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04-10-2012, 09:22 PM   #1
Mom2oneboy
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S says he's hungry :-(

S is on day 9 of EN and told me tonight he is hungry and wants to know when he will be able to eat real food again. Makes me feel horrible and now I sit here and cry. I hate Crohn's! I don't want my child to have to go through this!!

I'm thinking part of the reason he may have felt hungry tonight is because he got home later from school today and then played outside longer and I wasn't able to get much formula in him this afternoon and evening before bedtime. A double edged sword...you have to stop playing and come get chained to the iv pole or you go to bed feeling hungry. Not great options ya know!

Pity party table of 1 here! Thanks for letting me vent!
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Shelley
11yr old son
dx Crohn's 2/2012
Currently on VSL #3
Started EN 4/2
Methotrexate 6/6/12
Remicade 09/30/12

Life is not about waiting for the storms to pass...It's about learning to dance in the rain.
04-10-2012, 10:40 PM   #2
izzi'smom
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I know...such a tough thing for them to go through...(((hugs))). Hoping tomorrow is a better day
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
04-10-2012, 11:45 PM   #3
Twiggy930
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I'll join that pity party and we can make it a table of 2! Been feeling defeated by Crohn's for the last couple of days

I feel so sorry for them not being able to eat!!! My son also complains of being hungry at times. It is heartbreaking to watch them go through this. I wish I could just make it STOP!!!

I also feel bad because we still aren't seeing fabulous results. My son's energy levels still haven't improved, he still can't make it through a day of school and he still can't bear weight on his leg. He is gaining weight and I think his color is a bit better but he sure isn't himself yet. I want this all to go away!!!!

I hope your son can get through tomorrow without feeling hungry. They sure are strong kids for being able to do this.

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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
04-11-2012, 03:47 AM   #4
Sascot
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It definately is a struggle watching the poor kids suffer. Andrew managed through his 8 weeks "eating" through the tube and only moaned a couple of times (mainly as we had a family birthday in the middle of it).
If your son is hungry, can't you just give him a little bit more? The only time Andrew was really hungry was when I fetched him at school for his lunchtime feed. I always seemed to be left with extra formula at the end of the day as he filled up before we could finish all of it.
I can't quite remember - are you just using the pump for feeding? Just wondering - Andrew had just the hand held "bolus tube" which I just held up and topped up till he had finished (I had one very strong arm ). Maybe if you had one of those you could just give a small feed when he is hungry without having to set up the pump?
I know it feels like forever but he will get through it!
04-11-2012, 08:01 AM   #5
Tesscorm
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I wish I had some real suggestions to offer you... It's such a long time for anyone, especially kids, to stay strong and keep saying no to cravings (not even 'cravings', just food!). It broke my heart to see Stephen stay strong through it, I hated the fact that he needed to find that strength!

I do remember that the 'desire' for food (and not necessarily hunger...) seemed to come in waves for Stephen, there would be a few days that seemed more difficult and then it would settle for a bit again. Good news/bad news - dietitien had told us that as healing of the intestines progressed, hunger would increase.

I know all of our doctors seem to give slightly different instructions re the EN (Shelley - I think you said he's only allowed water and candy??) but, perhaps ask if he's allowed broth and jello. It's not much but is, at least, something that resembles a meal. Is he allowed herbal teas? If yes, maybe they would be a bit of a novelty???

Now, this goes against all my logic but... Stephen began watching the food channel and when I mentioned this to his nurse, she said that many of their inpatients on EN or TPN would watch that channel or cut out pictures of foods from magazines and she thought it gave them a 'connection' to food (there's actually another teen on this site that I've spoken with and she did the same thing too). So, maybe sitting with them with a cookbook and planning meals that they want to have once they finish EN would help??? It's something to look forward to and maybe a reminder that it's not forever. I don't know... maybe this would make it worse???

Wish I could offer some better ideas!
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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
04-11-2012, 11:44 AM   #6
imaboveitall
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V seems to be the only one who was allowed to eat while on formula.
The Saint said food would make no difference at all to the efficacy. He didn't use it for a "bowel rest" feature, and he said the anticytokinergic effect and the nutritional benefit wouldn't be affected by eating. She was encouraged to eat any and everything and she eventually did.

