Rectal bleeding for years, and no closer to finding out what's wrong...

[PrickleDad]

I'm a 29 (nearly 30) year old male that's been suffering with rectal bleeding for around 7 years. This is an on and off symptom which can last for a week to a month at a time with pauses in between. I get around 10 of these of a serious nature a year.

I've had dietitians, colonoscopies, flexi sigs, CT with contrast and all sorts of prods and pokes. Nothing has yet been found.

On occasion I'm taken to hospital via ambulance due to severity of accompanying abdominal pain that is excessive and feels like razor blades moving within me, a doctor always comes round, sticks their finger (...) and while washing blood off their finger, announces that there is no sign of bleeding.

I've been offered very little in the way of pain management, or control. We've found no triggers for the attacks, and I've been tested for IBS, IBD, crohns, celiac disease etc etc and nothing.

I'm a bit lost as to what to do.

Worth noting, I had a serious case of appendicitis when I was younger, which caused me to lose a significant amount of intestines (around 7-10 feet of small) as well as melting holes in my stomach and a couple of other organs. Scarily, no follow up has ever been done for this, and it's been 19 years!

Pretty sure this is short bowel, but i have no idea how to make anyone listen

Does anyone have any idea what I should be investigating, or even how to get it investigated at this point, at such a loss.

[Grateful71]

Oh this sounds awful and really tough no wonder you are frustrated and looking for answers 😔 would you be able to ask to be referred to a gastroenterologist/colon specialist or be in the position to pay privately to see one? I can only think that such a major operation when you were younger must have had an impact on your digestive system...how could it not. I hope you have the strength to keep fighting for your right to get a clearer diagnosis, you are as deserving as anyone else to try and live a more pain free life.

[PrickleDad in reply to Grateful71]

I've been under a gastroenterologist for a few years, who has recently said that there is nothing further that she can do.I'm meeting with a new consultant next week, and I'm sort of trying to find out what this could possibly be and see if anyone else had suffered in the same way, so I might be able to push the doctors.

Hopefully something is found that they can fix

[Onwardsandupwards7 in reply to PrickleDad]

Hi Prickledad, definitely worth a second opinion. As the saying goes, a persistent problem needs you to be persistent to get an answer. It's very frustrating, but keep going and I hope you get a proper diagnosis soon.

[Grateful71 in reply to PrickleDad]

I think knowing what's going on can go a long way to help manage the emotional side of illnesses. There may not be a 'cure' but if you knew what was going on you might get find a way to work with some of the symptoms and get some relief. Very best of luck and maybe let us know how you are doing.