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Frustrated for 13 year old son!

Havent been on this forum for ages as things seemed to have settled but how wrong was i!

Brief over view of whats been going on;

Diagnosed with crohns in October 2011, through scopes, initialy tried liquid diet, which was a nightmare, so after 1 week came off and went on steroids, which seemed to help, however late January, he started vomiting at night, which after more scopes and a barrium and mri scan was diagnosed with a blockage, surgery was scheduled for 10 weeks later!! He was due to have the blockage removed, the narrow part of the bowel, along with appendix etc, sorry the correct name escapes me, however when the surgeon went to do the op, no blockage! However as they knew he was having problems he did the marble test! Basically put a marble top to bottom to see if it stopped, and yes it did, 3 times, so he performed strictoplasty on these areas, all keyhole, and initially everything seemed good, that was last May.

However, he has been very unwell for a few months, started before christmas, the tiredness, no able to go to school, full time, and the last 3 weeks a nightmare! Basically, on the toilet, liquied poo, with blood, and once he passed what he decribed as a golf ball! basically a small white poo!! The other thing that concerns us greatly is that when he goes to the loo, which is a couple of times a day, he ends up feeling very faint and dizzy, found him just laying on the lounge floor yesterday, said he ached and he felt like his bones where ice and going to snap!! He is also very pale and gets breathless alot.

We are awaiting blood results and also stool results, rang his nurse this morning and awaiting a call back!

The medication he is currently on his 100mg azathioprine, calcium tables and an A-Z multivitamin!!

The poor lad want to be better so much, been seen by a physciologist who believes he has depression and has regular appointments with her, is it any wonder he feels this way!!

Sorry, rambling away, but had to get it out and would welcome any feed back, suggestions anybody may have.

I believe he is having a major flare up, husband thinks he should be bagged so his bowel could be rested, talk of re doing scopes end of the month!! How much longer until he fades away!!

Currently weighs 38kg, lost 2 kg in the last 3 months!!

Bless him! It sound like he is having a flare.

Does he have a clinic appointment anytime soon? Have you got an IBD nurse you can call to get him seen urgently?

Seems that he needs to see his GI as soon as possible

Good luck x
Hi, he was only seen in clinic 2 weeks ago by the consultant, who has asked for the bloods and stool samples, still awaiting on all the results! He did say that scopes will be booked for end of Feb, just awaiting for results to see if any other tests are required.

Have called his IBD nurse, as usual got the answerphone, just awaiting a call back, which normally happens at 5pm!!

Just a waiting game at the moment, so frustrating!!


To save time...Ask Dusty!
I hope you get that call soon! Good luck! Were the bloods drawn 2 weeks ago? If so, they should have results.
I am sorry to hear your son is feeling so poorly, it is just so hard to see them struggle like this. Hoping you were able to hear something yet today. It is so frustrating to be waiting for results when they aren't feeling good. My friend's son was in a similar situation and had surgery, removed the bad areas and had a temporary bag for three months. He is doing fantastic now. He went back on AZA once the surgery was over and it seems to be working beautifully. As with anything with this horrible disease it was a long road but he is doing so much better now.

(((((((Hugs)))))) mom, hang in there. This too shall pass. In the meantime we are here for you.
We contacted the hospital last week, as bloods normally only take a day for results, and was told the red inflammatory markers slightly raised, but they didnt have everything back! Stool sample results apparently take longer, as they do them in batches!! Some leading hospital!!

Hubby wants him bagged to rest his bowl, heard lots of positives, and then reverse it, doubt they will do it, will be a last measure for them i think!

Just want whats best for son, its all happenend so quick with him, only diganosed October 2011, and been through so much, concerns over not growing and also weight loss, never been seen by a dietician, have asked numerous times for an appointment, but nothing!!

Time to stamp out feet i think!!

Thankyou to you all for help, advice and support along this very difficult road for us all.

Will let you know what, if anything happens!
I'm so sorry your son is so ill. It def sounds like a flare. I would keep calling the IBD dr until you get answers. I hope he's feeling better real soon.
Sorry to hear your son is suffering. Sounds like his meds are definitely not working just now. You mentioned EN, but failed that after a week, did he try that through the NG tube or did he try to drink it? My son couldn't stand the taste so did 8 weeks exclusive through the NG tube (it stayed in - he went to school with it in). I fed him at meal times/snack times through a gravity bolus and he just read or played the playstation while I fed him.
It might be worth trying again as it really does help and would give him much needed nutrition!
There are lots of other meds that the docs can try before having to go for surgery. Alot of kids on here have had success with Remicade. In Scotland they start with Aza then if that fails move to Methotrexate, then Remicade.
I truly hope they help soon - nothing worse than all the waiting about for tests, etc. Any chance they could just give him a short course of Pred to help him with symptoms until they get a chance to do the scopes or other tests?
Just had a phone call back from gastro nurse, went through everything that is going on, then dropped the bombshell, that they have managed to bring scopes forward by a week, yep it should be good news, however in this case it is the worse news possible, it is his 14th birthday on that day!! then to follow she mentioned that of course with the other tests being carried out will be nil by mouth for a good 48 hours!! What tests, first i had heard, then the really bad news, MRI will be done the day after the scopes, so will have a nj tube fitted while under general having scopes, then will come home for the night, unable to eat, canula in hand also, then back first thing for the MRI!!

