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06-11-2012, 04:33 AM   #271
DustyKat
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Sarah use to complain of knee pain. It wasn't there all the time, more of a come and go thing. I put it down to "growing pains"! Ha, how wrong was I!

Dusty. xxx
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06-11-2012, 06:16 AM   #272
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I know this is probably totally unrelated, but Gracie's had a really sore belly button -- it is red and swollen under the belly button and seems very painful for her. She's woken up the past two nights. I just thought since you all seem medically knowledgable maybe you'd know what it is?
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06-11-2012, 06:29 AM   #273
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With it being red and swollen infection springs to mind. Is there any smell or discharge?

Dusty. xxx
06-11-2012, 06:52 AM   #274
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Dusty -- there isn't any smell or discharge at this point. I thought infection, too...like maybe a mix of dirt and sunscreen and chlorine or whatever from the pool? But, it is REALLY bothering her? I'll see how it looks this morning and might need to take her in? Hmmm...
06-11-2012, 07:04 AM   #275
DustyKat
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If it is no better I would have it seen to particularly as it is bothering her. It could be either a fungal or bacterial infection but either way they should be able to give you something to clear it up.

Good luck and let us know how you get on.

Dusty.
06-11-2012, 07:10 AM   #276
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Thanks! I think I will call later this morning and see if the nurse thinks there is something over-the-counter that will work or if they need to see her?
06-15-2012, 11:47 AM   #277
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I won't make this long, but my 9 year old son has had "issues" since he was a baby. Nothing serious, nothing to point directly to IBD, but having it myself I watch things closer.

Past couple of years we've had a few episodes of tummy issues, he never says it is his stomach, it's always his waist. He says the pain is like someone stabbing him in the waist (he always points to his belly button area).

He goes to the bathroom frequently, I know that he has bouts of diarrhea but he won't discuss his bathroom habits with me. I have even heard him whimpering or almost crying through the door but when I ask if he's okay he always says he's fine. I've asked him about blood but he says he's never had any.

A few days ago he had a really bad bathroom experience, he actually called me in there. He was bent over on the toilet, crying and shaking, sweating and in so much pain I felt like going crazy. I gave him a cold washcloth, some tylenol and hated that there wasn't anything else I could do. He laid down on his bed in the fetal position just crying until he felt sick. He threw up, a lot but the stomach pain stayed for at least another 45 minutes.

After it was all over, he told me he was fine, he didn't need to go to the doctor. I know that he is deathly afraid of shots, needles, and anything to do with the hospital, partly because of my experiences and a few (non tummy related) of his own.

I don't want to be a crazy mom, demanding all sorts of tests because I have Crohn's but I am really getting concerned. His "issues" seem to be following the same sort of pattern that my disease did, small flares I hid during childhood, up to when it got out of control in middle school when I was being bullied and under a lot of stress for a little girl.

Should I just visit with the pediatrician, explain everything and ask for bloodwork? I feel like a really bad mom, I haven't had current bloods on him in several years because of the needle anxiety.

Does anyone understand? I really really don't want my son to be sick. But I will die inside if he is having issues and I'm standing by doing nothing because I want it to be nothing. I feel like I am driving myself crazy. I know it isn't my fault, but I can handle having Crohn's. I don't think I could watch my son go through even half of what I've been through. I don't know how you amazing parents do it.

Help!
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06-15-2012, 12:21 PM   #278
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SarahAnne,
I do have some experience with this type of situation. If you read an earlier post by me on this thread (#93), you will read that my son had some problems at the same age and that he was also needle phobic.

I was not forceful enough earlier on in getting the diagnosis and treatment that he needed because medical friends and family kept saying, "oh he's fine, just skinny...eats cake at our house, etc." He would also soon forget the pain and symptoms as soon as an episode passed. When asked at the doctors if he had any pain he would reply, "No", even though he was writhing in pain on the couch the whole day before!

We used an Emla creme and some Ativan to finally get some blood results that would support how ill he was. I am sure glad that we did. That is what finally got us the help.

