So sorry for this long post and the graphic image but I'm just feeling a little helpless and confused at the moment and was wondering if I could get some advice.
I've posted here before several weeks ago about suffering from stomach pains and needing to have a bowl movement after every meal. This started early October and started to get better 2 week in and now, my symptoms have improved massively. I can go days without any stomach pain or discomfort, I can eat without needing to use the bathroom or feel super bloated every time. Stools, pretty much normal and I haven't had diarrhea for weeks. The mucus had stopped as well. The last week or so, I've been feeling so positive and felt pretty much as healthy as before the symptoms started. That was until today... I felt a couple pangs of pain but like before, they were very manageable and would only last a minute or less, nothing serious at all but I also noticed the bloody mucus has come back. There was not much of it and even before it was only a small amount but still enough to get me nervous. When I first started getting bloody mucus/blood in stool, it was very subtle, never bright red or black and I would never see it when I wipe, I'd just see small patches of a reddish tint to the stool itself. Today after wiping, there was some faint pink mucus on the tissue. After reading many stories on here and on the web, it seems with conditions like UC, I should be expecting a lot more blood, accompanied by diarrhea and the other symptoms but I don't know if mine is just the start of it...
If you have experience with IBD, does this look/sound familiar to you? My GP suspects UC or Crohn's because my calprotectin scored around 1800. I've been put on the waiting list for an urgent colonoscopy, however I received a letter from the Gastro unit saying I will have a telephone consultation on the 20th instead. Not sure if it's the usual process to have a consultation before an urgent colonoscopy or if they have done a review and feel I don't need one and a phone call will suffice? I understand with everything going on, it might take a while for me to be seen but I just feel so helpless and stuck in limbo without any answers and word IBD hanging over my head every day.
I haven't lost weight, I don't feel fatigued and I'm rarely affected by the pain anymore. I know IBD symptoms can vary from mild to severe but I just don't feel like this could be a serious chronic condition? I'm hoping the blood is just haemoroids since there's such little amount of it and I tend to only notice it if it's my second or third trip to the toilet. If anyone can share their thoughts or experiences, it would be much appreciated.
Written by
RHCP
To view profiles and participate in discussions please or .
Bless you! Hope you are doing ok and hanging in there. Cant share anything on symptoms or diagnostics I’m afraid as still going through investigation stage myself but thought I’d share what I know on the process.
I too have had positive FIT (65) and high calprotectin (6000) with ab pain and change in BM (frequent urgent yellow stools) so got referred to 2WW to colorectal team by my GP on 14/10. Then I had the telephone consultation from the triage nurse from the colorectal team on 22/10 who is planning for colonoscopy and CT bases on raised FIT results as calprotectin results had not returned at that point). Been told despite the 2 week wait, due to covid backlog, it may take longer especially now with second lockdown. Urgent blood test done on 1/11 which they need results for before CT.
You are likely to need to be covid tested 3 days before colonoscopy and self isolate due to inherent risk of exposure of the procedure.
Being impatient me, I went private on 29/10 as got cover thru work. Saw consultant on 29/10 who did blood test and sigmoidoscopy same day, CT done on 2/11, gastroscopy and colonoscopy booked for 12/11 (only cos I requested it to be after 9/11). Pill cam as next step in case no cause is found.
Normally I woyld say use private for quick diagnostics if you have access but private hospitals could turn into NHS hospitals overnight due to covid where they would have no choice but to put all private patients on hold.
Thank you for your response! I'm so sorry to hear that you are going through the same thing but I'm glad that you have already been seen and have done some scans and tests already. I hope you get some answers soon!
I did consider going private a few weeks back but I wasn't sure due to the cost and in case I managed to get booked in soon, since I was told it was "urgent"... With lockdown no.2 I may have to continue this wait. I will come back and update just in case it helps someone else going through the same thing.
Unfortunately I haven't had a colonoscopy or even a telephone consultation yet😞😞😞 The consultant was meant to call me several weeks ago for a telephone consultation but never did! I called the secretary 2hrs after the appointment time and and she said she doesn't know why the consultant didn't call me either.
They then sent me a copy of the letter they sent to my GP, saying they tried calling but couldn't reach me on the number they have for me on their system, so will have to rebook my telephone consultation. I was by my phone all day waiting for the phone call but received nothing! What's worse is, I called the Gastro unit asking what number they have for me since it was supposedly incorrect and they said they didn't have a contact number for me at all!! I have no idea what's happening and I'm getting so frustrated! They have booked another telephone appointment with me on 8th Jan, I really hope hear from them this time.