Now, her disease being in just the TI and having NO colonic involvement may be why. The Saint is known here and abroad for his advocacy of EN/nutrition in general and expertise (a lab guy told me he is consulted by docs worldwide and travels and lectures galore) so I believe him. He also sent V's case to Ernest Seidman, in Canada, head of an international IBD research team, to review as she is atypical and her response to EN was "one of the most rapid and dramatic" he'd seen in his practice.

ALL that to say, maybe it'd be ok if these kids on formula ate. I'd ask their docs just to see what they say.

Now V was hooked up 24/7 for 30 days, not on/off at the start like S and others are. She carried formula/pump in a backpack etc. She got 3000 cals/ day. This may account for her "dramatic" response (gained 40lb in 4mo) and perhaps these kids just need more formula?

She had awful delayed gastric emptying at dx and when hooked up, motility would correct and she'd get hungry. These poor kiddos probably are having their motility correct and therefore are feeling hungry.

God, I hope it works for all of them like it did for V... I just cannot stand to hear of them suffering with hunger after I watched V starve for months *sob*
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VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira

Last edited by imaboveitall; 04-11-2012 at 12:30 PM. Reason: typo
04-11-2012, 12:37 PM   #7
Twiggy930
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I think my son's hunger during the day is not so much hunger but a desire for food. It is definitely quelled some what by broth. I think the savory taste of the broth satisfies the desire for food better than the candy. It is funny because he never would have eaten broth before this and now he eats it an RAVES about how good it tastes!

In the evening I think his hunger is true hunger. We have been hooking him up earlier and starting the rate high (200 ml/hr) for 20 min to half an hour and then putting it back down to the usual 130 - 160 ml/hr. The brief high rate seems to calm the hunger feeling fast and does not seem to upset his tummy.

We have also been giving him some formula to drink during the day. Although he gets Modulen overnight he prefers to drink Boost as it tastes better. At the beginning he was pounding back the Boosts but the last little while he doesn't ask for them nearly as much. Perhaps as the approach their target weight their bodies require less calories and the hunger diminishes?
04-11-2012, 12:42 PM   #8
imaboveitall
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Def require less cals as they gain. V went from 3000 on down to 1200 and I just bumped it back up to 1500 (one extra bottle) just to see if it helps maintain her well being the pred has given her.
Sidenote: she is still feeling GREAT and is NEVER home now! SWEEET.
04-11-2012, 12:45 PM   #9
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Sidenote: she is still feeling GREAT and is NEVER home now! SWEEET.
That is FANTASTIC!!!
04-11-2012, 05:56 PM   #10
Mom2oneboy
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Awww T, that makes me sad! Could it be the Imuran making him tired?? What does the doctor say about his leg?

I can sure relate to wanting it all to go away. This is the hardest thing I've ever had to go through! So glad for people like you on this forum that make me feel like I don't have to go it alone. Hang in there!


I'll join that pity party and we can make it a table of 2! Been feeling defeated by Crohn's for the last couple of days

I feel so sorry for them not being able to eat!!! My son also complains of being hungry at times. It is heartbreaking to watch them go through this. I wish I could just make it STOP!!!

I also feel bad because we still aren't seeing fabulous results. My son's energy levels still haven't improved, he still can't make it through a day of school and he still can't bear weight on his leg. He is gaining weight and I think his color is a bit better but he sure isn't himself yet. I want this all to go away!!!!

I hope your son can get through tomorrow without feeling hungry. They sure are strong kids for being able to do this.

04-11-2012, 06:05 PM   #11
Mom2oneboy
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I think it's time to up the amount a little and also get some formula in him as soon as he gets home from school. Good idea on the bolus tube. I might be able to do that a little farther down the road. Right now he has to have a slow feed otherwise his tummy hurts. Right now his tummy is just so small. More like concave! Thanks for the feedback!!

It definately is a struggle watching the poor kids suffer. Andrew managed through his 8 weeks "eating" through the tube and only moaned a couple of times (mainly as we had a family birthday in the middle of it).
If your son is hungry, can't you just give him a little bit more? The only time Andrew was really hungry was when I fetched him at school for his lunchtime feed. I always seemed to be left with extra formula at the end of the day as he filled up before we could finish all of it.
I can't quite remember - are you just using the pump for feeding? Just wondering - Andrew had just the hand held "bolus tube" which I just held up and topped up till he had finished (I had one very strong arm ). Maybe if you had one of those you could just give a small feed when he is hungry without having to set up the pump?
I know it feels like forever but he will get through it!
04-11-2012, 06:06 PM   #12
izzi'smom
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Izz was allowed to eat while doing EN (The goal was to curb her weight loss, which worked) but her symptoms were so much better when she *didn't* eat (Her dad was offering her meals and I was eating on the sly and giving her feedings...the difference was marked).
04-11-2012, 06:15 PM   #13
Mom2oneboy
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Our doc said hard candy, gum, and water only. Ya know, he is also still on pred which doesn't help with the hunger issues either....just thought of that. Btw, we go to 20mg of pred tomorrow. Where are y'all at now?

