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Crohn's Disease Forum » Parents of Kids with IBD » So many questions...WBC and Remi,scope, Docs...


 
08-04-2015, 12:35 PM   #1
awmom
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So many questions...WBC and Remi,scope, Docs...

So I've been in my usual high state of anxiety about N's never changing health status and my equally usual misgivings about assessments/recommendations from MD's. Here is the scoop.

A month ago I made an appointment for N to see an adult GI where he goes to college so that he would have someone there in case of an emergency. This doc recommended an small bowel enteroclysis which, after my inquiring about preparations for it, the office said was ordered erroneously and actually wanted a SBFT. I was not sure about doing it so since he soon was to have an appointment with his pedi GI I decided to wait and ask him (he said NO SBFT).

Went to the pedi GI and was pretty firm with him about the lack of progress for N in terms of his weight (still 97 lbs), his fatigue after meals, his general lack of appetite and stomach feeling "bad" after eating..... Aside from this, I mentioned that his WBC count is creeping up. Has always ranged around 3.5-3.7 and has progressively moved up to 5 in the last 2 months. Doc ordered more bloods plus fecal calprotectin which all came back normal and he has a scope scheduled for August 20. Doc thinks it's just IBS and has no recommendations. He said he was not too concerned about his weight or the WBC count.

So basically my questions are:
1) Would not an increasing WBC indicate that he is loosing response to the remicade?

2) Is IBS what is really making him feel bad after eating? He had an MRE a year ago which showed all was ok. And how does one treat IBS?

3) Does he really need a colonscopy? He has not had one since right before his surgery in 2013, but his symptoms have not changed and all his tests have come back normal. (sed rate 9, CRP below assay, calprotectin 62, and his Hct, and RBC are normal for the first time in a long time!) How often is it recommended that they have scopes?

4) What in the world do we do about that new doctor?

N is getting completely fed up with seeing doctors, but he is also completely fed up with feeling poorly.

Thank you for letting me unload!
08-04-2015, 01:36 PM   #2
Tesscorm
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I feel for you and N. It is so hard when it seems there is no clear path. Unfortunately, I think it partly comes down to the inconsistency of test result accuracy (labs a good indication for some but not others, etc.) and reactions to meds (remi great for some, not for others!) so each GI has come to their own opinion of the best treatment based on their own experiences! It's absolutely great to get more than one opinion but, ughhh, when they differ...



As far as testing... S was diagnosed in May 2011, since then, he's had three scopes - one at dx, one when he moved from ped to adult GI/when adding remicade, Fall 2012) and his last, this spring, to confirm all was well after being on remicade for 2+ years. For the first 18-24 mos, after dx, he also had 3-4 MREs - all as 'follow-ups', never to check on any particular symptoms. I think the frequency of imaging/scopes is dependent on GI, symptoms and a change in treatment or GI. I don't think there is a standard schedule.

I think the scope is a good idea but it willnot see his small intestine - can you request an MRE instead of SBFT? I'm not very familiar with SBFT but I think an MRE may be a better test (and no radiation??). Why did his ped GI say no to the SBFT?

As for an ongoing plan... N does not seem to be in complete remission but the ped GI seems to be content with the status quo?? If it were me, I would go ahead with the tests (scope and MRE or SBFT) and then follow-up with both drs. It may be that, once those results are known, both GIs suggest similar treatments.

As for IBS... first off, IBS does not directly affect weight gain, however, if IBS is causing him to lose his appetite/eat less, then weight could be affected. Test results (imaging, scopes) should be discussed first before settling for IBS. But, if in fact, IBS is playing a factor - my husband has IBS, he has simply learned what he can and can't eat. He never eats late at night, he limits fried or spicy foods. He also limits foods eaten at restaurants - doesn't avoid them completely but he finds eating out too often will cause him problems (restaurants generally use more fats, salt, spices, etc. and meals are usually heavier/larger). He also avoids foods high in acid (but this may be more specific to him as he suffers from acid reflux). You can also try eliminating/reducing the more common food intolerances to see if that helps (dairy, gluten, etc.)

Weight gain - would he consider drinking nutritional shakes as a supplement?

