IBD support thread

[AMillionPeopleCheering]

Come here for support and help. Patients and family welcome.

Lougle, that sounds unpleasant. The consultant said where there is rectal involvement it can feel like you have not properly emptied, but this sounds different? Would your GP do a rectal check?

My brother has crohns, hes not medicated just needs to completely avoid smoking!! And manages his condition with diet and exercise, when hes not exhausted.(Crohns impacts the whole digestive tract whereas UC is found in the intestine/rectal area- both types are pretty serious)

my 15 yo has ulcerative colitis, diagnosed at 7! and has been on lifelong medication- salofalk/mesalazine and steroids.
im being investigated now for UC, combined with diagnosed stage 3 endometriosis. There is a great link between the two.

this is a nasty condition, that impacts peoples lives greatly! My family have a strong history especially leading to bowel and womb cancer.

i wouldnt wish this on anyone!
best advice is to manage your diet, avoid red meat!!!! Processed foods are your worst enemy, keep active!

it doesnt discriminate to suffer with IBD.

Im sorry to anyone going through this!

Hope everyone is doing OK.

DS has Crohns and is having a flare. We're waiting for his bloods etc to come back, but he's loosing weight and I'm looking for any suggestions to feed him up.
And of course he's fussy, and attempting to live off plain pasta right now, which isn't helping his nutrition. All and any tips welcome!

Poor DS!! Its horrible to see someone go through isnt it.
My brother had the same issue with weight loss but also developed facial cysts.

The two types of IBD are similar but different at the same time. You could always look online at FODMAP diet??

You could also request a dietician, he could be sensitive to certain foods, could be anything!

My brother was told to avoid smoking! He doesnt anyway but things like smoke can aparently really negatively impact someone with crohns. even veg can sometimes play havoc apparently!

how old is he?? In regards to fussy eating

if he is primary school aged or under 16 he should be seen to quickly. He may need a course of steroids.

As its a chronic lifelong condition he will need to make some small changes. He might not necessarily need medication for life though as this, in my experience is where it differs from UC.

Thanks @Anitapu

DS is 14 and his IBD is largely controlled by Stelara thankfully, but he's grown 5cm in the last few months, plus lost 5kg, so I think the medication is struggling to keep up with his growth. It's less adaptable than the infusion based immunotherapy, but they didn't work for him at all. He saw his consultant last week, and they are waiting for test results.

I'm thinking about getting some Ensure for him, but he still has the horrors of the 2 months he spent on it, so it would be a fight to get him to take it. And he's lactose intolerant so sneaking cream into everything he eats won't work any more.

We bought ensure plus online and DD supplemented her diet with them - additional to rather than instead of whatever food she fancied. I know these are suitable as they are what the hospital gave us for DD when she did the liquid diet.

DD at one point was more or less only eating wotsits, mash with gravy, and chicken nuggets. It's horrible isn't it?

Just seen your update - DD was also unable to tolerate the ensures she lived off during the liquid diet (chocolate and strawberry, mostly) but she did accept two coffee flavour ones - that she hadn't really liked as she was young on the EEN - in a tall glass with ice and squirty cream on the top. We called it iced coffee and it seemed to be different enough that she drank it - most days.

@Pantaloons99 Have you looked at Etrasimod? It's relatively new and works in a different way I think.

@turkeyboots

similar age to my daughter with UC, bless him!

ensure? is that the nutrition drink??? Sounds grim!

I think the outcome of treatment/relapses depend on the individual entirely. We use salofalk. But there are clearly some differences between the two types regarding treatment. Unfortunately at 14, he probably doesnt want to focus, or know how to on a balanced diet. We have the same problems with picky eating.

i hope it gets easier for your son as he gets older!!!
horrible disease!!!

Hi all, I am also in the club that nobody wants to be in. I have Crohn’s disease - diagnosed at 10 and I am 33 now. I also have Coeliac disease (recently diagnosed although I was tested as a child) and last year I asked for a routine colonoscopy and was found to have anal cancer. Obviously I do not want to alarm anyone as my case is quite rare but I just wanted to highlight to make sure your IBD team don’t fob you off if you ask for tests because I was quite well Crohn’s wise after having both my children but just thought it might be worth checking things out…and they found I had anal cancer. It was likely caused by Crohn’s inflammation around the anal canal as that was where most of my active disease was and I don’t have HPV which causes most anal cancers. As I have Crohn’s I saw a specialist at the Christie who suggested chemoradiotherapy wouldn’t work well for me as Crohn’s can be resistant to that treatment so I have gone straight for APR surgery and thankfully it worked and I now have a permanent stoma. As a pp said it’s given me such a new lease of life - I genuinely didn’t really realise you could wake up and actually have energy every day and I did really well post recovery for around 7 months. But now the dreaded Crohn’s is back in another part of my bowel and I am back on budesonide (refused prednisone for now as I have gone through enough in the past 18 months!!) I’m also waiting to start vedolizumab. I have kept really positive for the vast majority of the time but I will say that this latest flare has weakened my resolve and I am so fed up of constant poor health. Sorry for the essay and bit of a pity party but I guess as fellow IBD sufferers I thought you would understand a bit!

