Scopes tomorrow!

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Stephyjane

Stephyjane

Joined
Aug 16, 2012
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Hi everyone, I thought I'd do an update on where we are with Ella.
She has been on 8 weekly infliximab schedule for the past 9 months, her last one was Jan 2014. Due to Ella having lots of additional problems, such as joint pains, skin problems, dry eyes etc, which does seem to follow her Infliximab. The GI has halted her infusions and tomorrow she is having upper and lower scopes to determine how her Crohn's is at this time, to see if she can manage without the Infliximab.
I'm really hoping it all looks great, though part of me thinks the azathioprine is just not enough for Ella. The past couple of weeks she has started having nausea again and has dropped 5 lbs.
she has been fantastic with the prep so now just tomorrow to get through.
 
Thank you.
This time Ella is having them done at a different hospital and the prep has been much slower. She did a week of low residue foods, which wasn't hard due to her constant nausea when eating, and now she is on day 2 of clear fluids, with her scopes being tomorrow afternoon sometime. She had a sachet of Picolax yesterday morning and one this morning. Ella has only managed to drink water. Can't tempt her with clear soups or jelly.
She is dreaming of a Burger King for afterwards though 😊
 
Well Ella got through her scopes really well and the results so far are really good. Both upper and lower scopes look normal and they took 8 biopsies, if they come back clear or with very minimal inflammation they will stop the Infliximab.
If there is significant inflammation she will have to continue with the infusion for a while longer. We'll cross that bridge if we have to.

I have a couple of questions,
Ella is still experiencing a lot of nausea and finding it hard to eat a lot of foods, this has been going on for about 3 weeks now and she has lost a little weight.
Does anyone have experience of this and what can I do to help her with this?
The dr that we spoke to seems to think Ella's tiredness and nausea is basically all in her head!
I'm trying to reassure her a lot that everything is good but I always have a niggle in the back of my head of what if?!
They will monitor her with 3 monthly bloods and calprotectin.

Also one more quick qu do your children suffer much stomach pain after the scopes and biopsies, Ella is quite uncomfortable today.
Thanks in advance and well wishes to all your families xx
 
Glad things looked good. My son had pain in his stomach afterwards for abut 2 days before it settled. Not sure about the nausea, but we have lots of experience with docs saying it's all in their heads. Only you know your child well enough to know if they are likely to be 'making symptoms up in their heads
 
If she isn't eating much, is she drinking? Dehydration can lead to nausea as can a vitamin b12 deficiency.
 
Ella had her B12 checked in Jan and she was in the normal range.
She's drinking ok, a lot of the time it's when she is eating something after a few mouthfuls she says she can't eat anymore as she feels sick.
She had low iron stores a couple of months ago and was taking a supplement for about 2 weeks, was having routine bloods which showed her iron was really high, so they got her to stop the iron. Quite confusing, I was hoping that may explain the fatigue.
 
Has anyone thought to consider pancreatitis as a cause for her nausea? Does she seem to have particular problems with fatty foods?

I would ask to have her lipase and amylase checked.

And I hesitate to rain on your parade, but did they do anything to check for inflammation in the small bowel?
 
They have only done upper and lower scopes, they spent a long time trying to get to areas that has been particularly bad in the past. Also they are going on blood tests looking good, calprotectin about 180, in the past Ella has been 2000 in a flare.
Ella had an mri of the abdomen in Aug 2013 which just showed a small area of inflammation in the TI.
Ella hasn't had those particular blood tests for a while. It seems all foods not very fatty foods.
She has gone back to school today seems quite bright in herself. I'll keep an eye on her nausea and see what happens.
Thanks x
 
It could definitely be linked to anxiety, it has been a very bumpy road for this past 2 years and with the possible 'reactions' to infliximab and so much school missed etc etc, I feel stressed enough so goodness knows how Ella feels.
I'm giving her lots of reassurance that things are goods and hopefully things will settle.
Just got to wait for 3 weeks for the biopsies without sending myself mad.
One thing the GI said was there is a 1 out of 2 chance of her symptoms returning when she comes off infliximab, so we just have to hope that doesn't happen.
 