And just sending hugs... I know what a fine line it is dealing with a teen who is frustrated (and with reason ).
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
08-04-2015, 01:46 PM   #3
Tesscorm
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Oh, also on the IBS - when it does act up, it can cause my husband quite a bit of pain and nausea. It can be bad enough to wake him up and keep him up! When this happens, and this is when weight can be affected, my husband will make a point of eating next to nothing the next day to 'give his stomach a rest'. While the intensity of the pain may lessen, once this happens, it's almost as if it leaves his stomach/intestines 'raw' and it will bother him for a few days until all settles.

At its worst, my husband once woke with extreme stomach pain, was doubled over and the pain was so severe he actually fainted and literally dropped to the floor! I called ambulance, he was taken in and after lots and lots of tests - they determined that it was likely some cold medicine he took on an empty stomach.

I have wondered if it's crohns but he's been like this since he was a little boy and has had lots of tests over the years, including scopes, MREs, etc. - in his case, I do think it's just IBS.

I'm just sharing all this because while I think IBS is a cop-out dx too often and I don't think IBS is the 'complete' culprit in most cases, I do think it may sometimes really may play a part.
08-04-2015, 02:13 PM   #4
crohnsinct
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Oh man...sorry you are dealing with all of this.

First, I would also be pushing for answers on why he is not feeling better and would not take IBS until all other possibilities are ruled out. Therefore, I would be welcoming the scope and also pushing for an MRE to see how the small bowel is doing. If doc feels a need for the scope then and MRE is pretty standard issue. Why look at one and not the other? How long ago was that fecal cal of 62?

I would be thinking the same as you with the WBC but I can't say that is scientifically sound thinking...just my mother of a Crohn's kid been around the block a couple of times paranoid thinking. I would maybe ask about checking his levels and antibodies at the next infusion.

IBS...yeah, sad as it is there seems to be quite a few people who suffer from both IBD and IBS which really must mess with your head. How do you know which is causing symptoms when symptoms of each are the same.

There have been a few low weight and symptomatic kids here dx'd with gastroparesis recently. I don't know a lot about it but before I accepted IBS I would want to cross that one off the list.

Sorry not a lot to offer but
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
08-04-2015, 03:57 PM   #5
Maya142
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My daughter is one of the kiddos with Gastroparesis who has had a lot of trouble with her weight. For gastroparesis, it is a simple gastric emptying scan you want - the kiddo eats eggs which have something radioactive in them (they still taste normal!) and then they take pictures for 4 hours. M has been through a whole bunch of meds for the Gastroparesis, but what helped most is her NJ tube. She has gained almost 20 lbs on it!

Before she was diagnosed with Gastroparesis, we had a period last year (or maybe 2 years ago?) where she had diarrhea, pain and cramping after every meal. Scopes looked good, FC was low and she was diagnosed with IBS (in addition to IBD). I didn't believe it for a while, and her GI insisted it was stress related. Well M has been seeing a psychologist and is much better at dealing with all this and ALL those symptoms went away. I was furious with her GI at the time, but she was right and some part of it really was stress!

That said, I would want to rule out active IBD especially with his very low weight. I would do the scopes even though I'm sure he's sick of doctors. And I would try to talk to him about an NG tube - he could insert it every night and take it out in the morning, no one would have to know. As long as Gastroparesis isn't the problem (in which case you might have to bypass the stomach with an NJ tube) an NG tube should work well. It's really much less intimidating than it seems.

Sending HUGS!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-04-2015, 09:57 PM   #6
awmom
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Gosh, you have helped me tremendously!

Tess- I think the reason his pedi GI did not ask for an MRE is that he had one this time last year and he said all was ok. He said no to the SBFT because he said ( like you) that the MRE is a much better test, and that if the SBFT showed anything, they would have to do an MRE to follow up. So sorry to hear about your husband and the plus to his story is that he has learned to manage it to minimize the symptoms, but I know it can't be easy. N has also had to limit the foods he eats and eating out is always a problem. This of course causes him big problems now at college where he then has to limit social activities and must learn to cook for himself. He does drink Peptamen...he couldn't tolerate the sweet ones so he drinks the unflavored which is quite wretched. Because he feels overwhelmed with the cooking thing, and because he dreads eating during the day, he drinks about 4-5 a day, and then has a meal at night so he can "sleep it off". Recently, however, he said he thinks the drinks might be bothering his stomach!!! And when he goes to the grocery store he says he just doesn't know what to buy because really, all he can buy are foods he is going to have to cook. I too am thinking he might have IBS and he is starting to accept the fact that things may NOT get better than this and he will have to manage. One of his doctors said to him when he was about 16 "sometimes people with Cronns just feel like crap all the time and you are just going to have to get used to it." When we left he was white as a sheet and he asked me if that was true, and of course I said NO!

