Moving on to Humira

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I hope diluting it helps! And, some of the Boost recipes are exactly as you mentioned above - using the shakes with fruit, etc for a smoothie. Hope he can tolerate one or the other. Another idea - my daughter adds a scoop of protein powder to plain yoghurt... if he likes yoghurt, perhaps you can try flavouring yoghurt with the carnation powder?? Have no idea how that would taste though??

Funny about him and sweets, S was/is the same. I was constantly trying to find ways to get fruit/veggies into him as a small boy... thought choc fondue!!! Get him to acquire a taste for fruit with choc and gradually withdraw the chocolate... he tried just the melted choc first..., didn't like the chocolate! Found a recipe for brownies made with pureed spinach - they were delicious! He took one 'polite' bite, said 'sorry mom, I just don't really like brownies'! :yfaint: Although my daughter was very happy with my experiments! :lol:
 
Has he tried Duocal? It's a powder that you can put in food. M, as you know, is the queen of being picky, but she said she couldn't really taste it. She didn't tolerate it but I think that was because of the gastroparesis. She had it in oatmeal and pasta.

I'd let him try all the shakes he wants and then if they don't work, suggest trying tube feeding again ;).
 
C is the same way. I just made brownies the other day and said how about a hot brownie...nah I don't like brownies.

Its so foreign to me because I always loved sweets. Eat cookie dough. Check. Eat cake batter. Check. Chocolate in all forms. Check. Cupcakes, doughnuts, candy bars, cookies, most anything that contains sugar. Check, check and double check.

GI nurse says if he wants to try different drinks for weight gain go for it. Also told her about the symptoms he's had lately. Just supposed to keep them in the loop.
 
Well Clash this is a hard one because if the weight issues are because of inflammation.......

But I know he is like O and just a really skinny kid. we don't use any processed foods so protein powder, carnation instant (moment of silence) etc are out for us.

Here are some things that work for O:

Avocados...every day!
Olive oil dripped on everything
Lots of eggs
Loads and loads of good healthy carbs (although on IBD-AID not around lil sis)
Loads of nuts or nut butters

I know that this may sound like a heart attack waiting to happen but I eat the same way and my cholesterol has gone way down over the years...all I did was cut out the processed stuff so maybe there is something to the healthy fats.

I'll keep thinking on her tips and tricks.
 
Hmmm... M loves sugar (she really needs to eat less sugar :eek:) so all her snacks are dessert related. We also use a lot of olive oil in things. M like almond butter too.

M is also naturally thin but with her feeding tube, we had to slow feeds so that she didn't gain too much weight!!! I can honestly say, I NEVER thought we'd get to this point. In May, she was 80 lbs! She is now 104 lbs :dance::dance: and looks great!

Made me wonder about being "naturally" very skinny - would they be this thin if they didn't have IBD?

I hope the shakes work for C!! Good luck!
 
Maya142 said:
Made me wonder about being "naturally" very skinny - would they be this thin if they didn't have IBD?
Click to expand...

^^^^^yeah that
Last year DS hovered at 89 lbs till April this year and barely gained
Figured he woukd just be a skinnier IBd kid again

Once we added partial en and crohns exclusive diet
Yep he is up to 100 lbs
So inflammation and calorie absorption can plan a role
 
My ferritin was really low back in april. I was scheduled for iron pump for 15 rounds. Just got done a couple of weeks ago. I'm hoping my body will keep up and not drop my levels again. I am starting humira next week for a fistual.
 
Maya142, when C was on EN he gained around 25 lbs or a little more and thats when we had to back him down. Of course, he then only maintained and any lower amount of calories and he settled back at his original weight.

There is no doubt to me that he would be naturally thin. Both sides of his family are. His Dad was 115 at hs graduation. And me 102lbs in hs his sister didn't reach 100lbs.

So, I can see him with maybe 7 to 9 more lbs on his frame as his norm if CD hadn't come around.
 
It's so worrisome when the kids are so thin. I know you said C had only had peptamen with the NG tube. Would he be willing to try it by mouth? N was never able to tolerate Boost/Ensure/Carnation... Peptamen was a life saver his first year in college and during the summer when doing and internship. He went from drinking peptamen Jr, then to the adult vanilla peptamen because he said the jr was too sweet, and finally the unflavored/unsweetened version which he said tasted bad but he got used to it. Portability was a big plus. His problem was that he used it as meal replacement rather than as a supplement so he never gained weight on it. Home made shakes are probably the best/healthiest....maybe he could try the peptament when he is on the go? At least, they are easily absorbed and don't sit as heavy. There is another powdered product we used for a while called Absorb Plus which he tolerated well since you could adjust the amount of fat you use, but it was quite expensive.
 
awmom, you bring up a good point. I think meal replacement instead of supplement could be an issue with C as well.

