U.K. mum - son 13 with UC

[UKmum]

Hi ladies,

i have been lurking and reading this board for a year now and have just plucked up courage to post. I am from the U.K. and from reading on here either our consultants aren't great OR things are just done very differently in terms of treatment for kids.

Our story: when my son was 9 I noticed drips of blood on the floor and on toilet after he had been for a poo, by the time I had got to see a pedeatrician that has all stopped so they discharged us.

Last Christmas (almost 3 years later) it started up again just after he started secondary school. Fortunately not long after we were in lockdown so he was home, pain free but very smelly bloody stools.

Fecal cal came back at 2,200 so he was rushed for scopes and UC was confirmed.
By the time he had this (3 months after blood had started) it stopped again on its own so no need for steroids.

so he returned home from hospital and put directly on Pentasa.

i went crazy to research IBDs and got myself into an incredibly dark place, no one to talk to that understood, not even my husband as he is just very different to me and deals with issues as they arise.

i am on egg shells waiting for a flare to happen and I know From reading here that pentasa alone is very mild drug. Maybe I shouid be grateful for this but I'm not sure I am.

his last calprotectin was 26 in January but he has only had one stool test in a year and I get a call from the nurse every few months.

I wouid feel much happier if the stool tests were more regular, shouid they be?

He has told me he gets a mild tummy pain on is left side - how am I to know this is related or something different. I've told the nurse and she is ordering bloods but what's the point in that?

i just feel and wish that he was being checked up on on a more regular basis or am I being precious?

whst is the process I feel the hospitsl
Have just left us, we are at St Thomas's Hospital in London so have a good gastro department for kids

anyway not sure point of post but wanted to join and say hi!

also does the worry and anxiety get easier?

 

[crohnsinct]

Hi! I am so glad you came out of the shadows! Now we can support you!

YES! The anxiety and worry gets easier. The more experience you have the more you know the easier it all is to deal with.

I have heard wonderful things about the IBD docs in the U.K. I can't speak specifically to your hospital but I think you are likely in good hands.

That cal pro is wonderful! Try to enjoy the good times and not borrow trouble from tomorrow. That said, yes, a cal pro test should be run at least every quarter. I would really like it if the nurse was ordering cal pro in addition to blood labs because many people do not return off blood labs. Even a few people don't return off cal pro but that is really rare. The blood labs will at least flag anemia, high sed rate or CRP, low Albumin etc. But normal labs don't mean that his UCisn't kicking it up a notch.

Pentasa is a decent drug for U.C. so I wouldn't worry about the fact that they started there. We tend to not like Pentasa BUT more kids here have Crohn's and Pentasa really doesn't work for Crohn's. It works for U.C. Ironically, UC patients generally tend to have more reliable blood labs than Crohn's patients. Not sure why but that is the trend.

There is no way of knowing if that pain is UC, stress or something else but you are doing the right thing in raising the alert and starting investigating. My daughter has very UC like Crohn's and pain in that area is very indicative of her disease acting up. If his blood labs return normal I would simply ask if you could grab a cal pro level to set your mind at ease.

 

[Delta_hippo]

I am an adult patient in the UK. Guys and St Thomas in London is probably one of the best IBD hospitals in the UK so you are in good hands.
I’m glad things have settled for your little boy and long may it last. That said, keep an eye on bloods and stool tests so you can react if needed. NHS hospitals differ - mine in Gloucestershire will only allow 1 stool test per six months without doctor override, a friend in Liverpool can have them whenever she or nurses think appropriate. If you are being met with computer says no you can do private ones for about £60 a pop.
May be worth just seeing if there are any areas of diet to tweak. A friend with major UC had a big Diet Coke habit and he remembered his consultant saying “if I had a £ for every wrecked gut I see belonging to someone who loves that drink I would be retired by now”.
When they do the bloods ask for iron and ferritin too (stored iron) - if he has been bleeding might need a little help. The liquid formulas are much gentler than the pills and get one with vitamin c or take alongside to help absorption. Topping up vitamin d is also generally helpful for all things IBD.

 

[UKmum]

Thanks you both for taking the time to respond.

