IBS/IBD sufferers...

[pricef2]

Has anyone been tested for SIBO?
I’ve tried so much for IBS, medications, Fodmap etc. But nothing seems to work. I came across SIBO online and I have every single symptom! It’s never once been mentioned to me after seeing doctors and specialists for years! So was wondering if anyone else has managed to get the NHS to look into possible SIBO and do a breath test?

 

[judgejohndeed]

So I found mine is triggered by hormones so the best way mine is controlled is the mini pill but i take a double dose.

This is fascinating to me because I was just about to say that I was on the combined pill for years and suffered terribly, but having come off and onto the mini pill my issues have almost all resolved...never in all my years of begging doctors to help me has anyone ever suggested it could be the combined pill which is pretty horrifying really

 

[Inforapenny]

What about endometriosis? (I've written about this on the endo thread) Bear with me...
I went undiagnosed for 15 years. Fobbed off as ibs which I knew wasn't correct. I get such bad flare ups I've been in bed for days, horrendous pain, passing blood, mucus, the stomach cramps etc I am so ill it feels like flu and severe food poisoning. Also my immune system is poor so I get rashes and can't fight infections so my lips can be severely crusty and gross with angular celulitis so I need antibiotics. My periods are not heavy and I don't get pain in that area.

Be very wary of it just being IBS

It got so bad I ended up being taken in to hospital suspected appendix or food poisoning and spent a week on a bowel ward. They found my large intestine was/is a mess! They found thickening, holes, adhesions, tethering etc
And because of the tethering an infection had happened.
Anyway they preliminary diagnosed diverticulitis (I don't fit any of the criteria) then crohns and then weeks later took me in for emergency bowel cancer check.
All sounds very dramatic!
Not one doctor really asked about my history. It was my mum who suggested endometriosis of the bowel because flare ups seemed to happen around ovulation or my period and low and behold this is the cause.
Due to the severity of my endo it has destroyed my bowel and lots of bleeding into the bowel so I get really unwell. I am now waiting for surgery.
I've been told endo can mimic other illness such as crohns and due to the nature of my illness i have inflammatory bowel disease. They also suspect crohns but that the endo covers up this disease.

I had never in my life considered endometriosis in my bowel.

If you're medicating with the mini pill this is a classic example of endometriosis

 

[ChampagneBox]

So I found mine is triggered by hormones so the best way mine is controlled is the mini pill but i take a double dose. I used to be on the depo injection but the week before due I had flare up and week after I was still bad. Now I barely have any problems. This is probably the longest I've gone (8 months) without any real flare ups. I tried every diet, medication etc around. Had endoscopy, colonoscopy, surgery etc and nothing. I'm coeliac so don't have gluten anyway, but even on low fodmap food I was still ill but now I can eat a normal diet and be fine. Might be worth those who have tried everything and still struggling looking into.

It’s interesting you say this...I had an ibs flare up for months last year, partly because I has stress going on and health anxiety, I was going 5 times a day and it was loose BUT I had my implant taken out in August and as soon as that happened it stopped!

 

[it’s not been changed?!]

So I found mine is triggered by hormones so the best way mine is controlled is the mini pill but i take a double dose. I used to be on the depo injection but the week before due I had flare up and week after I was still bad. Now I barely have any problems. This is probably the longest I've gone (8 months) without any real flare ups. I tried every diet, medication etc around. Had endoscopy, colonoscopy, surgery etc and nothing. I'm coeliac so don't have gluten anyway, but even on low fodmap food I was still ill but now I can eat a normal diet and be fine. Might be worth those who have tried everything and still struggling looking into.

I had a seriously bad bloating experience yesterday. I was at work, too, and I was desperate to go home and change into something comfortable .
I’m actually due my depo on 10th match (a few days away) but I thought I was because I’d eaten rice the night before that had triggered it.
Without being too gross, I have the opposite of going to the toilet and it being loose. I get constipated and am really gassy I try and hold it in at work which makes it worse

 

[iloveanimals]

I had a seriously bad bloating experience yesterday. I was at work, too, and I was desperate to go home and change into something comfortable .
I’m actually due my depo on 10th match (a few days away) but I thought I was because I’d eaten rice the night before that had triggered it.
Without being too gross, I have the opposite of going to the toilet and it being loose. I get constipated and am really gassy I try and hold it in at work which makes it worse

Thats the type i get. I sometimes look pregnant with it, and its really noticeable because im slim. It can be very uncomfortable. It can also make you anxious because you know when you are not going to be able to go. If colpermin doesnt work i use fybogel but only on rare occasions if its been 3 days or so. It can also make you nauseous. Mine is also worse at ovulation time, when i am bloated anyway. Sorry for you x

 

[it’s not been changed?!]

Thats the type i get. I sometimes look pregnant with it, and its really noticeable because im slim. It can be very uncomfortable. It can also make you anxious because you know when you are not going to be able to go. If colpermin doesnt work i use fybogel but only on rare occasions if its been 3 days or so. It can also make you nauseous. Mine is also worse at ovulation time, when i am bloated anyway. Sorry for you x

I have tried the fybogel sachets in the past and they didn’t do anything for me. Dulcolax don’t even work!! I try and make sure I drink lots of water and eat prunes the bloating had gone down by Thursday morning, but when I took my skirt and tights off on Wednesday night, my stomach popped out and was rock hard.
Although, it’s horrible other people experience, I’m glad I know there people out there that suffer too.
I wish I didn’t have to watch everything I eat incase it triggers a reaction in my stomach.

