Moving on to Humira

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Clash, that is absolutely classic JSpA/AS -- stiffness in the morning and stiffness with inactivity.

In my older daughter's case, the stiffness has persisted even though her AS is under control - last MRI showed damage but very little active inflammation. I don't know if the stiffness persisted because of the damage or if there is always some inflammation, but in both girls' cases, it has never gone away. Both do have damage to their SI joints and hips, especially M, so that might be why.

My husband has also been in remission for years and years and does still have stiffness in the mornings.

So I guess all I'm trying to say is that a certain amount of stiffness is normal for JSpa/AS kids, though of course, every kiddo is different. It certainly gets MUCH worse when my girls are flaring.

Clear as mud, right?!
 
Same here on hands knees and ankle/heels
Stiff every morning worse without activity
Jumps to a whole other level when flaring
Ds gets to where even his teeth hurt
Everything hurts during a flare and moving looks like he is 80 including his back /hips .
 
Yeah C:s normal level of back stiffness has him hobbled over in the mornings. We've made sure at each appt we tell the rheumatologist so I assumed it was just something that occurs with JSpA since she didn't make a fuss over it.

C says that his wrists don't get stiff so much as aches but still it improves with activity so part of the same thing. He does say after a busy day on his job his wrists will be sore.

Now that he is at college he has free access to their wellness centers which has gym, indoor pool, and even physical therapists if he so chooses to utilize them again. It's a different group but his px is general. He's hoping to get involved there when he gets settled in to his new schedule.
 
As I see it fc can give a false low but not a false high. If as the stool moves down the bowel it misses the spot where the inflammation is the fx will not be raised.

My believe is Gi using entocort to treat the anaemia.

When we had our surgeon opinion with no symptoms other than anemia. It was mentioned if the anemia wasn't able to be corrected with medication it would worth considering removing a 10 cm section of bowel.
 
Hi there,

I started taking Humira 2 years a go and it did change my life, what a med that is! I am grateful..

Just one thing to point out, lately my skin starts inching me! and it turns that i have now what doctors call "LICHEN PLANUS"..

I'm not so sure if this has to do with Humira of Crohn's it self.

any Idea?? don't underestimate any info. pls
 
Okay gurus I've got some questions for you guys and you always give the best experience!

1. So C had been asymptomatic for so long that a couple symptoms have us wondering. C had been going to the bathroom as soon as he wakes up, a bit mushy and a little mucus. He's increased to maybe 4xs a day and some of them are urgent. The only thing that has changed is he had been on a chicken noodle soup/grill cheese run. He eats it all the time so could soup cause this?

2. He had that iron infusion 2 weeks ago and the nurse said we'd run iron panelson 6 weeks from that infusion. In the mean time he takes his px iron. If he is low again do you think I could request a couple of iron infusion for a couple months? C really does think it helped with energy but he things his iron must be dropping again due to fatigue.

I've asked him if the bms feel crohnsy and he says not really that he wonders if he just isn't dedicating enough time in the morning. Ha!
 
2. He had that iron infusion 2 weeks ago and the nurse said we'd run iron panelson 6 weeks from that infusion. In the mean time he takes his px iron. If he is low again do you think I could request a couple of iron infusion for a couple months? C really does think it helped with energy but he things his iron must be dropping again due to fatigue.
Click to expand...

Did he only have one infusion? M had five I think, over five weeks. Do you remember how low his ferritin was? In her case, she didn't tolerate iron supplements well and her iron levels did not increase with them, so we really had to go to infusions.
 
Also, would he be willing to stop the chicken noodle soup to see if his BMs go back to normal? It would probably be the easiest way to tell :lol:
 
Yep he only had one infusion. His hemoglobin was only slightly low but ferritin was really low. He had been on px iron pills but apparently they weren't working. The GI nurse said he would get the first then they would test in 6 weeks. So if that's low I want infusions regularly for awhile.

Yeah I think I can talk him into a new obsession just to see if it's related to the soup. I hope it is.
 
M's ferritin was also very low and her hemoglobin a bit low -- it was 9. something I think. I wonder why they automatically scheduled multiple infusions for her. We did do it through a hematologist and not her GI - maybe that's why?

Anyway, good luck!! I think several infusions make a lot of sense and I know they helped M a lot.
 
I second the giving up the soup for a while, and/or the grilled cheese, and go back to his previous eating pattern for a few days. If all is well, then he can add one in at a time and see if he can find the culprit!