Crohnsinct - I will ask about an MRE, and maybe from his new doc to have another set of eyes on the problem. His fecal cal was done just 3 weeks ago so it's current. That is the big problem, is that all the tests come out normal. But they have not mentioned gastroparesis and definitely think it is worth considering. Will definitely ask his doc when they do his scope as will I ask about checking his antibodies at his next infusion.

Maya- it's so amazing to have such incredible weight gain!! I have broached the NG tube subject several times. N of course has balked, and this last time when I asked his GI, he said he did not think it necessary....hmmm. I'm still planning on pushing. Regarding the stress, he does suffer from extreme anxiety so I know this has to be affecting his gi issues tremendously, but he will not see a therapist...actually, he has seen two, but stopped after just a few sessions. We have talked about it so much, but he says he doesn't believe it will help. It's so difficult because I cannot make him do what I know is best...grrrrrrr!!!!

I can't thank you enough.....I feel so much better!!!!! So will take him to his scope with a not so heavy heart, and armed with more questions for his GI. And since we will have some car time together, I might broach these subjects with N again.
08-05-2015, 11:24 AM   #7
Tesscorm
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What an awful thing for a GI to tell a 16 year old! That he may always feel like crap!! I hope N hasn't kept this is in his mind! I know my aunt, who has crohns, took quite a while to reach remission (years ) but, once remission was achieved, she has been fine now for at least close to 15+ years! While she watches her diet and takes meds, she is fine otherwise - travels, eats out, feels good, etc. When she eats the wrong food, she has felt the effects but for no more than a few days. But, frustratingly, it can sometimes take a while to reach this point.

FWIW, my husband doesn't really struggle with his diet restrictions. I'm sure that's due to a lifetime of learning what sits well with him but, he's so accustomed to his diet, I know he rarely gives it a second thought - it's rare for him to think 'oh I wish I could eat that'. He eats well and a variety but, as N is finding, what sits best with him are healthy, clean, home prepared meals. Not to say he doesn't splurge once in a while but he keeps to a strict moderation of splurges. But, I can understand how much more difficult and disappointing it is to eat this way when you are young and out with friends most of the time! Whether it's crohns, IBS or just a typical/normal reaction, S also finds that too many rich meals begin to 'drag' him down - not really sick but not feeling great either.

If it's possible, I'm sure you are already sending him home meals. The other thing I did was put together a mini recipe book for S when he went away to school... I gave him recipes and ideas (aka as the very basics of cooking ) for plain, simple meals - pasta with grilled chicken and a bit of butter/olive oil, omelets, risotto (plain rice stirred with a bit of tomato sauce and grilled chicken), steak on indoor grill w/boiled potatoes, etc. This might help N when shopping and then simplifying meals because he'll have the right items at home??
08-05-2015, 12:22 PM   #8
awmom
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Oh Tess, how you made me laugh with that angry emoticon....that's exactly how I felt!!! That is a brilliant idea about just a very plain recipe/idea book. I had thought of supplying a few recipes, but sending in a several menus with some instruction is probably even more useful for him! Last year, because he was in a dorm, I hired a personal "chef" to bring food for him every other week, and I took him food from home on the alternate ones. But now that he has a kitchen I want to encourage him to do some cooking and feel more in control.