He wouldn't drink peptimen I don't think. He has only tasted it while setting up his ng.

I've told him check the gym bar, Buy things to make smoothies or check stores for powders. It's truly him that is on this weight gain track and I don't think it relates to CD as much as there is a training center at the college and some of his buddies go.

He supposed to be moving out soon. So if he wants to gain weight he'll have to take control of that. I think his diet in general will have to change since for the most part he eato all but one meal at home. I think he'll have to incorporate a lot more processed foods. So he'll need to determine what he wants to incorporate with that.

I have given him these ideas so he has some options.
 
Does he like juice? Both boost and ensure have juice kind of shakes - ensure clear and boost breeze I think. M wouldn't touch them so I have no idea how they taste.

Replacing meals with shakes was our problem too which is why the tube with overnight feeds worked so well.
 
Good point on meal replacements... yes, that is what S has often done with his Boost shakes. He grabs one in the morning as it's quicker than making breakfast or any other time he's rushed, ie before a game, class, etc. - healthier than something he'd grab on the run but doesn't 'add' calories to the day's total (if anything, may even reduce the day's calories given the high calorie count of most fast food).
 
S likes the Boost juices. I have read here that there's an after taste (or something) and I did once ask S but he said he thought they tasted like regular fruit drinks.
 
Caitlyn hates all of those shakes. We have tried so many. I have just been trying to stuff her with cakes and ice cream.
 
I know what you mean with him probably not wanting to drink the Peptamen. N said he would NEVER drink it....well, he ended up drinking even the unflavored (which is very nasty). Now however, he doesn't drink it much. He moved into an apartment rarely eats out because it never agrees with him, and is now cooking!!!!I never thought I would see the day when he would do THAT!!! He has not gained any weight, but as of 4 weeks ago, he has not lost any either. I did have a scare last week because he said he had so much to do and was so stressed he kept forgetting to eat!! I think those are the times when the supplements do well as meal replacements!!
I know you said he is moving out soon, and I'm sure he'll figure it out. After all, I know he has had the BEST training from home!!!!
 
C's check up rheumatologist appt was today.

I swear this joint thing just flat out confuses me.

So more finger xrays because knuckles were large and she wanted to compare to April xrays.

She's really pleased with the JSpA side and his hips/lower back. She thinks it is fully under control with humira and feels C is one of the rare ones that gets relief from mtx.

The polyarticular side looks good from pain side since C has had very few episodes in wrists but fingers concern her.

She will be out of town when C has scope bit wants us to call and update the nurse about what GI saw and let her know when biopsies are posted.

She doesn't believe the anemia is from the joint disease side because his levels are a lot lower than she sees among her other patients that deal with JSpA. But interested to see if iron is up at scope time and scope results.

Overall good visit and C loves this doc. Beyond the fact that I've never met someone that talks as fast as she does, I like her too.

Oh btw, the "sutures" at hip on xrays that she mentioned last visit but we forgot to ask about. She meant sutures or suture material that radiologist commented on film. She assumed it was from his small bowel resection. She sent a note to radiologist to review again. But C's xrays were in April and his surgery the August before, would their still be suture material? Because if so...well...yuck.
 
:lol: Glad we now know what she meant by sutures!!

I'm so glad C's joints are doing so well. I hope the finger x-rays are clear too (fingers crossed ;) ).

It's interesting that MTX is helping his back and not his fingers as much - now that's unusual! My girls also swear that it helps their SI joints/spines even though studies say it doesn't. I guess they're all in that minority!
 
So glad he had a good apptmt!! I hope the results from x-ray show that there is nothing concerning! :)

That is surprising re the sutures! I wouldn't have thought they'd last that long before dissolving??

Haha about speaking quickly! I've worked on trading desks for years and all conversations are very quick, half sentences! I often feel like other conversations are in slow mode and I have to stop myself from tapping my foot or fingers! :lol: (Wine helps even things out!:ybiggrin:)
 
Maya142, she said the same thing about him and the mtx. She said rheumatology can already be murky area and then C decides he doesn't even want to follow the rules they have!

I think the fingers are fine. They didn't look more swollen to but what do I know.

Tesscorm, I would have a nervous breakdown in that environment.
 
I find it all very confusing too. I thought I had done my homework, but I left the rheumo office more confused than when we went in.
 
Okay, one down one to go! Hubby just called and daughter's wisdom tooth extraction went well. They're home and she's sleeping. C and I are getting ready to head to the GI office for scope. C's prep went really well.