I don't know much about iron infusions, although looking back, N could have benefited from some. They just gave him iron supplements even though his ferritin was extremely low. The supplements did nothing for him so we stopped them. His levels just came back up VERY slowly as he healed. I'm glad they are monitoring closely and it seems they are willing to do more infusions as needed. Hope he gets to feeling peppy soon!
 
They need to see how he response to the iron infusion. His last iron studies looked like to me iron deficiency anemia with concurrent anemia of chronic disease.

If ferritin level increases and hemoglobin level decreases further iron infusions are unlikely to help. It sounds like a good plan to wait.
 
Well the bms issue went to normal before I could suggest the no more soup. He mentioned that on Saturday he had no appetite at all. He had one grilled chicken strip (homemade) and a couple of sips of a smoothie he made (a true waste of most of the fresh fruit I bought ha!) The next day he said he ate a bit more. I asked did he feels any CD issues but he said no he just didn't feel hungry. Today, he ate a decent lunch then headed off to work so not sure what he's eaten since. Also, on our scale he was 111 this morning, so down a bit from a few weeks ago but since he's had no appetite for a couple days that correlates I suppose.
 
The constant doubt, questioning, second guessing, waiting and seeing, and on and on weighs you down, eh? Hoping his appetite is really on the rise and just sending hugs... :hug:
 
I know it's so frustrating. Im hoping this is not related to CD. C absolutely feels it isn't because he says he doesn't feel crohnsy. So I'm just watching for now. He said he'd weigh every couple of mornings starting again so we can see if a trend is forming.
 
Hasn't happened with S in quite a while but, earlier on, he would tell me that he could feel when it was 'crohns' related??? Hoping they're both right and all will be well soon! :ghug:
 
Sending hugs and thinking of you! It's awful wondering if every little thing is Crohn's. I'd just quietly track everything (if C doesn't want to do it himself) - the complaints about weird BMs, the weight loss if it continues etc. Might be useful for when you next see the GI.

:ghug:
 
Gosh, it's always so worrisome......hopefully it was just a bug and his intuition is correct. Its great that he is taking on monitoring his weight. I have to almost physically drag N to the scale when he comes for a visit! Hoping his appetite is improving as we speak and he feels better.
 
I think I would be a little concerned about the increased BMs decreased appetite and weight. Maybe you can call the doctor and have a fecal calp done ?
 
kimmidwife, C just had an fc done 2 weeks ago, the result was 54.

I guess his appetite is a bit better and his bms seem to be back to normal schedule. So, you know, just your average sit around, wonder, twitch, research and try to out guess the evil CD! LOL
 
Clash,
I remember you mentioning it now. Sorry fibro fog makes me forget everything!
Hope you get it figured out!
 
Girl I know what you're talking about. I started an new beta blocker for my IST and my brain fog is now thicker than pea soup!! Ughhh! And the fatigue...I. Can't. Even.
 
Thought u and our resident anemia expert Catherine might be interested in following the live tweets.


Gi Health Foundation @GiHFoundation Register now for #GI News Today: Managing Iron Deficiency Anemia in #IBD at #ACG2015! Live tweet with us #IBDNEWSACG
 
Okay committee here's a question for you guys.

So C has his humira dose today. He'll do it later tonight so hasn't had it yet. He just came in and showed me a raised welt like spot on his belly.

1. Even though I'm constantly telling him to move around his belly with shots he generally moves around in one area on one side. The spot is in this area.

2. It looks very similar to the welt that comes up at injection site with injection.

3. He says this isn't the first time. He can feel it when it's coming up and it sometimes itches sometimes not.

4. It usually goes down after a day sometimes within the day.

I'm going to mention it to the GI and honestly he may have told me this before but I chalked it up to it being the injection site since it was only a day after the shot that time.

But now I'm second guessing it since it showed up the day of the next injection before the injection.
 
So to be clear, he has a welt before doing the injection? And that's usually the spot he does the injection?

My daughter has had similar welts from Humira before but only after the injection. She does switch thighs, so she'd had them on both thighs. We were told to give her Benadryl before the shot and we did. No welts. She eventually stopped taking the Benadryl but still no welts.

I'd ask his GI.
 
It may not even be the Humira since it came up 2 weeks later. Isn't your son the one who gets a lot of allergic reactions? Definitely I'd premedicate with benadryl, but perhaps you should give the dose in the ER just in case?
 
