Symptoms back :-(

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Stephyjane

Stephyjane

Joined
Aug 16, 2012
Messages
222
First I feel I must apologise as I seem to just ask advice from others, yet don't have any advice for anyone else. So new to this I just don't feel qualified to answer others qu's yet.
Ella has been becoming quite unwell over the last week or so. Her dr wanted her off of the Pred as she had been on it for longer than she ought too for a child. So we finished that yesterday. She now has daily stomach pain back, awful bowel movements, up to 10x a day. This morning I can't describe what it was like other than the toilet water was dark purple, and she hasn't been eating beet root!
She is avoiding most foods again which is exactly like she was pre diagnosis.
I called her dr this morning and he is on Annual leave for all of this week, we have a review of Ella at Oxford hospital on the 3rd Oct, so I said we'll have to manage until then.
I really don't want to take her into the hospital here as they don't do anything apart from keep us waiting all day before sending us home.
Poor Ella is so low at the moment especially when the dr promised she'd feel better by now.
Ella is currently on 75mg Azathioprine
3x 500mg Salofalk (was halved last week)
15mg Lansoprazole (stopping in 5 days time)
Just finished 13 week prednisolone course starting at 40mg
Thanks for the outlet :))
I hope you are all having a good week xx
Steph
 
Poor Ella, hopefully some of the more experience parents will be along shortly. It sounds like the pred has been stopped before the Azathioprine has had a chance to work. How long has she been on the Azathioprine now?
 
So sorry to hear the update.
I hope soon she will be feeling better
and that you guys get some answers.

:rosette2:
 
I agree with Catherine sounds like it may be too soon for the Azathioprine to take over from the pred. Did the symptoms start showing up as you tapered the pred or only after you were completely off the pred? Can you get in any quicker at Oxford hospital? So sorry she isn't feeling well hope it improves soon!!
 
Hi just wanted to say hope Ella starts to feel a bit better soon I'm very new to this life of Crohn's to so my advice is practically nill, but if u ever want advice on per anal abscess I'm your woman lol, as the doc in A nE asked me today what do you think is the best option for Lewis today and even asked me what ab,s I wanted they no me so well lol, so sending big hugs to her to feel better soon ,xx
 
Agree that the prednisone may have been tapered too quickly. I know your doc said she HAD to come off because she was on it too long but a slower taper over a longer time wouldn't have been unusual from the people I have met and based on what my daughter did.

The doc doesn't have someone covering while away? I hope she can hang in there until doc returns or appointment at hospital...whichever comes first.
 
Stephyjane,
If she is going to the bathroom that many times a day and is having that severe symptoms I would get her seen ASAP. Even think about taking her to the ER. The doctor must have someone covering call again and push them.
 
Hi thank you for your responses.
Ella has had some diarrhea throughout treatment, I thought it was getting better when put on Salofalk but it was very short lived. Her tummy pain has been this past week and that's when we were alternating her 5mg dose so she was having it one day on and none the next day.
She has been on Azathioprine since the 17th June.
Ella's drs secretary has said we can go to the hospital for a review but we gave not had a good experience of our local hospital, and were told quite clearly to go home and manage it as things are only going to get worse. :-(
I shall see how Ella goes this week and take it from there.
Thanks again xx
 
I would have thought the Aza would have been starting to work by now - doesn't sound like it's doing anything if poor Ella is still going to the toilet 10 times a day! So frustrating when the local hospitals keep sending kids home and expect us to just "deal with it!". I had that for a year and a half before Andrew was diagnosed - almost seems a waste of time even going.
Has Ella tried EN - Modulen seems to be the one in the UK? Would be good to try if not (sorry if I missed that she has tried) as it is as good as pred and has no side effects! Might be worth trying some probiotic drinks like yakult - don't know if it will help, but don't imagine it would do any harm.
Do you have any one you can call - like IBD nurses, they can be great help. When Andrew was diagnosed we were given a helpline at Glasgow sick kids and a number for our local IBD nurses. Good luck getting some help, hope she feels better soon!
 
Ella tried the Elemental 028 and Fortisips but just couldn't do it. Mentally it was just too hard. Because we went privately to GOSH for diagnosis there was a delay coming back across to the NHS and we got the feeling that the drs didn't like the fact that we went there. So because we have yet to be seen by Oxford we have no Ibd nurses to call for advice.
It's unbelievable really at the lack of communication hospitals have between each other, you would think that the welfare of the child would be the most important thing, not the fact that we chose to pay for an investigation so Ella could get diagnosed as quickly as possible.
On a brighter night, Ella has managed a full day at school and has even gone to Girl Guides this evening :)
 
Never quite got how anyone could be annoyed at someone going privately to get diagnosed. I remember getting a letter for appointments in NHS it said "If you still need this appointment please phone and get a date/time". :eek2:
Andrew tried the Elemental and I agree it wasn't very nice, but according to our IBD nurse most of the kids she deals with manage to drink the Modulen flavoured with various Crusha flavours - might be worth trying that.
 
