An update on Ella

[Stephyjane]

Hi everyone, I thought I'd give an update on Ella and just wanted to tell you I check the forum everyday to see how you are all doing.
The last time I posted Ella had been taken off her meds due to neutropenia, that was finally resolved by March with Sulfasalazine being the culprit.
Since then Ella has been restarted on Azathioprine and is currently on 75mg which we have been told is the highest she can take. She is also on 30 mg of Lansoprazole.
Unfortunately Ella hasn't had a remission yet since diagnosis last June 2012.
Ella had the 3 loading doses of Infliximab the end of last year but was stopped due to a possible side effect where a week after infusion Ella had extremely painful joints and was unable to walk.
Fast forward to now and Ella has had a lot of stomach pain, with some weight loss and rising inflammatory markers. Her Calprotectin is high aswell, last one just over 1000. She also has started to suffer with constipation and we have had to use Picolax to clear her, and now is taking Movicol.
She has been restarted on Infliximab and has just had her 2nd loading dose 3 days ago, we are still waiting for a response this time. And yes the side effect has happened again. This time with her left ankle.
We are waiting for an appt for an abdominal mri as possible 'narrowings' have been mentioned by her Gi. And Oxford would like to rescope her in the near future too.
Phew! I really was hoping things would be more stable by now, but know from everyone's posts that it is very up and down for many of you.
Ella Rheumatologist
has arranged for an mri to be done of her spine and knees over the next week to check for any inflammation.
We managed to do the walk for Crohn's & Colitis uk in London yesterday which was great fun it was 5 km and we hope to do the 10 km next year.

 

[Dexky]

What are they saying about this latest reaction to Remi? Are they going to try something else or just wait till the next appt? I hope that appt. comes soon. Have they discussed possibly trying Humira?

 

[Jmrogers4]

Thanks for update hope they figure out reaction soon and get her on a med that will provide relief

 

[Stephyjane]

Thanks.
We were pretty much told Ella may have to put up with the side effect. They haven't mentioned Humira at all. I know about it as I have a friend who is on it for R.A
I am quite concerned at the mention of possible narrowings as I'm not sure what can be done if she has them, and is this why she's getting constipated. We have an appt next Wed with our local GI, so will see what he says.

 

[alex_chris]

Thanks.
We were pretty much told Ella may have to put up with the side effect. They haven't mentioned Humira at all. I know about it as I have a friend who is on it for R.A
I am quite concerned at the mention of possible narrowings as I'm not sure what can be done if she has them, and is this why she's getting constipated. We have an appt next Wed with our local GI, so will see what he says.

Humira is today generally preferred over remicade because you can self inject it, but if she just started remicade from an effectiveness point of view it probably makes no sense to switch to Humira now (except if the side effects you mention are really problematic, then it is definitely worth a try).

As to the narrowings, you probably have to wait for what the GI says about them. Narrowings can reverse to some extent via medication if they are not that narrow, some can also be dilated via balloons during a colonoscopy. It's important to understand the nature and location of them, they can become full blown strictures at some point. They can be connected with constipation but don't have to.

I hope all will work out fine and that remicade will kick in soon.

 

[jaems]

Thanks for sharing. I'm sorry y'all are going through this. Prayers headed your way to your daughter, you, and to her Drs!

 

[crohnsinct]

Isn't it weird that the very thing Remicade is supposed to treat (joint pains R/A) it causes...ERGH! My daughter developed joint pain as well. No where near as bad as your poor girl and it might have been psoriatic arthritis. Either way, they added MTX to the mix and for the most part the joint pain is gone. Wonder if that might be an option for you?

I really hope there is no narrowing and if there is that it is inflammation and once you get inflammation under control it resolves.

Sorry it has been so long and hard for you all.

 

[CarolinAlaska]

Sorry to hear about poor Ella! I'm glad they found the culprit to her low WBCs. I know it takes a while to get the 6 MP to kick in. I hope you can find a solution to get her back in line with the joint pains and IBD flaring.