Yep. He takes his injection today but hasn't had it yet. He injects generally on the right side of belly button (in some kind of weird clockwise pattern he came up with to ensure not exact spot). I try to encourage both side of stomach and he will relent sometimes but he will not do thighs.

The welt has appeared in the general area of injections on the right side of his belly button before today's injection.

He just came in to make sure I knew that this has happened several times out of nowhere and he can feel it when it starts. He also does get the welt at injection site when he does the injects.

The injection welts from injection and this spot look exactly alike to me. Raised and welt like. I've wondered if the ones with the injection arent just the med up under the skin?
 
I mean he had a reaction to remicade but only because he came off for surgery then when started back developed antibodies.

He does have allergies but it has never shown up as welt like reaction. He has the bloodshot eyes, runny nose with allergies.
 
Welts are hives
Injection site reactions only after right after an injection
Not one to two weeks later from the drug

Allergies can change at any time and how you reacted in the past is not predictive of how you will react in the future .
Ragweed season is very high in general right

And he could develop allergies to almost anything else environmental or food wise
Try to talk to his allergist
And keep track of his food and other environmental exposures

Does he take a daily antihistamine ?
Get allergy shots?
 
No with the remicade his antibodies were extremely high (highest GI had seen). His reactions that led to testing was tightness in his chest, flushed face. He called the nurse over and she started solute droll both times. One time he finished infusion next time he reacted again after solute droll and they stopped infusion.
 
Clash
The reactions with remicade are considered anaphylactic since they included more than one system
That was why they used steroids to try and calm down things
The second time they stopped since the pre treat of steroids didn't stop him from reacted and the next time it could have progressed to anaphylactic shock which typically leads to death .
We have auvi q at home but still don't mess with anything that could lead to anaphylactic reactions

That said most reactions occur with two hours of the allergen and typically occur with the first 30 minutes of exposure

Make sure you talk to his docs
 
Symptoms
Anaphylaxis symptoms occur suddenly and can progress quickly. The early symptoms may be mild, such as a runny nose, a skin rash or a "strange feeling." These symptoms can quickly lead to more serious problems, including:

Trouble breathing
Hives or swelling
Tightness of the throat
Hoarse voice
Nausea
Vomiting
Abdominal pain
Diarrhea
Dizziness
Fainting
Low blood pressure
Rapid heart beat
Feeling of doom
Cardiac arrest
People who have had a severe allergic reaction are at risk for future reactions. Even if your first reaction is mild, future reactions might be more severe. That's why it's important to carry self-injectable epinephrine if you are at risk, and 911 should be dialed in the event of a very serious reaction.

Understanding anaphylaxis and the things that can trigger this severe allergic reaction will help you manage your condition.
Click to expand...

From
http://acaai.org/allergies/anaphylaxis
 
Okay, he does typically take xyzal for allergies but only during the season.

I guess just the location of the welt freaked me out a bit.

So MLP are you saying I shouldn't let him do humira tonight or since it's a reaction 14 days out its probably not humira and he needs to see his allergist for a new environmental allergy? He's not concerned at all since he says it's happened a few times before so I guess I shouldn't be. I thought about calling on call GI but they're gonna say hold off and talk to his GI and honestly I'm worried about holding off since we're still uncertain if he's flaring or what.

I'm just putting it out there that these people should not leave a gun-shy, already shell-shocked Mom in charge of these types of things....God I miss remicade.:(
 
I don't know his history clash so it could be from humira or it could be from something else
Can you call the on call allergist ?
Since your worried about a allergic reaction.
Holding off from night to morning really isn't a game changer but anaphylactic reactions can be .
I lived through those three times at home so not something to be taken lightly .

The doctors going to have to advise you

DS had viral hives last week
Lasted the whole week with one hive on his stomach .
But with hives it could be a host of things only a doctor who knows your kids history can help you figure it though
 
Unfortunately, no on-call allergist. I think I may just call GI in the morning as well as allergist. Just to be safe.

Thanks everyone for your input. I really appreciate it.
 
It's always tough to make these decisions :ghug:, but really, I think you made the right one - better safe than sorry and, just moving to tomorrow shouldn't have an impact on C's crohn's. :ghug:

But, it really does suck having to make these decisions.

I needed to make a similar decision on Friday - S forgot to ask his GP about his remi infusion and antibiotics. Then, he tells me Friday evening he still have quite a cough and wheezing (reason for abx) and asks if I think there's a problem with going ahead with remi on Saturday. :ywow: I hate being in that position - it's so hard to have any confidence in your decision!! But, definitely, a bit easier with remi because we were able to confirm with dr and nurse at infusion.

