Preparing for GI visit - advice

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Ands

Ands

Joined
Aug 10, 2012
Messages
195
Location
Somerset, UK
J has his regular 3 monthly visit to GI on Monday. Just wondered, if you don't mind reading how last three months have gone below, what I should be asking?

Tiredness and we have to pace activities, not too much in any one day. During the last term at school getting through the day but then not up to much else. Recurring mouth ulcers, ranging from one to five at any one time. If we stop the mouth wash they reappear. Had very red sore eyes that needed treating with steroid drops, suggested either Episcleritis or nasty allergyn and been refered to another specialist. Irregular tummy pain and upset BM. Really bad pain (Wednesday just gone) and projectile sickness, had him checked out and they kept over night in local hospital (not one where we see GI). They suggested gastro bug? No one else ill in house.

He isn't feeling in remission yet bloods taken on Wednesday we were told ok!

WWC 9.36
Neut 8.18
Hb 136
Plat 246
CRP 12
NA+ 134
K+ 4.1
Urea 4.6
Creat 46
Bili 11
ALP 206
ALT 98
albumin 44
amylase 52

Just hate coming away from a visit being told that all is ok when he clearly isn't feeling that way on a regular basis.

Any pointers to ask about would be appreciated.

Thanks.

Ands. Xx
 
Hi Ands

I'm no expert on bloods and there are several there I don't recognise. The ones that jump out are CRP normal range 0-8 and ALT normal range 10-45

I would say both of his are high! So not fine. He clearly isn't feeling fine. I really hope you get somewhere with your GI.

Good luck :ghug:
 
Hi, Ands

what I would recommend is detailing everything down on paper. Put down all of your concerns and list all problems that you are having, if you have dates of when things started so much the better.

I had major problems earlier this year when Josh was flaring badly, but no one would do anything. I kept a diary and any changes in him I wrote down. I weighed him reguarly at home and detailed that down. He wasn't eating much at all, so I started to write everything he did eat [ barely anything ]. I also printed photos off from the previous 6 months, to the day he had his appointment to show the doctor the changes in Josh during this time.
This all really helped as they couldn't ignore anymore what was in front of them! It turned out that Josh's crohns was now in his small bowel, which is no wonder he was so ill. I actually had the doctor aplogise about not listening to me earlier.

I also put in a compliant to PALS at the hospital as I felt we weren't being listened to, and this again helped. It isn't something we should have to do, but sometimes it is worth it.

I hope this helps and I am not stating the obvious and you have already done this? It is so hard dealing with these doctors sometimes. Just remember we know our own children far better than the doctors, so stick to your guns.

Josh also gets the red eyes with severe pain when he is flaring, we have been told it is iritis, which is a side affect of crohns.

Good luck, let us know how you get on. x
 
I second what Niks said. Those two values were what jumped out at me as well, especially being on 6MP.
 
Hi Ands, I agree - those two numbers would be worth asking about. I am particularly concerned about his ALT. When Andrew was on Aza, the minute he got above 90 he was told to stop taking the Aza immediately. That would be the most important one I think.
Good luck at the appointment.
 
Well yesterday was a hard day for J. He spent an hour with his mental health nurse, who now I think, is beginning to understand how low he has been feeling. J chats alone for about 45 mins then I join them at the end. I think they'd had the whole discussion about 'why me' 'my life's not worth living'.

We then saw his consultant. Reading between the lines I think the consultant is concerned about how low/anxious J is and therefore how many of his symptoms are self generated!

He didn't think J's bloods were too bad but at the same time unsure why he is still so tired and showing some symptoms. Anyway, he suggested scopes again and if crohns shows active then move onto Infliximab and if it looks clear he's suggested calming his digestive system through diet- gluten, dairy and sugar free!!!!!!

Well, J is back at school today, only another hour and a half before he comes home. Fingers crossed he's not too tired and had a good day.

Although life is not straight forward at least we have got a plan forward.

