So worried about DH - colitis or something else? (Not a pleasant read!).

[Chchchchangingg]

NC but regular user.

DH has finally, FINALLY been to the doctor's with some long standing stomach problems he's has for about 8/9 years. This is despite my constant nagging.

He goes to the toilet about 4/5 times a day minimum, often with diarrhoea and often expels a lot of bright red blood.

We are veggie and eat mainly plant based. He also cut out lactose as this seemed to exacerbate things. But lately, anything he eats is having a similar effect.

We've just got back from holiday where he had a terrible flare up on the last couple of days, due to eating things he doesn't usually and not being able to read allergens etc (although still no meat or cheese / milk). We had a long walk through a town on Saturday where he was almost in tears due to the pain in his stomach and his bottom was red raw.

I'm glad he's finally gone but I am worried that he will be doing the typical man thing of playing it down, and obviously the NHS is on its arse. We don't have the money to go private but, if it came to it I'd get a loan or something and worry about that further down the line.

Firstly, do these symptoms seem familiar to anyone? Through my Dr Google research I wonder if it's colitis?

Secondly, just looking for a little handhold. DH is the strongest, most fearless man I've ever met and he is just so down about it. I hate seeing him like this and not being able to do anything about it. I have nobody to talk to about it in real life, as I don't think he'd appreciate me talking to my friends about his bum! I am also trying to push back the fear that it could be something for serious.

Thanks MN.

I suspected I had colitis had pain and positive fit test, however diagnosed with diverticulitis in February

It does sound like an IBD. Hope he gets some answers soon.

I've been experiencing similar issues, but only for the last 6 months. I take a lot of pain meds which cause constipation much of the time, so such an extreme, prolonged change has me very worried.

The FIT test showed blood present and I have my first appointment at the hospital, after a 5 week wait, next week. I'm scared, if im being honest. Not just for the outcome, but for the unpleasant examinations I expect I'll need.

I've done a bit of reading online, including the NHS website, and I think it might be Crohns in my case. I've not had the bright red blood your husband has experienced, though. The GP asked if I had, as it might be a sign of piles.

It's good that your husband is now being checked over. He's been putting up with horrible symptoms for way too long. I hope you and he get some answers, and treatment, very soon.

My young adult son had these symptoms and had bw the day of the appointment and a colonoscopy and endoscopy done a week later.It was ulcerative colitis.
I really hope your husband gets some actual answers very soon.Living with the stomach pain and everything from the other end is miserable. Good luck to him and you as well.

Thanks @IHappenToLikeThisUserName . As it stands he can't even get a bloods appointment until next week 🙄

They need to ideally start with a faecal calprotectin and a FIT test. The calprotectin you can easily do privately yourself (I think it cost me £60-80 ish). It measures the amount of inflammation in the bowel and is a marker for IBD (crohn's and colitis). It can also be raised with other conditions that cause inflammation in the bowels.

When I had similar symptoms (but no blood) a few years ago, during COVID, I was seen very quickly and had all my tests done quite quickly with an urgent referral to a gastro. There was a waiting list for the gastro, so it did take about 4 months for an appt, but with the blood loss, I would expect he would be seen much more quickly. My calprotectin was elevated but I didn't have IBD in the end. I was ultimately diagnosed with something called exocrine pancreatic insufficiency - basically my pancreas has packed up for unknown reasons - which severely impacts digestion and causes all these symptoms. It's not curable, but it is treatable and I'm mostly fine now.

That said, if it's a bowel related issue, I hate to say it, but a plant-based diet can be quite symptom triggering. Usually it's recommended to go quite low fibre to control symptoms. Cabbage and cauliflower really cause me issues as does any sort of fermented food. It may be that in the intervening period, he can find some relief by eating a very bland, white carb sort of diet to see if it helps.

I should add that you can also easily do a FIT test privately too and will also be reasonably affordable, but probably not as important as you know he has blood in his stools, so I wouldn't pay privately for that.

Thank you @mindutopia , that's really, really helpful.

He was given a FIT test by the GP which I am going to nag him to get back to them tomorrow.

Very well done for getting him to go OP. Eight years is eight years too long to live like this.