I hope you can reach GI quickly tomorrow morning! :hug:
 
Sounds like it's an allergy to something else, but it's probably a good idea to be safe. Fwiw, I hate delaying Humira too, but we've done it several times without an issue. A day really won't make a huge difference.

Sending HUGS :ghug:
 
Thanks guys now if I can just convince C because he is seriously balking at waiting.

The welt lasted maybe an hour and a half then disappeared with no med. So weird.
 
That is pretty normal for an allergic hive most self resolve quickly within an hour or two but can reappear later for up to twenty four hours.
Viral hives tend to last more than twenty four hours
 
Oh and DS tends to get hives more often than not on his arms where he gets his allergy shots but much later in the week if he is reacting to something else environmental.
He does gets actual wheels/hives from his allergy shots but those disappear quickly after the shot.(4-7 hours but it is a allergy shot kwim )
 
I asked C how long the last one lasted and he said he wasn't sure but not long because he was waiting for me to come home to show me and he did show hubby but by the time I got home it was gone. So maybe an hour because I had only gone to the grocery and back.
 
The thing with hives is sometimes you never know why.
I asked for color coded ones ( red for food , blue for environment, yellow for drugs etc...)
The allergist just laughed at me and said DS would just have purple hives with pink polka dots if that was the case since he likes to be a mystery .

:hug:
Hope you get to the bottom of it soon
 
Sending hugs Clash - I hope you get some answers soon. Has he taken a picture of the welt to show the allergist/GI?
 
No pics but I've told him to get a pic next time. He really thanks I'm blowing it out of proportion by not doing humira and doesn't want to wait. He said it's like putting off the inevitable. This age tho!
 
My older daughter has given herself Humira twice when I've wanted her to hold it and consult a doctor (she prefers to give herself the shot and then consult a doctor :ybatty:). Once for a UTI and once for a sinus infection.

So far, there have been no major issues but I'm dreading the day she gives it to herself and then has to deal with an infection that is difficult to get rid of.

This age is SO hard!!
 
I know it's crazy because this IS the age where they think they're invincible BUT you'd think 1 or 2 dxes would make them realize their not!

C's thing is that though...like I've already hit the chronic illness lottery twice no way lightening strikes twice. Sometimes I just walk around the house singing...let it go...let it go...because I'll drive myself insane trying to keep him in line!
 
:lol: I totally know what you mean!! There have definitely been times I've gritted my teeth and just 'gone along with it', all the while worrying and beating myself up over 'why did I let myself be convinced?!?' (Knock on wood, throwing salt over my shoulder, etc., etc.,) so far, so good! ;)

All went okay?
 
C's lab work came back. There was this mess since the GI just emailed the order so we could have it done locally then the lab at the local hospital couldn't do it because of the different ICD codes. Anyway, short story had it done at local GP.

I still have to swing by and it up from GP but GI nurse called and levels are still low. I asked about ferritin and she said it was 2. So she is scheduling another iron infusion.

Also the schedulers should be calling to schedule the scope for December. She's putting the order in today. We're trying to hold off until C is on Christmas break but she said to call before then if anything comes up.

C is doing good. It's hard to believe he is able to handle 30+ hours of work, college classes, homework and his never ending on the go social life with his low iron.

Still confused, fc was 54 yet his ferritin is dropping (I'll know the other numbers this evening). He seems to be having more frequent bms in the morning but all are normal so far and he swears it's more because he doesn't take the time the first time...who knows.
 
Wow way to go C! I can't believe he's doing all that with such low ferritin.

For M, they scheduled four or five infusions for five consecutive weeks and that really fixed her iron levels. I wonder why they wouldn't do that for C, given how low his ferritin is.

I hope the scopes provide some answers.
 
DS has dropping ferritin as well
As soon as we stopped supplemental iron pills
Crohns is good arthritis is ok
But ...
No one knows why
Just is
And since it's the only thing that is flagging
Just treatment as usual
 
my little penguin said:
DS has dropping ferritin as well
As soon as we stopped supplemental iron pills
Crohns is good arthritis is ok
But ...
No one knows why
Just is
And since it's the only thing that is flagging
Just treatment as usual
Click to expand...

Here too with little H. No bowel symptoms. Joints ok. Also low ferritin. Aren't all these kids on Humira? I've never read any connection like that though. ..
 
