Unexplained severe left sided back and abdomen pain with bloody stools

[Calamity76]

Hi guys, first time posting here but hoping you may be able to offer advice or just talk about your experiences. I’m 46 always been healthy, the fit bit has been a bit hit and Miss over the years, but apart from prolapsed discs in my back I’ve never really been sickly. Until last November when my life was turned on its head. I noticed blood in my stool, but no pain proper freaked out. Saw GP has rectal exam no piles or fissures or masses but sent for urgent colonoscopy. During the consultation she asked about my bowel habits, had they changed… well yes, used to be a x1 a day girl but now was a couple of times a day and a lot looser sometimes borderline diarrhoea and the smell, like a rotten corpse, sometimes yellow and thin too, I’d also been a lot gassier and bloated to the max, I did however put all this down to being premenopausal. Fast forward to the bowel prep, by day 2 I had a gnawing pain in my back near my left kidney and by the day of the colonoscopy it was whomping pretty bad. Had the sedation, not sure why they call it that as didn’t have any effect on me at all, the pain was excruciating, not in my stomach but my back. She stopped asked if I’d ever had an ulcer, NO, or a hysterectomy No… failed colonoscopy and CT colonoscopy requested. The pain over these past few weeks has been the most severe pain I have ever felt in my life… I could hardly move, it felt like my insides were being rinsed in acid and the spasms in both my back and my upper left side prompted the GP to send me to a&e suspecting pancreatitis. A&E left me for hours and sent me on my way with a rushed diverticulitis diagnosis. No explanation, no here’s what you do now, just codiene. Codiene made me constipated so took lactose as not going made the pain and bloating worse. Again made me feel like my insides were being twisted, I genuinely felt like I was going insane with pain so Back to A & E this time told it was just back pain!!!! Given morphine… back to GP who still has no idea why I am in so much pain. I was on 7.5mls morphine and diazepam just to take the edge off. They tried tramadol, buscopan, and now amiltriptaline, which has helped but the pain still throbs in the back ground. I still have morphine if it flares up. I have no appetite, when I do eat maybe some toast, Jacket potato it’s straight through me. Had 3 lots of bloody diarrhoea last week. I’m now loosing weight, Whilst I’m writing this essay ( sorry ), I’m sat on a heated blanket as that helps with the pain feeling very sorry for myself. I’ve googled various causes so many times, I’m scared to look up my symptoms again. I’m worried it’s IBD or worse. I have all the symptoms but no evidence as The CT scan was clear although GP said they couldn’t view all the colon as wasn’t fully empty…. You’re kidding right… the stuff you take works so unsure how it could be, and how can they call it all clear if they didn’t see it all. No mention of polyps, inflammation nothing, pancreas was clear as was spleen and gallbladder, so I’m now awaiting an MRI and gastrointestinal apt which has come through for July and GP has written back to Colorectal team for advice and guidance. I don’t understand what is going on in my body, but I don’t want to just keep masking the problem with pain killers. I can’t function like this, I have children and a job ( although I feel like that may end soon due to the amount of time I’ve had off since November). Has anybody ever had anything like this, I can’t be the only one. I just want my life back. Thank you for reading

[meadfoot]

I have had very similar issues for years. I get dreadful flare ups, in the midst of one right now so laying on the bed with a hot water bottle. Had more tests than I can count and still no diagnosis of note.

Had my gall bladder removed five years ago today and all that did was cause my bowel to go haywire. The number of times I have felt beyond dreadful and afraid are too numerous to mention. Still no proper help. A and e throw painkillers at us then send us home. Thanks a lot but no thank you anymore. My latest letter from gastro phone app says not to expect much in the way of relief, great, cheers for that.

I so hope you find a proper diagnosis but dont know where to suggest you turn to for help unfortunately. Thinking of you and sending my best wishes, I know exactly how you feel. Dont give up fight for a diagnosis and treatment.

[Maureen1958 in reply to meadfoot]

Hi meadfoot

You may want to take a look at BAM (Bile Acid Malabsorption). See link below:

gutscharity.org.uk/advice-a...

BAM is often associated with gallbladder removal.

All the best, Maureen

[meadfoot in reply to Maureen1958]

Thank you Maureen I will take a look. This gastric stuff is ruining my life. Hope all is ok with you.