It's so encouraging to hear about your aunt, and about your husband....it covers both scenarios of what N might be facing. Either he IS in remission (as his doctor says) but will need to learn, like your hubby, to manage his food sensitivities and quantities, or he is NOT in remission, and hopefully, like your aunt, we will find a way to get him there and feeling well. Either way, there is light at the end of the tunnel, and I do think that N is working hard at accepting that he may never be able to eat as his friends do, but that there are steps he can take to make eating manageable and hopefully delicious.
Thank you so much Tess!
08-05-2015, 12:36 PM   #9
Mr chicken
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Can he do what Ds is doing ???
Ds is doing the partial en with the crohns exclusive diet.
Basically all formula for 50% or more of the calories plus limited food list.
Less choices so less overwhelming to cook from
For Ds we did two weeks of all formula then slowly added one new food from the list a day or every two days
That way we knew which foods did not cause Ds issues at all.
Obviously something to do after the scope and after you talk to your gi about it .
I will post the thread link in a minute
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DS dx at age 7 Crohns
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Aka MLP....
08-05-2015, 12:37 PM   #10
Mr chicken
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http://www.crohnsforum.com/showthread.php?t=71686
08-05-2015, 01:47 PM   #11
Tesscorm
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'personal chef'... OMG, that would be awesome!! Maybe I should suggest to my husband, only in an effort to improve his own health of course, that we should get one!

Couple of things that I send to S that seem to work well in his 'cooking'... I bake meatballs (I use half beef/half turkey and wheatgerm instead of breadcrumbs to make them a bit healthier) and send him a freezer bag full - easy way for him to add some protein to a pasta meal or make a meatball sandwich; I grill/roast 8-10 chicken breasts and send them individually wrapped, roast pork or beef, sliced and individually wrapped... (in the end, I think they all end up with personal chefs! ) There is one prepared food, which has become a staple for both my kids, is instant rice. There is a brand (I always forget which) that sells individual sized instant rice. It's the perfect size for a meal, plain basmati or brown rice and can be microwaved in 60 seconds - perfect for a student (no mess!)

And, as mr chicken's DS, S also drinks 1-2 boost shakes per day. It's a healthy supplement to his diet and often replaces a fastfood breakfast.

I hope the tests give you some answers and that you get a new treatrment plan to get N to remission.
08-05-2015, 02:27 PM   #12
Maya142
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When my older daughter first went to college and was flaring, I also sent her a lot of food. Now that she is doing well, she is learning to cook and shop for food (I will say she still eats a lot of pasta and quesadillas !)

As soon as N feels better, I'm sure he will feel up to taking charge. Is there a dining hall where he can eat on campus? So that he doesn't have to deal with cooking/grocery shopping? S does not have IBD, just AS but has had gastritis due to her meds (NSAIDs) more than once. As a result, she often needs bland food. We were able to talk to the dining hall director and he arranged for her to call the kitchen in advance and then they'd make her what she needed - whether it was pasta, grilled chicken or something else like that.

I don't know if your son likes pasta, but with my younger daughter it is a staple, and I suspect when she goes off to college, she will be eating a lot of it! Very easy to make and I can give her sauce that she can freeze.

She may go this fall (she's still deciding whether she is well enough to) and I'm going to start giving her easy cooking lessons so that she can make a few things by herself.

I agree with Tess - what a horrible thing to say to your son! He should certainly NOT have to get used to feeling like crap. I hope the tests provide some answers.

I know he is against the NG tube but M says to tell him that it is WAY better than drinking unflavored Peptamen, which, in her opinion is "truly disgusting". I'm impressed he can drink it, way to go N!

We also had to see several therapists before we found one that worked well with M. M is shy and quiet but very stubborn and absolutely hated the idea of talking to a psychologist. Luckily, her GI insisted she go and M listens to her! We eventually ended up with the psychologist who works in the IBD clinic at the children's hospital. You really need one that has a lot of experience with kids with chronic illnesses.

Sending hugs!
08-05-2015, 03:14 PM   #13
crohnsinct
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Oh no! Dreading O going to school now...personal chefs? Packing food for them? UGH!

But along the personal chef idea there are also services that will deliver boxes with all the ingredients and recipes to make a meal. I believe they post the meals ahead so you can pick which ones you like etc...I think a few of the companies are HelloFresh, Plated and BlueApron.
08-05-2015, 03:17 PM   #14
Maya142
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Not sure if this exists in your area but Fresh Direct sends groceries home - you order online I believe. I bet he could even get frozen meals there.
08-05-2015, 05:51 PM   #15
crohnsinct
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This is sooooo good for my control freak tendancies! If I want to make sure my kids are eating right all I have to do is order their groceries for them and not get them the meal plan...muwahahah
08-05-2015, 08:23 PM   #16
Tesscorm
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Not a bad idea! Actually, I'm pretty sure S has mentioned a roommate's mom orders his food from Grocery Gateway (Ontario's equivalent)! Not a bad idea - you can control what they eat and how much they spend!