On a side note, there was a problem with the rooms we were supposed to stay in (we reserved two adjoining and they didn't have it ready) so we got upgraded to a presidential suite! Pretty awesome 2br 2bth huge living room and dining room with complimentary room service woohoo!
 
Well, if you've got to prep... that sounds like the way to do it! :D

Hope all goes well!
 
Complimentary room service! Their no dummies...how much is a person prepping for scopes going to cost them?! :rof:

Good luck!
 
I hope all goes well. My oldest gets her wisdom teeth out on the 30th. Ugh! Glad for you for the unexpected room change!
 
They took C back about 1:30 so just waiting for him to return.

That's the latest he has had a scope scheduled. He was getting nauseated and light headed from mouth food. Center is set up to start with the youngest first so at 19 he was down the list a bit.

He was in good spirits and cutting up with the nurses and GI though so all was well.
 
Our hospital does that too - M is usually one of the last but it's never been 1:30. Poor C - that's a long time to be hungry.

Sending hugs - hope he's back soon. We're thinking of you :ghug:!
 
Not a good day. C is inflamed throughout. Report states rectum, sigmoid colon, descending colon, at the splenic flexure, in transverse colon, at the hepatic flexure and in the ascending colon is congested, erythematous, ulcerative and vascular pattern-decreased mucosa.

Also congested inflamed ulcerative and vascular pattern decreased mucosa in distal ileum and he mentioned the surgical site having active disease but the opening was not narrowed.

So the colon is something new, in the past it was located only in the small bowel and mostly at IC valve. Scope before surgery showed possible slight inflammation in the cecum and imaging at dx stated nothing at rectum but GI read it and felt there had been past inflammation and that was why he had a skin tag.

Anyway, not a good day. Everyone is really down.

GI said it wasn't severe inflammation mostly small apthousted ulcers and if it was before meds he'd be confident but that C is on mtx, humira and entocort and that the disease seems to have progressed from August colonoscopy when he was visually pristine but biopsies showed active inflammation.

I just hate Crohns!
 
I am speechless! So sorry about this Clash! I despise Crohn's!

How can this be? He was basically asymptomatic right? Just the anemia issue? What a puzzle! Did the doc give any indication as to next med step or was he to taken back to speak about it yet.

Just sucks all around!

:ghug: to you all.
 
He wants C to move to weekly humira. C is really fighting this. C was out of it when the GI came to recovery so I guess I'm going to have the GI speak to him by phone or asomething soon as he can at a followup.

C doesn't think he can do it. He said the pain is too much and he hates and dreads the shot now. We discussed different strategies but right now C isn't open to any of them working.

The GI also mentioned entyvio now or after giving humira weekly a try. He again brought up his concerns that C may not respond to tnf biologics. But he also had concerns about entyvio if the inflammation gets more ulcerated, something about it doing really well on first layer like UC (complicated explanation which may have included something about white cell flow?) but can struggle with deeper layer ulceratuon. I don't know it was all a blur.

Entyvio I don't think helps with JSpA so it may be out anyway.

Not sure what to do. I'm sure we'll discuss in depth at biopsy follow up.

Just blech yuck sucky feeling at seeing the images and C:s reaction to once again flaring and being asymptomatic.
 
Great big hugs
So not fair

I can say DS was like C
Hate dreaded the shots
Screamed etc....
Lidocaine added to the syringe does make a difference
But asking him mental questions during the injections that he has to answers
Blocks the pain signals more than anything else

Entyvio is not designed to work for JSpA

Stelera and simponi are
 
Yeah, I thought I remembered you and Maya saying that about entyvio.

The lidocaine was one of the strategies I mentioned. We're going to discuss it with the GI. I also mentioned therapy since the dread starts 3 days before the shot and makes the fear of the pain worse and is certain to be making him tense. Right now, he can't see beyond the fact that it's worse than last scope and throughout. He's using that to say humira isn't working. I know this is partly just a knee jerk, upset, angry reaction. So I'm going to find a psychologist next week.

There is no pediatric chronic illness therapist near us. The closest is about 2 hours away and that isn't an option with his school and work schedule. There is a guy that works with kids and a friend of ours works in his group so I'm gonna talk to her.

I'll try with the questions to redirect attention this Sunday shot.
 
Sorry Clash - we have been told over and over that Entyvio does not work for arthritis.

Stelara is supposed to be approved for Crohn's soon. It did well in a small AS trial but the researcher we see says he hasn't seen great results with it yet. However, it is approved for psoriatic arthritis and he definitely does think it is an option and worth trying for M.