Maya142, I am not sure why we are doing the one off instead of several. She said this order would have the iron infusion plus an order for iron labs six weeks later.

C is supposed to pick up the lab work between classes so I'll have all the numbers later to compare to last draw before last iron infusion.
 
We also had a mysteriously dropping Ferritin - once she needed iron infusions and was on Humira, and all the other times, it has just fallen and then started to go up very slowly. No idea what it's from but I'm assuming she has a little inflammation in her joints or gut.
 
I want clear indicators back! I also want fair warning! Would it be too much to ask if CD and JSpA could get on the same page and work together when they flare so it isn't the constant "if it isn't one it's the other" guessing game! While I'm at it some serious lecture video that clearly states just because it isn't a straight up CD med doesn't mean you can forget to take it ie allergy meds, vitamin d, iron, folic acid. I swear he thinks those are optional at times!

I would also like some scheduling, it's coming up on Christmas so couldn't CD just freakin cooperate through the holiday season and if you can give me that how about through the rest of college.

This disease tho! It's like that old game show Press Your Luck...the damn Wammy is always lurking...waiting to pop up. Over it.
 
Not much of an expert on ferritin levels BUT is C on Mtx? If so and IF he is forgetting his folic acid I wonder if that could be the problem.

I bring it up because a few times O has been anemic and everyone started freaking out but t hen we realized she wasn't religiously taking her Folic acid and if you are low on folic acid it causes anemia...don't ask me to explain why or how...I understood it at the time but it had to get deleted to let new info in!

Anyway, we got on top of the folic acid and anemia resolved...funny how when you take your meds you feel better.
 
Yeah the folic acid is pretty consistent or at least the refills are falling when they should. The same for the iron for the last few months but vitamin d and allergy meds forget about it. Even though his allergy med is seasonal it still takes way linger than it should for the refill! Vitamin d isn't a refill of course but his bottles last entirely too long!
 
Oh yeah...d slips my girls mind all the time...and it is such a small easy pill.

The other day T forgot her steroid, folic and D...I went to her school and waited by the bus drop off door to the school to hand them to her. She was mortified...she hasn't forgotten since.

At least I changed out of my PJ's before I left:rof:
 
:lol: that's genius CIC! Imagine C's face if you showed up at his college Clash :rof:!
 
Pill box
Pill box
Pill box

Gets filled with the weeks pills
Allergy meds
Crohns meds
Vitamins etc....

I still supervise but pill box makes it easier for every one to remember
Since it's all there in front of you

DS was taking 15-20 pills a day at one point
No way I could remember what he already took
 
^Yep we use a pillbox too (well, actually 3 pillboxes). M takes 20+ pills a day and there is absolutely no way we'd remember what she'd taken and hadn't taken. ALL pills including supplements go in the pillboxes. I used to fill them once every week but now M is doing it by herself!
 
We have a month pill box. He's now in charge of filling it. It only contains d and folic acid since iron comes in burst packs and CD meds are injection. He fills it but just scrapes the folic acid out of each day. I know this because there are always D in there but the folic stays up to date. I'd say in a month he may miss 3 days of folic.

So here's the results. I thought the order would include CBC since that would have HGB and HCT but oddly enough it was just iron. Which would that show the whole picture then? Honestly this iron thing confuses me greatly.

IRON 21 L 35-150

TIBC 396 260-400

% IRON SATURATION 5 L 20-50%

FERRITIN 2 L 26-388

Vitamin B12 340 193-986

Folate 18.8 H 3.1-17.5
 
CIC what D pill is O taking? C's is a horse pill! It's a capsule though not a pill. It has the cofactors in it. It's the one that has been recommended on here.
 
Well his Ferritin is low, his iron is low and his TIBC is (almost) high - seems like pretty classic iron deficiency anemia to me. M's results were all very similar.

I'd ask why they aren't setting up several iron infusions since just one clearly didn't work for him :ghug:.


I bet it's hard to remember to go to his pillbox when he only has one pill and it's a vitamin. I know my girls would skip it all the time too in that situation. They're only very good with the pillboxes that have NSAIDs in them because they can feel it if they miss them!!
 
I don't understand why it's only one either. I mean even if it is an IDA and ACD combo then iron infusions would help the IDA and ferritin stay up if he had several, right?