When sarah was having trouble with pain returning on the taper, it was the gp who gave as 1 mg tablets. Maybe see the gp.
 
So sorry to hear about your poor daughter. I can imagine how worried you must be feeling:( when things get a little more sorted do you think the GI could give you an e-mail contact? I personally find this to be the best method. But having said that I do realise it's the NHS you're dealing with, always worth asking though.
 
Poor Ella, I really hope she feels better soon. I can't offer much advice I'm afraid as I'm fairly new to all this (my 14 year old daughter was diagnosed a few months ago) and it really is a rollercoaster ride! Best wishes to you both :ghug:
 
How are things going with Ella Steph?

Have her symptoms settled at all?

Thinking of you and sending healing thoughts your way...:hug:

Dusty. xxx
 
Hi, I decided to take Ella to our GP on Wed just to get her checked out. The dr decided we needed to go to the children's wards at the hospital as Ella had a temp and her tummy was tender to touch.
She had some blood tests done and her inflammatory markers were raised and Ella's BM's were more and more frequent and just like water. They said she needed iv antibiotics and they would liaise with Oxford to what to do next.
So these were the options either 6 weeks liquid feed by tube with 5 days of 3 different antibiotics or iv steroids at a very high dose along with the antibiotics.
After deciding on the liquid diet, which was a huge thing for Ella,they attempted to put the tube down, I don't know why, but Ella could just not tolerate it in and was throwing up everywhere and became so distressed had to have it removed.

I am so devastated at the moment with everything that has happened, the last thing I wanted was more steroids for her. How she can go downhill this fast I will never know. We have been In hospital other times with similar symptoms and been sent home again, so I feel I'm not bring given the full picture.
One of the antibiotics she is on has to be monitored as it is so toxic. Why would she be on so many all at once?
I know this is a really long recount but there was no short way to say it.
So as I sit by Ella's bed in the middle of the night I'm going to write some qu's to ask the dr tomorrow. Xx
 
My heart hurts for you as I understand all too well what you are going through. You are both in my thoughts and prayers.
 
So sorry to hear the update.
Kisses to your girl:kiss: and hugs to you mama:heart:.
Hang in there.
 
Hope Ella is doing better today, same thing happened lucy earlier in the year when the prednisone was tapered so maybe the other drugs just havn't had time to work. Really hope she is feeling better soon.
 
So sorry to hear Ella is poorly and in hospital
, how is she doing today have the ivs started to take effect , Lewis was in hosp the best part of the summer Hols with septicima from hs abscess, I no it's so frustrating when u want results quickly hang in there u,ll both get through it , sending hits to u both.x. P.s have u heard of a radar key , it might be worth looking into this for when u com home it's a Key u can obtain to use the disabled toilets when needed urgently:poo: I don't no how to post the link on here but if you type it in it may help and the nacc have a card they can issue tha tells peeps that u are in need of he loo as you have health condition. I've just read about it now. Some reading to do if. Can't sleep .xxxx
 
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I'm so sorry to hear that Ella is feeling so badly!!! I have barely any experience with antibiotics so can't offer you any advice with those. But, I do believe the antibiotics used with crohns are often quite strong. Stephen's first was ciproflaxin, which came with a severe warning with its use :eek:, he had a reaction to it and then, when hospitalized a few weeks later, was put on IV Flagyl for a week.

As far as the liquid diet... just a couple of points, perhaps try a different formula she may drink... as was mentioned above, perhaps try Modulen with flavouring?? Nestle also has some juice-like (fruit flavours) formulas, called Breeze, she might prefer those. Re the NG tube, Stephen's tube size is 6-Fr. He is 18 years old but I learned here that 6-Fr is 'infant' size. Whatever... it does the job and the insertion hasn't bothered Stephen. Might be worth asking what size was used on Ella (although, at this point, poor thing probably wouldn't even want it near her! :()

I hope you've had a chance to speak to the doctor by now and get some answers!!! :ghug:
 
I am so sorry to hear that Ella is in the hospital. My son also used the 6-Fr sized tube that Tess has written about. It was very small, like a piece of spaghetti. I think the other key for my son was that he inserted the tube himself. I think if the person getting the tube can do this it potentially makes the process easier as they can feel when the tube takes that turn at the back of the nose and as a result there is less "blind" pushing of the tube. I don't know if that would work at all. For the first week or so he also used a numbing gel on the tube that he sort of snorted up his nose to make it a little more comfortable. After a few times he didn't need the gel anymore.