Sending bigs hugs - it is really hard when your kiddo does not respond to anti-TNFs. We're pretty sure M is one of those kids - her AS is not so great on Simponi (though her IBD does seem to be responding). I don't know what's next for us either, the options REALLY are not great.

I have heard from several JIA moms that adding Lidocaine to Humira made a huge difference. I'd ask C what the harm is in just trying it? It might help. Tell him you'll do the syringe and deal with all of it.

And of course, I'm a huge fan of M's psychologist - she's helped M deal with countless things - 4 hospital stays this year, several NJ tubes, the GJ tube surgery etc.

Another thought - when M was reacting to MTX the way C is to Humira, her pediatrician and rheumatologist talked and prescribed a small dose of Ativan to take before the MTX. In her case, they wanted to figure out if the nausea was anxiety or actual MTX nausea. Well, it was MTX nausea but she way calmer and the whole evening went much more smoothly.

Could C try something like that? Just for a few times, until he gets used to lidocaine and the weekly shots? It might help.

Sending hugs :ghug:.
 
They can't be easy questions he really needs to think of the answers for it to work

Things DS psych did
Have c explain how long the pain truly lasts
( 10 seconds tops )
What other things can he handle for 10 seconds
The problem you will run into is he doesn't see the benefit in symptoms or scopes
So if he doesn't that will be very hard
DS sees an increase in symptoms when it's late so he feels the shot is worth those 10 seconds
 
We have tried the asking question technique - my older daughter has a roommate ask her questions in school (thank you MLP!!) and it really does work.

She also uses buzzy though I'm pretty sure it only makes her not feel the stick (so she still feels the burn of the medication), but she likes it so why not?!

We tried having cake after the shot - that worked better when they were younger, but it still definitely helps.

I can see that for C, making a pros and cons list might be hard, since he's not even sure that Humira is doing anything. I have no real way to make that easier, except maybe to say that if he tries something else, he will start from scratch and with Humira, he's already put a few months in waiting for it to work. Why not give it another shot (pun intended)?!

We found that Simponi took months before M even saw a difference in symptoms (though C is asymptomatic, so this might not even help). And Cimzia is supposed to be the same and people say Entyvio takes even longer!
 
Maya142, that is so funny you mentioned at Ivan because that is one of the things I mentioned to C as a strategy. It was the only one he was up for and only because the iv atIvan worked so well with the catheter reinsert ion after surgery. I made sure he understands there is a definite difference between iv and pill. But I think it's worth a shot.

Yep, MLP you hit the nail on the head the fact that he's asymptomatic and that the use of humira hasn't led to improvement have made for his biggest points in his argument against going weekly. I'll definitely mention the questions strategy.
 
There is a big difference between the IV version and the pill but the pill does work well!

There was a time when M hated MRI's so much that she'd dread them for days, because it hurt so much to lie flat with her toes pointed out (for hip MRI's - they take like 2 hours). So, they gave her ativan and she was sleepy and wasn't too bothered by the pain.

We have used it for anxiety too - works well.
 
So sorry to hear this news. :(

Like Maya, we have also had good luck with small doses of oral Ativan.
 
I'm so sorry. Clash. That is horrible news. I hope whatever you do next is the answer for his deep remission.
 
So so sorry to hear this Clash - yet again we are in a similar position. J had his first appointment with adult GI this week. Weekly Humira is not working despite great blood levels and no antibodies. Inflammation throughout small intestine. Surgery not an option as he would lose metres of bowel. News is so hard to take when there are no outward symptoms. GI trying to get approval for Entyvio for J (he is 17 - only approved here for 18 and over) and hoping to start Jan/Feb. Am pinning all my hopes on it.
 
Oh no I'm so sorry to hear that Chester31! I hope the approval comes through and that entyvio is his miracle med!

It's so hard to keep going through meds and getting your hopes up only to see the med failed them. And when they're asymptomatic bad results can really throw their psyche for a loop.

I hope both our boys find remission soon.
 
So sorry to hear that! How awful for you all to have to deal with when it wasn't expected. I have to say I can see his logic at not wanting the shots weekly if it's got this bad on Humira anyway. Also (and it's just my opinion), the point of meds is to make kids feel better, if the thought of the injection is causing him so much anxiety for days before it, it isn't helping his quality of life. If he had to change to weekly almost half his week would be spent upset, it can't be good for your body to spend all that time in the flight or fight response from fear. Very difficult decision for him and you. Hope whatever comes next finally gets a lasting remission!
 