Yeah, also it has entocort but he scrapes them out as well. Seriously your taking 4 pills what the other two gonna cost you!:voodoo:
 
Sounds like Lp pre iron pills
As of right now he is still normal but dropping ferritin and rising TIBC

DS takes a gummy vitamin D which has raised his levels to 48 from 20 so all good
Plus they are the closest thing to candy form for DS
;)
 
Clash,
Hoping you get it figured out. I wonder if he is not absorbing it for some reason. Maybe he should see a hematologist?
Also for the infusions maybe they want to see how he does after the one before they order more?
 
Pill box here also but she walks by it just as easily as walking by the containers. I think it is like someone said above...the D and folic aren't the big gun controlling the disease so easy to forget. She has even forgotten mtx on occasion. I am no better though...I forget to check.

Clash: I will get you the name in the a.m.. But they are little gel capsules,
 
Clash

can you post the way each of the numbers are moving.

The numbers don't quite clear cut to me.

I am out but will look further when I home
 
Clash said:
Results
Iron, Serum Labcorp 40 - 155 ug/dL 14
IRON SATURATION LABCORP 15 - 55 % 4
FERRITIN, SERUM LABCORP 16 - 124 ng/mL 3

He's been on niferex for awhile now so I guess inflammation kept it from absorbing?
Click to expand...

I think I have found previous results. All result seem to have increase but ferritin.
 
Yes that's the previous numbers, Catherine.

So his next iron infusion is set up for next Tuesday. Hopefully, six weeks out from this one we are back on track.
 
What have notice is some results mirror that my youngest daughter

- inadequate response to iron therapy
- high folate
- low/normal b12

I am starting to wonder whether part of the answer is supplement b12.

Paging David for advice on B12.
 
M saw a hematologist (because we didn't know she had Crohn's when she was anemic and needed iron infusions) and it was actually quite helpful. It might be worth a try.

Good luck!!
 
Well you all know the old saying...careful what you wish for.

C has been having more bms. Today he said he had night bms last night although not D and then this morning had to turn around headed to college because had to go. He also said one side of his stomach was more bloated that the other last night before bed.

When I said I wanted indicators I didn't mean this. I light that comes on when things are amiss would've been fine


I'm just ready for the scope.I'm most concerned about inflammation at the anatomosis and it causing narrowing and that the GI is on target that anti tnf aren't fully efficacious for C.
 
So if there were inflammation then I'm assuming they'd bring the humira schedule closer together?

I've never thought about this in relation to entocort but how do you know if it is effective? C will have been on it for 3 months at the time of scope. Weaning from 9mg down to 3mg. If there is active disease then does that mean entocort didn't work for him? I mean when he was on pred there was no time that he wasn't having symptoms of CD. It was all the hate but none of the love. The GI stated by symptoms labs etc C got all the side effects but none of the efficacy. But is that the way with entocort as well? That if you don't respond (of course now it would rely on last scope and this scope since C up until now didn't have symptoms with his active disease) in a 3 month slot it doesn't work or would it just keep going?

Also, if mtx helps JSpA then the relevancy of its effectiveness with CD is not important, right?
 
They may or may not move it up since he has no symptoms it's harder to determine if he had any response to humira .
DS had response but it didn't last the whole 14 days.
Then had joint swelling so it was moved back to 10 days
More symptoms after day 7 so moved back to every 7 days.

Since his markers kept climbing and he needed steroids
Hard to say


Entocort no exp go said it would work for DS too many areas that wouldn't be hit

I think you have to wait for scopes
Or symptoms to get worse and move up scopes

Does the Gi know about latest symptoms ??
 
No I spoke with GI nurse today but it was about the next labs just being done at scope since that will be about 6 weeks. C hadn't told me anything about the bloating and such then.

He wants me to call and ask about Boost tomorrow as he thinks he wants to try to drink it for weight gain. I'm going to call be he has never done well with any of the Boost like products. They come back up fairly quickly and he says they make him nauseated and feel heavy on his stomach. He thinks maybe I just haven't found the right one but I've bought boost ensure carnation breakfast in all yltypes and same reaction. He says some of it comes back up because of the texture and what makes it to his stomach just makes him sick feeling and crampy.

I'm going to call and I'll buy a few more kinds to try but I don't see it going any differently.
 
Only with ng tube, I mean it stuck some to his tongue once while hooking up but never drank one.

We did talk about EEN if scopes were bad and it was evident entocort wasn't working. He said that he would try his best to be compliant but he just didn't know if he could stick to it. I told him that was a conversation for later if it came to. I figure no reason to stress over something at this point.
 