The only other thing I can think of is maybe to check and see what rate the formula was being pumped into her when she was throwing up. My son felt quite nauseous if the formula was pumped in too fast. I will look back and see what rate we used but I know it was very slow.

:hang:
 
Sorry to hear she ended up in the hospital, a bit of a shock when you're not expecting it! That's a shame the tube couldn't stay in, have to say I don't think my son would be keen to repeat the experience and would probably choose meds instead!
Hope the medicines help soon and she is feeling better asap
 
Hi Stephyjane, i am not remotely qualified to fully understand the illness, meds & all. I am however human, so i am really sorry for you both. Pain & sickness sucks when you are an adult, its somehow a hell of a lot worse as a kid. I have read some of todays posts, urs & replies. Dont feel guilty about the advice thing, u have enough on your plate supporting Ella. Stay strong, you are doing a fantastic job. Best wishes, FBN (Ross):Good luck:
 
I can't for the life of me remember what the rate of the pump was set for. I think he consumed about 3 litres and it took about 10 hours but I don't trust my memory.

I bet Tesscorm will know what the usual starting rates are.
 
Oh my Steph, I am so very sorry to hear about Ella. :hug: and so sorry that the NG tube didn't work, poor love.

Has any imaging been done Steph to try and find the cause of the raised markers, temp and abdominal tenderness?

I understand what you are going through hun. Just after Matt was diagnosed with what was classified as mild to very mild Crohn's he suffered setback after setback and in a 6 week period had the regime your beautiful Ella is receiving three times. :(

They are on a combination of antibiotics, along with steroids, as it is thought that this has the greatest chance of bringing things back under control. Matt's IV regime was Hydrocortisone, Flagyl, Ampicillin, Gentamycin and Paracetamol.

I hope things are starting settle. Sending you both loads of love, luck and well wishes! :heart:

Dusty. xxx
 
Thank you all so much for your kind words xx
I had a chat with one of the drs on the ward yesterday, they are following the instructions from Oxford as Ella's dr here is away this week. He explained we are basically back to square 1 :-( the antibiotics are to make sure that there are no bugs in her bowel that will travel into the bloodstream, I can't remember what the names are but one is very toxic with serious side effects that can cause deafness!! So she has to have her blood monitored throughout the treatment.
In regards to any other tests I think that once we go to Oxford he will decide there what to do. She has been so, so brave and it breaks my heart to see all the needles she has had to have put in her. ( she has an allergy to the numbing cream they use so can only have cold spray)
Her iv steroids have started today so should see if they are helping in a couple of days.
I hope all your children are well or on there way to being well. Xxx
I hate this disease that is robbing my child of her childhood at the moment.
 
Aw steph I hope she starts to feel better soon and the steriods start to work I don't no to much about the meds she's had before , I no ifliximab has many side effects have the talked about using this , were starting in a couple of weeks on it, I no how u feel about this bloody illness that takes over your life and nothing else seems to take its place. Sending massive hugs to u from manchester . Xxx
 
The antibiotic that can cause hearing loss is Gentamycin. Since Ellie is being closely monitored all should be well hun. :hug: Matt was on it 3 times and he is just fine. :)

I hope the steroids soon have Ellie feeling much better, bless her.

Dusty. xxx
 
You may ask if they have or can get buzzy.
It is a plastic bee that vibrates so iv and blood draws are less painful.

Here is the link.
http://www.buzzy4shots.co.uk/

We got the us version but I posted the uk link in case it's faster .
Most hospitals have them they just don't use them.



We have used it for two years so worth the cost.
 
my little penguin said:
You may ask if they have or can get buzzy.
It is a plastic bee that vibrates so iv and blood draws are less painful.

Here is the link.
http://www.buzzy4shots.co.uk/

We got the us version but I posted the uk link in case it's faster .
Most hospitals have them they just don't use them.



We have used it for two years so worth the cost.
Click to expand...

Thanks little penguin Lewis has massive needle phobia I will be ringing the hosp to make sure they habpve this in when we go ,thank u thank. Thank u lol .:strawberry:
 
Love your heart.....hoping you get some answers and a plan you feel good about.

Prayers,

J.
 
momoftwinboys said:
They used buzzy for H's IV infusion yesterday. He said it was great he did not feel the stick at all?
Click to expand...
. I have contacted the uk buzzy company and they told us the play specialist at manchester childrens hosp is doing a trial with this so we are asking lewis to be one of the kids they trial it on so we can see if his needle phobia works I may then invest in one incase there isn't always one available in each department he goes to . So glad your little man had a good result with it yesterday .x
 
Just so you know don't worry about he tiny frozen wings. We don't use them . They don't do much and so not worth the hassle.
The bee is worth every cent.
 