Clash: T was the same way the second time on EEN "what's the point, inflammation will just come back anyway" Then on steroids, "whats the point"....but the thing is he hasn't fully exhausted Humira...maybe if you explain it that way...that you should try everything in your power with the current drug. I like what someone said about "you are already this far in". There are a few people here who had success after moving to weekly Humira. I don't know about mentioning how long another drug will take to start working. Knowing C and his personality (r teens in general) he will say, "exactly so lets get started".

Just sucks that there are no outward signs, no labs that identify inflammation and the poor kid has to be scoped so frequently.

FWIW - our doc doesn't have faith in Entyvio for Crohn's, especially small bowel Crohn's. My nephew failed all the anti tnf's and tried Entyvio because his Crohn's was limited to colon. It takes forever to start working. A year in he is a fail in Entyvio also.
 
What a terrible disappointment. I wanted to suggest that you encourage him to try the weekly Humira. The upsides are the possibility it gets him into remission without the whole adjustment to a new medication and also just knowing that he used it to the full before moving on.
Our child is very young so it is different but psychologically the shots are tough on her. I bet C is tougher than he thinks he is right now. He can do this. I've read what an amazing guy he is here!
 
Question, if there's no fever, runny nose, stuffy nose or any other cold symptoms except dry cough do you wait to see if it's jus a cold or do you go into the GP?

C has had a cough for a few days. Nothing else just a cough. Well he says first thing in the morning it feels like head congestion but I've not seen that just the cough throughout the day.

His GP is definitely a cold and virus guy. He's never interested in zebras so most appts last 15 mins and end with probably a virus (or UTI) come back in a week if it's worse so I always dread making an appt.

Just not sure is this is normal winter cold and I should give it a bit longer. Unfortunately he's had it since last Wednesday (yeah he didn't mention it before the scope only on the way home, thankfully that ended well..ughh).

Its so funny, always ready to pounce because of CD, so much so that I can't quite remember persistent cough in a kid protocol! Ha!
 
Our GP wouldn't bother doing anything unless it's been going on longer than 2 weeks. But then our gp's aren't always very good!
 
Clash, just catching up.... I am so, so, so sorry at the results. :(

I completely understand C's frustration. Really feel so sad for him. While symptoms are never pleasant, being asymptomatic can feel like get suckerpunched every time. :ghug:

I'd also try to reason with him to give weekly humira a try. I know he's going to feel frustrated and that it's a waste of time but, hopefully, he'll come around to understanding he shouldn't knock out a med too soon. :( Do try the lidocaine, also the mental question - worked really well for S as well when he had to have some painful shots.

I don't have any advice, just sending my thoughts, hugs and wishes that whatever he tries next will work for him! :ghug: :ghug: :ghug:
 
Clash,
I was out of town and just got back yesterday and am catching up. I am so very sorry to hear about the scopes. That is really upsetting.
If you decide to try Ativan I want to let you know it works great for me when I need it, I take it for anxiety.
Entyvio does not seem to work well for arthritis but on the plus side it is working for Caitlyn finally but it did take a while. Since s lot of his disease is in the large intestine it might work faster for him. It seems to take effect in the large intestine much quicker then the small intestine. I don't k ow why your doctor said it doesn't work for deeper disease in the the large intestine though because I have been speaking with some people who have very severe UC and Entyivo is the first drug that has put them in complete remission.
The big issue would be how to control the arthritis though.
This disease super sucks!!!!!!!! I am feeling so badly for our kids right now. They just never get a break!!!!!!
 
Thanks Kimmidwife.

That is what the GI was saying, it's effective with UC because it affects the top layer only. With CD, it's transmural and they've found that with severe ulceratuon through many layers the results weren't as great as those with mild ulceration.
 
Same thing I have read great for UC
Not so good for crohns
And not an option for ds since we found out in April had to hold his Humira for a few weeks
His joints inflame fast with a biologic

Clash hope things improve with weekly
It did take da about 4-6 weeks at weekly to notice a difference
 
MLP, that's the other thing I've wondered about. Inflammatory markers good, last FC normal, and no symptoms so how do we know if it works? Anemia improvement? Maybe do another fc now to get baseline again? It has been what 3 months since the last one? I need to look it up. And I guess he needs another one now.
 
Yikes that would be tricky
I know for Egid kids the only way they know if a food is a pass or fail is a re scope
So every 8-12 weeks a scope to prove 2-3 foods

What does your Gi recommend for monitoring since you don't want it worse and anemia takes months to fix even if things are healed inside
 
You should see an improvement in the anemia (at least we did). How low is his haemoglobin level? The lower in is the quicker you should see improvement.
 
