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In Israel and in trouble

A

awmom

Hi all, sorry I haven't been on the board much lately. N has been away for his first year in college and doing fairly ok, although I had to hire someone to cook and bring some meals to his dorm since he couldn't find anything to eat he had taken a turn for the worse.

Well, he signed up for a trip to Israel during the holidays, which surprised me because there are so many times he has trouble with food, sleeping, feeling poorly, but he felt he was up to it, and I didn't dissuade him. He has been gone a week and today he called me and said he felt awful, couldn't eat, had a lot of pain. He's been like this for three days and hasn't told anyone. He did take almost a whole case of peptamen and has gone through half of it. Of course I am freaking out! I told him he could come home if he wanted to, that he must tell the group leader, see a doc, stay on liquid diet. I'm just afraid that this will start things up and he will need another surgery......I do realize I'm jumping the gun here, but that is the ultimat worry.

I guess I'm just venting and feeling so badly that he hasn't gotten to enjoy what could have been a wonderful trip. Wondering how this disease will limit him for the rest of his life, and how he will manage. He will call me tomorrow to see what he decides. I think he felt better just knowing he has the option to come home. Sigh.........thank you guys for letting me vent!
 
DustyKat

DustyKat

Super Moderator
:ghug::ghug::ghug:

I am so sorry to hear that your son is away and having troubles awmom. :(

It is so hard when they are away and feel poorly, we feel so helpless, it sucks. My daughter has had two overseas trips this year and whilst the first trip was uneventful the second was not. It wasn’t Crohn’s related but she was plagued by a UTI. It was so hard only being able to give advice and direction over the phone but you have said all the right things mum and I agree that knowing you are there for him and that he can hop on a plane at any time does help alleviate things.

How long is he away for?

I so hope that things soon settle for him and no interventions are needed, bless him. :heart:

Thinking of you.

Dusty. xxx
 
A

awmom

Thank you so much for your response Dusty, he will be away until the 7th which is not to bad. They are trying to find more peptamen for him but have been unable to so far. Hopefully through a doctor or hospital they can get some, or the equivalent. I told him he must have some for the trip back which will be about 20 hours. He did say he felt better this evening so that has put me at ease some.

I think the big problem is that he never wants to tell anyone about his situation and does not want to be a bother and just tends to go with the flow without regards to his limitations. Sometimes I think he is still in denial. This will be a huge learning experience for him! I often think of your son and daughter and how well they have done since their surgeries (except for the overseas UTI!!) and off in college.....that is so amazingly great! You Have taken such good care in every aspect of their nutritional/Crohns care. our docs have been quite reluctant in that aspect.

Many thanks again Dusty......a good new year to you and yours.
 
DustyKat

DustyKat

Super Moderator
Thanks awmom. :)

I wonder if they have contacted Nestle in Israel, I think their products are marketed by Osem, or CCFI (Crohn´s and Colitis Foundation Israel), they may be able to help put them on the right track too.

It surely is hard at their age to have to deal with a disease like IBD. Such a difficult age to be different and not be able to spontaneous about things. :ghug:

It is good to hear he is feeling better and I hope with all my heart it stays that way! :heart:

Will you be seeing him when he gets home?
If so roll on the 7th so you can eyeball your boy again! :)

Dusty. xxx
 
A

awmom

Thanks a Dusty, I will give him the info on the supplements! He called again 3am his time in great pain after eating 1/2 cup soft oatmeal. Lots of pain, pressure, cannot have BM. Cannot sleep Wanted to just come home. I suggested going to ER in case he was having An obstruction, and staying in the hospital until the group was ready to come home. At least they could check him out and "feed" him. He agreed, but Later called and said he just wanted to come home, he hasn't slept in days and so the group leader is trying to arrange for a flight home, are trying to get him some supplements and have been very nice and understanding. N said he has met 2 other kids with Crohns on the trip. Hopefully they will keep in touch and support each other through this journey.