[C34185]

Hi. I get similar pains across my lower back area just as you're describing. Have you looked at a possible food intolerance ie ibs? I did the fodmap diet to help me. With regards to the back pain I've found peppermint to be good at settling my back pain. 1 capsule a day and mix peppermint cordial with my daily water intake. Hope you get sorted soon.

[Steph7]

Hi Calamity76

So sorry to hear you’re going through this. Not being heard properly is half the problem. I had very similar pain all on my left hand side, it didn’t go to my back but it was all in my abdomen, this went on for about a year. Going back and forth to my gp being told it’s periods (I thought signs of Perimenopause to begin with as I’m 42) so I was sent for ultrasounds, then they thought it was gallstones.

 In this time I also went to a&e a few times with the extreme pain and sickness and they just gave me stuff for acid reflux.  I felt like every time I went to see the gp I had to give them suggestions as to what it could be (hours googling stuff!)as they just weren’t helpful or clued up. After spending 10 hours in a&e one time the next morning I made yet another appointment at my gp surgery and told them bluntly that I wanted to be tested for crohn’s as my symptoms were very alike. Even then she questioned me like I had two heads as to why I wanted to be tested.

Fast forward a couple of weeks and the gp called me to tell me that I definitely had IBD and it’s either crohn’s or colitis. I remember her actually saying to me “you sound shocked” I told her that this had been going on for so long and no one has been listening to me, so I’m not surprised something was picked up. She arranged for a colonoscopy, I had the sedation but the pain was horrific and I had to tell the doctor how much he was hurting me. They gave me more sedation and I remember he kept apologising to me for the pain. The colonoscopy wasn’t even fully finished because of the pain but also because they couldn’t go any further. After recovering for a bit I was told to get dressed and go and wait in the side room. I knew then that it wasn’t good news. The doctor came into the room and kneeled near me and my worst fear was confirmed. They found a tumour and they think it’s cancer. I had an appointment through pretty quick for a ct scan and to see a consultant. I didn’t make my appointment with my consultant as I collapsed with yet more horrific pain and sickness and was taken to a&e, that night I had emergency surgery to remove a stage 3 tumour the size of a grapefruit. It had also spread to one of my lymph nodes and I needed chemotherapy. I was very lucky it was caught when it was as it very nearly perforated my bowel.

 My gp surgery have admitted negligence to the fact that not once was I offered a fitt test right at the beginning. Even though my cancer tracker in my bloods was slightly high too they didn’t act on that either. My other symptoms came later, weight loss and change in bowels. But my main symptom from the start was abdominal pain. I hope my story isn’t scarring you but if you haven’t had a fitt test demand one right away. Go with your intuition and be demanding if you have to be. I wish you all the luck x 

[Calamity76 in reply to Steph7]

Oh Steph thank you for replying to me, and thank you for sharing your story. Yes, I do feel like no one is listening to me. I too believe I have IBD, I have spoken to so many GPs, me even mistook what I said and wrote low back pain when all I did was say that this pain is total different to when I slipped my discs in my lower back, so basically I was ignored for almost a week before they called me in again. They made me wait an hour and a half in the waiting room in agony. I was sat sobbing in the waiting room and by the time I saw her I couldn’t even sit down. One GP even asked me what I think is wrong with me, WTF!!!. So I asked how I can have a clear CT when they couldn’t see everything. That’s what scares me. I had my MRI date through, was told it would be full body but it’s a thoracic MRI!!! It’s not nerve pain FFS. This pain was so severe like you it made me sick, I had a fever then chills, your body doesn’t react like this unless there is something wrong. Im so very please they caught yours in time and really hope you are on the road to recovery x

[Hidden]

What awful tales of woe!! My excruciating pain was because of a gallstone-one of if not the worst pain I have experienced ! Colonoscopy can only look at the descending large bowel anyway, so as others have said go with your intuition and demand further tests. If necessary, break down and cause a scene! A&E seems to have become a temporary stopgap for most things these days. I hope you get some proper answers soon.

[Calamity76 in reply to Hidden]

Hi Needle woman, thank you for replying. Oh I’m demanding other tests alright. They are sending me for an MRI, was told it would be full body but it’s come through as thoracic. GP isn’t in today and apparently only she can read my notes and say why? I’m just sick of being fobbed off. I wasn’t aware the colonoscopy could only see that part I thought it went all the way round, thank you for that and I hope I get some answers soon too