Re diet - he does have a coke once a week, I don't allow my kids many fizzy drinks. We haven't tweaked his diet as want to see if anything bothers him and so far nothing has but he is quite fussy (as are all my kids) so hasn't had much chance to experiment with food.

I give him a teen multi vitamin and so far bloods are fine apart from his last flare when he had to have an iron transfusion.

i did think about paying for a stool test and if it's £60 I'm happy to pay that as will help my own anxiety.

He also hasn't grown much (just 5 foot at 13.5) and no sign of puberty. IBD Consultants thought it's unrelated. We had separate bloods and thyroid was abnormal. We managed to get him added to my husbands private health and we are under an endocrinologist who thinks his diognoses put his purpurity (SP?) gland to sleep.. we are now having a hand X-ray / mri on this gland with a view to hormone injections to kick start puberty- just all other shitty thing for him to have to deal with but fortunately if anything, his diognosis has really made me watch and push for tests when things do not seem right to me.

thanks all

 

[UKmum]

..... going back to vitamins what do you give your kids?

Multi vitamins I give probably only give a small amount of each vitamin.

 

[crohnsinct]

I totally have paid out of pocket for a calpro test and it was a lot more than that! I figure cheaper than therapy!

Lacking growth is a very common issue at the beginning of these diseases. As they get into deep remission and stay there for awhile the growth comes. It is actually the last thing to fall in line…it takes awhile. Same with puberty. I am shocked your doc said not related. I think the endocrinologist is probably right.

As to picky eaters, sometimes kids with IBD subconsciously make the association between food and pain or tummy upset etc. So his picky eating could be a result of disease and it will take quite awhile for him to learn to trust food again. A registered dietician or Occuoational Therapist can help with broadening his diet. He could also just be a picky eater but OT and RD can still help with that.

 

[Jo-mom]

My son was about the same - at 14, he was 5' and about 85 lbs. He had delayed puberty. He also didn't have the appetite of most teen boys and was a very picky eater. We didn't know that the had Crohn's until 5 years later, but likely he had the beginning of the dz at that time.

 

[Maya142]

Hi and welcome, though sorry you had to join us. I'm also kind of shocked that his GI does not think his UC could be contributing to his growth issues. LOTS of kids struggle with weight loss and slowed growth if they have IBD. It's often because kids are not absorbing enough calories due to inflammation or not eating enough calories because they don't feel well. In your son's case, it seems like his UC is under control, which is good, but he may not be eating enough to gain weight and grow. My daughter really struggled with that - she simply could not eat enough to even maintain her weight. Her GI suggested enteral nutrition - formula that is easily absorbed to help with nutrition and weight gain. It is used more often in Crohn's than in UC, but it will help with weight gain and growth and general nutrition in UC too.

There are many different kinds of formula, but in the US, if absorption is not an issue, then typically polymeric formula is used because it's most palatable- formulas like Boost or Ensure or Pediasure. In the US, there are other brands too like Orgain and Kate Farms, but I don't know what's available in the UK. Typically you work with a dietician to figure out how many calories your child needs, how much they're eating now and then add formula to supplement the rest.

Like others said above, many kids with IBD tend to be picky eaters because they learn to associate food with pain or other symptoms, so adding formula can REALLY help with nutrition. My daughter was severely malnourished and seriously underweight before she was put on supplemental formula and she felt SO much better after she was getting enough calories! She went from eating about 600 calories a day (barely anything) to getting a total of 2200 to 2400 calories a day and the difference was like night and day. She had SO much more energy, she gained weight, her blood work got better and she just could not believe how much better she felt. She was 16 then so she didn't grow much (about 1/2 an inch) but she put on like 25 lbs that were very needed.

If your son is having abdominal pain, I would definitely let his GI know. And as other parents said, if his blood work is normal, I would ask for his Fecal Calprotectin to be tested or would pay for it out of pocket. If he is flaring, then a change of medication may be needed and that could be why he is not growing or gaining weight.

I'm glad you saw an endocrinologist - do you know if his thyroid levels are low or high? Hyperthyroidism can cause weight loss.