Now I am just waiting to see what flight will take him to New York so I can work on getting him to Texas. I am actually In Mexico visiting family and will meet him in texas to take him home. Kind of worried with him traveling by himself in his condition, but he assured me he was fine as long as he only had liquids. Can only keep my fingers crossed! Hopefully I will get to see him on the 5th! Thanks for being there a Dusty and for always making us feel better.
 
DustyKat

DustyKat

Super Moderator
Oh my, I am so sorry to hear that things have turned again, bless him. :heart: Nothing worse than being unwell and so far from home so I can surely see why he just wants to get back and be with you. :ghug:

I hope things go smoothly from here on in and you soon have him home with you. Good luck mum, you are in my thoughts and I have everything crossed!

Dusty. xxx
 
W

worriedboy

Hi,
Will it help if I meet him and hand some Ensure cans for the trip back hime ?
If you need any help with translation or contacting CCFI please send me a private message !
I wish I saw your post earlier.

Anyway keep me posted if your son was able to manage and get on a plane back to US; again if you need anything please tell me.
 
C

crohnsinct

Well-known member
worriedboy said:
Hi,
Will it help if I meet him and hand some Ensure cans for the trip back hime ?
If you need any help with translation or contacting CCFI please send me a private message !
.
Click to expand...
OMGosh! I just welled up in tears! This is why I LOVE this community so much! Where else can you get this kind of understanding and support?

Awmom: I am beside myself for you. After hearing this story I don't know if I will let my girls off leash! But seriously, our doc always says that Israel is a hot bed of IBD activity and the are cutting edge so he is at least in a good country if he needs urgent care. I hope he gets home and into your caring arms soon!
 
A

awmom

Thanks so much to all of you, Dusty, your kind words and thoughts, worried boy, omg your generosity and support, and crohnsinct, your putting in words why this forum is amazing, your support,empathy and kind words!

Well he did finally get on a plane from Israel to Jfk at about midnight. He had to spend the entire day in Tel Aviv with the group and felt awful the entire time, cold hungry, and couldn't keep his eyes open......tried to find a place to just sleep, forgot his peptamen on the bus, was cold from not eating for two entire days except for a couple of peptamens per day. He he was only taking two a day because he was worried he couldn't get any more. Everybody tried to be very helpful, but it being a group situation made it more difficult.

He was not able to get any ensure (worriedboy, your offer was a Godsend but I didn't see your post until now!!! Thank you anyways!)so he will have to make do with what he has which was I think four cans. The airlines were very nice and allowed him to take his drinks onboard and gave him an aisle seat. Hopefully he will sleep most of the way. He will have to make several transfers and will be in Houston tomorrow late afternoon. If he looks really bad I will take him straight to emergency. I am so scared of how he will be/look after this ordeal.

I wish he would have stayed and gone to emergency there, I know he would have been well cared for, but he felt he just needed to get home and seemed desperate. In this whole situation I've been reminded that no matter how old our kids are, how adult, and confident of their ability to navigate this world, they still need our help so much. They over or underestimate their limitations as well as others willingness and desire to help.

Thank you again so much for your support.....I will keep you posted after tomorrow.
 
Sascot

Sascot

Sorry his trip had to end like that. I'm glad he managed to get flights and will soon be home so you can be there for him.
 
Maya142

Maya142

Moderator
Staff member
Glad he's almost home!! Young adults really are kids and sometimes they just need Mom when they don't feel well. My daughter in college has gotten much better at managing things on her own but if she has a bad flare, she really prefers to just come home for a few days.
Sending hugs!:ghug:
 
A

awmom

Thank you all, heard from him at 5am after landing in JFK.....he said he felt much better (probably because he got some sleep!) the only problem is that he is very hungry but has no more supplements and is afraid to eat any "real" food even if it's in liquid form. But I feel better and think he will be ok once he is home! Phew.........
 
W

worriedboy

This is very encouraging, and I hope it only gets better. I assume that being home will let him get back into shape.