I still get small amounts of blood every now and again but I'm noticing a lot of flat black flecks in the stool...not sure what it is. At first I thought it was dried blood from further up the GI tract but I'm not sure if it would present itself as small flecks? I also read somewhere that it could be parasite waste but it's just all guesses at this point 😔
You seem to be getting the same symptoms as me. In June I had a severe flare up and had blood in my stools afterwards. Calprotectin 6000, a previous one in September 2019 was 1016 and in February I had a colonoscopy which was normal. In between these episodes my calprotectin was 7 so something obviously gets worse at times although I'm troubled with less severe symptoms on and off. I've been told its probably a thing called ischemic colitis and told to wait until it happens again and go straight to hospital for another colonoscopy while I have it. I don't understand how I could do that as you have to prepare for a couple of days before.
Gosh, you must be frustrated! I love and appreciate our doctors but sometimes it just feels like they don't take us seriously or just fob us off. I looked up ischemic colitis and it says that it can sometimes heal and go away by itself, so I really hope that's the case for you!
Please look after yourself, wishing you all the best and no more flare ups!
Have you checked on possible parasites or bacteria as well? Your stool seemed solid, so it’s possible that inflammation such as gastritis or ulcer is the culprit. Food is still your best friend, try small amount of food. Are you eating raw foods like salad veggies? Or dairy?or beans? Those are stuff the stomach hates the most in every digestive problems. So what you are aiming is to reduce inflammation or symptoms, foods that will help you are plain strawberry that is mashed on a blender, don't overdo blending so the nutrients stays. Salmon, eat the fatty parts of it. Try on probiotic drinks or probiotic yoghurt and eat less ripe banana right after having the probiotic ,in the morning. Dont overdo eating these foods and neve ever allow yourself to get hungry as well as to get full. Your stomach should always have food to process so eat less and frequently around 6x a day. So it wont get tired and will strengthen. In few days , you will see an improvemnt.
Yes, raw salads are the worst food especially if the salads are not washed properly or are going bad or bad. They contain lots of microorganisms that can infect our guts and theyre hard to get rid of. Also when you are infected or u have sensitive guts, you cant eat raw salads too because they are not cooked so it’s harder for it to digest so it makes us bloated and produce so much gas that causes aches.it’s fibrous. And , because theyre not digested they travel fast , not be able to solidify so they turn into diarhhea or soft stool.
Thank you for replying! No I hadn't asked if they tested me for anything else, when I first spoke to my GP he only told me that they found high levels of inflammation in my stool and he thinks it's probably IBD. He gave me no other alternatives or information and just directed me straight to the receptionist to book another blood test (which came back normal). I will ask the Gastro team if they ran any other tests when I speak to them on the 20th.
I have been trying to eat as healthy as I can, I have cut out dairy and gluten just in case I'd somehow developed an intolerance for it. Since my symptoms have improved, I'm not sure if I actually have an intolerance and this has helped or if I'm just getting better in general🤷🏻♀️ maybe I should try eating it again to see if the symptoms worsen. I don't seem to have a problem with eating raw salad or beans and I have started taking probiotics supplements to get those good gut bacteria!
I did take a course of antibiotics (Flucloxacillin) 2-3 weeks before these symptoms appeared and I mentioned this to my GP who quickly dismissed it, (since apparently it wouldn't take so long for the symptoms to manifest) but on the information leaflet it said the side effects can appear anything from 2 weeks to 2 months after taking it. One of the side effects was also Pseudomembranous Colitis as well. However the doc didn't care for that theory and just said it's most likely to be IBD.
I would gladly take parasites, gastritis or ulcers over IBD. I have a family history of stomach and bowel cancer already so I really don't want to increase my risk of colon cancer as well since I know that can be the case with UC and Crohn's.
I will definitely take your advice on food and hopefully see more improvement.
Just to let you know, even gastritis and ulcer can cause cancer if left untreated. Ask for parasite test and h.pylori test. And where do the inflammation located? Still you have to eat a variety of cooked food , take it little by little, you’ll get bloated or have diarhea but u still need these veggies. So have a little bit everyday. Never eat raw foods. Or even fruits. But fruits like strawberries and blueberries are very important for you. Do u take probiotics and prebiotics in the morning?
I'm guessing from your post that you haven't had a diagnosis yet. Please don't panic and tey not to worry too much as it appears to be early days. I have had ulcerative Colitis for five years and my fecal calprotectin levels have just come back at 1600, so very high. I'm not a doctor or an expert but your levels are also high so just try to be calm and when you speak to your doctor ask them if they will be doing an investigative colonoscopy. If you have ulcerative colitis or another inflammatory bowel disease you are on the pathway to diagnosis.
Thank you so much Kcox. I still don't have a diagnosis yet (I've spoken to a consultant and I am waiting to be booked in for a scan) but I'm feeling more positive than I did before! Hopefully I'll have answers soon 🙏
Hi, thank you for your response! No I haven't had a diagnosis yet. I originally had a telephone consultation booked for this Friday but have been told it's now cancelled and rebooked for 11th December! It's been so long now, I feel I've gotten used to the symptoms. Right, the pain is not too much of a bother and I tend to have bowel movements 1-2 times a day, so pretty normal. The tinges of blood come and go and its very minimal and subtle, so much so I doubt whether it's actually blood sometimes . My only concern is that the last 2-3 weeks I've noticed black flecks on my stool! At first I thought it was food I wasn't digesting properly but I've been seeing it for so long now and there's no food I can pin point for the cause. Have you experienced this before?