 

[UKmum]

Thanks all for your responses.

He hasn't actually lost any weight and actually put on weight even whilst flaring before diognosis. My first question at diognosis was wouid it affect his growth and they said it shouldn't?! I found it really odd!

one of his blood tests showed borderline levels for overactive thyroid (no symptoms) / autoimmune has been ruled out via blood test thankfully but as mentioned, it is related to the thyroid gland that controls the hormones within the body which he will be having an MRI scan to see if it's asleep.

i was thinking about getting those drinks - do they taste good like milkshake?

He doesn't drink milk, only if I make a hot chocolate.

stomach aches seem to happen at school, not sure if he is having me on half the time as he hates school but it is in the location of UC pain (from what I have googled)! He never gets tummy ache over weekend or half term - maybe the hatred of school brings it this whole disease has been a mindfield for me and all the conflicting things that I have read!!

I'll be pleased wheh he starts puberty as it's really bothering him -poor thing!

Thanks all x

 

[crohnsinct]

Hmmm maybe the doc meant that Crohn’s kids don’t have a problem with growth ONCE they are in remission. So yeah it has affected his growth but shouldn’t moving forward.

Stomach aches are the number one cause for visits to the doctor. It honestly could be anything including stress or even an IBS overlay. Best place to start sorting it out will be making triple sure his disease is under control. Then move down the list.

The shakes? Hmmm depends who you ask. MLP has an interesting approach in that she says start with the worst ones and work your way up so by the time you get to Boost and Ensure they taste great.

 

[my little penguin]

Yep amino acid based ones (like elecare jr or neocate jr ) taste worse -Gi should have samples
Then semi elemental- modulen a little better in taste
And polymeric forstips (?) kids boost, pediasure etc

my kiddo still needed extra calories to grow even in remission
So shakes from age 7 (dx) till 18(current age. )
Allowed for weight gain since age 7 (4’2”/50 lbs ) and a ton of growth -he is now 5’11”/168 lbs (back on his original growth chart )

He definitely needed shakes plus eating solid foods

If he is concerned about weight /height /puberty
14 abd school for boys is very hard
So stomachs could be that
Or not wanting to “go” to the bathroom during the school day so they hold it hence belly pain
We got a pass to place on Ds desk that was brightly color coded
So only his teacher knew what it meant
But it let him leave in the middle of class without asking to use the restroom
Stop the clock testing
Timed tests he could leave to use the restroom without penalty
Gym /physical education class
He could sit out if he wanted or just participate a little bit if he was having a bad day -no questions asked /full grade for the class
Ds also has juvenile arthritis so that was a factor as well

I can say Ds switched to online high school at 15 due to us moving .he loves every single minute of it.

 

[crohnsinct]

Also wanted to add that at 15 there were plenty of boys in my daughters’ classes who hadn’t gone through puberty. It was sort of funny because when they did it happened so suddenly and you were like,”what is this man doing here?”

 

[UKmum]

Thanks both.

i would have to get these shakes myself not through the doctor as they haven't mentioned that he needs them. I have a phone consultation with his nurse next week, she doesn't feel they need to see him face to face (even though it's been a year and even though I have mentioned slow growth and no puberty ) I'll chat to her then to see what her thoughts are.

my husband did say he was a Late developer so may not be related but I want to make sure.

they gave him a toilet pass last year which had 'toilet pass' on it - that swiftly went in the bin! I'll mentioned coloured cards instead.

He simply refuses to use the toilets at school, the sick room has its own the nurse said he can use but he won't go, it's ridiculous! He can hold it all day but I guess that might be why it's causing the pain whilst at school. I didn't think of that!

none of my kids will poo at school not even my 4 year old - not the best idea when you have an IBD!

 

[UKmum]

Ps. How do you know when in remission? He had stool test in January of 26, before Christmas an MRI to check it was UC and not Chrones and no inflammation was seen.

not one nurse / consultant has even used the word 'remission' to me it's so odd it's like we got sent away with a sore finger and I was left to google stuff which in turn terrified me! I nearly had a nervous breakdown over as I swear people just write the worst stuff on forums!