I will say, sounds exactly like my DH with ulcerative colitis.. Though his was 30 years ago as a young man. He was entirely dismissed by his doctor at the university health service until a locum saw him and he was admitted on the spot. He had the same symptoms as your DH, possibly more frequent bowel movements I'd say, and it was only over a year or so. By the time he was admitted he'd lost 2/3 stone in the space of a few months. He was basically incontinent by this point, smelt 'ill' and was in almost constant, doubled over pain. He very, very narrowly avoided having anything cut out but was in hospital for 2 months where he received excellent care and was taken seriously. The first time a doctor examined him on admission they drew breath audibly and muttered 'oh my god!' - as well as other stuff which would be TMI.

The good news is, he's OK now! He was told to stick to a low fibre diet for an age, but tbh, nothing in particular seemed to aggravate a flare up, it seemed pretty random. He had to take a peppermint oil based medication for years too. He used to have regular colonoscopies, but tbh, has trauma from the endless blood/pain/shit/prodding and poking in that area and now refuses them as the last one was so incredibly uncomfortable and he passed out from the pain/distress.

Sorry, I'm not telling you this to frighten you, but so you can compare notes and push push push to get looked at.

Very best of luck to you.

Thank you @Wilkolampshade - that sounds awful, your poor husband! Really glad to hear he's ok now.

DH is a cycling junkie so is always quite trim and eats like a horse after a cycle (and in general, we are quite greedy haha!), it can be difficult to tell if he's lost weight sometimes but I will keep an eye on him. He went to the docs about 5 years ago who told him he had piles or a fissure and didn't take him seriously, and in typical man fashion he's left it until things have got to this point.

I've just sent him a link to low fibre diets and have reminded him to take his test back to the GP.

‘That said, if it's a bowel related issue, I hate to say it, but a plant-based diet can be quite symptom triggering. Usually it's recommended to go quite low fibre to control symptoms. Cabbage and cauliflower really cause me issues as does any sort of fermented food. It may be that in the intervening period, he can find some relief by eating a very bland, white carb sort of diet to see if it helps.’

I do second this advice. When my friend had a serious operation involving the colon, she had a very restricted list of foods which she was allowed. It came down to white bread ( the soggier the better), clear soup ( including chicken, I used to make her chicken broth strained thee times), eggs and potatoes but only boiled or baked. We used to joke that the baked potato was her friend! She was urged to slather on the butter, though, for the xtra calories , grated cheese on top, too.
Basically, she had to avoid irritating or even just straining the colon.

I hope he can get some advice and alleviation soon.

That's good OP, yes!!! Don't let him avoid the tests. If it is ulcerative colitis trust me, he does NOT want to go there. With DH, his attack was very acute and the weightloss was unmissable. If your DH still has the energy to cycle that sounds very promising, but I know what they're like for being stoic, silly bastards.
Whatever it is, much the best to nip it in the bud.

Sounds like colitis to me, could be diverticulitis though. The pain from that is very distinctive, once you’ve had it you recognise it again.
I lived on steamed vegetables and rice for a month, then re-introduced foods. As soon as I tried pasta and bread I was back to the loo cycle again.
I think you and your DH need to push for full bloods and cameras ( both ends, sorry)

Yes definitely @Toomanylatenightprogs. I have a colleague who had something similar and had the camera both ends, however it was painfully noticeable that he was unwell, whereas DH (touch wood) hasn't outwardly been affected too much.

stoic, silly bastards

Yeah that's him 😅

It does sound like Ulcerative Colitis (or Crohns)
My ds2 had the exact same symptoms . The GP dismissed them as IBS (with all that blood?) until he went back, saw a locum, had a colonoscopy within a fortnight.. instant diagnosis and started meds the next day!

It's been 4 years now and while he has had flare ups and has had to go on immunosuppressants, he is much better day to day. DS2 was early 20s when diagnosed and didn't look unwell (last flare up he lost a stone in a month however and as he's slim that WAS noticeable)

Diverticulatis doesn't usually have blood (I have it, and the pain is rotten) but UC.. blood and diarrhoea and terrible urgency is classic.

