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Could this be a flare?

Hi,
A little update on Ella, beginning on Dec Ellas wbc dropped and her neutrophils were severly low, so she has to come off her meds.
She was on Infliximab, which she is not having again due to side effects.
100mg Azathioprine a day and 4 x 500mg Sulfasalazine a day.
Unfortunately Ellas blood count hasn't improved yet and they are talking about doing a bone marrow test in Feb.
The last couple of days Ella has been having fresh blood in her stool, it doesn't hurt so I don't think it's a tear. She has also had a couple of burning tummy pains. She is so tired and her joints are achy, which has been ongoing for a while.
I took Ella for some blood tests today and managed to chat to her dr, who has ordered a calprotectin test for early next week.
I'm really worried that if Ella is flaring that they wont be able to do anything to help as meds are off at the moment. She absolutely refuses the suggestion of EN after past experiences. It's like being in no-mans land.
Any suggestions would be so helpful.
Also I'm struggling to understand why they may do a bone marrow test when it is drug induced neutropenia.
Thanks for taking the time to read this. Steph
 
Grace has the same problems, low WBC's and low neutrophils. She had this for awhile so I couldn't tell you if it's flare but to my untrained eye it sounds like it might be.
To bad about the EN. Once their of age there's little one can do. I feel for ya. I do know that crohnsinct would do special things for her O during EN. I'm sure she'll be along.
Hang in there and keep us updated.

Hugs
 
Hi stephyjane, sorry I can't really say wether it would be a flare or not as I've never had blood in my stool, or any of the issues you wrote about, but is she having regular blood tests. To see if crp's are elevated etc? It must be terrible, I can't imagine my little girl having blood in her stool and not being terrified about it. Hope she gets well soon xoxo
 
Hi Stephyjane, I am fairly new to all of this. My daughter Devynn was diagnosed in Dec 2009 but I REALLY started reading and researching and joined this forum about a year ago. To me, it sounds like it could be a flare. From what Devynn's dr's told us, remission is when you are symptom free. Flares are when things start happening: joint pain, mouth ulcers, stomache pain, rashes, fevers etc. My daughter just started on Sulfasalazine (same dosage as your daugther) in Nov and she has been (*knock on wood*) doing very well since starting. I hope your daughter feels better real soon. I hate when our kids are not well :( ((((hugs)))))
 
hey steph. i hope u get better results monday . when u find out monday if they havnt risen ask them about the wbc infusions u can have to see if they can balance everyhing out . ive read that the aza reduces the neautrophils and when they get to a level any bacteria or infection can sneak in and keep them very low with out presenting as a full o . if her neautro and wbc was o.k before then mabe its just the aza taking its time to leave her body since shes been on them for 6 months so fingers crossed .xx
 
Thank you
Farm wife: firstly your Grace is super cute and such a brave girl :)
Ella had an awful experience with a NG tube last Oct when she was in hospital, handled totally wrong by nursing staff and so is so scared or even the thought of it. She got so poorly they had to give her the maximum treatment she could have, which is why I think she now has a really low wbc and neutropenia.

Irene3: Ella is having weekly bloodtests and her Esr has been really good. The last calprotectin test Ella had was a couple of months ago and was 1485 but was over 2000 at her poorliest, so it will be interesting to see what it is now.

Devynnsmom: I have to agree Sulfasalazine seemed to be working really well for Ella too.

Lewismum: thanks. I wonder if that's what the bone marrow test is for, to see what treatment she may need to bring them back to normal. Fingers crossed for Monday
 
Does sound like a flare, but I hope that it's not. Those drugs do tend to hang around in the system for a while, so maybe lewis s mom is on to something.

Would she drink boost kid essentials or pediasure as opposed to the tube? My son had to drink them for a while back in the summer/fall. He is 15 and the GI just pretty much said "Tube or Drink?" and neither is not an option! We did reward him for compliance with some fun things since he couldn't eat. Iit's not fun. But I worry so much about him learning to be responsible and taking care of his Crohn's on his own, we just had to make him do it. It may be worth a shot. You can get a "bullet" type blender and make shakes with the drinks.

I hope you get some answers soon!
 
Yes it's just such a shame that whilst we wait for the counts to recover the threat of flaring is there.
Ella absolutely hates milk shakes, we have tried Elemental 028, juices, Fortisips, shakes, juices and puddings. She managed one Fortisips a day split into tiny amounts. I do think with Ella a lot of it is psychological and she can be very stubborn when she wants to be. I have told her sometimes it will be out of my hands and the dr will do what they have to do to make her well. It just breaks my heart to feel so helpless.
 