@Brunonononooo
OMG i am so sorry to read this!!! You are all clear now I hope??

I hope the stoma bag helps you massively, you are really brave going through all of that.

Fingers crossed everything is okay for you moving forwards. This isnt a pity party at all, IBD is a genuinely horrible condition and I sympathize with anybody going through it. My daughter just last week had her endo/colonoscopies cancelled! Its really important to have these procedures and checks done!!

sending big hugs to you and anyone else who has suffered the effects of this awful condition!

stay strong!

Hugs to all of you. Especially to those of you supporting children with this awful illness.

@Anitapu yes I have had a year of clear scans so hoping that continues while I try and get the other ‘c’ Crohn’s under control. I’m sorry to hear your daughter was cancelled for the tests and hope she gets them back in soon - from my own experience I would really push for that just to keep on top of things. Really appreciate your kind words!

I need some advice so my husband has been having bowel issues for about 2 months now it started off with little bleeding and red stools… went to the GP they did bloods and a stool test and it come back as high calprotecten levels which were at 374..
Since then he has been referred to gastro under urgent it’s been 3 weeks and still have heard nothing
Fast forward to now he’s having loads of blood with every bowel movement.. he’s bottom hurts him and it’s not his drops it’s enough to cover the toilet water to red.. he has mucus which is red and he has tummy aches severe fatigue and generally feels poorly.. we went to A&E and they just did he’s bloods as said go home and wait for gastro… he’s GP said it is IBD and not cancer because of this stool test ? But it’s scary seeing all this.. I come across this site hoping someone can shed some light
We just feel neglected from everyone and isolated it’s a horrible place to be

@Bubbletrouble2 It does feel scary seeing a lot of blood in the toilet but it can be the norm for people who have IBD and are in a flare.

Some urgent referrals are taking a bit more than 2 weeks at the moment but I'd hope he won't wait too much longer. As you're concerned it could be worth him calling the Gastro admin team and asking to be put on a list in case they get any cancellations sooner.

It's reassuring if they did blood tests at A&E and felt he was fit to go home.

At the end of the day he needs a colonoscopy to get a diagnosis and then they'll be able to start treating whatever it is.

I'd strongly recommend replacing electrolytes with dioralyte or similar if he is going to the loo a lot. It might make quite a difference to how he feels. It's really easy to dehydrate ourselves if we just drink water to rehydrate; you can actually end up washing out the little electrolytes remaining.

The symptoms tally with what I get with ulcerative colitis. It's a bitch of a medical condition when it's bad but rest assured most people have more well times than flares once the docs get on top of the treatment.

Hi @Bubbletrouble2

Whilst your husband is waiting for an appointment it would be worth trying the following to reduce the severity of symptoms:

• eat regular but small amounts of easy to digest high nutrient foods: organic live yogurt, porridge, bananas, avocados, peanut butter
• eat very low fibre (no wholewheat/wholemeal/bran/fruit or veg skins)
• add fresh ginger and turmeric to foods when you can (thai and indian curry sauces are ideal)
• use bone broth as bases for sauces (helps heal intestinal lining)

• avoid all ibuprofen medications - these can cause worsening of symptoms
• avoid raw fruit and veg (cook veg really well)
• avoid nuts and seeds (pastes are fine ie. peanut butter)
• avoid processed foods, avoid fatty foods
• avoid all carbonated or fizzy drinks

I find that if I am in a UC flare up (this sounds exactly like what your husband is experiencing) the above plan of action really helps calm it all down.

Really hope this helps, I know how miserable this stage is when unmedicated.

Thank you so much for your replies I don’t know what I’d do without this wider community and it’s lovely that people take time out to reply …
il try all the stuff both you ladies said.. I jus want a diagnosis it’s so frustrating and so heart breaking to see my husband in this state…

il jus start pestering the GP surely there’s something to stop the bleeding while we wait

Good luck @Bubbletrouble2

Hi all

can IBD be diagnosed with a stool calprotecten test ?

Hi @Bubbletrouble2

My IBD was diagnosed due to calprotectin being very high PLUS a colonoscopy which showed the areas of inflammation/ulceration.

I'm pretty sure both are needed to properly ascertain what's going on in there.

. . . they do the calprotectin test first. If it's high they may do it again in a few weeks, then a colonoscopy, or just go straight to the colonoscopy.

They often take biopsies as part of the colonoscopy to check for anything else whilst they are there.

hey thanks for that

how long did you guys wait for a colonoscopy x

Hi a hospital is refusing to do a. Urgent colonoscopy and given a routine one which is a 12 month wait .. I’m crying I can’t see him like this any more

12 months?! That's insane!

Well it’s expidited now thank god .. I told them to document on my husbands notes that they are refusing urgent testing I then got a call back to say it’s done as urgent …

need abit more advice with ibd can u go to having no bowel movements or very less?