Also
There is the partial en with crohns exclusive diet
That allows some food
DS has been on it with humira and mtx since April
It held him while off humira due to infections
But didn't keep his joints in check
 
I think he might need semi-elemental shakes if he has those symptoms with Boost/Ensure (even just for weight gain, not EEN). M had the same symptoms (plus diarrhea) and couldn't tolerate them. And then started having the same symptoms with Peptamen so we had to go to elemental (Neocate).

If Boost doesn't work out, would he try Peptamen? Or Pediasure Peptide? Personally, I think the NG tube would be easier since he knows how to insert it but of course teenagers know best ;).

If he doesn't respond to TNF inhibitors, you might want to look into Stelara. MTX definitely helps with JSpA but typically doesn't help for the SI joints/spine ("axial JSpA"). So if they're involved, kids are put on TNF inhibitors.

Since (if I remember correctly) C's SI joints are involved, I'd guess they want him on biologic. S's rheumatologist has one patient on Simponi AND Entyvio (but an adult, in his 20s) which I thought was kind of interesting. His CD was worse than his AS, and he had been on Simponi. When Entyvio came out they put him on it but his AS flared so they added back Simponi at a lower dose.

Typically if you fail the anti-TNFs and have both JSpA and Crohn's, your options are pretty limited (M is going to be in the same boat eventually I think). Stelara is really currently the only option.

Hope you can have the scopes done SOON!
 
Wanted to add - if they think Humira is working (somewhat) but doesn't last the whole time, they may increase the dose instead of putting him on an entirely new medication.

Both M and S went from 14 days to 10 days and then to 7 days. I kind of wish we hadn't tried every 10 days for both of them because it was a waste. It worked great weekly with MTX for both of them (S is still on it but of course, she doesn't have IBD).
 
I really don't want to rock the boat until after the scope. We already have humira, mtx and entocort (which I'm not sure about since if it does help it will already skew the scope results for if Humira is working) so to me adding EN with the IBDAID diet is just one more thing to muddy the waters.

I did tell him about the partial EN with ibd-aid diet but he is supposed to be moving in with a roommate in January and I don't think the diet would be feasible for him to cook and carry out on his own. I wish he could take it upon himself to carry it out but I think it would be unrealistic.

If the scopes were fine and he wanted to do EN for weight gain and would be compliant then I would be for that.

All of this a just my stream of consciousness btw. My brain just does this when thinks seem to be going askew.
 
The problem is if and that's a big if
He is starting to flare more then waiting for a scope in 6 weeks may not be an option
Regardless
I think that has to be up to the Gi
As well as whether more therapy including een is needed but I assume he wouldn't wait on scopes

Fwiw even when DS was doing really well
If we dropped supplemental nutrition he started to lose weight
 
Anemia is symptom of something.

What is the cause of the anemia?

My Sarah never had classic signs of flares. When she flares her blood count starts drops. Begins to have problems with diary products. Faecal calprotectin starts to climb about 3 months later not high (200s). Period of pain. No bowel symptoms.
 
Yeah, C doesn't lose weight bit he is thin. That has not changed since surgery. He may gain 3 or 4 lbs but it doesn't stick around.

The only time he gained weight was in EN but when you remove it the weight goes too. Which is one of the reasons in the past he's said he wouldn't do it again. But if he's considering it then a step in the right direction, maybe.
 
Yeah he had active disease at the cellular level on the last scope. So we think the anemia is maybe CD since JSPA is quiescent. We added entocort when discovered anemia hoping it would bring things around but then questioned when fc came back normal. But stayed on it.
 
Clash said:
No I spoke with GI nurse today but it was about the next labs just being done at scope since that will be about 6 weeks. C hadn't told me anything about the bloating and such then.

He wants me to call and ask about Boost tomorrow as he thinks he wants to try to drink it for weight gain. I'm going to call be he has never done well with any of the Boost like products. They come back up fairly quickly and he says they make him nauseated and feel heavy on his stomach. He thinks maybe I just haven't found the right one but I've bought boost ensure carnation breakfast in all yltypes and same reaction. He says some of it comes back up because of the texture and what makes it to his stomach just makes him sick feeling and crampy.

I'm going to call and I'll buy a few more kinds to try but I don't see it going any differently.
Click to expand...

Hi I'm just responding to the boost drinks you are talking about. I too have corhns disease and I'm battling a fistula and abscess these days. What I have found really good are the ensure plus chocolate drinks. I use to have these thinks but they are better then they use to. I also had so samples of a drink called resource it is 235ml 455 cal and 28 g or protein. It's ok put it can be mixed into other things too. Hope all goes well and I'm glad I found these different fourms as I'm looking to start humira soon.
 