I wonder if there are any powders with protein/vitamins/calories...Would she drink smoothies with ice, juice, protein powder, maybe a banana, yogurt? Just a thought. I know that helpless feeling so well. We never want that feeling to accompany problems with our babies (no matter how old they get!)
 
I shall look into it. I've read a lot on here about juicing but I'm not sure if that would be right for bowel rest. Thanks for your help :)
 
It just might work since it would be easily absorbed. I'd check on some of those gassy/acidic veggies and fruits though. They might not fly...Good Luck!
 
Another thing I've noticed this past month with Ella is she has extremley sweaty hands, so much so that they are wet. She isn't hot as they feel quite cool most of the time. When she was really poorly she used to have night sweats, but this is all of the time and sometimes her hands look like they have been in the bath. The dr dismissed it as nothing when I mentioned it and made me feel a little silly mentioning it.
 
Stephyjane, don't ever feel silly mentioning things you notice. You never know what it could mean, and maybe its nothing. But I'm sure they are used to all sorts of different symptoms. It could be nothing, or it could be something that you or I would never know because we aren't doctors. Devynn has sweats (night and day) when she's not feeling well. Sometimes she doesn't even realize she's sweaty.
How is Ella feeling today?
 
She's not too bad today thank you. Very tired but just made some cookies as Grandparents are coming for dinner. It's so hard not too be consumed by this all of the time. My nan, Ella's Great Grandma passed away early today so feeling sad today which just seems to magnify everything else.
 
((((((hugs)))))) I'm so sorry for your loss. Stress can and will affect this as well. This is really the kind of stress you can't get away from. Losing my Mom was what threw Devynn into a flare that lasted 18 mos. It is def all consuming. Just try to take things one day at a time.
 

DustyKat

Super Moderator
It does sound like Ella is flaring Steph. :hug:

Ugh! I wish doctors wouldn't make you feel silly or inadequate for mentioning something. :( You did the right thing by saying something Steph so keep doing it because it is another piece of the puzzle even if they are dismissive about it.

When will you have the blood results?

I am so very sorry to hear about your Nan...:ghug: Such a difficult time for you on so many fronts.

In my thoughts, :heart:
Dusty. xxx
 
he hunny . im so sorry about ur nan . sending hugs to u all . i no ho u feel when u feel it consumes. . its all i ever seem to do at the minute is talk about crohns and lewis treatment blood tests neautrophils wbc .lol crohns is our life a the minute im sure things wil get bettr soon steph u gotta be positive and stay strong m here if. need a chat finges crosed for monday and hink no news from hospital is good news they musnt of got worse as they havnt rang u hun .xxxx
 
Thanks everyone x
Dusty hopefully we will get Ella's blood test results Mon if I can get hold of dr. Sometimes much easier said than done!

Ella slept in until 11am this morning and not feeling great but was doing gymnastics in the lounge last night to entertain the Grandparents :)
We'll have chill day today. We are supposed to be getting snow tomorrow.
 
So sorry for your loss. Grandparents are so wonderful. I was heartbroken when I lost my Grandmother.

About the hands...Ryan's hands sweat when his blood sugar is low. If you have a glucometer, check her blood sugar. You could also get her to drink some orange juice or have some peanut butter, a sip of coke, etc... to see if it stops.

I am thinking about you and your family in your loss.
 
howve u got ontoday hun . well our plan is this . start domepridone they said he has reflux and his food is t moving throuh as it should . go back n aza as they think it was an infex that caused his bloods to drop we did see and improvement and i said we can always stop it again as his bloods have risen well do hem again thurs .we avin i flixima every 4 weeks now. they sending him to a phycologist aswell to see how this is effecting him and if his tummy pain is physcological i said its very real the pain he has we dont feed his illness but we thought that at he beginni g that he was playing up but to many times when hes been really looki g forward to atuff and he has pain at school he gets pain . i said well do it only to lay it at rest that its not in his head and if u can help him cope better im all for it . he actually listened to me today . he noticed a swelling o. lewis lip also had a look and said he wnts to review nxt mobth . he sqid im sorrybto tell u but u can get crohns of he lip i said do t tell me that lol he knows i new this . but it could just be were hes bitten it amd kepted picking thats my theory qny way well review in a mobth . hope ellas o.k and not to tird .xxxx
 
