Ulcerative colitis and Crohns diagnosis... anyone here able to help me with advice or tips they've learned 🙏

[Ginismedicinal]

I got diagnosed with Ulcerative colitis a couple of years ago, it's now looking very likely I'll be diagnosed with Crohns too - I'd be so grateful if anyone has any advice on how they manage their symptoms and flare ups.
I'm currently struggling alot with pretty much any/all solid food. I don't absorb iron, so I've struggled with chronic anaemia for years too... I desperately need to find a 'meal replacement' drink or similar to help give me some sort of 'boost'.
I kind of get by on my low iron (think I've just got accustomed to it), but I have little in the way of reserves, so not tolerating solid food at the moment is making me feel rubbish.
I'm sure some of you lovely people must (sadly) be more experienced with all this than me... any tips/advice? 🙏🙏
TIA xx

Hi there, I have Crohn’s disease. Do you take any medication for it? You sound like you are really struggling, do you have a IBD nurse you could speak to, to try to get it a bit more under control?

I had Ensure for a few months after my UC diagnosis. I grew to love the raspberry one.

Hi, no - they won't put me on any medication until some test results are back, despite my Dr saying he'd be very surprised if I don't have it. All he's said at the moment is cut out any food and drink that'll aggravate it... which is so unhelpful as EVERYTHING aggravates at the moment. Apparently he's not going to prescribe anything until he gets all results back 🙄.
I hate to moan about Dr's - I know we'd be lost without our NHS, but my symptoms are awful (putting it mildly), I had hoped they'd try something while we wait, but nope... just things to avoid, which doesn't help much.
I've had problems for such a long time, but the older I get (43) the harder things are to manage.

What is 'Ensure'... I'll try anything that'll help!

Oh gosh that sounds grim.
Do contact the Crohns and Colitis Society - lots of support and advice there.

When my UC was flaring v badly I went on the specific carbohydrate diet. Its v restrictive at first (but I was desperate).

I dont know about the anemia tho...

When they diagnosed you with UC, what medication did they put you on? My consultant said with UC it’s not really about food. I got put on octasa and pentasa and quite a rigorous dose. Sorted it out and I take it again in flare ups. Oddly, and I know this is awful, but I gave up smoking pre diagnosis, but sadly took up vaping again a few years later and I think the nicotine has had an effect. I haven’t had a relapse since, and has been correlated with some studies I’ve read. I need to give it up! I would say the suppositories were the best as my inflammation was lower down. What were your colonoscopy results like?

Want to add, if it’s UC the food won’t have much to do with it at all. Also alcohol and caffeine - I had a relapse when I was pregnant and abstained from all of that!! If it’s food related have they looked at gluten allergies?

Before I got my proper diagnosis literally everything I consumed didn’t matter, there was blood, mucas, etc all the time. It need medication if it is UC. I hope it is for you as although it’s crap having a bowel disorder, UC is probably one of the better ones! You can still eat whatever, just be prepared for large oral and bum tablets! Hope you’re lucky like me and only have to take them for a flare up. I’ve only have to take them on average 2 times a year, for the last 2yrs not at all, but that could be the nicotine!!

Ensure is a nutrition drink, I had them when I was hospitalised with crohns as I was struggling to eat. I think if you are feeling so bad though you need to be assessed so you are not struggling alone. I was originally diagnosed with UC but was put on medication straight away.

I also love and respect the NHS but not all consultants are equal! The first one I had (and I’m talking over 20 years ago) was awful, did not listen to me and kept me on medication which at best didn’t help and at worst aggravated the disease. Please don’t be worried about asking for a second opinion if you are not happy with who you are with. I wasted years not wanting to complain when I really should have and once I had a new consultant things were much better.

Also agree about Crohns and Colitis UK, lots of info on there.

My daughter has UC and possible Crohn's.

We've finally managed to keep her out of flare for almost 12 months now but this is completely down to getting the right medications.

She now has drug infusions every 8 weeks plus a low dose of immunosuppressant.

No changes in diet make any difference - she just avoids spicy food.

She has regular stool samples tested to make sure she is in still remission.

When she was in a flare we used salofalk enemas and these usually improved symptoms within a few days.

After her initial diagnosis she was given steroid treatment and high dose immunosuppressants plus some other drugs. She went into remission after 6 months but then stupidly decided to stop taking the drugs. It then took us another 6 months to fully get that flare under control because she was so bad at taking the drugs. This is why she is now on infusions.

So really I think you need to review your treatment plan with your gastro consultant and get a fecal cal protection test done to see if there is any active inflammation.

Also have you ever been offered an iron infusion? My daughter has been given four in the last two years as her iron levels drop very low when she is in a flare.

Sadly, despite a previous CT scan showing UC, several areas of bleeding, and my colonoscopy and endoscopy showing several ulcers from my stomach onward, Dr's have never once put me on meds of any kind. I have chased them up for my anaemia - they finally gave me an infusion when my HB dropped "dangerously low", it certainly helped. When my Dr recently said its now looking like I have Crohns too, I asked what medication would help, to be told nothing until he gets more results. My friend who is a nurse at our local hospital said its appalling that I've been offered no further help/support. My more recent CT scan results have now apparently been 'lost'.
I'll be honest - I've entirely had enough, which is why I'm here... I had quite a substantial bleed a few months ago (which obviously doesn't help my HB levels) and A&E simply gave me some paracetamol and sent me home saying the bleeding has stopped so you'll be fine 😒 I collapsed a couple of days later in front of my daughter, woke up in an ambulance, back to A&E only to be sent home 4 hours later with advice to just drink more fluids. I'm pretty much done with Dr's... I'll find a way to manage it all myself I think.
I'll try and find a replacement meal drink/similar for now, hopefully that will help... 🤞

Ensure is a meal replacement drink. I had them on prescription for a short time. Let me know if you are in the south east as I can recommend a very good consultant. He only does private though.