 

[DustyKat]

Thanks for updating Stephyjane...:ghug:...I am so very sorry to hear that Ella is continuing to have problems, bless her. :heart:

Sending tons of love, luck and healing thoughts your way. :goodluck:

Dusty. xxx

 

[Stephyjane]

Thank you all for your replies.
Ella had an ok day yesterday and managed nearly a whole day at school. Today she has had awful pain, mostly a constant sharp pain but had a burning feeling in the middle as well. I'm wondering whether we should be acting on the possibility of any narrowings and watching what Ella eats. Last night she had strawberries, grapes and baked beans and today the pain is a lot worse. It's so hard to work out what could be adding to it. The pain is pretty much there all of the time but intensifies at certain times. Mornings are a particular bad time.
Ella's Rheumatologist mentioned Methotrexate but her GI wasn't keen. They keep telling me Ella is a complicated case, which is not helpful to us.
Ella says she'll put up with joint pain side effect if her tummy gets better. She has her 3 rd infliximab the day before we go to Florida for our holidays. So there is a very high chance she'll have a reaction a week into our holiday. She will be devastated if she can't go on all the attractions she has planned to.

 

[crohnsinct]

Poor baby. Strawberries with their seeds, grapes with their skins...Those were on our no no list when O was really inflamed so maybe they are the culprits I would go low res for a few days and watch it.

I would be curious as to why your GI wasn't keen on adding the mtx. Here in the states it is a pretty routine add even without the joint pain. The GI's like to add it because it lessons the chance of the kids developing antibodies to the Remicade. I am sure her GI has their reasons and they are valid...maybe the liver? I was just curious you really don't have to answer.

I hope the 3rd Remicade works like a charm and you all can enjoy your vacation!

 

[CarolinAlaska]

I think I'd cut out raw fruits and veggies, especially those with seeds or skins. The beans of course can make her gassy. It gets to where you can't give her anything, but if you can find a few things she likes that don't scrape her inflamed bowels or make it worse... I hope your docs can find the right solution before your vacation!

 

[Stephyjane]

I really don't know why he didn't want methotrexate adding, it was in a conversation a while back when the rheumatologist had mentioned it. Ella is on Azathioprine, the Rheumotologist had no problem using it (methotrexate) but said it wasn't the first choice for Ibd.
We'be been really careful today food wise, custard, canned spaghetti. It's just a natural instinct to try and push fruit and veggies. A couple of weeks ago Ella had excruiating pain and when I think back had eaten a big plate of cucumber sticks. I know we'll find out more when we go for mri, but I hate waiting.
Dr also still wants Ella on liquid diet but she just can't do it
Thanks for your advice x

 

[CarolinAlaska]

I really don't know why he didn't want methotrexate adding, it was in a conversation a while back when the rheumatologist had mentioned it. Ella is on Azathioprine, the Rheumotologist had no problem using it (methotrexate) but said it wasn't the first choice for Ibd.
We'be been really careful today food wise, custard, canned spaghetti. It's just a natural instinct to try and push fruit and veggies. A couple of weeks ago Ella had excruiating pain and when I think back had eaten a big plate of cucumber sticks. I know we'll find out more when we go for mri, but I hate waiting.
Dr also still wants Ella on liquid diet but she just can't do it ��
Thanks for your advice x

She can do it! If Jaedyn can do the liquid diet, anyone can!:dusty:

 

[positivemum]

Hi I am in th euk too. If my son Ben could do 8 weeks on 8 fortisip shakes taking just strawberry flavour she can do the shake diet - he doesn't even like milkshake but he drank 488 of them to avoid a tube. He 14 now and was dx 2 years ago and we still struggle to control things. He is Aza and Pentasa and Vit D. HE can't eat raw carrot strawberries etc.