Xxx
 
Ands
How do you feel that J is? Do you feel his symptoms are self generated? Or do you feel that his crohns is flaring?

This sounds so similar to what Josh and I went through earlier this year. I KNEW the symptoms he had were due to his crohns flaring, but trying to get anyone to listen was almost impossible! We kept being told his blood was fine [ he even had an colonocopy ], but he was tired, very low, no energy and just generally miserable. He knew there was something wrong, but couldn't describe properly just how he was feeling, he just knew he was unhappy. I even questioned myself as to whether it was me causing this and making him unhappy. I am a single parent and at one point wondered if he would be happier living with his dad. He was so truely unhappy I would do anything to make him happy again.

We saw a pyscholgist who actually thought his symptoms were because he had developed an eating disorder and it wasn't crohns related:( Also it was suggested that he now had IBS as well as crohns! This went on for 6 months with no actually doing anything to help. At one point I was signed off with stress with the worry of it all.

Eventually, I think more to shut me up, they did another colonoscopy and a pill cam, which found his crohns was now in his small bowel and this what had been causing all his symptoms!!! I did finally get an apology and they said they should have listened more. Josh was put on the right meds, and he is doing really well now.

All you can do is to keep on at them. If you feel your son's symptoms are IBD related you are probably right. It is just so hard to deal with these doctors who won't listen properly.

My son has also started back to school today. We are aiming for him to be there a whole year this time, apart from routine appointments. He ended up having so much time off last school year, so it is good to see him going off happy and healthy again.

I hope you get answers soon and I hope your son had a good first day back at school x
 
Ands,
I agree that your son is flaring too. His eyes needing steroids, being tired, mouth ulcers are all signs of a flare. I actually dont remember ever reading of a child making up symptoms. He is blessed to have you and you are his only advocate to get him the help he needs. Yes, feeling suicidal and depressed is part of dealing with the drugs, and all that he is going through. My daughter would start talking about all of that mostly when she was on Predinsone. It seemed to intensify any feelings that they have x 100.

We eventually pulled our daughter from school because it was impossible to attend and keep up. I wish I had done it sooner. Now that she is in remission, she back into the world of being a young teen and will start her freshman year next week.

they have a great on line program for school now that is free. They send you all of the books and work with you and your son. It can be just until he is in remission.

sending lots of support your way and you go both work towards getting the medicine that will get him into remission. (it took 7-8 treatments of Remicade before it worked for our daughter.)
 
He is not in remission regardless of the "numbers". The doc should be considering the entire clinical picture - he's treating the child not the blood tests.

Are they re-checking the liver enzymes? You didn't post the ranges to go with the numbers so I don't know how far out of range the ALT actually is. But I would expect them to be watching that carefully given his hx of rx to AZA.

I think the doc wants to wait for the 6-MP to kick in and see if that puts him into remission. The problem with that is that 6-MP takes up to 4 months to work (or for you to know that it's not working).

As for the diet, I would not wait to consider a dietary change to support the 6-MP, assuming it is going to work.

If he can tolerate it and the doc agrees I would consider putting him back on Modulen - either exclusively or as a supplement if you're not already using it that way.

As for his being "low" causing symptoms - it is very true that depression has physical symptoms that may include fatigue, body aches, nausea to name a few. It is a physical illness that affects the mind and it needs to be treated. It is not the child's fault if they have developed depression and they should have that treated.

The problem we are all familiar with is separating out the symptoms of Crohn's from the symptoms of depression. It is important to do so so that either or both illnesses can be treated. Sometimes you have to treat one to figure out which it is or try treating both in hopes that you are treating all the problems at once.

In this case recognizing that he is not in remission seems pretty straightforward since he is having mouth ulcers, eye problems, vomiting and belly pain along with some lab abnormalities.
 