I think you really need scopes to clear all of this up for you. It seems likely that there is some inflammation in his gut, which is causing the sudden increase in BMs and the BMs at night. And, of course, is also causing the anemia.

But until you scope, there is no way to know how you will proceed. His Humira may be made weekly, or he may have to switch to a completely different medication. He may need supplemental EN or EEN. It's just hard to speculate without the scopes.

On another note - Clash, it seems like C won't do the NG tube because he thinks gaining weight like that is pointless and not sustainable. But there are kiddos who do use NG tubes for quite a while and then switch to g-tubes. In M's case, right now, it does seem like she's going to need her formula just to maintain her weight. We don't expect this to change drastically any time soon.

I guess what I'm saying is that the reality of the weight gain situation may be that he needs supplemental EN indefinitely to maintain his weight. I know that's very hard for them to come to terms with but that might be what is needed.

It certainly is for M. We tried to lower her feeds the other day and she promptly fainted in the gym the next day.
 
Oh no she fainted? Poor thing! Is she okay now? Did you increase her feeds back up?

Yes, that was C's issue with EN. Shortly after surgery I was concerned because C wasn't gaining weight. Still somewhere between 112 and 115lbs. The GI, at the time, said that alot of kids do start gaining weight after surgery. But it being a small bowel resection there is the possibility he will remain thin. Dusty stated the same and that her daughter remained thin. That's when I stopped obsessing about the weight.

That was all before the first followup scope that showed the cellular inflammation so of course it might not have any thing to do with the small bowel resection now.

C has just recently discussed wacting to put on some weight. If he chose EN or a g-tube (I think at this point that would be unlikely and probably something the GI wouldn't consider) I would support it but I think C would tire of it.

I agree I think this scope is necessary, even if all was well since there was inflammation on the last one. I don't want to add anymore treatment before then unless he wants to add a couple of Boost in an effort to gain. I hope we can just make it to the scheduled scope time which is 6 weeks away.

If it has to be sooner then it just has to be but the way it's scheduled right now it would be over Christmas break. So he wouldn't miss classes which is something he has been adamant about. Trust me though symptoms start popping up and he'll go along with sooner!
 
Ugh, Clash, I'm sorry there are so many questions. :(

You know S is still drinking a Boost shake most days... and it's been over 4 years. At this point, and with only one, max 2 shakes per day, I don't know think he would lose weight if he stopped it but, I do believe for a long time it helped maintain his weight and nutrition. As Maya said, perhaps C needs to look at it as a longer term aid, not just a quick fix.

While drinking the shakes might be easiest, there are also Boost puddings with similar nutritional values/calories and Boost's site has a list of recipes using the shakes. As for Carnation breakfast, when my kids were much younger, I would dilute the shake with milk for them - perhaps, he can have 1/2 shake with milk in the morning and the other half in the evening? I'm sure you could try this with any of the shakes.

I'm sorry, I've probably just missed the answer to this question but, is his GI willing to move up humira before the scopes? ...if his symptoms continue or increase?

Sending lots of hugs... I really hope this can be resolved easily with a dose adjustment! :ghug: :ghug:
 
My daughter isn't tolerating Carnation or Ensure right now, but interestingly, she can do Ensure Clear without having abdominal pain and sick feeling. She said it is more like drinking juice with a little after taste.
 
Has he tried Orgain drinks? I think they are thinner tasting, not so heavy. They might be an option?
 
I swear guys we've tried them all. I told him this when he said he wanted to try them to put on some weight. I think he believes I can just magically come up with a new type, flavor brand that he's gonna tolerate!

Although, when he gets off work tonight I'm gonna have him try the carnation/milk mix Tesscorm mentioned.

They have a gym with a health food bar, I told him he should go by and try the selection. He might find something.

He does gag, vomit and feel sick to his stomach with these otc brands but he doesn't like sweet to begin with, no cakes, cookies, shakes, brownies...all the things kids should love. Trick or treating with him was awesome because he didn't care if I ate all the candy!

We tried smoothies once, those were ok. I'm thinking of showing him how to make a smoothie with some of these and fruit or just high calorie ones. So if he wants the weight gain he can be in charge of it! That way he can pick and buy what he wants to put in them to his tastes and I want feel so defeated when I go out and purchase all this stuff and he quickly gives it up for whatever reason.
 

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