What’s wrong with me? Crohns? UC?

[CarrieBlu]

I know I shouldn’t look to the internet for a diagnosis, but I guess I’m looking for advice on what might possibly be wrong with me...

I’ve always suffered with bloating/gas/extreme stomach rumbling noises (it could be heard in the next room it would be so loud). Then, around 6 years ago, I started having episodes of diarrhoea and blood (always bright red). I had given up smoking and went through an extremely stressful time in my personal and professional life just before this, if that’s relevant. During one of my first severe flare ups I was referred for a colonoscopy, by the time my appointment came I was no longer having a flare up and the results came back clear (I believe biopsy samples were taken that also came back clear). Nothing further was mentioned and I found the whole thing so invasive and embarrassing I didn’t pursue it any further.

Since then, I’ve had flare ups a couple of times a year probably. To be honest, it’s just become such a normal part of my life that I just don’t think about it much anymore. I’m currently in quite a long flare up, about six months where I’ve not passed anything solid and pass bright red blood most days too.

I’ve managed to cope through two pregnancies and have reached a point where I’m thinking about a third but realise I should get this sorted first. During both pregnancies I did mention passing blood to my midwife but both times she never really seemed to think it was an issue and I was too embarrassed to pursue it.

In March, I had some blood tests done (testing for inflammation and coeliac tests I think), they came back fine. Since then I’ve ignored it again, but today made a doctors appointment for next week. The thing is, last time I saw him, he was discussing another colonoscopy, but what’s the point in that? The last one found absolutely nothing.

A few other things that might be relevant:

I’ve experienced no weight loss due to this, I’ve gained weight in the past few years since having babies.

The heat makes it worse.

My joints really ache these days. Some days I feel like a 90 year old moving around (I’m early 30’s).

I do get cramps when I need to go but no pain or discomfort the rest of the time.

So, has anyone got any ideas about what’s wrong with me and the tests that I should be asking the doctor for?

Thanks to anyone who bothered to read all this!

Hopeful bump - anyone have any ideas/had similar experiences?

Hello! I can’t say I can help but I’m going through something similar. My bowel habits have changed quite a bit, sometimes loose and bloody and sometimes just normal, thick stools. I have had bloods and it shows my neutrophil levels are down and keep dropping? I do suffer with an underactive thyroid which isn’t being treated (my TSH is 4.8) but I read Crohn’s disease can affect your neutrophils which makes me wonder whether I have it or not. I hope it’s not sinister as I’m only 23 . I’ll be following this forum to see whether or not anyone replies!

See your Gp and explain what you've said here.

Did you send a poo sample in to check for calprotectin?

You really do need another colonoscopy, I need them every few years now and with sedation you really are a bit woo so it shouldn't be too bad.

I’ve got UC, go and speak to the doctors and have another colonoscopy.

Passing blood isn’t normal or something you should just live with

Thanks for the responses. My only thought is, the waiting list is usually quite long, if it takes a while to be seen again and my flare up is over, surely a colonoscopy will just show nothing again?

Never been asked for a poo sample @CitadelsofScience

I have Crohn's and the idea of a Crohn's flare getting better by itself with no treatment seems a bit strange to me tbh. Makes me wonder if it is something else. Do you do anything different eg change diet when you have a flare, or just wait it out and it eventually passes? Of course I'm not a doctor so could be totally wrong about this (definitely better to trust judgement of a doctor rather than random strangers in the internet!) but maybe it is possible for Crohn's to come and go by itself. Mine definitely never would though.

If the blood is bright red that means it is probably from low down in the bowel (as bleeding from further up would be more mixed in, often makes your poo look black). That would mean that if it was Crohn's or UC the inflammation should show up on a colonoscopy, although I guess if you were in a period of remission at the time they might not see anything.

