Bowel issues.

[WarriorPrincess24]

Even since I was a child I remember always having issues with my bowels. Frequently waking in the night with terrible stomach cramps and urgency to go the toilet. I also suffer with issues now. Intense stomach pain that is only relived my going to then toilet, when it becomes really intense it lasts ages and I often struggle to actually go the toilet on these times. As soon as I wake up in the morning I'm always rushing to the toilet, if I don't go I'm in horrendous pain. I start sweating and my heart starts racing and I get hungry feel bloody awful like am dying! I always thought that pain relived by opening your bowels was normal and everyone had it, my husband says it's not and hes never had that type of pain. I was tested for celiac and my GP says I dont fit he criteria for chrons or colitis and he isn't sure is IBD either. So what is it? And is it normal? I have no concerning symptoms no weight loss etc. and as I said I've had this for years since I was about 12! I post this after a night of being awake and stuck on the toilet! Feeling terrible and fed up and need answers! Just to add the urgency is always there, every day when I wake up,,! But the terrible stomach cramps and loose bowels are less frequent and a few times a month maybe. Also last night we had takeaway pizza which we wouldn't normally have, everyone else is fine so I'm wondering if maybe eating a large fatty meal has triggered it this time or is it coincidence?

Try keeping a food diary and see what triggers it.
Fwiw I don’t have any issues like this but the first (and last!) time I had a Domino’s pizza I had to dash to the toilet within half an hour of finishing it. I assumed too much grease, everyone else was fine.
Maybe you are lactose intolerant or something? Maybe tried the FODMAP diet to see what your triggers are, or ask the GP for a referral to dietitian so you can do it with their guidance.

https://www.hopkinsmedicine.org/health/wellness-and-prevention/fodmap-diet-what-you-need-to-know

Go back to GP and ask for a gastroenterologist referral - this is not normal. Chrons/colitis is IBD.
IBS diagnosis is given when all tests are negative.

Ask for a referral to gastroenterology. I've had all the tests, waiting for one more scan to check for bile acid malabsorption. If this is negative then consultant said its IBS. I am on amitriptyline now, which is helping. The Dr could also run some stool samples, I had calprotectin sample done and it was over 600, so they did at one point think it was crohns, but the colonoscopy came back fine. Don't continue to suffer.

Follow a very simple diet with a very few "safe" foods from the low-Fodmaps food list e.g. white rice, chicken, carrots. After 5 days see if symptoms are less. If it's still just as bad it's unlikely to be anything you are eating but you could try another 5 days with a different small selection, just in case you happened to choose something you are sensitive to. If symptoms reduce you can then gradually introduce more foods from the low-fodmaps list and see if anything triggers symptoms to return. If you can eat all low-fodmaps foods safely you can start testing your gut with high-fodmaps foods.

It's interesting that this started when you were 12. The bowel is right next to the uterus - is it worse when you have a period?

No not particularly. I've tried all sorts of things over the years to try and identify what causes it and it's not one singular thing I can identify. I'm 32 now so it really has just become normal for me but I can't give it's not normal and not everyone feels that way when they need the loo if you get me.

Interesting, I do have gallbladder issues but these were only diagnosed two years ago after the birth of my son. I don't think it's related because I've been like this such a long time.

I've tried the avoiding trigger foods, eating white rice, chicken, vegetables whole grains etc even gluten and dairy free and I still had troubles.

Also I have an anxiety disorder and OCD and my GP says my bowel issues could well be stress and anxiety related.

You could ask for a trial of amitriptyline, it doesn't work for everyone, but it's definitely helped me, helps you sleep too. It's only a low dose of 10mg. Research it before asking. X

I'm having very similar problems and have been like this for 5 years now. It's really taking its toll. @GG1986 my gp has suggested amitriptyline, biut I've been reluctant due to the side effects and not being able to get up in the morning but I guess 10 mg is a very low dose. Do you have diarrhoea, has it helped? This is my main problem and the urgency, it's very stressful.

I get this and Ive been told its stress related.

I'm quite an anxious person and my nerves are in my gut.

I get the nausia when i need to go too.

I also have a rectocele for added fun (not).

I'm 56 now and havent found a cure.

Yes I had Diarrhoea and urgency. I take it at 7.30pm and wake up fine. It affects people differently apparently so you have to try it to see how you get on. Yes it's helped, I've gone from having diarrhoea 5 days out of 7 to maybe only once every 2 weeks, it's really helped.

Do you get all hot and sweaty and heart racing when you need to go? It makes me feel terrible.

Thanks @GG1986 think I might give it a try.

OP when I have an attack I get the sweats, feel sick and have a racing heart. It's utterly miserable and it makes me feel ghastly. I truly sympathise.

Thanks, it's comforting to know it's not just me who feels that way!

I also get the shakes, sweaty and heart racing and bad pain where I feel.like I'm going to be sick.

Not hot and sweaty but my pulse quickens and I feel warmer (due to pulse/heart rate going up).

It could be a 'histamine dump'... late at night and early morning are the most common times for it. Might be worth keeping a food diary and see if it happens after eating high histamine foods

This sounds like HYPERthyroidism. Get your bloods checked

I had my thyroid checked several times and apparently it's normal.

It's started again just now, I've eaten clean today and had nothing I can think that would trigger it. I had lean beef burgers this eve 5% fat and my stomach is started to be painful. I didn't sleep last night because I was up all night in pain and on the toilet and I feel like I've another night of it tonight 🥴

OP has your HP sent you to be properly investigated with colonoscopy etc. Just because he doesn't think you fit the criteria for IBD, it should still be eliminated. It definitely sounds more than IBS especially if you are having to get up in the night. I would maybe speak to a different doctor and ask for a referral to gastroenterology. After all this time you deserve proper investigations. This is no way to live your life.