I sure hope that your child does not have a chronic illness, but I would encourage you to get the investigations done that you think that he needs. You and he have every right to have the medical staff prove to you that it is not an IBD, and then, if it is not, for them to help figure out how to help him.

Although my son has been healthy since that time and plays lots of sports, he is still very thin and I watch him like a hawk if he complains of any 'tummy' or fatigue issues. I am sure that it is like this for anyone with these types of problems in their family.

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06-15-2012, 01:11 PM   #279
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happy ~ Thanks for the reassuring words. My son does not fit the "typical" (haha, I know right) look for a child with IBD. He is a little shorter than average, as I am and his father is. He is also built like his natural father, kind of stocky. He definitely isn't thin, he's not fat either.

I wondered about the blood work. I asked my mom (used to be an RN before she had to stop working b/c of her fibro), and she said that they probably wouldn't give him anything to calm him, but they might use lidocaine to numb the area. I'm convinced he will have a panic attack if he even sees a needle.

He has a pretty decent appetite, but he is also very picky and funny about food. He eats pizza, but he doesn't care much for the sauce or spaghetti sauce as it "burns" his mouth. He drinks a LOT of milk. He would probably down a gallon a day if I didn't set restrictions on it.

Thanks again. I'm going to set up an appointment with the pediatrician. We only have one pediatric gastro in my town, he is very hard to get an appointment with but I imagine the peds office could arrange it if it is necessary later. We saw him once in emergency a few years back when my son swallowed a quarter and we had to have the damn stuck thing removed by endoscopy. I am desperately hoping that this is all nothing. I am trying to forget all of the random, small things that happened when he was a baby that I keep trying to make connections to my Crohn's.

I feel like my mind is in a whirlwind. I guess it doesn't help that this is all happening as am I just starting a small course of prednisone. When it rains it pours.
06-15-2012, 01:21 PM   #280
happy
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SarahAnne, It is natural that you are concerned and a bit anxious. I can also tell you from my own experience that the anxiety about it only makes it worse and makes the doctors focus on you and your anxiety (ie. worried mom about non-sick child) rather than on the possibility that your child may in fact be ill. So take some time to think about the worst "what if" scenerios and then calm yourself and be matter-of-fact with the medical people. They will take you more seriously this way and you will save your energy rather than spending it on the worrying. I know that this is not easy to do.
06-15-2012, 01:54 PM   #281
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Hi SarahAnne,
Welcome to the forum.
My little Farm girl Grace is three and were going through the process of her being diagnosed. Her symptoms go all the way back to 6mo. old. We've been dealing with her pains for a long time. I know what you mean about not waiting to seem crazy about what their going through. For years I listen to my doc and others tell me their hopefully grow out of it. Believe me I had hoped they were right. Sadly her symptoms got worse and more numerous till I had enough. Imagen trying to tell a three year old why she's getting poke with a needle by a stranger. So far she's taken it like a trooper. Last time she didn't even cry. I was proud. I wanted to cry but I didn't. I'm with you son I dislike needles.
You know whats normal for you son. You know more than most about the dangers of untreated crohn's. You know what your young man needs. If he is or gets to the place that you and or he has has enough you'll now it. However their is a stool sample test that can be preformed to measure inflammation. That's easy enough. No needles.
I do hope he gets well. You found the right place. Plenty of parents here have been in you place. Welcome again to the forum.
Farmwife
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06-15-2012, 01:57 PM   #282
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SarahAnne - I really feel for you and know what it is like constantly worrying about your child and not knowing what to do - My now nearly 2 year old has had chronic vomiting and diarrhoea since a few months after starting solid food, he has had periods of weight loss followed by gain and because of this the Drs were unwilling to do much, even when he developed iron deficiency anaemia, mouth ulcers, blood in faeces and bleeding round his bottom. I worried like you that it may be something serious but also I didnt want to put him through lots of tests if he didnt need it.
In the end he had all the tests including endoscopy and colonoscopy - I cant pretend it wasnt awful - it was - all the tests came back ok - and I thought I would feel bad for putting him through it all - but I am glad I did it as now we know it is nouthing too serious we can concentrate on getting him better and on with the rest of our lives. If all the tests had come back possitive it would have been terrible but at least he would be in a better position to get the treatment that he might need.
I feel I am rambling now!!!! - I just wanted to say I know how you feel - good luck - I will be thinking of you and your boy xxxx
06-15-2012, 02:04 PM   #283
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SarahAnne: I definitely feel for you. I can't imagine what it must be like watching your child and suspecting he has IBD when you yourself know first hand the pain and suffering involved. You are 100% right in bringing him in and having him looled at and tested. Even if it isn't IBD it is something and the poor thing should get relief. Farmwife had an excellant suggestion with the stool testing. Maybe just do that first although I am sure the ped will want to do a whole panel.