Thanks for feedback. We really do believe that there is something physical going on that is making his depressed state worse. Don't get me wrong he has always been an anxious boy but nothing to the extent he is now. We are convinced it is all being made so much worse by his general fatigue, he just can not cope. I dare say that a lot stems back to when he was diagnosed, our local hospital belittled him and his symptoms, made out that he just needed to 'man up'. He spent the best part of two weeks not talking because of the pain he was in with ulcers in his mouth. I wonder now if he is thinking the same, that no one believes him!

On a positive note he came home from school happy, after a good day and happy with new timetable. Things went down hill though when I mentioned he needed a shower and he then spent from 7.20 to 9pm arguing about why he was too tired to have one! He went to bed just gone 9pm, after a lot of tears and no shower!

Not a fun way for a 12 year old to live. Roll on scopes. Might suggest modulen again, when I can find the right time!

Xxxx

Ps. He's been on 6mp since December so we were hoping it would have kicked in by now.
 
I agree with Patricia56--why on earth are they not seeing mouth sores and eye issues as part of a Crohn's flare?! That is just nuts....

Our kids have such a lot to deal with. Hang in there. And good luck getting him convinced of a shower :)
 
Well just had the letter for the date for the scopes! Tuesday 17 Sept, so much quicker than I expected. He goes in the morning the day before due to the distance we travel, so all prep done in hospital.

It is so needed, eyes turning red again, and just been doubled up in pain! He explained the pain this time like it starts low down then sent shooting pain all over his tummy and his back.... This was just after eating a sandwich! Poor lad in tears.

Roll on scopes. It will be interesting to see what is going on, last one done on diagnoses July 2012.

Ands xx
 
Are they planning other tests like an MRE or CT or Small Bowel Follow Through?

I know scopes are spoken of a lot and they are important especially for those with colonic disease or the rarer cases with inflammation at the top.

But these other tests can be more informative (in my experience) when you have a child with small bowel issues.

He may be having pain after eating because of peristalsis - the normal muscular movement of the intestines that moves food through the system. I'm glad to hear his scope will be so soon.
 
I agree with Patricia... so often it seems that scopes are clear but there continues to be problems and then there's another wait for more testing. If you can, I would start asking about scheduling an MRE, etc. now... perhaps with the 'excuse' that you will be off work already for the scope and he will be off school and with the clear out from the scope, it would be so helpful to have the MRE/CT on the same day. ;) You may not get for the same day but, at least, you may start the ball rolling to set up a date. (In Canada, there's usually a fairly long wait for these imaging tests so my concerns with the 'wait' may not really be an issue for you???)
 
Do you know if they will be doing a pill cam test too? When Josh was flaring his scopes showed minimal problems, just slight inflammation which they said weren't enough of for the problems he was having.
It was only when they did the pill cam that it was found he now has inflammation in his small bowel [ where scopes can't reach ], which is what were causing all his problems.

Ands, what your son is experiencing is so much like Josh was, right down to the pain your son is having. Josh was hardly getting through 200 calories a day at one point as whatever he ate made him ill and in pain.

I really hope that you find the answers soon for your son. There is nothing worse than watching your child in so much pain and not being able to do anything about it.

Which hospital do you go to? We are at Nottingham on that day for a routine appointment.
 
No other tests planned. He had a MRI scan in December which was all ok. Last year on scopes inflammation was very clear, he was ulcerated all the way through.

He's managed tea ok tonight, albeit his younger brother eats double the amount!

CDJ we are under Southampton, it takes us about 2 hours to get there but worth it. We have a local hospital 5 minutes away but no specialist.

Thanks for support. I must admit it is so reassuring to know what we are going through is 'normal' particularly the depression issues that J is having. I know my husband and I start to doubt our own skills in parenting J and wondering if we are doing everything wrong. All we want is our old J back both in body and mind.....

Right off now to read up on a trial my youngest son might take part in; he's tested positive to having three antibodies that increase risk of developing type 1 diabetes (which I have). We have lots of immune conditions in our family!!!!!!!

Thanks.

Ands x
 
Wow, that is fast for scopes in the UK!! Hope they go alright and they provide some answers.
 

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