I've had the pump going since S got home from school. Hopefully, this will help the hunger issue right before bedtime. It just didn't feel right sending my kid to bed hungry last night!

40lbs in 4 months....wowzers!! That is amazing!! I weighed S a couple of days ago and he is up a pound. We were trading high-fives around here like someone won the lotto .

V seems to be the only one who was allowed to eat while on formula.
The Saint said food would make no difference at all to the efficacy. He didn't use it for a "bowel rest" feature, and he said the anticytokinergic effect and the nutritional benefit wouldn't be affected by eating. She was encouraged to eat any and everything and she eventually did.

Now, her disease being in just the TI and having NO colonic involvement may be why. The Saint is known here and abroad for his advocacy of EN/nutrition in general and expertise (a lab guy told me he is consulted by docs worldwide and travels and lectures galore) so I believe him. He also sent V's case to Ernest Seidman, in Canada, head of an international IBD research team, to review as she is atypical and her response to EN was "one of the most rapid and dramatic" he'd seen in his practice.

ALL that to say, maybe it'd be ok if these kids on formula ate. I'd ask their docs just to see what they say.

Now V was hooked up 24/7 for 30 days, not on/off at the start like S and others are. She carried formula/pump in a backpack etc. She got 3000 cals/ day. This may account for her "dramatic" response (gained 40lb in 4mo) and perhaps these kids just need more formula?

She had awful delayed gastric emptying at dx and when hooked up, motility would correct and she'd get hungry. These poor kiddos probably are having their motility correct and therefore are feeling hungry.

God, I hope it works for all of them like it did for V... I just cannot stand to hear of them suffering with hunger after I watched V starve for months *sob*
04-11-2012, 07:09 PM   #14
Tesscorm
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Shelley - poor kid, I'm sure the pred is adding to his hunger! Everyone worries about the tube but, really, the hardest part is the not eating. Hopefully, as he tapers down the pred, it will help alleviate some of the hunger. But I'm glad you're beginning to see some weight gain!

Twiggy - Stephen was exactly the same re the broth... never really liked it before but loved it during the exclusive EN period! Even now, will sometimes ask for a cup of broth before bed! I now always keep some in the cupboard! And, I think you're right re the savoury flavour - Stephen got sick of the 'sweet' candy, freezies, popsicles. I wish your son was feeling better by now...

Julie - Great news about Violet!!! She must be so happy to be able to get out with friends!
04-11-2012, 07:12 PM   #15
imaboveitall
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Shelley, V was down 19lbs at dx, from 78 to 59lbs. *PTSD alert* (me, not her).
So her tremendous gain included almost 20lbs re-gain of a severe loss. She was cachectic, had muscle mass loss, at dx.
She also had grown from 55 to 57.5in at the 4mo mark to go with the 40lbs.

Current: 63.5in 138lbs.

The Saint said he likes to keep them on 24hrs for the first 30 days but most do not do it. We did and that may be why her response was so stellar.

As a veteran of almost four years now of formula feeds, I'd say give him more time on the pump. I think he could benefit from it.

Re: pred, she's been off for five days now, just did a dose pack. So far still feels great. Can't wait to see the next LF and to start naltrexone.
04-11-2012, 08:02 PM   #16
Twiggy930
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The pred definitely doesn't help with the hunger. Must be awful to have the pred munchies and not be able to eat!!! My son's munchies are much diminished which is a relief because for a while there he was pounding back the bottles of Boost like there was no tomorrow, started to worry that the weight gain would go too far the other way. The weight seems to be leveling off at the appropriate amount all by itself. He went down to 15 mg of pred today, we cheered! I can't wait till he is off it, his poor cheeks are HUGE.

