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The story so far...& advice sought

Hello all - settle in for a long tale!

I was diagnosed with IBS some 26 years ago at the age of 17 after noticing blood in my stool. One colonoscopy later and a quick course of prednisolone and predfoam and all was well with the world. Two years later whilst at University I had another flare, this time more severe which lead to me ‘dropping out’ and returning home. Cue another scope and more steroids.

This cycle of remission and relapse continued as I’m sure it does with most of us. I spent several years on Asacol, tried alternative therapies and generally tried to get on with life. By that point I had been diagnosed with Crohn’s Colitis because I guess I just like to be different! I managed to go back to University to finish my degree in 2008 before having my worst experience yet in 2010.

I started with what seemed to be another flare - bleeding, cramping, urgency...you know the drill. I saw my GP who prescribed a course of oral steroids starting at 40mg with the intention of tapering off as the flare calmed down. Only it didn’t calm down. I was going to the loo upwards of twenty times a day, couldn't walk upstairs without stopping halfway, and panting at even minor exertion. After several weeks the GP sent me to the local hospital to be admitted where I was given IV steroids. I spent a week on a ward where I was diagnosed with moderately severe disease in the colon, before being discharged having lost 40 pounds over the space of a month. I was completely knackered and had difficulty doing anything. Luckily, I was on the summer break from Uni so that meant I could take time to look after myself.

Post discharge I ended up under the care of an excellent gastroenterologist. We discussed my treatment plan and I was put on azathioprine which did the trick albeit with minor issues. There was one point when infliximab was discussed but was not needed as the symptoms cleared up. In 2016 the gastro told me I had achieved “remission in a true sense” and I was discharged back to my GP. Oh, and I finally got my degree!

So, that brings me to today. Since 2016 I have had little or no problems with my bowels but around two months ago I started to notice blood in my stool again. I thought it might pass and, being male, initially ignored it. The amount of blood increased to soaking the tissue when I wiped and turning the water pink. Some nice big clots appeared too. A trip to the GP awarded me with a five day course of oral steroids which didn’t even touch my symptoms. This felt different though, so I went back to the GP the following week who referred me for tests for colon cancer on the urgent pathway.

Two weeks later I was seen by a surgeon who arranged for bloods to be taken and a CT scan that day. He phoned me that evening to tell me there was no evidence of cancer which was such a relief! He said that there was no evidence of active disease on the CT scan either. Bilirubin levels were up, which he found odd but said he would make a referral for a colonoscopy and a gastroscopy as we needed to find where the blood was coming from. I really couldn’t fault the service I received.

Now, I’m still bleeding, constantly and in not insignificant amounts. I have terrible joint pain. I’m going to the loo eight to twelve times a day, mostly passing nothing but blood. Some days I pass no stool. Some days I have diarrhoea. But I’m absolutely exhausted, fatigued beyond belief. I’m back to struggling to walk upstairs and struggling for breath if I do anything remotely energetic (like walking the 50 yards from the car park to the office). Work have been fantastic and are allowing me to leave early every day, simply because I’m too tired to be of any use come mid afternoon, but the rumour mill is in overdrive with colleagues noticing weight loss and me generally looking like crap. Still, if anyone asks, I’m happy to give them the details!

I’ve had to chase the colonoscopy appointment and I’ve been told it’s been booked for 4th June. By the time that comes around, I don’t know what state I’m going to be in. My old gastro team don’t want to get involved because I’ve not been referred to them. The new gastro team won’t do anything because they’ve not diagnosed anything. The GP won’t do anything because they’ve referred me to the hospital. So I have no idea where to go from here. I don’t want to burden A&E but I’m going to have to do something. My only thought is to try to get an appointment with the GP tomorrow and beg and plead for them to send me straight to hospital as happened in 2010 (and as one gastro team suggested today by email).

So, sorry for the wall of text (which would probably help some of you sleep :boring:) but I suppose I’m wondering what other people would do in my position?
San Diego
If you can afford it, I would go to a GI in private practice and see about getting a colonoscopy right away. You need a diagnosis so that they can get started on the right therapy.

As for your fatigue, have they run any blood tests? What is your hemoglobin? Have they run iron studies? With constantly losing blood I'd be very surprised if you weren't very, perhaps even severely, anemic. They could start you on iron therapy right away - while the GI diagnosis is still pending. Or you can start non-prescription iron tablets on your own while waiting for the docs to act. The docs may even choose emergency transfusions if your hemoglobin is low enough. In any case you don't need a final GI diagnosis to battle the anemia/fatigue. Getting that under control might make the wait for the NHS colonoscopy more bearable.
Pretty much second that, I would go to doctor if you can get a very quick appointment, ask for urgent blood test due to constant fatigue (thinking about severe anaemia possibly) and mention to them the extent of the bleeding and whether safe to wait til early June or not - might depend on the blood test of course but they should get that overnight. If doc very worried he might say go to A&E for blood test in which case they'll know result within hour or so.

Good luck. And congratulations on your degree.
I would go to gp asap to ask him to admit you to the hospital. Failing that go to a&e your not a burden so don't think it. Your not well and the right place to go if you feel as though your getting worse is a&e. Your body will be having a tough time trying to replace that amount of blood loss, your body can only make so much and it seems like your losing more than it can replace in time. I had a bout of bleeding very much like yours a few years back in my case it just got worse very quickly and my blood count dropped to 6 with a heart rate of 34 beats per minute (each beat was extremely painful)..I needed a long stay in the hospital for treatment to control the crohns and blood transfusions to get my blood count back up, it took me months to get my energy levels back up after my blood count had been so low. These days im very proactive about it and keep a very close eye on my blood count levels by having a blood test done every 8 weeks as I know how hard it is to get them back up once they drop so low. So please take care and don't leave it go much longer without some medical intervention.
Thanks for your comments - I appreciate the advice.

This all gets a bit strange. I phoned 111 yesterday morning to see whether I was suitable for going to A&E. Based on my symptoms they wanted to blue light an ambulance to me which I told them wasn’t necessary or warranted in any way, shape or form. They advised that I should go to A&E so I did.

A&E were excellent - they took bloods almost as soon as I got there and did an examination of my stomach. They also spoke to the gastro team who arranged for me to see a member of the gastro team on the Ambulatory Care Unit attached to A&E.

This is where it gets strange. All bloods came back fine - red cell count, white cell count, inflammatory markers all within normal ranges. I was seen by a practitioner in the ACU who took a full history and toddled off to speak to the gastro team (turns out they weren’t going to see me then). I was discharged shortly after because, seemingly, there is nothing wrong with me. I have been promised that the scope would be brought forward which is one small victory.

I feel as though I’m not being believed about the amount of bleeding I’m experiencing. I was told somewhat offhandedly that if I experienced heavy bleeding ‘rather than just streaks on the paper when I wipe’ I should go back. Ok, so you’ve not actually taken any notice of the things I’ve said - I’m not imagining this! I understand that the bloods are normal but doesn’t that then raise more questions?

Sorry, that got into a bit of a rant there. I suppose the good thing is that the scope appointment is a bit closer.
Sounds like a good outcome to me - nothing seriously obviously wrong plus scope gets done sooner. I'm glad you went. Hopefully the scope will provide answers to the bleeding (stock up on reading material and soft loo roll if you've not had one before and plan to take the day off work before if you can as you'll be living on clear liquids and running to the loo as part of the prep).

I hope you get answers soon and good luck.