I am sorry you and your son are having to deal with this. Excellant advice from Happy also. Good luck and keep us posted!
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06-15-2012, 05:15 PM   #284
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SarahAnne, my son and husband both have Crohn's and it is really amazing to me they are in the same location, have the same symptoms during attacks. While it is certainly hard to have a child with Crohn's you want to fix it but you can't. I think for my son who has certainly seen his father go through some Crohn's related stuff. He was really scared at first (he was dx at 10y.o.) but really looked to his father as a role model and how he handled things. Now when he is not feeling well, he knows he has someone really close who understands.
We were of course terrified of him having Crohn's before his diagnosis but at the same time there was not a lot of the waiting and ruling out various other things before diagnosing him. Once I explained his symptoms to the doctor, tummy pains, bowel movement issues, tired, weight loss. They tested him first for Crohns. I would say at the time he was terrified and hated needles and the first blood draw was awful I hate to say as he was so dehydrated and upset. I think he just about squeezed my hand off. It has certainly gotten easier especially after that first year where they were doing blood work every 4-6 weeks.
I'm kinda rambling here so I will get to the point I was trying to make... The sooner you get him tested the sooner they can figure out what is going on and make him feel better. I'm sorry you are going through this and wish no one had to.
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currently none due to liver issues
06-16-2012, 05:08 AM   #285
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Hey SarahAnne,

I wholeheartedly agree with all that has been said above.

When Matt showed one week of very, very mild symptoms I was in two minds about taking him to the doctor. I thought I was having the biggest over reaction of the century but there was something niggling at the back of my mind and I can honestly say I didn't even have Crohn's on my mind, or did I??
Anyway i saw his GP and asked if he could do a request for bloods including ESR and CRP. His CRP was raised and within two weeks he had his diagnosis.

To say my head was spinning would be an understatement! After the dust had settled I thought about how all this had come about and I think I did what I did out of fear. The fear of him going undiagnosed like Sarah was obviously playing on my mind so much that I feared not knowing more than I did hearing my fears confirmed. I think you may be at this point too hun...

I really really don't want my son to be sick. But I will die inside if he is having issues and I'm standing by doing nothing because I want it to be nothing.
...that says it all. God knows it is heartbreaking enough to hear the words Crohn's Disease but the guilt of doing nothing will leave a scar that never heals.

My son has always hated needles and anything to do with doctors, hospitals, anything! It sounds bloody awful when I write it down or say it out loud but after Sarah was diagnosed and seeing all she went through I use to sometimes think to myself...if one of children had to have this awful disease then thank goodness it's Sarah because she can handle it. Well then it was Matt's turn and he stepped up to the plate in a way I never thought possible. Boy did I underestimate him!

I hope more than anything that your boy doesn't have IBD but if he does won't he have the best darn advocate he possibly can with such a wise, caring and understanding Mum in his corner.