But please, dont wait too much, go see your dr. It sounds like his status is not good, if he is not eating and in pain he has to be seen by his GI ASAP. Maybe they will have to stabilise him with a round of steroids ?

Out of couriosity, is he currently on any meds ? Did he travel with them ?
Sometimes the youngers tend to neglect the med. regimen ...


Please feel well and I am sure once you meet he feels better already.

All my best to you,

Worriedboy
 
A

awmom

Hi worriedboy,
We are back! He did fairly well on the trip and slept most of the way. He looked much better than I expected, but definitely thinner. He declined the Ensure I brought him from Mexico and waited till we got home to drink his peptamen. Tomorrow I will call his GI an see if he can see him this week. And he plans to stay on liquids for a few days at least.

He does remicade infusions every 10 weeks so maybe the doc will push up the date a bit. Hopefully he'll do some labs as I would like to see some of his inflammatory markers. I am sure the problem stemmed from travel fatigue, stress, the food which he said was delicious, and one meal that totally floored him. I was pleased that he came back talking of some good experiences, and meeting lovely people, though he said he was exhausted during the entire trip. An interesting thing he said was that in his group (40 kids) there were two other kids with Crohns!

I'm glad he's home and hopefully will redouperate completely before going off to school.

Thank you again to all for accompanying me through this ordeal.
Wishing you the best also!
 
my little penguin

my little penguin

Moderator
Staff member
Why remicade every 10 weeks ?
Standard protocol is every 8 sometimes shortened to 4,5,or 6 but never past 8 .
There have been numerous studies on the timing for crohns .
That time frame really seems outside of the norm .
Can you get a second opinion ?

Glad he is back home and feeling better
 
A

awmom

I have always wondered about the timing of his remicade, but his doc at one point said that if he did well, that he might even stretch it out to 12 weeks!!! The thing with this whole ordeal is that I am not sure if he was having a bad flare, or if it was a partial obstruction, and what all of this means in terms of whether or not his treatment is working. I am somewhat afraid that the doc is going to want to give him prednisone (that is always his first response) and if I should accept it. In the meantime I will try to keep him on peptamen as long as I can!
 
my little penguin

my little penguin

Moderator
Staff member
Sorry but most studies and Gi at big Ibd centers stick to 8 weeks max
12 weeks has been shown to increase risk of antibodies and flares
 
W

worriedboy

If he has an inflammatory obstruction than in my opinion a course of pred may be the best option as it provide a quick fix and will prvent things from going down hill. If it is a flareup you dont want to mess with it.
 
Tesscorm

Tesscorm

Moderator
Staff member
If he is open to doing exclusive EN for a period of approx. 6 weeks, you may be able to use EEN as a treatment to induce remission, while still on remicade. At the same time, you can discuss his maintenance meds going forward, ie shortening his remicade cycle, etc.

Exclusive EN does have comparable success rates at inducing remission as steroids, however, I believe it is most effective the first time used. Not sure if he has done an exclusive course before?? When CIC's daughter was on remicade only and it didn't seem enough to keep her in remission, she added a course of exclusive EN and that pushed her into remission and, follow the EEN, remicade was then able to keep her in remission. Just another option to ask his GI. :ghug:
 
kimmidwife

kimmidwife

Awmom,
I was off for a few days and am so sorry I missed your posting. I have a good friend who is a pediatric GI in Israel. I am glad he is home though. It concerns me that your GI is not listening to the reccomendations for how to use remicade. The recommendation not to go past 8 weeks is there for a reason. It upsets me when. Doctors dont follow protocols that were established when the drug was made and tested. It might be a good idea to get another opinion from a different doctor.
 
A

awmom

Thanks for all your input. He has a GI appointment tomorrow and got blood work done today so hopefully we will have some info to go on. I will definitely talk to him about his remicade intervals, and also am planning on getting him a GI where he goes to College and this way will have a second opinion. In the meantime, he is on peptamen only, except he only got 4 in today because he has been sleeping since early this afternoon! I wish he would go for the EEN Tess, and will discuss with him, but I doubt he will be amenable.....he's already saying he would like some real food!