Did u buy your own or does your hospital have them there is actually only one at the hospital and its used in the diabetied centre so when I no when my apt is I going to ask them to contact the lady who runs the u'k sitem to see if she will trial it or I.ll ask the nana.s and family to all chip in for one for him to use. Glad that others feel they work I.ll try anyfin cause lewis freaks out and I speacialise in working with anxious and scared kids as I'm a dental nurse .x
 
Twiggy930 said:
I can't for the life of me remember what the rate of the pump was set for. I think he consumed about 3 litres and it took about 10 hours but I don't trust my memory.

I bet Tesscorm will know what the usual starting rates are.
Click to expand...

Stephyjane, I'm sorry I'm late to this! Not sure how I could have missed the notification?!?! But, I don't think you are looking at EN at the moment... poor thing already has so much going on, I'm sure the last thing she wants to think about is trying the EN again! In any case, the starting rate was 20 or 50 ml per hour for Stephen. Over the course of a day and a half, this was raised to 200 ml per hour. He was taking in 2000 ml per night, over 10 hours. We were told that he could 'play' with the rate and move it as high as 250 or 300 ml/hr, as long as he didn't feel nauseated. He's run it at 250+ without problem. (However, keep in mind he was almost 17 when diagnosed, I know the rates are lower with younger children.)

How is Ella doing now? Praying there's been a bit of an improvement! :ghug:
 
Our hospital has them but never used them and most that work there have never seen it.
DS had to have weekly allergy shots at age 4 so we just bought one.
Nurses didn't believe it worked until he put an iv in DS for a ct and DS was looking away didn't even know he was doing it.
 
Thanks everyone for your replies. I shall definitely look into the Buzzybee, I've never heard of anything like it.
You're right in thinking that Ella will not even entertain the thought of EN now, we can't even use the word nose tube without sending her into distress. At the moment she says she hates drs as they lie to her, so she's not in a good place.
They have now upped her iv antibiotics from 5 days to 10 days so will not be going home yet.
On the diarrhoea front there has been great improvement but is very tired and no appetite, though I'm sure the Steroids will sort that one out.
We have our appt at Oxford tomorrow so we'll see what the dr says then.
Thank you for all your kind words xxx
 
Sorry you are having to stay in the hospital for longer. Hope the appointment at Oxford goes well tomorrow.
I know what you mean about not liking the doctors. Poor Amy once said "Mommy, when I'm older I'm going to be a paediatrician so that I can actually help the children that are in pain" :yfaint:. Sad view on life for a 10 year old.
 
Just ordered a Buzzy! :)can not wait for it to come, Ella had to have her 3rd cannula in a week today and poor girl was very upset. The playtherapist has seen them before and has tried to get one but of course it's all down to 'funding'!
We had our appt at Oxford and had a nice honest conversation for a change, he says Ella's Crohn's is severe and she was not kept on the Pred at a high dose for long enough last time. He wants her to stay on the iv steroids and antibiotics until Sunday then review her then to see if we can swop to oral.
When they redid her Cannula today I made sure they took enough blood to test for everything they and Oxford wanted to test. You ladies are obviously rubbing off on me as I am getting more confident in asking for what I think Ella should have.
8th night sleeping in a chair tonight next to my sweet girl, fingers crossed we get home on Sunday.
Thanks again xxxx
 
Glad u got an honest answr and you have a plan of action for now, lewis freaks when he has the cannulas and his always end up rejecting so its a trauma cause he nos they'll end up hurting . Were going into hosp tomoz I think there gona put him on iv ab.s his abscess hasn't gone they wanted him to go tonite but we gave him all his presents tonite and said he was having a longer birthday as he went to watch man city in the champions league he was really pleased he got his presents early we've kept one for tomorrow though and will do his cake in hospital if he has to stay in . Sending hugs to you and ella keep us posted on how she's doing .xx
 
Thanks for the updates Steph. :hug:

So good to hear the appointment at Oxford was a productive one! :) I hope new regime knocks things back into place...:goodluck:

Everything is crossed that you break out Sunday!!!

Dusty. xxx
 
Hi steph how are u and Ella holding up. My hubby just asked how you both are doing hope your coping o.k I. Hospital. Thinking of you both sending positive thoughts to you both .xxx
 
Thought I'd come on with an update on Ella.
Thank you for all your replies and wishes.
They tried to swop Ella over to oral Pred on Sat but she went back to how she was before. We have now been put back on iv steroids to see if that will make a difference. I'm afraid to say its a bit of a nightmare, the dr days she is Steroid dependent and even though she is on 100mg of Aza it's not doing anything.
Tomorrow they are inserting a line to do TPN as she is losing so much weight and no energy.
I cannot believe how quickly she had gone down hill. I just want them to fix her or tell me what's going on.
She is being incredibly brave and I know from reading others stories on here, they we have an amazing bunch of children.
I hope you and yours are doing well
Steph xxx
 

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