When I was diagnosed with UC, in 2019, I had the phone consultation and they booked my colonoscopy at the same time, after they’d asked all the questions they needed. Then the pre med drinks arrived in the post, with the confirmation of appointment. My UC is dormant most of the time, but suddenly flares up around twice a year and the flares last for about x3 weeks. When it flares, I go on very low fibre foods, bland white rice, potato, clear broth. No raw fruit or veg except mashed banana sparingly.
Hi Susiiscute, thank you for your response. I'm glad to hear that your UC is mostly dormant! My stomach pains seems to have subsided now but I still experience some of the other symptoms, i.e. bloating, black specks in stool etc. If the pain comes back, I'll try and be more strict with my diet to see if it helps. I did try before, cutting out dairy and gluten to see if I sensitive to those types of food but it didn't make a difference. I might try a more low fibre diet it the pain returns. xxx
I was thinking about the black specs. When I had my first really bad flare, I was sometimes passing what looked like a pile of black ash. I think I worked out it was undigested blue berry skins.
This is an update, six months later or more. I had another flare recently, it didn’t respond to the careful low fibre diet. It just carried on bleeding and 20 times a day bathroom visits. I had to contact my GP and quickly get a five day steroid course of Prednisone, followed by another five day course, which finally worked. I’m now taking Octasa mesalazine as a preventative.
Hi. I'm experiencing similar black flecks in my stool too, as well as occasional red blood. Also, my calprotectin is over 2000. Have you received a diagnosis yet, if you wouldn't mind sharing?
Hi, I'm sorry that you're going through the same thing!
I haven't had a diagnosis yet. After being cancelled on three times for my consultation, I was finally able to speak to a gastro doctor 2 weeks ago but all he did was make me go through all my symptoms again.
He didn't really offer me an opinion, other than the fact that we can only speculate on a diagnosis at this moment and that it's best if we wait for a scan. He doesn't want me to have a colonoscopy just yet but has arranged for me to have another stool test and an abdominal x-ray to see if they pick anything up from that.
He said with current wait times it might take me 4-6 weeks until I can have one.
So I am just waiting again.
Are you experiencing any pain along with your symptoms? I've noticed that the black specks are more prominent or I get more of them whenever I have a stomach ache.
Thanks for getting back to me. Sorry to hear that you have to wait so long - waiting is so tough! Do you know why your gastro doesn't want you to have a colonoscopy yet?
I spoke to a gastro last week and after listening to my symptoms, history, lifestyle, etc., he said that he wanted me to have an urgent colonoscopy and I'm booked in for next week. That was much faster than I expected, but maybe they had a cancellation. I am glad it's so soon but also worried about why he wanted me to have the test so quickly. My symptoms have been ongoing for years, but the last time I saw a gastro (a year ago) he told me there was nothing to worry about because although I still had symptoms, my calprotectin was down to 109, so he didn't order any tests and diagnosed IBS (even though it had previously been over 2000). Now I wish I would have pushed for tests as it's over 2000 again.
I have tenderness in my upper right abdomen (hurts to press), occasional heartburn and pain after eating, but it's not always too bad. That being said, today I had the worst pain in years after I ate lunch. It was so intense in my lower abdomen that I cried a little bit. It was pretty scary. Then I had a bowel movement and it went away shortly after and I felt fine and have done since.
I hope you get seen soon. I'll let you know how my colonoscopy goes!
Hi! Sorry for the late response! I was waiting for something to update but unfortunately I've heard nothing from my doctor...
I'm so glad they fast tracked you! I hope the colonoscopy went well. Of course don't feel obligated to share the results but I really hope everything came back fine for you or you managed to get a diagnosis.
The doctor said he didn't want to do a colonoscopy with me because he wanted to try a less invasive route first. If anything shows up on the scan or if nothing comes up on the scan and I've still got the symptoms, then we would do the colonoscopy.
I had my scan around the first week of March and my doctor said he would contact me to discuss my results but I haven't heard anything since... I can only hope nothing serious came up and that they've put me on the low priority group 🙃
I'm still not 100%, still get the occasional bloating, nausea and black specks in stool but at least I'm not in pain anymore so that's a win.
Hi, Hope you are keeping well now. I was diagnosed with Crohn's in 2010 and currently having a flare, looking for some advice on diet during the flare.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Passing blood without passing stools anyone else experienced this.
Elevated Calprotecin Levels and IBD
Under investigation ***stool pic inside***
Causes of high calprotecin levels?
IBD since 2009 temp ileostomy
