Please will someone come and talk to me about ibd

[Hm2023]

My ds has had a problems with going toilet up to 15 times a day he had a colonoscopy and gastroscopy as well as a capsule video study it showed he has mild inflammation in the small bowel a few mild ulcers in the small bowel oseophagitis. they could see previous inflammation in the large bowel on biopsy they said he had 2 of the 4 changes needed to diagnose celiac but no ibd at present scopes are being repeated in a month and he’s on mesalazine and twice a day lanzoprasole. He had a month nearly symptom free after doing a bowel clear out with 8 movicols a day and then starting the mesalazine.

A week ago symptoms returned with extreme urgency doing normal or slightly stools multiple times a day and spending hours on the toilet his stomach swelled so much he needed to wear tracksuit bottoms to school as brand new trousers no longer fitted. Gp sent us to a&e due to size of stomach they wasn’t concerned.

On Monday for the first time he went to the toilet and the bowl was full of black loose stool surrounded by dark red blood I’ve been messaging the bowel nurses with pictures and they keep saying he constipated yet he’s doing 2 stools a day at minimum that are normal and he’s now having black or red blood once a day. I’m at a loss he is no way constipated and his poos are looking scary to me untill this point never had blood anyone got any ideas could he now he developing ibd is there anyway he has it but just not diagnosed anyone been through similar or any ideas ?

Hey sorry you are going through this - please come and join Facebook group called : UK parents of kids with IBD and post there x

Unfortunately I’m not on facebook would appreciate if any one has any input…

What was meant by 2 of 4 changes to diagnose coeliac?

Did he have a positive blood test and then endoscopy to take biopsies?

Does sound more like IBS or ulcerative colitis or crohns though

They’re the exact words used by the consultant that one of the biospys showed he has two of the four changes needed to diagnose celiac. Bloods are negative and he must keep eating gluten 3 times a day to see if it develops.

Also it’s so bad he’s only managed one whole day at school since Christmas, the school are being amazing at allowing half days after a very well written letter from the hospital. As he missed most of the end of November and most of December. The urgency and amount he’s in the toilet is debilitating and now he spends a lot of time in pain I’m going to take him to the gp again in the morning as his reflux is out of control to top it off and he is on a massive amount of laszoprazole twice a day.

So he's a probable Coeliac being required to eat gluten 3 times a day? And you have a month to wait until the repeat colonoscopy and gastroscopy & capsule video study?

I understand why he has to keep eating gluten. But that seems like a long wait, while his symptoms are worsening to this degree.

Sympathies I think it's going to be a long haul, this next month, unless your GP and/or A&E recognise an emergency. But even then they may just prescribe meds and tell you to wait for the 'oscopy appointment. (My personal experience of Gastro-Enterology at my local hospital is not good.)

Hi there OP
I've had IBD for 8 years and it's taken me a while to work out how to soothe/avoid a flare up.

Give him really easy to digest unprocessed foods: porridge, live organic yoghurt, bananas, plain rice, homemade chicken soup - that kind of things really helps.
Try and cut out all sweets, fast food, fatty food, fizzy drinks, nuts, seeds temporarily and certain things like wasabi peas absolutely hate me! - I can never eat wasabi peas which is sad as I love them.

If he can bear to go low carb for a few days/weeks then along with the mesalazine that will hopefully right things. If not - return to gastro team.

Good luck

PS sorry I forgot to say - yes I have bleeding with the ulcerative colitis. It is quite scary sometimes but once your son is on a good diet and medicine it should stabilize.
Don't ever hesitate to call the gastro team though if the bleeding daily and not stopping

thank you, his diet is very bland anyway today for instance he ate a croissant, jacket potato and green beans and one slice of peanut butter on toast as that’s all he could stomach.

The only bits I don’t think would tie in with coeliac are the extreme acid reflux and oesophagitis and also the blood in stools now. They did tell us they where referring us to there allergy team but said it’s a long wait and referred to speach and language as they saw he swallows wrong and it might be adding more damage to the oesophagus. he’s under gosh!

he’s a very atopic child has high levels of Ige in his bloods proven ige allergies to silver birch and grass pollen and asthma also cmpa for the first few years of his life.

anymore ideas welcome

He could have genetic test for coeliac to rule it out if he doesn't have the gene? (Any other family members have it or other autoimmune disease?)

I think the bleeding is not typical for coeliac.

If he is only on mesalazine for IBD then he probably needs something else mixed in. Mesalazine is fairly mild and doesn't often control IBD on it's own. I would really keep pushing the hospital to get another appointment. Do you have the secretary's number for the consultant? They are often the best ones to go through if you get no joy elsewhere.
Are you a member of crohns and colitis? If you are, they will have a phone number you can call and speak to someone to get advice. I know you say you don't use facebook, but the group mentioned above are really good and you will get very helpful advice.