When awmom mentioned N didn't know what to buy because he'd have to cook it... all I pictured was a teeny boy, standing in a huge food aisle, looking like a deer in the headlights!

I even send S the uncooked steaks, individually wrapped ... because I know which ones he likes best! Who knows what he'd buy!?! Hmmm, ya think there's a fine line between 'controlling' and 'spoiling'?!?!
08-05-2015, 08:28 PM   #17
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Well, as long as your kids think you're spoiling and not controlling them you're good Otherwise I could see my 21 year old rebelling.
08-05-2015, 08:33 PM   #18
Tesscorm
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Good point!
08-06-2015, 12:29 AM   #19
awmom
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Thanks for all of your suggestions!
Mr.C - he drinks about 4-5 peptamens/day which is about half or his caloric intake. He basically eats no solids until the evening. I will look at the list of foods carefully and encourage him to try. Maybe he can eat his usual "safe" foods and then add from the list. I've never given him a list and so it might be super helpful for him.

Tess, Maya, and Crohnsinct_ you had me laughing so much!!! I thought I was the only one worrying and sending food. My husband freaked when I hired the "chef" but N had not eaten any solids in 4 days and well I freaked even MORE! He has tried the dining halls but has felt sick after so he does not go there anymore. He cannot eat pasta, tomatoes, dairy, many food additives, fruits of any kind (this made him the saddest), any sugar or artificial sweetners, even baked chicken for some reason makes him sick, etc.....so it's tough for him. Truly, I also think an overnight NG tube would work wonders for him.....just have to sell him on the idea!! I have looked at the Fresh Direct site and he would not be able to eat most of their menu items. But you have given me many ideas (pre-cooked, idividually wrapped items is brilliant!) and will look at the other food delivery services you mentioned. I'm showing this to my hubby who thought I was NUTS....now he can think we are ALL nuts!!! The only time I almost stopped bringing him food was when he told me he had lost all 10 lids of my pyrex containers!!!!
Thank you all....you are true gems!
08-06-2015, 01:03 AM   #20
Maya142
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Make him a deal! M absolutely hated the NJ tube the first time it was inserted and pulled it out within 10 days. She lost so much weight then that we were so desperate to get her to accept the tube that my husband offered her a kitten (I would have offered her something more low maintenance first...a shopping spree, but he got to her first. Men !)

M is crazy about cats (we already got two when she had a particularly bad year and missed months of school) so she agreed. At that point she was so underweight and felt so awful, that the promise of feeling better with proper nutrition also helped.

I bet N doesn't even realize how much better he would feel with extra calories. My daughter went from 400-500 calories a day to 2400 with the NJ tube. The difference was remarkable - I got my happy teenager back!

Tell N if he tries the NG tube for a month, he can have xxx. Chances are, by then he'll feel so much better, that he'll be sold on it.
08-06-2015, 08:38 AM   #21
Tesscorm
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Oh, I have a solution for the missing lids and containters too!! I would send S the more expensive glass containers because I knew, regardless of what I said to him, if I sent plastic, he would still microwave in the plastic containers... But, of course, then I was not only losing lids, but the entire glass container! (To be fair, I would often just get back other roommates' containers! ) So, now... I send most of the individually wrapped foods (gravy and all) in baggies and I've explained to him that the bags will melt if he microwaves in those and then he'll have quite the mess to clean up!! And now I know he takes the food out of the 'plastic' and puts it on a dish to microwave. And... fewer lost containers!

(And, yes, I think most of our hubbies think we're nuts!! )

But, I'm sorry he has problems with so many foods. Has he tried different types of noodles? Gluten free, rice noodles, etc.?? My daughter just found some noodles that are 0% everything (calories, fat, carbs, etc.) - obviously 100% chemicals but they are made from yam flour. Not suggesting they are healthy but they may be something he can eat sometimes?? She found them in the Asian food section but, if you care, I can check the brand name for you.
08-06-2015, 10:53 AM   #22
awmom
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Great idea about the bribe!!! Now I just have to think of something he would like....actually maybe a kitten would do the trick!!!!! I would say N gets about 1500-1800 calories/day. Just enough to maintain his weight. So even if he did the NG tube 3 to 4 nights a week he could eek his weight up little by little. I called Nestle a couple of months ago to get their info packet....maybe it's time to pull it out. Do the tubes require a lot of maintenance? Other than flushing them out the pamphlet did not have much info.