Worriedboy, did I understand correctly that if it's a flareup he should NOT go the prednisone route? But if it's and inflammatory obstruction then he should?

Thank you ALL!!!
 
DustyKat

DustyKat

Super Moderator
So good to hear he is home safe and sound and the ball is now rolling to get him back on track again. :ghug:

Good luck with appointment and please keep us posted! :heart:

Dusty. xxx
 
W

worriedboy

A flareup mean that inflammation is rearing its head, and this has to be taken care of, ASAP. This is conservatively done by a round of pred, or at times een as some have mentioned here.
They generally try to avoid steroids, but in such a case this is the perfect fast fix until a maintanance treatment kicks in. Thus, if you ask me, I would not hesitate neither pred nor een; I believe that the earlier you take control over it, the better.

Regarding your question, if your son has a scar tissue, it does not respond to meds. Then there is the question, again in the case we are talking about a stricture (this has to be scoped), how much of it is narrowing due to inflammation and how much is scar tissue.
Sometimes this can be determined with MRI, but another tool is "steroid testing". They just run a round of pred and see if there is any improvemnet.

Bottom line, I would not be surprised at all if his GI would prescribe a taper of pred, as this is a classic scenario.
Obviously, though, he will have to run some tests first.


Good luck with your appointment. Keep us updated.
 
A

awmom

Just got back from the GI. He said his CRP is high (30something) but his Sed Rate is normal (7). He said the CRP could also be high due to an infection and so he wants to run some stool tests before he does anything else, especially since he has had c-diff in the past, and also because the problems started after a particular street meal. If his tests come back negative, then he would have him do his remi earlier (he is no due for a tx until the 21st). He did not mention prednisone. He also said he should have solid foods because N is starting to think that he needs something solid in his stomach for it to feel settled, and because he has lost 6-7 pounds in the one week and wants him to get in as many calories as possible.

My understanding then, is that the remicade would bring him into remission.......is this correct that it is not only used as a maintenance med, but also can stop a flare?

N is dying for some solid food especially since he can only get in about 4-6 can of peptamen in before he starts to feel bad. I am nervous because I know it would be better for him to stay on the liquids at least until he starts his remi., but his weight keeps going down like this.
 
kimmidwife

kimmidwife

Awmom,
In Crohn's disease it is not that unusual only to see the CRP raise and not the SED rate. My daughter's labs often don't raise at all. I am very surprised with his symptoms that he is not ordering some type of imaging. Yes remicade can bring you into remission but very often the doctors will do a short course of prednisone to bring things under control quickly.
 
A

awmom

Wow, well this really worries me now! I checked his labs when he was first diagnosed and his CRP never went above 8.9, so a reading of 30+ is worrysome. His GI said that he wanted the fecal studies first to rule out and infection and then we would go from there. I will be taking the samples in tomorrow and hopefully will know more by Monday. I also would have liked some kind of imaging since the pain he was feeling was worse than any he has felt before. N is feeling fairly well, with pain only sometimes and which he attributes to gas. He is adamant that he wants solid food so we will try some blended foods tomorrow and see how it goes. If there is pain I will call the GI and ask for imaging. Today he actually had 8 cartons of peptamen which is really good for him!! Wish he would stick it out for the 6 weeks. So I guess I will be patient and see what the test say. Thank you so much for your support and wisdom....it makes it so much easier when it comes time to talk to the doctor!!!!
 
A

awmom

yes, 8 carton is the most he has ever been able to take in. If he drinks more, he feels lousy. Today he had a small bowl of blended chicken soup and then he had a difficult time drinking more than 5. So tomorrow he will be back on only liquids. Hopefully we will get the results of his test by tomorrow.

Regarding a second opinion, we have had so many docs that were not very good and not very caring, that I get paralyzed not knowing who to choose. I would like for him to have one in Austin which is were he is studying. There are two that are members of the CCFA but I also know that that doesn't mean much and the reviews are always mixed. I like his current GI at Texas Childrens but he is far away if an emergency should arise.

