 😢

Hopefully the diet will help you, I did find going low wheat/gluten eased my periods.

Hi OP, ablation for different things I think, but for endo you have the laparoscopy and ablation, to burn away the endometrial tissue, which I've had and I would hope they'd give you the same for yours. If you have the lap and they find any endometrial tissue, they will do ablation for that whilst in there, having a rummage!

I know what you mean about the wait...fingers crossed that it speeds up for you. x

KnackeredBack Ah, I see. Hopefully then, when (I eventually) get the laparoscopy they will excise or burn off the nodules which showed up on the mri and any other endo they find. Fingers crossed.