 

[iloveanimals]

Fybogel works for me, i take it at bedtime if im desperate and after 2 black coffees in the morning i am ok. I drink a lot of water and light exercise sometimes gets things going. I dont watch what i eat to be honest, because im a vegetarian so i expect i get a lot of fibre anyway. Im sorry nothing really works for you , the bloating can be very painful cant it ? The doctors do give mebeverine when its really bad, i find that quite good. Have you tried colpermin and peppermint tea ? And a hot water bottle on your stomach ? i expect you have probably done all this. I can imagine tights cutting into your stomach, poor you. x

 

[WilmaHun]

In the middle of a massive flare at the moment, no idea what's triggered it. I was going really well for a few weeks as well

I just feel horrendous. Stomach cramps, bloated so all my clothes feel uncomfortable, not sure what's safe to eat and what's not. Even though I'm starving hungry I feel so anxious to eat. This is horrendous

 

[Blue raspberry slush pupp]

This is the bane of my life! Even at my slimmest this could leave me looking like I was pregnant!
I’ve read that colonic irrigation is good for it and am seriously tempted...anybody tried it?

 

[iloveanimals]

Im not sure about that , your stomach is so sensitive it could possibly irritate it even more. x

 

[Blue raspberry slush pupp]

Im not sure about that , your stomach is so sensitive it could possibly irritate it even more. x

Yeah that’s my worry,I don’t want to make it worse but I’d love to feel empty haha!! Sorry

 

[WilmaHun]

Is anyone on here also a member of the IBS Network or similar forum? I bought one of those cant wait cards off there, and a radar key for the times you're absolutely desperate but touch wood I've never had to use them yet!

 

[iloveanimals]

Its ok i know what you mean. I dont know what to suggest though apart from the things ive already mentioned. Im sorry you are suffering x

 

[Hello Kitty]

I have Crohn's, I've had it for over 10 years. Before diagnosis and about a year or so later it was horrific. After months of being on steroids and Pentasa, I went into remission. I've had small flare ups since and maybe 2 major ones since then but mine is very well treated and my consultant really is amazing. I am on Humira injections.

 

[it’s not been changed?!]

In the middle of a massive flare at the moment, no idea what's triggered it. I was going really well for a few weeks as well

I just feel horrendous. Stomach cramps, bloated so all my clothes feel uncomfortable, not sure what's safe to eat and what's not. Even though I'm starving hungry I feel so anxious to eat. This is horrendous

I feel ya. When nothing has triggered me for ages, I almost don’t want to think about what would happen if something did because I feel like I will jinx it!
A combination of not going to the gym and a bit of bloating from what I suspect was what I had for my tea last night (grr ) and stress at work for the last couple of weeks, I’ve been fidgeting at work all morning because my skirt feels tight across my lower stomach.

 

[Lulu Goss]

Is anyone on here also a member of the IBS Network or similar forum? I bought one of those cant wait cards off there, and a radar key for the times you're absolutely desperate but touch wood I've never had to use them yet!

The toilet while you’re out situation is one of the worst parts of it I think. Going out where there aren’t any toilets like parks, or places where you can’t quickly get to the toilet (bars, festivals, anywhere busy really) makes me feel so anxious. I feel like even if I’m not unwell at that time, I still can’t relax at places until I know where the toilet is and that it’s there if I need to use it.

 

[it’s not been changed?!]

This is the bane of my life! Even at my slimmest this could leave me looking like I was pregnant!
I’ve read that colonic irrigation is good for it and am seriously tempted...anybody tried it?

Touch wood, I’ve not been constipated for quite some time, but when I have that awful dead weight in my stomach when I am constipated makes me consider a colonic!

Spoiler: Too much info

sometimes when I have gone to the toilet, I don’t feel like I have properly been/finished I guess I just need to eat more fibre and drink more water but too much fibre can make me worse!

 

[smellsofbiscuits]

Hello, I have found my people *waves* I was diagnosed with IBS in my late 20s but had stomach issues for years before that. It definitely seems to be triggered by stress, hormonal contraceptives and a bit of what I eat.

The only times I have been truly IBS free is when I've been pregnant. My midwife did say this is quite common but they don't really know why. I also stopped using hormonal contraceptives after my youngest was born and haven't had an attack since then. Not being at work helps a great deal too as I can run to the loo when I need to (toddler permitting!).

 

[Blue raspberry slush pupp]

Touch wood, I’ve not been constipated for quite some time, but when I have that awful dead weight in my stomach when I am constipated makes me consider a colonic!

Spoiler: Too much info

sometimes when I have gone to the toilet, I don’t feel like I have properly been/finished I guess I just need to eat more fibre and drink more water but too much fibre can make me worse!

Oh yeah I get that too! The days I do feel like I’ve gone properly I feel so fresh like I have a spring in my step