Hate to say it but a healthy plant based diet is is worst enemy if it is UC.
Low fibre stodge is kinder. DS2 used to love museli, but it came straight through him, and the IBD nurses (who are brilliant) advised a low fibre diet, especially in a flare up.

Hope your dh gets referred asap :)

@StillMedusa exactly our experience re' normal doctor and then by chance, an appointment with locum who bothered to listen. The 'normal' (bow-tie wearing, golf playing) GP put his symptoms down to stress - nearly 30 years later it still makes me angry.

Sample at the docs and some cream picked up for his poor bottom ☺️

Blood test booked for Wednesday. I'll lay off the nagging for a week!

I have diverticular disease and blood is very common- that's what led to my diagnosis

Could be Crohn’s - my Mum had it all her life (she had it very severely and ended up having several major surgeries but not everyone is so unlucky). As others have said a plant based, high fibre diet will be his worst enemy if it is this. My Mum used to survive on white bread, mashed potato and meat (it’s impossible to keep your iron levels up with bowel issues as the fast movement through the bowel can cause absorption issues with vitamins etc - generally vegans etc can get iron from plant based sources but this is very hard on the stomach and equally so with iron tablets, although my mum did take these permanently). However, whilst he is undergoing tests do not change his diet. It will be hard to work out what’s causing what if you do and certain things like coeliacs need gluten to be in the diet for it to show up in tests so don’t exclude anything yet.

I have ulcerative colitis and your DH's symptoms sound the same.

Nuts and seeds are my worst enemy- including the pips in strawberry jam etc.
I have to remove all skin from fruit and veggies.
Low fibre everything so this means no pulses, wholegrains or even the potato off a baked potato.

I was first diagnosed when I was eating what I though was a very healthy diet - I was eating all of the above. I was gutted when I was told I had to cut it all out.

First rule - no ibuprofen orally - it can trigger a flare up

To soothe a flare up quickly try eating these foods for a few days:
porridge (cheap oats not 'steel cut')
white rice
white bread/wraps/flatbreads with no yeast (homemade carbs better than shop bought)
Organic live plain bioyogurt
ripe bananas
avocados
clear soups and stews (no lentils/barley or anything like that though)

I wouldn't wait for the tests - UC is absolutely unbearable so eat soothing foods asap. My blood loss causes anaemia frequently so I try and stop it asap.

A couple of weeks on this diet won't harm.

By the way - they put me straight on pentasa suppositories when I was diagnosed and I felt better in just a few days.

When not having a flare up you can risk small amounts of any food with UC (they don't cause it - they just exasperate it if it starts up again- this is why its different to IBS or celiac etc)so it's not all doom and gloom.

Good luck

Oh I forgot to add:

peanut butter and turmeric soup really, really helps me! Apparently turmeric as almost as good a medicine for soothing ulcerative colitis flares. And peanut butter just because it's so nice!

(nut butters are fine - just not eating actual whole nuts or even crumbled nuts - put down the coffee and walnut cake - eat a peanut butter cookie )

It does sound like some form of IBD. I was diagnosed with Colitis 4 years ago after having similar symptoms, and same as your DH had been previously told it was piles.

I would suggest having a look at the NICE guidelines about referral to a specialist. My GP totally dropped the ball and left it far too long, so I ended up in hospital as an emergency admission, the A&E docs were horrified..

I've been on biologic medication for four years now and have pretty much no symptoms and eat whatever I want. Don't be afraid to push for a referral if you feel the GP isn't taking it seriously enough.

https://www.nice.org.uk/guidance/qs81

I have colitis, but the consultant said it rarely makes a difference on what you eat, so it may not be that if he’s noticing it after certain foods.

I think your consultant means that colitis isn't 'triggered' be certain foods.

If in the middle of a flare up though, what you eat definitely makes a difference to the severity of symptoms. To me eating nuts, seeds and eating fibre is like rubbing salt into an open wound. The bleeding worsens, the symptoms become unbearable.

It makes sense to eat low fibre, soothing foods if your colon is bleeding, as well as the prescribed meds of course.

Thanks everyone, this is all really useful. Particularly about ibuprofen! He has a shoulder issue as well and takes it fairly regularly so I'll tell him to get on the gel instead.