Ibs, what does it feel like

Comfyblueslippers · 2023-02-25T16:48:18+00:00

My teen has been diagnosed with ibs and he said how much it hurts and its stops him going to places due to the pain We are in constant visits to the Dr so medically we are doing what is best for him but for those of you who have ibs, can you describe the feeling of pain he might be in. I believe he hurts, but he can't explain it and I would like to understand more they type and level of pain he may be feeling so I can help him and understand him. If you had ibs in year 10, could the pain stop you from going to school or playing football wirh mates at the park?

Xandarien · 25/02/2023 16:57

When I first developed IBS (as part of the fun of having a genetic connective tissue disorder) I appreciated for the first time how someone could be in so much pain that they genuinely didn't want to live anymore.
Uncontrolled IBS is some of the worst pain I've ever experienced as it lasts for hours. If I dislocate a joint it's a sharp acute pain that quickly goes away when I relocate it. IBS (and GORD as I'm lucky enough to have both) give you pain that stays for hours until whatever you've eaten has resolved or that loop of bowel has stopped spasming.

belimoo · 25/02/2023 17:00

It can be excruciating and can absolutely stop you from doing things. It's hard to understand how something benign can hurt so much. At my worst I've been pretty much writhing in agony. It can impact more than just my stomach too - if I have a bad flare up it can make me feel physically ill in myself.

belimoo · 25/02/2023 17:02

In terms of the type of pain, I imagine it varies but for me it can feel like I'm being stabbed by a knife. I also feel extremely bloated like my stomach might burst.

Original poster

Comfyblueslippers · 25/02/2023 17:11

It's to hard to help when I wasn't sure if the pain was like a ache that you can get on with the day or a pain that really stops you going anywhere. I feel for him having to deal wih this at such a young age.

I would worry about how much school he will miss.

Any tips for the pain we've tried various tablets and sachets from the Dr and tried to eliminate food groups but no luck yet.

OP posts:

Xandarien · 25/02/2023 17:17

It took several weeks of Laxido (Movicol is the other one) to get it initially under control for me personally, and then working out what foods caused issues.

Some people also use an anti-spasmodic i.e. Buscopan.

cocksstrideintheevening · 25/02/2023 17:32

Depends if D or C. I am D and it can be debilitating in a flare up that IhVe to be near a toilet, the pain is excruciating but it passes quickly of that makes sense.

HowdoIgetbacktothe80s · 25/02/2023 17:40

I have had IBS for 25 years. I have been writhing around the floor in agony with my IBS pain, it’s awful, it is anything from a full, bloated wind pain to a feeling like my insides will burst, it’s a difficult pain to describe and each IBS sufferer experiences it differently so there is no benchmark. I don’t have a low pain threshold and had both my dc without any pain relief.
I truly feel for your ds, IBS has ruined my life.
Has he tried the low fodmap diet? Ask the GP to refer him to a dietician as it’s quite a hard diet to follow.
Has he been prescribed an antispasmodic medication such as mebeverine or alverine citrate? Both help relax the colon and intestines.
I also recommend the Nerva app, it’s a gut directed hypnotherapy which again has proven to help sufferers.

HowdoIgetbacktothe80s · 25/02/2023 17:44

Xandarien can I ask, do you have EDS? I’ve been pushing at my gp for years to see if there is a connection between my gut issues and joint issues. I’m certain I have EDS or at the very least, joint hypermobility.

Xandarien · 25/02/2023 18:28

HowdoIgetbacktothe80s · 25/02/2023 17:44

Xandarien can I ask, do you have EDS? I’ve been pushing at my gp for years to see if there is a connection between my gut issues and joint issues. I’m certain I have EDS or at the very least, joint hypermobility.

Yes I do! I have hEDS. It's something missing on the EDS diagnostic checklist imo, comorbidities like that aren't taken into account even though most people with hEDS have GI issues.

Original poster

Comfyblueslippers · 25/02/2023 18:38

Thank you all for sharing. It seems to be a mix of C and D as it changes from day to day. The other day he described it as something was going to explode as it hurt so much (we did rush to a Dr that day just in case) it's so hard as I want to give him the time he needs but still need to get him to school.
We've removed lactose and high fat foods with no change, a full fodmap is the next step.
Thank you for the names of the medication you find helpful as I can take those name to the next Dr app. and ask his opinion on them.
I think I will try and ask the Dr for consultant help next.

