To be fucking exhausted with this

[Theimpossiblestrawberry]

Sorry for swearing, and sorry I know this is tmi but I’m just desperate at this point

I suffered badly with IBS in my early 20s. I used to have awful cramps, diarrhoea, occasionally blood. I had multiple stool tests and then had a colonoscopy and endoscopy which was clear so I was told it was just IBS. I was under a dietician who eventually said there’s nothing more we can do because I tried quite literally every elimination possible, every diet possible but it still flared up. They tried to refer me back to gastro but they declined it on the basis of its just IBS. I still had the symptoms but learned to live with it and eventually it seemed to get better

it quietened down for a few years but over the last year or so my bowel symptoms have been horrendous. It’s different now because it’s in the morning mainly and during the night- to the point I’ll wake up howling in pain with the cramps and I’ll be woken up with them and with needing diarrhea. But I’ve also had a lot of bleeding where previously that was rarer. But when I tried to get referred back they declined and said it’s just ibs again and they’ve already done a colonoscopy a few years ago

I don’t know what to do now, or whether this is IBS or not, but I just hate my life so much with it. Today I felt fine, had breakfast, drove to work and suddenly 15 minutes into my drive was hit with cramps and the need to have diarrhoea NOW. I nearly didn’t make it but managed to get to a toilet in McDs and had the most awful diarrhoea I’ve had in a long time. It was completely bloody- NOT just a smear of blood when wiping like from a fissure or pile, the entire toilet bowl was filled with red blood and the diarrhea itself was bloody. I sorted myself out, went back in the car, drove to work and burst into tears because I am so fed up of this all

does anyone have any advice or guidance on what I could do or what this could be? I just don’t know what to do from here because I can’t get anymore help on the NHS and prev tests were all normal I just don’t know what this could be or whether it’s just IBS, but I’m so exhausted with it all and fed up

You need to go back and insist that there is further investigation- that is NOT just IBS.

Totally this, and if it happens again with that much blood take a picture and show it to the doctor. That is absolutely not just IBS

We're biopsies taken from your colon? Have Chrons disease and ulcerative colitis been definitely discounted? Both poorly diagnosed.
Also, take action to reduce stress. If on leave from work and symptoms get better, could be stress
Good luck

I'm not diagnosing you but that sounds like IBD. Do you have fatigue too? I have bouts of diarrhoea with blood and I have ulcerative colitis (IBD).

Definitely take a photo next time OP. I had to do this with my husband- he has ulcerative colitis

My advice is this. Go to a GP and say: I am now regularly bleeding when I have a bowel movement. Please send me for investigations.

If they refuse, stay seated and say: If I am fobbed off and it turns out to be cancer or any other serious disease that should have been picked up earlier, I will have to consider legal action. We need to rule these out. What tests would you normally advise for people who pass blood with every stool?

i actually took a picture today (as gross as it was) but figured it would be good to have as proof!

what I don’t get is they always told me you DONT get bleeding with IBS, yet when I have episodes like this I’m told it’s just IBS. Just makes no sense at all

That’s what my dads ulcerated colitis was like.
also very similar to my diverticulitis symptoms. Glad you’ve taken a photo to take show them, it mustn’t be left, a few years is a long time, I fear your being brushed off because your young!

You need to go back to your GP with the photo and say the blood is not normal, you're in agony, you're desperate for help.
If they don't refer you, next time it happens go to A&E (be prepared for a miserable wait)
It does sound like Ulceritive colitis unfortunately. But with a diagnosis you can get relief.

If your GP refuses to refer you again ask them if they'd tolerate being so ill & incapacitated regularly, with no investigations done. You need a proper diagnosis to receive proper treatment. Good luck x

I had this and was treated as having IBS for 10 years. It turned out to be ulcerative colitis only diagnosed when the bleeding got severely worse. Dont give up insist on a second opinion.

Agree with everyone else, this is NOT IBS, I have IBS and have never had blood like that and it's extremely concerning that they are trying to fob you off.

Also I'm really sorry you're going through this, urgently needing the toilet constantly and the worry of it happening is something that people really underestimate, it affects your life so badly.

How is that ulcerative colitis diagnosed?

Because my dad has the same problem and he's had countless colonscopies and MRIs and other scans and they havent really given a definitive explanation, there was some muting of diverticulitis but nothing definitive.

Thank you so much. Honestly you’ve summed it up perfectly- it’s so debilitating and my life is dictated around where the nearest toilet is. My commute to work is about an hour and i literally have every fast food outlet/supermarket on the way mapped out in advance because i never know when these symptoms will hit. Yesterday was particularly bad and the blood was actually frightening because i know IBS doesnt cause blood and certainly not to that level.