Second the suggestion to ask for fecal calprotectin, timed for during a flare period. Your GP can arrange that quickly, so no worry about waiting lists. And although a colonoscopy might seem frustrating I don't think you'll get a concrete diagnosis of IBD without one, so you'll probably just have to go ahead with it.

But yes @courderoy is absolutely right this needs to be investigated further - bleeding definitely not normal and not something you should just have to manage.

Were you having a flare when you had your blood tests in March? If it was Crohn's or UC I'd expect the blood tests to show raised inflammation markers. Bloods could be another thing to ask the doctor to repeat (and include CRP check and white cell count). Won't give a diagnosis but would be an indicator if there was inflammation there.

Good luck and hope you get some answers (and therefore effective treatment) soon.

Another thought - joint pain can occur with Crohn's.

Hi @MunsteadWood, I’ve always just waited it out and it passes, they usually last 3-6 months. I have less issues when my diet is poor, interestingly. When I’m eating lots of fruit and veg it gets really bad.

The tests in March were during a flare up, yes. Which is why I was shocked that nothing showed up! I’m still in that flare up now, this one has been around six months long.

I will definitely ask the doctor for those tests, thank you for the advice. I think I’m just confused as some of my symptoms point towards IBD but I don’t feel as though I’m ticking the boxes for a diagnosis of that. So I’m just wondering what on earth is wrong with me!

And weirdly, I’m such a well person in other ways! I hardly ever get poorly, I don’t catch colds, sickness bugs etc on a regular basis. Maybe once every 2-3 years I’ll catch something. Considering I’m around young children all the time I consider myself to have quite a robust immune system!

Ibd and ibs can have very similar symptoms.

I know you said you've had a coeliac blood test but they can give false negatives and you need to eat gluten at every meal, so three times a day, for six weeks before having the bloods done.

Ideally you'd need an endoscopy too to have a look at what's going on up top.

IBD is a funny illness in many ways and can present quite differently in different people. I think some medics now think it is likely that IBD is not actually just one condition (or two - UC and Crohn's) but a spectrum of different conditions. But not enough known to be sure I think. This all contributes to why it often takes a long time to diagnose.

Sounds like you do need another colonoscopy to get it checked out though, and the blood tests and stool sample (for calprotectin) are some relatively quick and minimally invasive things you can ask for while you're waiting.

I don't really know what else it can be as I've only really got experience of my own symptoms, but do keep going back to your GP about this until you get some answers. Hope you get some more clarity soon.

Thanks @CitadelsofScience and @MunsteadWood for the advice. Do either of you know if its possible to request an endoscopy is carried out at the same time as a colonoscopy?

Sounds very similar to the symptoms my family member with crohns/ UC (they have been diagnosed with both historically) experiences. They also have Coeliac Disease.

They have a habit of not seeking medical support when they get flare ups and will only go to the GP if it doesn't resolve itself after about 8 weeks. When they take their medication alongside sticking to a FODMAP diet for a few weeks until symptoms subside things tend to improve pretty rapidly and stay well until they get over confident and bored of being 'good'. Flare ups are pretty predictable now as they seem to be almost entirely stress or over indulgence related. We know there's going to be one just after Christmas, throughout April and again in October when it's a busy time at work.

Endoscopies are pretty unpleasant, I wouldn't actively try and have one at the same time as a colonoscopy.

Lots of fruit and veg can really set Crohns off, generally food good for Crohns is low fiber and what people think are unhealthy foods.
Joint pain is rife with Crohns.

Hi

Didn't see you post until just now. I have had ulcerative colitis for over 35 years. Currently in remission on Entyvio. Had a scope 3 weeks ago and my colon looked amazing, although the GI said he could see where the inflammation had been. He has scoped me before and seen the active disease.

What you describe sounds to me very much like ulcerative colitis. Your scope was when you were doing well and it does not surprise me nothing showed. Also blood tests give clues but they are not always helpful.