OP posts:

fruitandfibreg · 25/02/2023 21:31

I've have IBS and it's brutal. I pretty much always have a hot water bottle attached to me- so if he hasn't tried one please try they're a lifesaver.

fruitandfibreg · 25/02/2023 21:32

When I was first diagnosed they gave me a muscle relaxer and buscopan which helped xx

Original poster

Comfyblueslippers · 25/02/2023 21:47

Buscopan doesn't seem to hit it, he also tried laxido but I wasn't sure as it made him go from constipation to diarrhoea with no normal in-between.
Haven't tried a hot water bottle, we have a microwave one so we'll try that.
It's so hard when I can see him hurting but I can't give him weeks off schools at a time, I hate having to send him to school like that, especially now i know how much it can really hurt.

OP posts:

abbs1 · 25/02/2023 21:54

Has he tried going gluten free as well? Mine is massively triggered by gluten and dairy. When I avoid it, it's much more bearable but if I eat any the cramps are horrendous before running to the toilet. I have cramps and wind so bad it feels like my insides are going to burst and I couldn't walk.
Also anything greasy made it 10x worse. Buscopan helped me a bit but mainly keeping a gluten and dairy free diet.
I hope he gets some help as IBS is extremely painful.

GG1986 · 25/02/2023 22:26

I have had IBS since I was a teenager, when it flares up it can be so bad that I am afraid to leave the house in case I shit myself. I get diarrhoea and the cramps that come with that are really painful until I have had a bowel movement. The pain causes me to get hot, sweaty and feel dizzy. Definitely look into the low fodmap diet. Hope he can find a way to manage it as it can be so unpleasant and cause a lot of anxiety.

ScaredSceptic · 25/02/2023 23:12

Different people have different triggers, but one of mine is food rich in fibre. I used to eat bran flakes for breakfast then eat fruit during the day at work, and have a salad for lunch. I'd be in agony by the end of the day. Eventually it dawned on me this didn't happen on a weekend, when I ate differently.

I now avoid high fibre foods, fruit, and salads (I'm fine with cooked veg, but raw salad veg just goes straight through me), and my IBS now only troubles me occasionally rather than every day. Not ideal as of course as it means I'm missing out on some healthy options, but it's better than being in agony every day and worrying about being near a toilet.

cocksstrideintheevening · 27/02/2023 13:37

ScaredSceptic · 25/02/2023 23:12

Different people have different triggers, but one of mine is food rich in fibre. I used to eat bran flakes for breakfast then eat fruit during the day at work, and have a salad for lunch. I'd be in agony by the end of the day. Eventually it dawned on me this didn't happen on a weekend, when I ate differently.

I now avoid high fibre foods, fruit, and salads (I'm fine with cooked veg, but raw salad veg just goes straight through me), and my IBS now only troubles me occasionally rather than every day. Not ideal as of course as it means I'm missing out on some healthy options, but it's better than being in agony every day and worrying about being near a toilet.

Same here, brown bread, seeded bread, whole meal are a massive no go. Plastic white bread is fine.

Zebee · 27/02/2023 20:57

Has he has colonoscopy and endoscopy to rule out anything else. IBS should be a diagnosis of exclusion so need to make sure it isn’t anything else.

MadameSzyszkoBohusz · 27/02/2023 21:36

A really bad IBS attack could feel as bad as severe contractions, IME.

Original poster

Comfyblueslippers · 01/03/2023 18:00

Had poo samples to check 2 things but no further checks due to his age and freaking out over the suggestions.

Interesting what you said about fibre as I've naturally upped the fibre as he gets constipation so I've moved to whole wheat bread, whole wheat pasta etc...

Think ill also look into fodmap diets

Ouch, comparing it to a contraction. I can't keep him off school daily but can't send him in with contraction pain.

Back to the dr soon for a follow up appointment

OP posts:

Favouritefruits · 01/03/2023 20:03

Loperamide is the only thing that helps me when I have a flare up. It is incredibly painful it stops me from doing pretty much anything it makes me feel very hot but shivering and sweaty, my lower stomach churns away when I go to the toilet it helps but within minutes the pains back and I need to rush again and again…… Try a low residue diet, white bread, pasta and rice are best and veg rather than salad items.

royalrecording · 01/03/2023 20:19

Fodmap is hard but 1000x worth it. Google a basic list of low and high fodmap foods and get your son to look at it, he may immediately spot surprising foods on there that are making him feel awful. Make him low fodmap food and snacks for a few days and it can help quite quickly. Porridge with lactose free milk for breakfast (a safe high fibre option), veg and rice stir fry for lunch and steak and eggs for dinner for example. Popcorn to snack on or some of the safe fruit options. It will hopefully relieve some of the pressure. It’s awful feeling like nothing is safe to eat and everything that goes in is going to do harm. It’s mentally very stressful which is proven to aggravate symptoms. If he can manage gentle exercise that would be good and also anything that reduces stress and can take his mind off things.