Still no good answers as to why his leg is so bad. We had a X-ray that came back normal. I strongly suspect the it was either caused by pred or, at the very least, pred is making it hard for whatever injury is present to heal. We go to a physiotherapist tomorrow, very curious to see what they have to say about it. We are supposed to be getting an appointment with a pediatric orthopedic surgeon but I'm still waiting for the call to book the appointment. It is just so crappy that he can't run around and play with his friends. Got him some crutches on the weekend and he told me today that they were good because he could at least keep of with his friends while they walked and talked at recess. Where's my magic wand to make this go away!!!

BTW we play a game when we hook him up telling him what is coming through the tube. The other night it was fish and chips with apple pie for desert. I think this game would be torture but he totally digs it.

Oh, and I've also started calling him "my little foie gras".
04-11-2012, 08:17 PM   #17
imaboveitall
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OMG...foie gras...if anyone on here doesn't know why that applies I don't have the heart to tell them... That is dark humor for sure...right up our alley in this household...

Recall V had the same sounding leg thing! So weird, came from nowhere with no precipitating event, and lasted weeks, she needed a cane for awhile. Resolved on its own and no explanation.

re: pred and how freaking weird V is, while on it her HUGE appetite went DOWN, and she woke later (9 not 6) than usual. WTH?
04-11-2012, 08:30 PM   #18
jessicawalker
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Hi, I am 15 and have crohns disease and iv been on a all liquid diet at one point and a no food or water diet I was on tpn for 2 weeks I think, I know its hard now and I cannot even imagine what its like for a parent to watch their child hooked up to a iv thing, my dad had to do everything for me, hook me up at night clean my tube comming out of my stomach and everything, but I promise that it just makes us stronger in the end and it will pass Hope I helped even a little(:
04-12-2012, 01:37 AM   #19
izzi'smom
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am glad s gained...hoping the hunger stays away. The Pred must be making it difficult, though!
@J, Izz didn't have trouble sleeping either, although her appetite did increase. Their weight loss was similar, although Izz's was just before we started EN...63# (at least...) down to 48, I think. For this I appreciate EN, as it kept us from hospitalizing her. Posted on another thread re:Pred...glad to hear she is off it and hope her symptoms continue to stay away!
04-12-2012, 06:02 AM   #20
DustyKat
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Awww Shelley......although my kids have never done EN for any length of time they have both been on NBM for days and days and days on end...and doesn't just break a parent's heart when their child is hungry and they aren't allowed to consume food!

Dusty. xxx
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04-12-2012, 07:17 AM   #21
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So sorry Shelley... It sucks to see our kids go through the yuck...

Alex has no experience with EN - my doctor had brought it up at one point, but he was well enough that we opted to wait 3 months to see what happened, then never came back to it - though it has come to mind on many occassions.

My thoughts and prayers are with you both...

virtual hugs....
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Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
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04-13-2012, 10:01 PM   #22
Tesscorm
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Shelley, Twiggy,

Just wondering how your boys are doing? Hope the adjustment is becoming a bit easier and that they're feeling better...
04-14-2012, 10:27 AM   #23
Mom2oneboy
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Hi Tess,

S had 2 nights of feeling hungry so I upped the feed rate in order to get more formula in him as soon as he gets home from school. We also changed the routine a bit in the evening to keep him away from the tv. Anytime a food commercial came on it bothered him. We now sit outside and watch him shoot hoops which he loves. Usually a neighbor pops over for a chit chat and by the time it's all said and done it's time for him to take a bath and go to bed.

S has lots less belly pain and the bowel movements have become more steady and predictable. He's still passing a lot of blood though . We see the doctor on Tuesday.

Thanks for asking!
04-14-2012, 11:10 AM   #24
imaboveitall
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Excellent. I'm looking forward to hearing weight stats.
V is like a tank...just keeps growing and getting bigger at alarming rates...she was an absolute waif at dx... I formula.
04-14-2012, 11:55 AM   #25
Twiggy930
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My son is still the same, no better but no worse. He tends to wake up with some abdominal pain these days. This is around the time he usually has a BM so perhaps that is the cause. He seems to be getting kind of used to not eating. It isn't bothering him as much, almost like a habit that has been broken. We go for a MRI on Wednesday so I am hoping that illuminates some of what else might be going on. GI said from the outset that she thought the bulk of his disease was in the small intestine as his symptoms didn't match what they saw on the scope.