My real reason for posting isto say we got back from florida 2 weeks ago. HeWe had been before so were happy to go at his pace. She will have to take it easy as so hot and loads of walking. My best tip - in Disney parks go to Ctiy Hall at Magic Kingdom and ask or a guest assistance pass as she has Crohns. We were able to go up fast pass queue every time as often as wanted which meant no more than 15 mins queuing. Without it we would have really struggled. Toilet facilities are good too. Just watch the heat and walking etc as very draining. Also the flights will mess her system up a bit for the toilet. My son handles it well but it was much harder than 4 years ago before dx and being 14 normally would have been easier. Good luck and enjoy it

 

[Sascot]

Sorry to hear Ella isn't doing so great yet. I hope the side effects aren't too bad so the Remicade has a chance of working.
As for her food, I also feel the need to try push fruit and veggies, but I do avoid strawberries. When giving fruit I always peel them (even the grapes!) and when giving tomatoes I scoop out the seeds and with cucumber I cut off the hard outer skin. So far so good. I was thinking of buying a juicer so that I can get more veg/fruit into my son.

 

[Dexky]

The Disney trip would be good incentive for the EN. Maybe you could convince her to try at least till then to ensure she enjoys the stay. Afterwards, you could use the old "well you've made it this far...". Good luck!

 

[Stephyjane]

Thanks guys.
We had our appt today. The dietician was there as well. For what it was worth, honestly I get much better advice from here. I have decided to do what you guys have advised and avoid seeds, tough skins etc and see if it makes a difference. Ella's GI said he'll chase Oxford regarding the Mri and scopes, he talked about a possible narrowing in her large bowel, but until the tests we won't know.
I think as a family we are still in denial of the whole thing, and that doesn't help Ella when she is told to take a new med or try En. She is told do this or that and you will be better and when it doesn't happen thinks the drs are liars. She has been quite low recently and just the mention of Fortisips has her in floods of tears. Our local hospital who attempted to put an ng tube in her last Autumn made it such an awful experience for Ella that she won't even talk about it with me.
I know things will get better, just feeling very frustrated with things at the moment. Thank you for all your advice and kind words, and I'm thinking about all your children and wishing them well xx

 

[Stephyjane]

Oh and thank you for telling me about the guest pass at the Disney parks, that sounds like a good plan for us. Especially with Ella having Infliximab the day before we go. She is still on crutches from the reaction from her last infliximab.

 

[positivemum]

Disney were amazing and really helped us. Same at Seaworld. Universal and Islands of adventure poor for his needs and too hot as lots of concrete. We were staying in Kissimmee so could do Disney and go back to hotel for a break toilet etc and then head back in again. If you pay for car park at a Disney park you can come out and use that ticket in another Disney park on the same day.
Our son thought disney was the best and he is 14.

When do you go? Jealous!!

 

[Tesscorm]

I agree re limiting the veggies/fruits - we were told to avoid all seeds (sesame, pumpkin, etc. as well as tomato, berries, etc.). Re the cucumber, my husband 'may' have IBS (at least has a sensitive tummy at times) and cucumber skin, specifically, is terrible for him.

Totally agree with the Fast Pass at Disney!!!!

When we went on holidays a few months ago, I took Boost and Ensure shakes with me. Stephen has been on supplemental formula for almost two years now (thru ng tube) but, as he wouldn't be having any while away (ie too complicated to take tube, pump, etc. and he didn't want it anyway), I just packed some shakes. Tried to get him to have some each day (not very successfully) but my main reason was that if he felt ill, at the very least I knew he could get some nutrition from the shakes. He's actually going away next week (without us ) and he will be taking shakes on this coming trip as well. Again, it's not really essential that he has one each day BUT, they are 'back-up' should he feel ill while away.

Not suggesting you need to take them with you; in Florida, you would have no problem finding them there if Ella needed them.

I really, really hope the remicade begins to help her!! And, that all goes well for your trip!!! :sun:

 

[Stephyjane]

We go on July 19th. You should have seen the GI's face when we reminded him of our holiday, screwed it up as to say we were mad. His advice was to take lots of pain killers with us. Paracetamol really helps.... Not!!
It may a good idea to try some of the different formulas whilst we are there, just to see if Ella finds one she can tolerate, I'm not sure how easy they are to get in the UK but I'll try anything. We usually just put snacks in a bag when we go out for the day so could put some in with them.
Ella always looks really well, when in reality feels awful. One thing I really struggle with is other 'mums' from school questioning why Ella hasn't been in school etc and how well she looks. I just tend to mumble something and change the subject. Ella is very private about her 'crohn's' and when we have told someone, why is it that person always knows someone who has Crohn's and once they figured out what they could eat was fine. If only it was that easy. Sorry for rambling it just annoys the hell out of me. Xx

 

[Bubbly]

Hi, just wanted to say hello from one uk member to another.