Ulcerative colitis tends to start low down and spread upwards. When I was first diagnosed suppositories helped, but now they are useless as my disease is higher up. Your descriptions of bright red blood are exactly what I experience. Also endless bathroom trips with pain, mucous, blood and often little else. Urgency, like I cannot wait, period.

UC does not necessarily cause weight loss because it is limited to the colon. Crohns can cause weight loss. I have been overweight and flared, although I blame much of my weight struggle on prednisone. UC can cause weight loss though and frankly when I am sick I almost feel like quitting eating to ease the symptoms. Sadly, that doesn't work. You need nutrition to heal. I stick to bland low residue food. Salad is a huge no no. I eat a lot of eggs, fish, and chicken.

I also have joint pain. It's all just a bundle of laughs.

I would be inclined to push for another colonoscopy. I know they are unpleasant but knowing where you stand can get you the right diagnosis and lead to your feeling much better.

I cannot believe how good it feels to be in remission. I hope you find your answers. Good luck.

@tryingtobebetterallthetime salad is a no go for me too, I can tolerate a bit in a sandwich or on the side of a meal but to just eat a salad would cause me so much pain. I knew something was wrong with me every time I embarked on a healthy eating regime, if ALWAYS fears uk at about 3pm after eating salad for lunch. Coffee upsets me too.

I'd always flare up!

Spinach, just NO. My husband believes this not humanly possible, but it can transit my system in 30 minutes.

People do not understand the dietary restrictions and will constantly suggest, meaning well, that I should eat a healthier diet and all will be well. This is a sure fire why to really upset me. I would eat only sawdust if it helped. Seriously, sitting on the toilet 20 times a day with pain and blood loss would motivate anyone to "eat healthy."

Sorry, a bit of a rant but one I am sure will resonate with IBD people.

I hate people that try to give me advice, they may mean well but they can piss right off!

Buster, have you tried aromatherapy?

... only kidding, I am an IBD sufferer too.

Ha ha.

I could write a book about the things I have tried, in desperation. There is something about camping in the bathroom in pain all the time that motivates us to keep searching.

I have cut out dairy, gluten, red meat, spices, sugar etc etc. all to no avail and costing a fortune in alternatives. I have taken vast quantities and varieties of probiotics. I have eaten enough yogurt to float a cruise ship. I have made 100s of smoothies. I have taken turmeric, glutamate powder, boswellia, olive oil, fish oil, etc. Also acupuncture and a herbalist. Like I said, a book!

The only thing that worked to get me out of a flare was prednisone. I worked basically overnight but I hate the side effects and it is only a short term solution.

I am so grateful now for the researchers who have given us medications like Entyvio and Remicade. They are life changing.

That it why I always suggest to someone worried about their symptoms to get help. There are much better treatments now that can get you into remission with a normal life back.

I have UC, it took 10 years to diagnose with symptoms very similar to what you're describing. Several colonoscopies including biopsies showed nothing because I was always better by the time the appointments came around. Bloods often didn't show anything significant even during a flare. Urgency, blood, cramping, diarrhoea, painful and stiff joints etc. The only symptom I had that you don't appear to is excruciating left hand side pain at the end of the flare ups - like being 5-6cm dilated in labour! Similar to you I would end up in A&E and often I had a colonoscopy booked and they would refuse to do anything further. I also rarely lose weight and have found symptoms better when eating crap!

I eventually managed to get a diagnosis when I saw a new consultant (he was about the 5th one I'd seen in the 10 years) who very sensibly pointed out there was little point doing a colonoscopy when I was symptom free, gave me his secretary's number and asked me to call next time I had a flare up. When I did so they had me in within a week and he was able to see straight away that it was UC.

My advice would be to try and speak to the consultant and see whether that would be an option. It sounds very like UC to me based on what you've said - it doesn't present exactly the same in everyone and I would echo what PP have said that blood in the stools is absolutely not normal. I was fobbed off so many times being told it was IBS.

OP I really hope you manage to get some answers