Lat night I remembered the reason he was put on remi every 10 weeks,and that was because his WBC count was dipping way too low. I have often wondered whether he ever has been in remission because he has not been able to gain weight or eat normal quantities of food without feeling sick, but they did an MRE in July and everything was normal, his labs were normal, and biopsies came back normal (last one was before his surgery in march 2013). I know his diet and stress level have changed alot since going off to college plus this TRIP!!! I suppose things could have changed in the short time.
Whenever they call to give me his test results I will ask about imaging. If he has no infection (does not want to give remi or pred if he has infection), the plan is that he would get a remi treatment asap. Does this sound reasonable?
 
A

awmom

MLP, do you mind if I ask why DS is having imaging? Is he having symtoms> What are they?
Kim, what are Caitlyn's symptoms while having a normal CRP?
 
Maya142

Maya142

Moderator
Staff member
Have you ever had antibodies or Remicade levels tested? Perhaps Remicade isn't working anymore?
 
A

awmom

No, I havent! That would certainly be faster than seeing if the remi works! Especially since I would like for him to be in much better shape before school starts! Thank you Maya, another question for the doc!!
 
A

awmom

No MLP, he's never had a pill cam.....I think the reason for that is that he had a stricture early on. Wouldn't the MRE show if something were amiss? I'm so sorry to hear DS is having pain. It sounds like his gi is very proactive....I hope you get an appointment soon for the MRE and they can get to the bottom of this.....waiting is the worst!
 
DustyKat

DustyKat

Super Moderator
A 30+ CRP (300+ in Aus terms) is very high and that alone in my book would warrant further investigation such as imaging.

If the doc is thinking infection what is his WCC?

Dusty. xxx
 
A

awmom

Hi Dusty, I'm not sure what his WBC was, but the doc said everything was normal except for the CRP.....makes you think huh....? I should be getting a call back from them with results soon so I will ask about that also! Thanks.
 
my little penguin

my little penguin

Moderator
Staff member
Just make sure to get copies of all blood test results on a regular basis
Just good practice and let's you see his normal
Additionally any imaging reports or pathology reports .
Good luck
 
A

awmom

YES! I have most of them....just missing the last few months because they do labs at each infusion away from home now and send them to the doc.....I need to get the copies!
Thanks MLP
 
kimmidwife

kimmidwife

Awmom,
Caitlyn's CRP remains basically normal always no matter how bad her symptoms are. Her blood work doesn't really change. Her fecal cal protection though does go up. Interestingly though for her it doesn't go up as much as others. Her last colonoscopy was a mess but her fecal calp. Was only 850 I think or maybe 900?
I am not sure why her body doesn't seem to react the same as others. But the blood work not changing is something I have heard a lot from other parents.
 
A

awmom

They called today from the gi's office to say that the full results will not be ready until the 23rd!!! He is also getting his calprotectin level (it was 54 in July) and some kind of a differential for the cdiff. In the meantime he said to go ahead and get his remicade infusion early. He is scheduled for tomorrow. He is feeling better stomach wise, but is incredibly fatigued! Feels like he could sleep all day. Hopefully the remi will help because he is hoping to go back to school this Friday! Makes me nervous, but glad he is only a couple of hours away!
 
A

awmom

Hi Sudsy! Thanks for checking in. Things are sort of under control. He ended up having a a bug (campylobacter) that he picked up while in Israel. I still worry about him so much....his weight is very low still (96 lbs) and he isn't able to eat many foods. He basically doesn't eat during the day because he doesn't feel well after, so he drinks Pepatmen during the day and then eats a meal at night so he can sleep it off. I have made an appointment with a different doctor for June to see if there is anything else we can do. His labs are all ok. He had an MRE a year ago and all was fine. I was hoping to have him work on his health during the summer but he doesn't want to deal with it and just interviewed for a summer job!!

And how are YOUR kiddos doing....I do hope they are well!!!!
 
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