Advice needed

[pebbles1006]

Hi everyone, my 13 year old daughter started bleeding in September whenever she had a bowel movement but didn't tell me about it until October, by this stage it had got to the point where she would sit on the toilet and start passing blood without having a bowel movement. Doctor sent us to a&e where she had a 3 night stay in hospital and after several blood tests and an ultrasound which were all ok she was sent home to wait for a referral at Birmingham Children's hospital for a possible colonoscopy.

From around November time she had mild tummy pain and a few spots of blood but over the last few weeks things seem to have progressed, she had excruciating tummy pains over the last couple of days with increased trips to the toilet. Her stools have varied over the last few months from being normal to constipated to diarrhoea and nearly always bloody and always with tummy pains. She probably has a couple of days each week where she seems really exhausted and generally unwell.

We had the referral last week and she is booked in for a colonoscopy and upper endoscopy next Monday, the consultant thinks it could be IBD or a polyp.

I've read loads of information on the net over the last month or so but just wondering what peoples thoughts were on the above - I like to be as prepared as possible for things!

Also if anyone can give me any tips on how to get her through the 2 days of a liquid diet it would be greatly appreciated.

Many thanks

Kerry x

 

[Womble]

Hi everyone, my 13 year old daughter started bleeding in September whenever she had a bowel movement but didn't tell me about it until October, by this stage it had got to the point where she would sit on the toilet and start passing blood without having a bowel movement. Doctor sent us to a&e where she had a 3 night stay in hospital and after several blood tests and an ultrasound which were all ok she was sent home to wait for a referral at Birmingham Children's hospital for a possible colonoscopy.

From around November time she had mild tummy pain and a few spots of blood but over the last few weeks things seem to have progressed, she had excruciating tummy pains over the last couple of days with increased trips to the toilet. Her stools have varied over the last few months from being normal to constipated to diarrhoea and nearly always bloody and always with tummy pains. She probably has a couple of days each week where she seems really exhausted and generally unwell.

We had the referral last week and she is booked in for a colonoscopy and upper endoscopy next Monday, the consultant thinks it could be IBD or a polyp.

I've read loads of information on the net over the last month or so but just wondering what peoples thoughts were on the above - I like to be as prepared as possible for things!

Also if anyone can give me any tips on how to get her through the 2 days of a liquid diet it would be greatly appreciated.

Many thanks

Kerry x

I shall try to tag a couple of others with children who are really good
Maya
My little penguin

Not sure if that’ll work,good luck for Monday x

 

[pebbles1006]

Thanks Womble x

 

[kate22]

Hi Kerry,
I was diagnosed when I was 12 and the symptoms do sound similar to those that I had, I suffered loss of appetite and weight loss too. Usually CRP levels are raised in blood test results where there is inflammation though so it could be that it's something different such as a polyp, or maybe the IBD flare has got worse since your daughters last admission.

I remember the liquid diets well! My mum used to make ice lollies for me out of orange and black currant squash, or sometimes just orange squash ice cubes for some thing to crunch on! I was also allowed black tea and boril/ stock cube drinks when on an elemental diet, if your daughter likes hot drinks, but id double check with the hospital or doc before giving her them before a procedure.
If she does have IBD it's a confusing time when you first get diagnosed and there are plenty of ups and downs, but things do get better. There are plenty of treatment options out there and she'll be able to live as normal life as anyone else. Take care
Kate X

 

[emmaaaargh]

Hi Kerry! I really feel for your daughter as I was diagnosed when I was 9 but I'm glad you've found us - there's so much support here.

Your daughter's symptoms do sound like it could be an IBD. My symptoms were uncontrollable diarrhoea, drastic weight loss and exhaustion, and I was referred for an urgent colonoscopy and upper endoscopy. It's good that you've gotten this far, because if it is an IBD, it'll most likely (not always, but usually) be picked up on the scopes - they're the gold standard test.

I never had to do 2 whole days of liquid diet before a scope, so I don't have many tips. I did once do six weeks of liquids on an enteral nutrition diet, but I couldn't have anything else other than water so I just had to grit my teeth and do it. Liquids for 2 days before a scope sounds pretty harsh, but on the other hand it should make the clean-out a lot easier. It's possible that once you start the prep it'll make her un-hungry anyway (all my hunger definitely vanishes whenever I start drinking the prep!), but make sure to keep pushing fluids! Scope prep makes you incredibly prone to dehydration, plus, the more hydrated she is, the easier she'll be to cannulate

I hope the scopes go well! Remember to take care of yourself right now too, because it's probably even more exhausting for you than it is for her. If you have any other questions please don't hesitate to ask them

 

[crohnsinct]

Hi there! Sorry you are having to face scopes but they really are the best possible way to dx IBD and many other gastro issues. It sounds like it could be IBD but it could also be a few other things. My advice for you right now is to sit tight and not get too far ahead of yourself.

As for the clean out, my girls only had to do one day of liquid diet and clean out concoction. They are usually drinking sooooo much fluid that it fills them up and they are not hungry. If my girls wanted to feel like they were eating something we might make them jello (allowable colors only...no red dye) or plain broth (no protein). Hot tea was allowed and for some reason hot liquids made them feel fuller. But mostly my girls just stick to water all day and even mix the prep in with their water.

Two days of clears is good. It will make the clean out go more smoothly and give the doc the best look possible.

Once she starts the clean out she will be going to the bathroom A LOT! Diaper wipes help keep the bottom from getting too raw. Sometimes we might use a diaper rash ointment. A towel of pad under their bottom when they are laying in bed as sometimes they don't quite make it to the bathroom.

IDK how far the hospital is from you but we had to travel an hour and a half so we always brought a change of clothes for the card ride...just in case.

Good luck! We are here for you if you have any questions during the process or after the scope.

 

[Maya142]

We also only do one day of liquid diet plus clean out.

We give my daughter broth and popsicles and jello and honestly, that kind of fills her up, so she doesn't get too hungry. Once she starts drinking the Gatorade + Miralax mixture, she is not hungry anyway because there is a LOT to drink.

Your prep might be different since you are in the UK. Here in the US, the Gatorade + Miralax and Dulcolax prep is pretty standard.

She likes to distract herself by choosing a TV show or some movies to watch. She watches on an ipad in the bathroom.

Use Desitin or similar diaper cream on her bottom to protect it - she will be going to the bathroom a LOT.

You may want to have her sleep on a towel just in case she has an accident at night. And definitely take extra clothes for her (especially extra underwear!) in case she has an accident in the car.

Honestly, the prep is the worst part. Once that is over, the procedure is just a nap. Definitely keep her hydrated as much as possible, so that the IV isn't too hard to get in.

Good luck! hope you get answers soon.

 

[pebbles1006]

Thank you everyone for your replies, it really is appreciated and it's really good to hear from people that have been through this or know someone that has.

Thanks for all the tips on getting through the liquid diet, we have things on the list like milk and powdered milkshake which I wouldn't have thought that you could have! The baby wipes and creams are a good idea and something that I wouldn't have thought of.

I also hadn't realised that the cannula/IV would go in easier just by being properly hydrated, this is one of the things she is quite nervous about as she nearly passed out when she had one last year! So I can point this out to her if she starts saying she's had enough to drink!

Monday can't come round soon enough for us, she's in daily pain and it's so awful to witness.

Thanks again everyone.

Take care x