He had this test done last year, and the tears afterwards, not just from him but also from hubby, it was horrendous. Apparently they need to do the mri again because he has had previous bowel surgery, last may 3 x strictoplasty, so need a really good look at everything.

I do appreciate the need for these tests and in some ways welcome them so we can find out whats going on and help him get well and being a teenager, but on his birthday!!

Currently they are ringing around the people on next weeks list to see if somebody would swap, i am really hoping this works out, but i also appreciate that some of these people have been waiting for a while for these appointments!!

We have offered to pay to go private, which is also being looked into, but they dont think we will be seen any sooner, but all options are being looked into.

Another problem is my dad is going for surgery on the 20th, and i was due to look after my mum who sadly has dementia, but living at home, but i was going to stay overnight with her, so she didnt panic if she woke during the night and she was on her own!!

Everything happens as once!!

Will keep you updated through what has become a very stressful time and one that we have spoken to our son about yet, fingers crossed they move the date!!
Just reading through your thread, sounds like you have quite a lot on your plate. Hope you manage to get things adjusted so he doesn't have to do scopes on his birthday
Tell them you want the date changed...if they're ringing people to see if they can change for that date i don't see why they can't do it another day.

Good luck and i hope your dads surgery goes well.
Currently trying to get the date changed, for next Tuesday, hopefully somebody will swap with us on the list, the problem is the consultant who will do the colonoscopy only does them on a tuesday afternoon, as it is a day surgery unit, that is the day they are given, we have also offered to pay to get it done quicker, but they dont think even that will help. Hopefully will hear back tomorrow, with a positive answer!

Dads surgery is a routine operation, in for 2 nights, should be straight forward, have one brother away out of the country, so the plan was i could look after mum, wihile hubby looks after our two boys, all planned, but hey ho, thats the thing with crohns, you never know what tomorrow will bring!

Thankyou to you all xx
Hopefully you can get the dates changed, poor thing, would not be good on his birthday!!

Good luck x
Waiting for the phone call, probably ring lunch time after meeting to discuss!

Fingers crossed and once again thank you to you all for your kind words x
Just wanted to say good luck with your son! (and everything else) My son is also 13. Not that any age is better, but it seems so unfair for these kids to have to deal with this. I was looking through some pictures yesterday from 5 years ago. I was thinking how perfect everything seemed to be back then. All my children were seemingly healthy, growing, well adjusted. Unfortunately things didn't stay that way for any of us. I truly hope they get things under control for your son! Frustrated is the best description for this disease.
Hi, yes i couldnt agree more, it is so frustrating at times, and so many people dont understand what you are going through let alone the child!!

We funny enough, had just looked through some photos at the weekend of a couple of years ago on holiday, and same as you, children healthy and growing and life was good and everything going as it should be, we also noticed a school photo from 4 years ago, and the scary thing is he looks the same, hasnt changed at all! He had colour in his cheeks, and a sparkle in his eye, it has all changed, and all i want is that boy back, some slight normality, i want him to be playing/hanging out with friends, being invited to parties, instead of saying no all the time, will hasten to add that is his choice not ours, currently they are doing alot of paintball parties and also something called Go Ape, which is basically swinging between trees very high up, complete with safety harness!!

Just a quick question if you dont mind me asking, has your son gone through puberty? Its something the hospital keep talking about, and think they are hoping once he reaches it he will grow, he did have a 12 week course of steroids, so will have to wait and see. Eldest son, who has no health issues was late and went through at 15 years, too early for the youngest i think, will wait and see.

Still waiting for this flippin phone call, i suppose no news is good news!
No he hasn't yet. Although he just turned 13 in January. I also have a 15 year old (daughter) that developed later. The thing that shows me his lack of growth though is his 10 year brother is catching him in height and weight. Although I think he's just naturally bigger because we have another 10 year old (fraternal boys) that is much smaller. (that's it, no more kids :) I was at a school function last night with him and also noticed he's quite a bit shorter than his classmates. We also did prednisone for 12 weeks. That was it's own little nightmare. Now just this morning he was crying and didn't know why? Said his head felt weird, not a headache, not hallucinating (which he did while on pred), just not right. Right with you right now, very frustrated. Had blood work done yesterday and waiting for those results before I call the GI.
I can relate to that sensation of looking at kids against each other and feeling like something is wrong. Liam (10) is now starting to look small against his class mates and when I compare him to his big brother who is 3 1/2 years older the difference feels really shocking.

I know it's not a fair comparison as Owen is very tall and at this age 3 1/2 year age gap is huge, but when they stand next to each other that 20 inch height gap just makes Liam look tiny.

GI Nurse just rang, everything sorted for next tuesday, wow, so so pleased, fingers crossed all goes well x
So glad thing worked out.
Yes no signs of puberty here with 13.5, yet there are signs in his 11 year old (12 in April) brother. And they have been pretty much mirror images in terms of development prior to Jack's dx's at 10.