I think plastic bags are the way to go!!!! Switched to plastic containers the last month of school, after he lost all my lids, and he PROMISED he would not put them in the microwave but I always had my doubts. Needless to say, I never got THOSE containers back!! LOL... the things we have to explain to them (plastic bags will melt in the micro!!!!)

re the noodles, I think he can eat Asian type rice noodles. He just cannot eat much starchy food at a time. And most importantly, he has to eat very small portions at one sitting. I am trying to convince him to eat small portions of food 3 times a day, and the peptamen in between, but i guess that is not very practical when eating out, and even then, he is always afraid he will feel sick, so he just does peptamen until he is able to be at home. He does eat rice and he gets the instant kind. I hope that having a kitchen will help him out and he can at least make himself a good breakfast before taking off for school.
08-06-2015, 11:01 AM   #23
pdx
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Laughing out loud at the kitten! (Glad my daughter didn't know about that, or we would definitely have another cat now too!) We offered cash to my daughter when she started inserting her NG tube herself--more for the first few nights, when it was new and more difficult for her, and then $5 a night once it was easier. That was a large amount of money for her, since she was just 12; I imagine it would be harder to bribe an older kid.

Even with the money, though, she doesn't want to do the tube any more, now that she's doing better, so I understand how hard it is to convince your son to try it.

I agree with the others that the scope is a good idea, and I think I would push for an MRE too. 97 pounds at his age doesn't seem like "just IBS" to me, especially if he's drinking 4 or 5 peptamens a day. (Are they the 250 or the 375 calorie boxes?) It seems like he's not absorbing as much as he should be, which sounds like IBD more than IBS.

I hope that the testing gives you more answers, so that your son can start feeling better and gaining weight.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
08-06-2015, 11:03 AM   #24
Mr chicken
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Things we do
Canola oil in a pan
Microwave a single potato
Remove skin dump in the pan
Scramble eggs with water
Add to pan plus salt pepper
Later you can add tomato or green onion

Ds is 11 and drinks 1500-2000 calories a day plus his dinner
Ds drinks two for breakfast
One for snack
Two for lunch plus melon
One snack
Dinner
Then two more

The diet Ds is on limits starches
Zucchini noodles work well
Eggplant as well
08-06-2015, 11:31 AM   #25
Tesscorm
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NG tubes really quite easy to use. When S was on the 'full' supplemental dose (1500 cal/day), he said he preferred continuing with the NG tube rather than drinking the shakes. Once N gets the hang of inserting them, it should take just seconds. The removal is even quicker and tube just need a quick clean and flushing. He will have to put the formula into the bag and before bed, hook up the ng tube to the bags tube - but we're talking 'moments' here, not a long time. What takes a few minutes longer will be washing/flushing the formula bag each morning (if he leaves it all day, formula will dry in the tube).

Seems like it would be hard to gain weight at 1500-1800 calories. When S was doing supplemental, thru NG tube, he was taking in 1500/night, 5 nights per week. Plus he was eating three meals during the day. I really saw very little impact on his daytime appetite even though he was getting the 1500 cal overnight! The only difference was that, because he'd wake up full, he'd skip breakfast. But, then, I found he just ended up adding a third meal (large snack) late in the evening. It was while he was on this level of intake (not sure of calories from food), that he really gained weight.

At dx, he was 125 lbs, 5'10". Between 6 weeks of exclusive EN and then 6 weeks of the supplemental EN + food, he gained approx. 25 lbs (which was just above where he was pre getting sick). He did the supplemental EN for two years and gained another 25 lbs. But, as I recently mentioned to Jacqui, part of this gain may also have been the stage he was at in developing - the big jump in weight was when he was 17-18 years old and he really just filled in (gained little more in height).
08-06-2015, 12:09 PM   #26
crohnsinct
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Seems like it would be hard to gain weight at 1500-1800 calories.
I agree. When O was 70 pounds and 5 feet she was on 2500-3000 calories a day and still hardly gained.

The more you are telling us about what he can and can't eat I am the much more convinced with the scopes and MRE AND further investigation in o other causes ie: gastroparesis.