Where about are you @Ginismedicinal
You can request to move to a different hospital. Maybe we could help you find a better department that's not too far?
I'm in SYorks. Sheffield have been v good, it has one of the leading IBD professors and he's a lovely fella too.
The dietician has been great too (I was diagnosed with UC & celiac)

That sounds so terrible. Crohns and UC are the same thing, only difference is where the inflammation is. Colon for UC and anywhere mouth to anus with Crohns.
You need steroid treatment at least and probably biologics. I'm not in the UK anymore but I'd be badgering PALs at least for treatment.

It takes ages to get all the tests done but once you get the right meds it is life changing, the IBD teams are all understaffed it seems so you do need to push but in general they'll want bloods over time, colonoscopy, MRI and CT so see where the UC or Chrons activity is and get the best medication for your case. It might do you good while you wait to rest your bowel completely by going on a liquid or low residue diet, won't cure anything but might help some of the symptoms.

I have severe chrons but have been in remission for over a year now

Hi, long term Crohn's sufferer who has now got disease under control...

White/beige low fibre foods while you are in a flare that don't aggravate the lining (white pasta, white bread, potato waffles etc).

Buscopan (you can buy over counter) is great for stomach cramps. Baths also great.

Ask your Dr for short term steroids (eg prednisone) to get you out of a flare. Amazing drug for crohns but can have nasty side effects.

Push for immunosuppressants eg infliximab if Dr thinks this could work as a long term treatment. Game changer for me...

Get yourself on the crohns and colitis facebook support forum to ask further advice from fellow sufferers.

Best of luck x

I'm about 2 hours away from Sheffield - I'm in Lincolnshire. I have referred myself to Sheffield a couple if times for one of my colonoscopy and endoscopy appointments, and a pill-cam appointment, yes they where fantastic!... unlike my local hospital, who sent me my appointment letter and Kleanprep to take, having starved, bowel-prepped and arranged for my kids to looked after picked up - the Dr said there'd been a mix up and couldn't do it, this happened twice 😒🤦🏻‍♀️ hence my self-refferal to Sheffield!
I wish I lived closer to Sheffield as honestly our local hospital has a shockingly bad reputation.

Thank you BB
I've heard buscopan is good - I'm going to try and get some today 🤞
I'll definitely look up that Facebook page too...
I worry about steroids as I've never responded well to them in the past (for other conditions), I'd be interested to see how immunosuppresents work/help though, as my autoimmune is randomly attacking all sorts - now including my thyroid too 🤦🏻‍♀️ I'd like to 'reign it in' abit if possible 🤞

My son has UC (diognosed at 12 now 14) he is on a drug called Pentasa.

i don't know why they cannot give you steroids to ease your symptoms until results come back? My son got his medication the same day as his colonoscopy.

whilst he was in a flare I gave him low fibre , mostly bland food. White pasta/ chicken/ fish/ no sauces etc I also gave him a probiotic not sure if that helped.

if it's Chrones then shakes mentioned above will help and I would try them out.

Another one to recommend the SCD (specific carbohydrate diet) - a family member has severe UC - did SCD for a while and is now drug free. They can eat fairly normally now, and go back on SCD if a flareup happens. Most of the medical people they spoke to poo poo'd it, but it's worked for them. Handwork though !

Sorry @Ginismedicinal I've just seen the consultant hasn't got you on any meds. That's so wrong.

I had loads of different ones til the combo of drugs and diet worked. I've still not gone down the Humira/infliximab route yet so have that if required.

I also swapped around consultants until I got one who I was confident with...and would work well with my GP. Current one is v good

I hope you get some answers (and meds!) soon.

Hey lovely, sounds like you're going through a really hard time! I have Crohn's and been in remission for a few years now although have to manage my diet and gradually having to cut more and more out.

When I was being diagnosed I couldn't stomach the dr/hospital prescribes drinks like ensure or fortisip they just made me want to vom. My dr actually suggested just getting anything in that was meltable or liquid. Ice cream, chocolate etc etc anything to give a bit of energy while going through the diagnosis.

Get on a biologic - it literally gave my Ds1 (now 20) his life back. He has UC but he may also have crohns as the inflammation on his last colonoscopy (when he was made to trial coming off the biologic) was beyond the bowel and he forgot to ask when he saw his consultant. He's waiting for the funding to come through for adalimumab currently after relapsing spectacularly within 3 months of coming off it. He gets very anaemic quickly as he bleeds pretty profusely for this he takes Floradix but it doesn't help - an iron infusion helps but until he stops bleeding he can't keep up really. The anaemia makes his appetite go and he feels sick when he flares.

If you only had one iron infusion ask for another. Standard practice and will help even out your levels - I also find spatine liquid iron good in between. You can request to be managed under Sheffield for care and just visit local hospital for treatment - get a referral to them from your GP. Agree with others that specific carbohydrate diet is good for UC. It’s a lot to get your head around and is a real commitment but sounds like it would be worth it potentially. You should definitely have been given meds by now if only steroids to get you out of your flare up. Good luck. It’s miserable going round in circles. Took years for me and eventually
met a great GP who referred me to a different hospital - game changer.