My son 14, was diagnosed 2 years ago, and sadly still not in remission fully. He is treated at Addenbrookes, Cambridge, great team and always on the end of the phone. He was initially put on liquid only diet, Modulen, which lasted 5 days and ended up with us rushing him back to hospital, refused to take them, became dehydrated, awful to see and they put him on steroids straight away, which he took for 4/5 months, then the sickness started, violet, awful and always at night, scans showed narrowing, so surgery booked so remove the part, however when on table it had gone! The believe it was due to the low residual diet he had been on while waiting for surgery (8 weeks) and allowed it to clear up, however they did the marble run test, yep, marble passed down and it stopped 3 or 4 times which showed other narrowings, so they performed strictoplasty, on those areas, all done keyhole, in hospital for a week, and at the time recovered well, gaining weight etc, than january all went downhill again and resulted in bloods/stool sample taken, bloods slightly high, but not to bad, stool sample over 1000, so scopes and mri done which sadly confirmed worse fears, inflammation everywhere, so unfair. So given the choice, steroids or infliximab, we choose the infliximab route, and this had been going fairly well, so side effects until the 4th one last week, which not sure if related or not, almost like he has a tummy bug, just posted about this.

Crohns is certainly a rollercoaster of emotions, for child and parent, and the one thing i ask is to please keep a close eye for sign of depression, my son used to have a book and still does, to write down how he feels about things/life etc, i read it one day and was shocked by what i read, to cut a long story short once i mentioned this to hospital, he was seem very quickly by a specialist, who he allowed to read this book, and she was also shocked along with all the team who care for him, he is begining to feel alot about things, and he is still being seen and we all feel he is improving.

As you mentioned, other children and parents dont really understand this horrible illness, as you cant see it, we have also experienced this, even with family members, and my son is also private about his illness, only told a couple of best friends who have been great, others have said things like 'thought you had left' etc, which dont help.

As you can see i ramble away also, i think it does us good, as so many people dont understand what we going through, oh and the people that say to you 'oh so and so has crohns and they are fine, they do this and that' arrggghhhhh they really annoy me! Then the ones, who confuse it with IBS, doesnt matter how many times i tell them, they think they know best and tell me what i should be doing!!

One last thing on this very long rambling message, have you hear of 'Over the Wall' they do some camps for children with long term illness, they have a facebook page and also on the internet. My son went last year to Dorset, had a great time, did him and also us the world of good, medical time there at all times, so many activities to do, rest times, fun times etc, he has also managed to get a place this year. Maybe worth a look.

Rambling out of control, i will go, fingers crossed and hope you all manage to have a good holiday x

 

[Stephyjane]

Hi Bubbly, thanks so much for your reply, what a roller coaster your poor son has been on. I really hope Infliximab is his magic and keeps him well.
All our children go through so much, it's really not fair.
Ella sees a child psychologist who has been great as Ella has gotten quite low.
We had a long talk today about everything as she is feeling very poorly today, and I think it is finally sinking in with us all that, however unfair and awful this is, Ella needs to be strong and do whatever she has to do to help herself get better. So, if the Dr still thinks it will be beneficial for Ella to do the EN we will start it after her b'day and our holiday. So watch this space xxx

 

[Bubbly]

From what i have read on here, the EN is excellent, and it really gives everything a rest, the child wants to do it and understand everything involved. Sadly with us everything happened so fast, diagnosed and in clinic within 2 weeks! Think it was a shock to us all, and hadnt really been given the chance to grasp what was going on. I do wish we had tried again, somehow, but he wouldnt do it, and i mentioned it recently and he is a stubborn boy, so no point with him, the hospital understands this.

Look forward to hearing that you all had a fab holiday and also progress reports on how the EN goes, really hopes it works for you xx