The after scope moment with the GI wasn't long enough to encompass that. Usually, we have a followup to go 9ver biopsies and this time lab work since he did regular work up, iron studies and some tests the rheumatologist wanted done. I should get the schedule followup call tomorrow.

The GI did say C is always full of surprises and hard to read without scopes He also said we have to find a way to effectively track whether shortening the schedule of humira is helping and not lag on it too long but offered know specifics of what he was thinking.
 
His last ferritin was 2 but HGB was only slightly lower than normal, I think. I would have to go back and check.
 
I've read the same about Entyvio - they are using it at our Children's Hospital but mostly for UC and only if multiple anti-TNFs have been failed.

Clash, the thing about Ferritin is that it is an acute phase reactant, so even if it rises, it can be falsely high because of inflammation. M's is usually sky high - way above the upper limit, so it's easy to tell when it's inflammation with her.

I guess scopes would be the best option but I'm sure C would hate that idea!
 
In c case I would expect the ferritin to rise along with the hemoglobin.

When ferritin is acting as acute phase reactant you would usually get a rise in ferritin and hemoglobin would stay the same or fall.

You also need iron studies further than ferritin alone.
 
That was from his previous iron studies done 6 weeks ago. More than ferritin was done and some of the others were low as well. Ferritin was the only one I could remember off the top of my head.

I'm hoping the iron studies done at scope last week come back today. But I guess it could be longer or they wait for biopsies and release it all at once.
 
S's HGB also indicates when he has active disease. We saw a quick jump when he was on EEN (from 106 in end of May 2011 to 133 in August). It began to drift down again when he was on supplmental EN only. But again, steady improvement after starting remicade - from 125 in January 2013 to 148 in Aug. (It still fluctuates a bit - likely everyone's fluctuates a bit - but all within normal range now.) It's not an immediate indicator but, if it will take a few weeks to determine if weekly humira, possibly, small improvements in HGB will be an indicator??

My friend, whose daughter has crohns, once mentioned (couple years ago...) a different test her GI does... I mentioned it here and no one had heard of it being used to indicate inflammation. I think Dusty responded that, while it does indicate inflammation, it's not a test that commonly used for that purpose. Ugh, I can't remember waht it was but I will look through S's thread and will ask my friend (unfortunately, she doesn't usually follow every result so she may not remember??). I will try to get this test name for you! :ghug:
 
Following with FC's and iron levels every few weeks would probably be a good idea and then maybe a re scope in 12 weeks?
I will be curious to see what the docs plan is.
According to our Doctor the entyvio does work into deeper levels but just takes longer to do so then remicade. In fact he was very pleased with the biopsy difference between Caitlyn's scope in April vs October.
 
Okay gurus I have a question.

So non IBD child had her wisdom teeth extracted, iv sedation, followed by oral pain meds and phenegran.

Hers were a difficult impaction the oral surgeon said and she has needed the pain meds on schedule every 4 hours since.

Starting 2 days ago she's had sharp LRQ pain. It has gone back and forth between dull and sharp. At one check during the last 2 days her temp check was 99.1 the rest of the time it has been normal.

I feel like the miralax has constipated her. She can't remember if she's had a bm since surgery on Friday but we know she hasn't since Sunday.

She had a dose of miralax yesterday. And two so far today will do another this afternoon.

How long should it take for miralax to work. Has anyone included a stool softener in with miralax for constipation?

If we don't see results by tomorrow we'll head to urgent care I guess.
 
M had her wisdom teeth out a while ago. She was on Vicodin, took it every 4-6 hours for a week or so. She also had belly pain and nausea with the pain meds and took Miralax on the second day after the surgery. Took another day to work and she continued to take it daily until she was done with pain meds.

Now she's on pain meds for her arthritis and we've learned that if Miralax doesn't work, to use Milk of Magnesia.

Your poor girl - sounds like her teeth were pretty badly impacted! M had local anesthetic but no sedation at all - not even laughing gas! That wasn't the smartest decision because she was so shaken by the whole ordeal that she nearly fainted right after the surgery.
 
Yeah, I had laughing gas with mine. My hubby just had local. He literally remembers the dentist putting his knee in his chest for leverage. Ummm no, I would've freaked!

C has a xrays and cleaning in January and the dentist has already said he'd be referring C to the oral surgeon for extraction because his are coming in sideways. We've been waiting to see if what the thing is the bud of the fourth one is ready or something.
 
I would recommend prune juice. I used to do pain management in a former life... it seemed to do well for opioid induced constipation.

My oldest nonIBDer will get hers out next week.
 