One other thing to consider...juicing. You can get all the minerals and nutrients without the fiber. Not high in calories but might satisfy his craving for the fruit and gets lots of good stuff into you. Maybe before you invest in a juicer, take him by one of those juice shops (the real kind not the ones that use all t hath sweetened frozen crap) and order one to see if he likes it. I think Naked brand also sells a line in the grocery. Not a true true juice as it was processed quite some time ago and you are supposed to consume the juice right away but at least for taste and tolerance it would be a good screener...p.s. we juice fresh and my kids hate the taste of Naked but their friends love it.
08-06-2015, 02:17 PM   #27
Maya142
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d most importantly, he has to eat very small portions at one sitting. I am trying to convince him to eat small portions of food 3 times a day, and the peptamen in between, but i guess that is not very practical when eating out, and even then, he is always afraid he will feel sick, so he just does peptamen until he is able to be at home.
The more you talk about his eating habits, the more he sounds like M to me. I would really ask for the gastric emptying test. Not being able to eat more than tiny tiny portions was one of M's biggest problems with gastroparesis.

She would eat a few bites, becomes full and end up nauseous. As she lost more and more weight, her body went into starvation mode and the gastroparesis got worse and worse. And then of course, she ate less and less and it was this vicious cycle.

However, inflammation can also slow gastric emptying so I would do the MRE and scopes first.

In terms of calories, M surprised our nutritionist with how many she needed to gain.
We guess 2000 since she is not active thanks to the arthritis, but really she didn't gain till we got her up to 2400-2500. Now she is maintaining at about 2000 to 2200.
08-06-2015, 10:06 PM   #28
kimmidwife
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Just catching up I have been very under the weather. I agree that he probably does need a scope. After that whole mix up with the new doc is there a different doctor he can see instead? I just am wondering why he wanted to do a small bowel follow through when the stand and has pretty much changed to an MRE. I am wondering if he is up on the latest info. About the gastroparesis have to agree get him checked for that. It is a pretty easy test.
__________________

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
08-07-2015, 10:01 AM   #29
awmom
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Join Date: Sep 2012
Location: College Station, Texas
Wow Mr.C, N could never drink two peptamens at once! He has tried several times drinking 1 1/2 and it made him feel bad for several hours. Having said that, I have not pushed him on the issue much this year since he's been away.....I need to try again. Does DS drink them one right after the other? Does he chug them down or drink slowly?I love your Egg scramble recipe.....will definitely include it in his book!!!

When he goes in for his scopes I will ask about the gastroparesis test. I am also thinking about trying some digestive enzymes to see if this helps at all. He has tried juices (Naked, or plain apple juice), but they seem to bother him...more like a food sensitivity or maybe because it's sweet (thinking carb load?). About his doctor at college, I think I will try to find someone else. I liked the new guy in a sense, but he is older (which initially I thought was a good thing since he would have more experience with CD), and maybe he is more old school. Ug.....I hate it that I pushed on him seeing a new doctor which I picked out of many, and now I want him to see someone else because I made a wrong choice!

Thank you so much to all of you....I will take him for his scope with a lighter heart, and will let you know what the doc says on the 20th!
08-18-2015, 08:51 PM   #30
awmom
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Join Date: Sep 2012
Location: College Station, Texas
Auughhh!! My son came home for a few days today before he goes back to college so he could do his colonoscopy on the 20th,and he actually seemed pretty well to me. Says he feel "ah, ok" (he's not very verbal) and though it doesn't seem like he has gained any weight, I don't think he has lost any. Now I am questioning his doing the colonoscopy on Thursday. I think I'm having these second thoughts because I think that then, if he really starts having problems in the near future, they will not want to do another, or that he will actually have to go through another. His labs are all good as is his calprotectin and his status has not changed since the last 2 colonoscopies that showed no inflammation. I hate to put him through this if it is not necessary. He has gone out with his friends so I haven't had a chance to ask him. The problem is that I think I would need to cancel at least 24 hours in advance, which would be tomorrow at 10am!!!

The only thing that was strange is that he now, since last week, has a rash on the tops of his feet, working it's way up his legs. They are just tiny dots, kind of brown so it looks like freckles or razor rash. Am afraid it might have something to do with the remicade (although his last infusion was 4 weeks ago). Any ideas?
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