I'm so glad the scopes went well!!! And it was lovely to catch up with you yesterday after so long, you were a great support to me when both of our kids were first diagnosed, 2 years has gone fast hasn't it? x
 
Do you only have the ferritin level(iron)? In my daughter case ferritin acts as marker of inflammation.

How her haemoglobin level?
 
Farmerswifey. Yes the time has gone past quickly. I'm so glad C is in a good remission now and stays there forever 😊

Catherine. Ella's last blood tests were a couple of weeks ago when she was taking an iron tablet. Her Ferritin was 15 range (10-200) which was up from previously being 9 in Jan.
Her haemoglobin is now 12.2 (11.5-15.5)
I was told to stop her iron tablets as her actual iron is now 39 (11-30)and transferrin sat 53% (16-50)
I really struggle understanding blood test results, but I've been assured Ella's are all good at the moment.
If the biopsies come back good and Ella can just have her Aza at the moment maybe just having the break from hospital visits etc may settle Ella's other symptoms, if they are being contributed to by worry.
Thank you xx
 
Good to hear all went well with the prep and scopes. Well done Ella! :)

I agree that continued issues that perhaps some imaging of the small bowel wouldn’t go astray.

How much does Ella weigh?

Has she had Thiopurine metabolites done?

What time of the day does she take her Azathioprine?

Dusty. xxx
 
It's really difficult to know when to keep pushing or leave things for a while and see if it settles. Maybe it would be a good idea to plan several small meals for her a day rather than proper dinners, etc, if she is feeling nauseas after eating a small amount. Hope things ease off for her
 
Hi, we have been trying smaller meals and I think that is helping a little with her nausea.
We went out to Pizza Hut last night as that's where Ella really wanted to go as a celebratory meal after her scopes. Ella managed barely one slice before feeling sick again, so maybe it is the more greasy foods, I'll keep an eye.

Dusty Ella is a very healthy 50kg and 5ft 3'' tall, always been one of the tallest in her year. She has dropped about 5 lbs in the last couple of weeks but I'm putting that down to scopes etc.
I'm not sure what that test is, is the one that they do for the Aza levels? If so then yes they do that.
She takes her Aza at breakfast. 100 mg , which they are possibly going to increase to 125mg.

Since her scopes I have carried on with her Movicol 3 sachets a day, but Ella is still finding it hard to go for a bm. She's been but says she's constipated. Is this quite normal after the scope?
I'm not sure whether to increase with the Movicol or just give it a few more days.
Thanks for all of your help x
 
I imagine she has been on the Aza for some time but perhaps you could switch to from taking in the morning to having it at tea time instead? Some people do have ongoing issues with nausea and taking it in the evening can be helpful as you sleep through the nausea problem. Ensure that it is continued to be taken with food.

Has Ella had vit D, magnesium and zinc levels done? If so do you have the numbers?
Low vit D and magnesium have nausea as a side effect and with ileal involvement Ella will be prone to these deficiencies.

I would push for small bowel imaging to be done to see if there is any inflammation/narrowing lurking there that is contributing to the ongoing nausea/constipation problems. It never hurts to have them done in conjunction with scopes as they complement each other by giving a more complete picture of the GI tract.

Good luck and hugs to you mum! :ghug:

Dusty. xxx
 
As far as I can remember, and I will look through my folder later, Ella hasn't had those blood tests before. Would they be under a different name or listed as magnesium etc?
When the results of the biopsies are in I'll have a chat with her Dr at Oxford and see about having some imaging of the small bowel done.
You're right Ella has been on Aza since diagnosis but has only been in increased to 100mg since Jan, we'll try from today having it at tea time and see if it helps.
Thanks for your help x
 
The results will be listed under those names but they are not routine bloods. Some GI’s will automatically test for them but otherwise you have to ask. Because for us the GP is the one that does all the leg work I ask him to do the request for them. :)
 

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