Automated results came through. The Rheumatologist had already put an order in for these labs and gave me an order. Both GI and Rheumatologist are part of the same system so I assume GI will look at them tomorrow (he was out of office today). The results don't look good to me but I have no idea what they mean.

This is most of CBC, didn't post the rest as they fell in the Normal range or didn't have standard range. Next post will be the iron studies.

Component Standard Range Your Value
WBC LABCORP 3.4 - 10.8 x10E3/uL 10.8
RBC LABCORP 4.14 - 5.80 x10E6/uL 5.14
HGB Labcorp 12.6 - 17.7 g/dL 11.7
HEMATOCRIT 37.5 - 51.0 % 37.3
MCV 79 - 97 fL 73
MCH. 26.6 - 33.0 pg 22.8
MCHC. 31.5 - 35.7 g/dL 31.4
RDW. 12.3 - 15.4 % 17.5
PLATELETS 150 - 379 x10E3/uL. 302
 
Seems like he's a little bit anemic. Is he still on Entocort? Wondering if that can raise WBC like Prednisone does...

How is your older daughter? Feeling any better with the Miralax?
 
CMP results
Component Standard Range Your Value
GLUCOSE, SERUM 65 - 99 mg/dL. 71
BUN LABCORP 6 - 20 mg/dL 12
CREATININE, SERUM 0.76 - 1.27 mg/dL 0.87
BUN/CREATININE RATIO 8 - 19 14
Sodium, Serum. 134 - 144 mmol/L 140
POTASSIUM 3.5 - 5.2 mmol/L 4.3
CHLORIDE, SERUM. 97 - 108 mmol/L 103
CARBON DIOXIDE, TOTAL 18 - 29 mmol/L. 20
CALCIUM, SERUM. 8.7 - 10.2 mg/dL 8.6
PROTEIN, TOTAL SERUM 6.0 - 8.5 g/dL 6.7
ALBUMIN, SERUM. 3.5 - 5.5 g/dL 4.0
GLOBULIN, TOTAL. 1.5 - 4.5 g/dL 2.7
A/G Ratio Labcorp 1.1 - 2.5 1.5
Bilirubin Total LabCorp 0.0 - 1.2 mg/dL 0.4
ALKALINE PHOSPHATASE, SERUM 39 - 117 IU/L 78
AST (SGOT) LABCORP 0 - 40 IU/L 16
ALT (SGPT) LABCORP. 0 - 44 IU/L 6
 
Oh since it was Rheumatologist that had the order for these the ESR was done and it was 19 range 0-15.

What hasn't shown up is the iron studies which should've been ordered by GI.
 
On this pain scale

rmt264q.gif



she says she is a 6.
 
:lol: M loves that pain scale. No real advice except that constipation has caused some pretty bad belly pain here.

Do C's joints feel ok? I'm guessing the elevated ESR is the IBD?
 
I'm not sure Maya142, his wrist has been bothering him for several days (started 2 days after rheumatologist appt) and has only calmed a bit today. But that wouldn't raise ESR would it?
 
She hasn't taken any pain meds now for 7 hours. I really don't know what point she needs to go to urgent care or ER.

It's very tender to the touch, hurts more if jostled and such. She hasn't eaten anything but a container of jello today.
 
Clash said:
Automated results came through. The Rheumatologist had already put an order in for these labs and gave me an order. Both GI and Rheumatologist are part of the same system so I assume GI will look at them tomorrow (he was out of office today). The results don't look good to me but I have no idea what they mean.

This is most of CBC, didn't post the rest as they fell in the Normal range or didn't have standard range. Next post will be the iron studies.

Component Standard Range Your Value
WBC LABCORP 3.4 - 10.8 x10E3/uL 10.8
RBC LABCORP 4.14 - 5.80 x10E6/uL 5.14
HGB Labcorp 12.6 - 17.7 g/dL 11.7
HEMATOCRIT 37.5 - 51.0 % 37.3
MCV 79 - 97 fL 73
MCH. 26.6 - 33.0 pg 22.8
MCHC. 31.5 - 35.7 g/dL 31.4
RDW. 12.3 - 15.4 % 17.5
PLATELETS 150 - 379 x10E3/uL. 302
Click to expand...

Low MCV means the red blood cells are small. This can be iron deficiency or anemia of chronic disease. Elevated RDW means more than usual new red blood cells being made.
 
Why would there be more than normal red cells being made?

I don't know if any of these are at a point where C would need further investigation. He's had wonky results before and of course I get panicky but the GI seldom says more than there's definitely CD activity going on...which we already know at this point.
 
More cells being made because the body recognizes that it is anemic and needs more to carry that oxygen around.
 