Dusty.
06-18-2012, 07:08 AM   #286
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ARRRRRRRRRRRRRRRRRRRGGGGGGGGGGGGGGGGGGGGGGGG
Sorry just had to get that out!!
I think most of you know Freddy's story so I won't repeat it!
After last Monday's fantastic GI appointment I have been on a high, Freddy was eating really well, pain getting less, poo bright orange and slimey but less frequent - and not as diarrhoea like as normal - YAY!
Now we are bareley eating at all - back to throwing food on the floor as if angry with it, (or alternatively throwing it at the dog as that is apparently more amusing). Being very emotional and clingy - needing mountains of hugs and cuddles. And the diarrhoea is way worse (started after a dark pink\maroon BM). - no vomiting (yet) though so I suppose that's good!!
I just don't know what to do I know he is not seriously ill but he is obviously not normal - I hate the thought that he is in discomfort and pain - I just want him to be better and be able to lead a normal life
There rant over!!
Sorry everyone!!
06-18-2012, 07:39 AM   #287
crohnsinct
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Suzy: Sorry but I think throwing food at the dog is pretty funny too

Is he still on the senna? Maybe now that you got him regular the senna needs to be decreased and that is why the D? Dark pink/marron? That sounds like it could be blood BUT Freddy has always pooped the colors of the rainbow so might be nothing. Maybe give the GI a ring to see what to do about the senna.

I really hope his refusing to eat is just his review of your cooking.
06-18-2012, 07:59 AM   #288
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I will have you know that I have made 2 batches of honey fairy cakes and they have all been gobbled up! (although not by Freddy) and my first 'breadmaker' loaf of bread is just in the breadmaker now (ok so I suppose that doesn't really count as me cooking it).
The dog enjoys having food thrown at her - at least she appreciates my cooking!! (although she does also seem to enjoy licking vomit up off the floor as well so I'm not sure we can really base much on her sense of taste!).
I wondered about blood too but as you say he does seem to produce multicouloured stools!! - good point about the senna having done its job! the GI said it should take a couple of weeks so maybe I will wait it out for the next week (unless he gets worse) and then reassess the situation. The only thing that is bothering me slightly is if the senna has done its job why is he starting to be clingy and emotional again - I suppose it could just be that he is feeling out of sorts or that the senna is causing a bit of discomfort.

Who knows!!

Thanks
06-18-2012, 08:02 AM   #289
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What's wrong with YOU Crohnsinct!!!!
You kick poor Suzysu why she down!!!
And what if her food is so bad that it could make every living soul sick.
She would feel bad.
Now don't you feel horrible!!!!


Sorry Suzysu you really do deserve better friends then the two of us.


Farmwife
06-18-2012, 08:07 AM   #290
Suzysu
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I'm just glad I am able to provide a constant source of amusement for the two of you!!
How is Grace today? Hope she is doing alright
06-18-2012, 09:46 AM   #291
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Don't you worry Suzy, my kids (Crohn's aside) have grown up just fine with my cooking and yours will too!

For all we know, Crohnsinct and Farmwife are all talk! After all, we haven't actually seen or tasted their cooking... hmmm!

But, I hope Freddy's feeling better soon and that it is just his body adjusting to the Senna
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06-18-2012, 10:04 AM   #292
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You know I was thinking that exact same thing....
Crohnsinct is all talk.



Farmwife
06-18-2012, 10:32 AM   #293
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the gig is up

I will have you know I baked homemade honey wheat bread last night...so BAM! Even though I have been reading about the terrors of wheat...so basically I am poisoning my family. I can't win for losing.

Better stop picking on me or I will have all 100 of those kids I am feeding next week post reviews to this site after every meal!
06-18-2012, 10:40 AM   #294
crohnsinct
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Would love to stay online and quip back and forth with you ah hem ladies but I have to go make 20 candy leis for my little one's end of the year party. I may not impress in the kitchen but when it comes to crafts look out...you do know Martha Stewart came from CT...where do you think she gets all her ideas?
06-19-2012, 08:38 AM   #295
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The GI nurse just called, Freddy had a high potassium level and because his phosphorus level was high at the previous sample (oh but at this sample they didn't think to re-test it!!!!) he has to go back in to have a whole load more blood tests next week. My very helpful MIL has been saying all along that all his problems are to do with how many bananas he eats - and now she says his high potassium is down to this too (I know bananas are high in potassium) It would bre REALLY annoying if she were right!! - Does anyone know how many bananas is too many for a 2 year old?? - he really does love them and sometimes it is all I can get him to eat.
Sorry to be moaning yet again - I know most of you have far greater worries than me.
06-19-2012, 11:04 AM   #296
Tesscorm
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Sorry Suzy, have no idea re the bananas But, how many does he eat? I would think it would be difficult to truly eat TOO many bananas???