 

[crohnsinct]

I wouldn't necessarily worry about the label. No inflammation seen, normal labs and no symptoms are good enough for me. If he is able to hold it all day and he has U.C. then I am guessing he is pretty close to remission.

 

[UKmum]

Thanks again

 

[Mominflux]

Hi ladies,

i have been lurking and reading this board for a year now and have just plucked up courage to post. I am from the U.K. and from reading on here either our consultants aren't great OR things are just done very differently in terms of treatment for kids.

Our story: when my son was 9 I noticed drips of blood on the floor and on toilet after he had been for a poo, by the time I had got to see a pedeatrician that has all stopped so they discharged us.

Last Christmas (almost 3 years later) it started up again just after he started secondary school. Fortunately not long after we were in lockdown so he was home, pain free but very smelly bloody stools.

Fecal cal came back at 2,200 so he was rushed for scopes and UC was confirmed.
By the time he had this (3 months after blood had started) it stopped again on its own so no need for steroids.

so he returned home from hospital and put directly on Pentasa.

i went crazy to research IBDs and got myself into an incredibly dark place, no one to talk to that understood, not even my husband as he is just very different to me and deals with issues as they arise.

i am on egg shells waiting for a flare to happen and I know From reading here that pentasa alone is very mild drug. Maybe I shouid be grateful for this but I'm not sure I am.

his last calprotectin was 26 in January but he has only had one stool test in a year and I get a call from the nurse every few months.

I wouid feel much happier if the stool tests were more regular, shouid they be?

He has told me he gets a mild tummy pain on is left side - how am I to know this is related or something different. I've told the nurse and she is ordering bloods but what's the point in that?

i just feel and wish that he was being checked up on on a more regular basis or am I being precious?

whst is the process I feel the hospitsl
Have just left us, we are at St Thomas's Hospital in London so have a good gastro department for kids

anyway not sure point of post but wanted to join and say hi!

also does the worry and anxiety get easier?

I UKmum. Wow, your story is so similar to my daughter's. We are in California. We have also seen bloody stool symptom come and go all on its own, and although GI saw evidence of colitis during colonoscopy last year, we deferred diagnosis because of multiple differentials. But the bloody stool has started up again so I feel like we cannot avoid an IBD diagnosis at this point. I am mostly writing in response to your comments about crazy research, no one to talk to, and husband wants to help but really doesn't. . Reach back out to me if you think it would be helpful for us to connect offline by email/phone.

 

[Mominflux]

Also wanted to add re growth, weight, and puberty issues: this is a common flag for IBD in kids so if your GI thinks unrelated to IBD has he explored the Celiac blood panel and/or did he look for evidence of Celiac on endoscopy? I know you said autoimmune was ruled out but you didn't specify Celiac. My daughter also has Celiac, which has been part of her slow growth / slow weight gain.

 

[UKmum]

Hi Mominflux

I'm sorry to hear the bloody stools have come back... I hope it stops again soon on its own (my sons stopped both times on its own without meds)

Yes celiac has been ruled our.

He has just had lots of hormonal tests done and to see if his purpuity (spelling?) gland is working as that is connected to thyroid which bloods came back boardline.

We haven't got the results back yet but he has suddenly become very moody so I'm wondering if puberty is kicking off also tracksuit bottoms he has had for two years look like ankle swingers.. so good to see!!!

 

[Stressedmom]

Hi Mominflux

I'm sorry to hear the bloody stools have come back... I hope it stops again soon on its own (my sons stopped both times on its own without meds)

Yes celiac has been ruled our.

He has just had lots of hormonal tests done and to see if his purpuity (spelling?) gland is working as that is connected to thyroid which bloods came back boardline.

We haven't got the results back yet but he has suddenly become very moody so I'm wondering if puberty is kicking off also tracksuit bottoms he has had for two years look like ankle swingers.. so good to see!!!

That sounds about right! It's so hard to keep up with the pants sometimes. LOL! Mine is very thin, but tall (still working on weightgain) so we only have so many options for brands.

So glad to read your son seems to be close to remission!