Hi, I'm glad you've got a good plan. Sounds like they are being very thorough.
Ella has seen a psychologist from the start and it really helps. Ella loves the lady she sees and she's taught her some relaxation techniques and anger release things to do. I think because a lot of things haven't been successful with Ella and her Crohns is being a bit tricky Ella gets angry at the drs as she thinks they lie to her. So many times they have said 'do this and you'll be better' and she is still waiting.
Talking of waiting ........ Yes still waiting for my call back regarding blood test results. So I can only assume there is no improvement as they would want to start some meds again ASAP.
I hate waiting as my stomach is in knots until I know. :(
 
aw i hate that waiting to . especially when u think hey should be doing more . i do hope they ring with answers at my hosp they have a meeting on a monda night i sometimes getva phone call of the ibd burses the nxt day . fingerscrossed . lewis has said the same as ella he said dr fagbemi is lying to me he dosnt no what hes doing he said last time my crohns is better and i ended up in hospital . im going to say to him make my tmmy bettr he says . lewis says he dosnt understand what hea talking about he does hqve a very broad jamaican accent lol. lew meet a boy in the clinic today with crohns he was 8 they must ov ben talking about there illness lew came running up to me wide eyd and said ive found anova boy with crohns m i really think he was the only one they were talking about here meds the boy i got told takes pred lewis said if u need infliximab its good it makes me feel better so dont worry . god hes grown up so much . hope u get a phone call soon hun . how is she today and how r u with everything going on.xx
 
Hope you hear soon.

I could be wrong but I think they could still give her budesonide or prednisone. Prednisone tends to stimulate blood cell production actually.

It is worrying that her counts have not come back up.

There are medications that can be used to stimulate the bone marrow. I hope she doesn't need that. My son did one of them as part of a clinical trial to treat Crohn's and it involved daily shots.

Best wishes
 
Well I still haven't heard back from the drs, I have called each day and his secretary has said for me to be patient as he is dealing with it. I said I only wanted to know if there was any improvement in her results. But she can't tell me.
Ella has been off school for the past 2 days. Has a low fever which I'm determined to keep low to avoid the hospital and today has had sharp tummy pains nearly all day. I did try to encourage her to go to school this morning but she got upset ( which is not like Ella ) so she must be feeling poorly.

I have a question. Ella has been off her Azathioprine for over 6 weeks now, so does that mean if and when she restarts it we will have to wait months again for it to start working?
Also Ella has only just tapered off Pred beginning of Dec after being on it since June, and she ended up having no response to it, which is when they added Infliximab. She has also developed small cataracts in her eyes which has impaired her vision. So I am loathed to go down that road again.
Fingers crossed when I eventually get a call back it will be with good news.
Thank you for your replies everyone xx
 
Golly, you have not had an easy time.

Yes, she will have to wait for it to kick in again. As I understand it, AZA works by damaging the B cells when they are being "born" so that they die off early. That way it reduces the number of them alive at any one time.

did it seem like it was helping?

If pred didn't help then why would she go back on it?

Or do you mean that it helped while she was on it but when she weaned off she immediately had symptoms come back?

I think I read that EN has been a big problem.

Maybe it's time to talk to the GI about doing a Mic-Key button (small tube surgically implanted that goes into stomach from skin) so she can have feeds directly into the stomach. She would still be able to eat if allowed/wanted but could also get formula if needed.
 
Hi Patricia.
The first course of Pred Ella improved slightly on, I could see she wasn't 100% but the dr seemed quite pleased at the time she was also on 75mg Aza. Within days of her finishing, which was last Sept, her symptoms came crashing back, a lot lot worse, we ended up in hospital for 19 days where she had iv anti biotics and steroids. After 7 days she had shown a response and they tried to switch to oral and within hours the chronic diarrhoea and pains were back, when they put her back on the iv steroids, this time there was no response. That's when they said we were to have Infliximab, so Ella had the first 3 loading doses which worked wonderfully on her bowels, but she started to have increasing joint pain to the point that she needed a wheelchair to go any distance. There is still a question mark to whether its arthritis, though her GI is pretty convinced its side effects from the infusion. So I have been told she is to have no more.

The thing that aggravates me is I have now been told she may need a bone marrow test, but no real explanation to why as I would have thought with drug induced neutropenia it would have rectified itself. And the longer they leave her the more her symptoms will come back.
Steph x
 
It does sound frustrating and very upsetting.

I know things work differently there than they do here but these are the specialists I would want involved in my child's care if I were you:

Ped GI who specializes in IBD
Pediatric Rheumatologist - who will look at both JRA and Lupus
Hematologist - specializes in blood disorders

and possibly an Immunologist - I would ask the Rheumy about this I think

My guess is that they are planning the marrow biopsy exactly because her counts have not recovered the way they should have done.