My son has crohns, diagnosed at 8. Now 22, so we have been living with it for a long time.

I have Coeliacs...the blood is not coeliacs. My daughter had ulcerative colitis...please push the medics to look at this..(or crohns).dont think they will come to the conclusion...i had to push for my daughter ..for months after being pushed away and sent home with her... with other diagnoses.....only for her in long run to be diagnosed and to have an irreversible ileostomy bag. Please insist.

Personally I’d be cutting the gluten immediately to see if that helps. I thought a diet restriction was the first call with gastro (that’s what they did for me when I was around 20 but that was a long time ago) I was made to cut out different foods including gluten which was the culprit. I was never diagnosed as coeliac and just class myself as gluten intolerant.

Years later I started back on gluten and after a while ended in hospital with bleeding about 5 years ago. I’d never touch it again.

I would be telling dr there’s no way my kid is suffering and taking him off gluten completely to see if it helps.

He’s had all the scopes and biopsy’s done at the end of November they showed no ibd but showed inflammation and a few ulcers in the last part of the small bowel.

Also they saw he has oesophagitis from years of reflux So they started mesalazine and a massive dose of lanzoprazole the scopes are all being repeated at the beginning of March.

I’ve been talking to the clinical nurse specialists who have been forwarding the messages to his consultant and she keeps saying to up his movicol as he’s constipated I know he’s not as I monitor his stool and he goes toilet much more then I do and all the other symptoms are escalating particularly the pain as even when he had 3 months of lose stools he wasn’t really in pain now it’s a good few hours a day of pain.

id love to trial gluten free but they’ve specifically told me he needs to be eating gluten for the next lot of biopsy’s.

I'm so sorry your DS is having such an awful time and it must be a serious worry for you. My DD is coeliac and also has UC diagnosed this time last year.
I'm a bit confused how the blood tests for coeliac are negative but they're saying they can diagnose it with a biopsy. I though that the biopsy confirmed a blood test for the antibodies..... if that's wrong then I apologise. Given his high IgE I wonder if they have considered a mast cell component? Your consultant doesn't sound great in that she's insisting he's constipated when he clearly isn't. Is there any way you can ask for a second opinion?

Well things have been awful but different his reflux has become so severe that his food is refluxing back up as he’s eating causing near choking episodes a gp did bloods and stool samples that showed some inflammation calprotectin was around 300 I think but that was coming to the end of the loose stools his Ferratin was very low so his consultant brought him in early for the scopes to be repeated.

That was a few days ago the only abnormal findings where stomach shows mild gastropathy which wasn’t there 2 months ago which I’ve googled and still don’t understand think its just damage from acid also the the right colon and left colon show mild erythema. Which seems odd as the small bowel now has no inflammation but the large bowel now does. We’re waiting for biopsy results but they’ve had to put him on ondansetron anti sickness for the time being as they saw the extent of the reflux whilst trying give him the bowel prep meds. To be honest I have no idea what’s going to happen but something needs to as we’ve one full day in school since Christmas and no school at all for the last few weeks.

So sorry to hear this did they say it is probably IBD? It's not nice being in limbo but soon he will be out on the correct meds.

for now i would stick to plain foods (plain chicken / white pasta, salmon) basically low fibre

Well if anyone’s still reading this he’s been diagnosed with coeliac disease from the biopsy.
although he’s still so inflamed everywhere he has to remain on mesalazine and all the other meds he’s on for a while till everything thing starts to heal as the damage is quite extensive as his oesophagus, small and large bowel show inflammation. I’m relieved and happy we can start actually doing something to help but I honestly didn’t realise that coeliac disease could make someone so unwell. I’ve joined coeliac uk and have a meeting with his school tomorrow so shall let them know… they are hoping to be able to start lessoning his meds in a few months I’m really hoping that we can’t start living a bit more normally soon.

Thank goodness you have a diagnosis! It's not fun but the GF diet is very doable. And now they know it's coeliac, they'll be able to monitor him and keep checking that he's healing. Hopefully he'll make good progress now.

Really sorry to hear about your son. Can I ask where you are based? My brother has Crohns and gets immense help from a charity here in Scotland.

I'm so pleased you have a diagnosis but awfully sorry he's had to go through so much. My DD is coeliac (diagnosed at 15) then last year was diagnosed with UC and takes mesalazine on a maintenance dose now. Please feel free to ask any Qs and I'll try to help. Coeliac UK is brilliant and their shopping scanner is a must to begin with. Watch out for cross contamination of foods as it sounds like he is v sensitive to the effects of gluten.

Glad to hear you have a diagnosis and can begin to treat accordingly with more confidence.

I maintain IBD (UC) with mesalazine and it does a good job for me.

If he's sore then taking the peel off fruit and veg before cooking is a good idea. A low fibre diet and just very easy digestibles. Organic plain yogurt always helps me lots.