Okay talked to the GI nurse. Iron doesn't automatically post but she did say that his iron numbers have come up a little bit like ferritin went from 2 to 7.

She wanted to schedule a follow up appt for this upcoming Monday but C wants to schedule for 1st week in January or later so it won't interfere with work schedule.

Nurse said GI definitely wants to give humira weekly a shot but doesn't know how long we can give it due to his latest results of progression.

Daughter still feels bad with some abdominal pain, still doing miralax has had 1 small bm.
 
You did explain unwanted hospital admit
Tends to mess with work schedule more
AND
Big and
If a doctor asks for a sooner appt it's for a reason
Not because they like to see a smiling face
They are very busy

So glad my kid is only 12
 
I told C we needed to jump on the first appt available and the reasons and he was fine with that as long as it gave the work scheduler enough time. So I'm thinking it will be the first week of January.

The GI was going to wait out the weeks of weekly humira with local blood tests and to call if things worsened but I wanted C to talk to him so he could understand the importance of weekly humira, compliancy and what not.

GI nurse thought the sooner we get C in the better for "the talk" about weekly humira, compliancy and even though you feel good outwardly your results show you need to be careful taking care of yourself during this flare.

Stubborn teen.
 
Really sorry Clash - it's so hard when they grow up. They're still scared and kids inside but of course, they think they know everything.

I hope hearing it from his GI helps. Sending hugs :ghug:.
 
Sorry Clash. It is very hard to co-drive with a teen and in your case adult...but co-driving is only way to do it. Ugh.
 
We will be going to urgent care today, C has run fever with his cough since yesterday. Last check 100.9. His GP is out of town this week so I figured we'd go ahead and wade through urgent care. Am I right they they should be able to do a quick strep (as well as the couple day culture)? And for the flu is that a quick test as well? And urgent care clinic would have that right?

I can't remember from the last time but do they allow our kiddos tamiflu if it is the flu? I remember everywhere being out one year and us calling multiple locations but I can't remember if that was for C or my non IBD daughter.

J will be calling the oral surgeon Monday as she still doesn't seem to be recouping quickly and hasn't moved past soft foods.

To top off this fabulous 12 days of Christmas adventure that included colonoscopy and wisdom teeth extractions same day different towns, bad scope results, weird reaction to meds, and now fever bound IBD kid the Hubby had to work Christmas day and a deer (fortunately not one of Santa's apparently since it was earth bound and not soaring the skies) totaled our car. Come on 2016 hurry up and get here!
 
Oh no! So sorry to hear of all this clash! Hugs!

One year my niece was at our house and had flu. She was sleeping with o in her room. Our ped said no tamiflu unless she definitely had flu as it causes gi distress and she didn't want to aggravate her crohns. So yes they can take it but it could be rough on gut.

I think in order to test or was it treat the flu you have to catch it in first couple of days. I would think urgent care can test for it. Ours definitely could with niece and they definitely have tested for strep. Poor C!
 
Oh geez Clash! Those were an eventful 12 days!

I'm guessing urgent care would test for the flu. Ours definitely does the Strep test because we've taken M there for it.

I'm glad J will be calling her doctor. Poor kiddo, she shouldn't still be so miserable.

Thinking of you guys :ghug:.
 
Tamiflu needs to be taken within 48 hours of first symptoms of the flu otherwise it doesn't work
Only shortens the course by a day or two
That said Ds has had it before due to asthma and the flu a few years ago

I thought only ER could do flu test since it was nasogastric swab
Maybe since he is 18 it's different

Strep swab can be done for sure

Flu should have a much higher fever in general though so hopefully just a virus
Adenovirus can also cause issues
 
So C had 100.9 last night before bed. He took tylenol, so that was about 11:30. He woke up about 10:30 took his temp, no fever. He has plenty of energy and a strong but productive cough. He wants to wait and see other GP in the practice instead of urgent care due to wait times.

The deal we've made is if fever comes back its urgent care today if not he can make appt. He doesn't feel achey, miserable yucky and says other than the cough no real complaints.

He says he knew his fever had broke over night because he woke up at one point covered in sweat. Since it has so far only been in the evening and doesn't seem associated with a achy, yucky sick feeling I wonder if is his CD and the cough he's had is sinus/allergy? I mean he is getting up flegm, there's no sore throat. Ughh I just don't know.
 
Strep typically doesn't have a cough
Just severe sore throat. High temp and belly ache
Glad the fever broke

If he has allergies could be post nasal drip irritating his throat causing cough

Nightly fevers would seem more ibd or SpA
If they disappear during the day

Good luck
Hope he feels better
 

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