The LUpus-like syndrome that can rarely develop with biologic treatment can be very painful and last a while after stopping the med. The usual treatment is prednisone but it sounds like that may not help Ella.

All of that is why I suggested the Mic-Key button. Did she do a course of at least 2 weeks of exclusive eneteral nutrition? did it help?
 
Thanks Patricia,
We are being looked after by a Rheumatologist and I know her GI is consulting a haemotologist. I know they are being very thorough with Ella but you're right it is frustrating waiting.
Ella never managed more than a couple of days EN and the ng tube was an abdolute disaster.
When I eventually get a conversation with Ella's dr I will mention the things you have told me about. Steph x
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hi Stephy, we've not met but I just read this thread through and was hoping for a good turn at the end. I see it's been several days since your last post and no resolution. I hope things are on the upswing. Did you ever get the test results?
 
Hi sorry that I haven't updated for a few days. Ella started getting more abdominal pains and a temperature so they wanted to admit her for blood culture tests and iv antibiotics. Her neutrophils are still low and her hemoglobin slightly low. They put her on Tazocin until her tests came back.
Her blood culture test was negative so they have now stopped iv's.
The dr who saw her in hospital yesterday thinks her Crohn's in rearing its ugly head again. She now has watery diarrhea. Could they be the antibiotics?
We have one more blood test in 5 days time to check blood count and then posdible bone marrow test.
Ella seems ok today. Tired and bit dark under the eyes. Me too!!
But very glad to be home xx
 
Hi Dusty, I had decided until I could put something positive I'd try not to post.:)

No change with Ella, they are doing a c diff test because of the diarrhoea, but I don't think she has that, the volume of stool she has at the moment is huge compared to what she is managing to eat, so I wonder if its a malabsorption issue. (I've been reading :))
She did manage 3 days at school this week but is curled up in bed today feeling awful.
I spoke to her consultant yesterday and they are waiting 2 more weeks to see if her blood improves before possible bone marrow test. So that'll be over 2 months off of her medication. So plod along we shall.

One thing that made me chuckle this week though, I got a letter regarding her last blood tests and they had typed 'blood testicles' instead of tests. It did make me laugh! I wonder what his secretary had going through her mind when writing my letter :)) xx
Have a good weekend x
 

DustyKat

Super Moderator
Thanks for the update Steph. :hug:

I hope things settle soon, bless her. :heart:

What indeed! :lol:

Dusty. xxx
 

CarolinAlaska

Holding It Together
Hi Dusty, I had decided until I could put something positive I'd try not to post.:)

No change with Ella, they are doing a c diff test because of the diarrhoea, but I don't think she has that, the volume of stool she has at the moment is huge compared to what she is managing to eat, so I wonder if its a malabsorption issue. (I've been reading :))
She did manage 3 days at school this week but is curled up in bed today feeling awful.
I spoke to her consultant yesterday and they are waiting 2 more weeks to see if her blood improves before possible bone marrow test. So that'll be over 2 months off of her medication. So plod along we shall.

One thing that made me chuckle this week though, I got a letter regarding her last blood tests and they had typed 'blood testicles' instead of tests. It did make me laugh! I wonder what his secretary had going through her mind when writing my letter :)) xx
Have a good weekend x
This doc could have a voice recognition dictation program. I have one of those in my office and it is often doing awful things like that to me as I dictate! You really have to watch it! LOL
 
Steph that did make me chuckle. Blood testicles hahah , hope Ella starts to feel a bit better Hun she's had 3 good days so I bet that's taken the strain a little I always pray when lew has a good couple of days I think is he going into remission we've had 5 days so were back to full energy , cause last nite he had a very bad nite bum tummy verucca everything was sore hs also go very sore swollen lips. I,m trying my best to keep his lips moisturiser but they seem to be getting worse our last apt the doc said it could be Crohns , I told him don't tell me that he just smiled and said let me no how he's getting in with that. Think if it dosnt settle nxt few days he's gona have to see him ,we have our first bloods nxt fri for his aza I hope there good . Send my love to Ella hope he feels better after a day in bed, big hugs to u both .xxxx
 
That was good she managed some school. Sorry to hear she is still not feeling great. Hope all the tests, etc come back soon so they can start treating her and get her better again.
 
I'm so proud of my girl. Even though she feels rotten, she got to meet and shake Prince Charles hand this week when he was visiting near her school. And now today she is taking part in a workshop with the Royal philharmonic orchestra before playing in a pre concert performance at our theatre tonight.
Love how all our children do not let things get in their way. In fact I think sadly this makes them all the more determined to succeed. Xxxx
 
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