(On the off chance that it is the bananas... OMG, don't tell your MIL!! )

06-19-2012, 12:57 PM   #297
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Really not sure if I am doing the right thing here, but Amy's GI has offered to do a colonoscopy/Endoscopy, although he is totally convinced she has IBS. At the time I agreed to it, because I am really hoping that he finds something to explain this constant tummy pain that is instantly fixable. I really don't want it to be Crohn's but I also don't want it to be ibs as what I've read on it so far, it can be miserable with no pain relievers or much of anything can be done for it. Anyway Amy doesn't want to do it as she still remembers the last one, plus it can't be done until the first week of school in September Meanwhile she just keeps getting worse. Still barely eating,tired a lot,backache,dizziness and headache.Does anybody elses child have these symptoms? As I have said before, so far all blood tests and ultrasound have come back completely normal so I am second guessing myself on whether to go ahead with the scopes.
06-19-2012, 01:29 PM   #298
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Hi Poppet's mum

I really am no expert but given her previous history of a bowel abcess, and her current signs i guess further tests are needed - I don't know her medical history but maybe she has scarring, adhesions or a stricture from the previous abcess? - Im sure your GI knows best but maybe ask if a MRI would tell more? I don't think a scope can visualise the whole intestine so maybe they missed the inflammed bit last time - maybe she needs a pill cam? If you just go with the IBS dx would you totally accept it? or everytime she got worse would a tiny part of you be questioning the diagnosis? I don't think there is an easy answer and I know how hard it is to watch your child struggle, and in the same way how difficult it is to put them through any kind of medical procedure. Thinking of you loads
06-19-2012, 01:29 PM   #299
Tesscorm
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Hi poppets mom

I would go ahead with the scopes. My son's symptoms included weight loss, loss of appetite, tiredness, fever, pale, backaches, night sweats, canker sores and diarrhea. The symptoms weren't constant, they would come and go, sometimes all would be present, sometimes just a few... His GP ran a number of tests (now, I'm not sure all of what she was ruling out - hepatitis, mono, parasites, etc.) and all came back normal (except iron levels). Even our first trip to emergency, with more tests and ultrasounds, all came back normal (or just 'minor' indications of inflammation). When we finally took him to our children's hospital's emergency, he was admitted and by that time his CRP and sed rate were elevated (not sure if his GP ever checked these???). However, there are many members/children who's inflammation markers (CRP, Sed Rate) are normal even while the inflammation is active.

Do not give her nsaids (i.e. ibuprofen, etc.) for her backaches as they will aggravate intestinal inflammation (my son has been told Tylenol only and he uses Tiger Balm ointment to help his backache).

You can also ask her GI re Enternal Nutrition (EN) - regardless of IBD or IBS, EN for a time period may help alleviate some of her symptoms as it is very easily digested, provides bowel rest, is anti-inflammatory, will provide her with her necessary nutrition and has absolutely no side effects (and, if it is Crohns and dependent on location, has a comparable success rate at inducing remission as steroids). However, compliancy is a bit difficult as the usual course of treatment is approx. 6 weeks with formula only (no food). But, in Amy's case, as you do not have a diagnosis yet, perhaps just a week or two will just help to alleviate symptoms.

I'm sorry she's struggling now and, as a parent, it's so heartbreaking to see them suffering and not be able to help! I hope some of this info is helpful...

Good luck!
06-19-2012, 02:26 PM   #300
crohnsinct
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Suzy: Too many bananas? Is there such a thing? You are lucky your MIL is pointing to the bananas and not your cooking and I am not kidding here my MIL is convinced my cooking poisoned her son and gave him type 2 diabetes because he didn't have it when she cooked for him...um he left your house at 21!

Poppet: I don't have much to add but just so you have a full committee vote I vote scopes. But that is me...I wouldn't rest until I knew something for sure..either she has IBD or not and then we could move on. Of I didn't have them do it, I would always wonder.
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