I also sit here and wait for the azathioprine to kick in. He has been on it for exactly 2 months, one more month to go before we should begin to see some effect. If it doesn't work I'm going to be completely gutted.

His leg is awful. He can't put any weight on it. He can't even lift it up while lying down! We have gone to a physiotherapist and now have some exercises and stretches to do. She did not feel like there was any inflammation in the hip joint which is good. She said that the muscles in the thigh are very tight and there has been significant muscle loss due to inactivity from it hurting. No clue as to what initially happened. It is just so disheartening because now when he has some brief moments of feeling ok he can't go out and play because his leg doesn't work. It is so frustrating!
04-14-2012, 12:36 PM   #26
imaboveitall
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Twiggy, you must love stabbing too as I do; here's a bashing one I just found

If your fella's disease is mostly in small bowel (as V's is) the formula should help. It works best on those w/small bowel involvement. How annoying that he isn't dramatically better. I went through that frustration w/V re: Humira, waiting for the dramatic improvement that didn't come until we added pred.

When V had a similar leg thing a few weeks ago Dusty mentioned a psoas abscess that her boy had that caused similar symptoms, maybe hit her up and see if it applies.
V too was/is in PT and her therapist couldn't find any cause for her knee buckling/inability to bear weight either. No inflammation was found either, and her appt w/The Guru fell during this time and he saw no actual prob w/the joint, yet she could NOT bear weight for weeks.
It was very odd; I hate odd.
04-14-2012, 02:50 PM   #27
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Twiggy,

How long has your guy been on pred? I know you are tapering...what mg are you at right now?

I hope you get a clearer picture of what's going on inside with the MRI on Wednesday! Will they put S to sleep for that or will he be awake? I'm curious because we will be having one eventually too.

I wish we lived closer to one another. We could hook our guys up for feeding, place them in front of the Xbox and they would be good to go!
04-14-2012, 03:20 PM   #28
Tesscorm
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I'm sorry your boys aren't feeling dramatically better but, at least, it seems some improvement is noticeable. Stephen never had any 'real' blood so I don't have any experience in how soon that might disappear. During the six weeks, he did have some random mucus with small specks of blood but it eventually just stopped. If it's of any significance, nurse did tell us that healing happens from the top down and that healing of the intestinal system does take some time...

Stephen did have some pain to right side of his belly button during the initial six weeks but mainly when he did some physical 'bouncing' i.e. hockey was fine but the long distance running in phys.ed. caused pain (stupid teacher, knowing about his EN and crohns, still told him 'no pain, no gain'! ) But this eventually went away by the end of the six week period.

Re the MRI - take along the NG tube (if he's removed it). If he can't tolerate the prep drink, he can ingest it through the tube.

Glad the boys are beginning to adjust to the 'no food' - really makes you realize how tough these kids are! Hope some positive news comes from your apptmts and MRI.
04-14-2012, 04:47 PM   #29
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Hey Twiggy,

Re the leg issue. Is it the right leg?

If so this is what happened with Matt. He has terminal ileum CD and not long after diagnosis the pain he complained of was around the navel and extending down over the right lower quadrant, he described it as tightness and burning. During this time he developed a limp, some times I could see it, other times not but as time went on it became more noticeable and more frequent. Matt's culminated with him barely being able to weight bear at all. At this point the pain also escalated and resulted in him being admitted to hospital. The first admission did not result in them finding the abscess but they suspected it, treatment resolved the pain and limping problem. Twelve days later he was admitted again with the same symptoms, different hospital. They suspected the same thing but also couldn't find an abscess. Similar treatment again but he was scanned after the inflammation had subsided somewhat, about 5 days, and they then found what they were looking for, a psoas abscess.

Does any of this sound familiar?

Oh, and his WCC and inflammatory markers were not too bad on each occasion until the pain escalated and we took him to the ER, then they were through the roof BUT both times he was afebrile on admission.

Dusty. xxx
04-14-2012, 10:35 PM   #30
Twiggy930
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Dusty - It is my son's left leg that is sore. I am confused about the significance of the side of the pain presentation, right versus left, as there is a psoas muscle on each side. Hmmm... Is this type of abscess something that would be picked up on an MRI?

Shelley - My son is now on 15 mg of prednisone. He started at 40 mg on February 4th. He was on the full dose for about 5 weeks and now we taper by 5 mg per week. 2 1/2 weeks to go and then he is DONE! I can't wait!!!
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