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05-29-2012, 08:47 AM   #241
Tesscorm
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Good luck Tracy!

Have you noticed that he's eating less? I'm wondering if he's having pain while eating or avoiding a 'larger' meal to avoid pain - could be contributing to the weight loss (especially, as you said, it seems be after he stopped the gluten free diet).

I hope you get some answers after the June testing.
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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
05-29-2012, 10:57 AM   #242
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Hi ladies! We are undiagnosed, too! I am not sure I want a diagnosis, but I'd sure love to know what is going on!? Our main symptoms are constipation and diarrhea, and tummy aches all the time! She also has reflux and food allergies, and overactive bladder that worsens with constipation. Her scope showed inflammation of the ileum and right colon but the GI doc doesn't think it is Crohn's -- or IBD at all? Does anyone have any ideas on what it could be besides IBD? They say it isn't Celiac or EoE -- they don't know what it is?? She's now taking Sulfasalaine on top of everything else. She's not getting better -- she might be getting worse. Anyone??
05-29-2012, 11:01 AM   #243
Crohn's Mom
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HI Mom,

Has Gracie had any other tests done besides the colonoscopy/upper endoscopy?
Like a Barium xray, CT scan, MRI (MRE), etc?
I wouldn't just accept a diagnosis of HPylori with out further testing, especially since there's inflammation involved.
I think I have asked before but not sure, ~ was the inflammation chronic or acute ?

When she starts to show signs of being impacted do you go to a liquid diet for a day or two to see if that helps any?
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05-29-2012, 11:05 AM   #244
Momto2girls
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Hi Crohn's Mom! Let's see -- she has not had ANY of those tests!?!?! What types of things would those help with?? She's had several x-rays to look for constipation -- and that's how we've been able to see the impactions. She's had bloodwork and we've done stool cultures -- so no (other) infections were found.

I've not ever been advised to do a liquid diet for a day or two!? But, I'd love to hear more about that as I'd love to do something to help avoid another "clean out" -- what do you suggest?

The other thing Gracie has is extreme thirst. She's SO thirst ALL of the time but it gets even worse when she's really feeling badly. Don't know what that could be? And random joint pain here and there??

ETA: the inflammation was acute in the ileum and it was cryptitis in the left colon (didn't say acute or chronic) -- the pathology mentioned neutrophils (ot something like that).
05-29-2012, 03:55 PM   #245
Crohn's Mom
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Well the colonoscopy can only see part of the small intestines, so there's plenty more bowel left that needs to be examined to be sure that she does not have Crohn's. These other tests would help to visualize the remaining bowel and look for other things such as scar tissue, strictures, ulcers, etc.

A liquid diet would just be similar to a "clean out" for a colonoscopy; minus the dreaded prep. In essence it would help her bowels to rest for a few days without adding any addition solid foods that have no where to go for the moment, and hopefully allowing her to empty more and reducing the pain. Tesscorm knows a lot about EN (enteral nutrition) and could probably recommend some good supplement drinks so that Gracie is still getting some nutrition while not "eating"; such as Boost drinks or Ensure. Hopefully she can jump in here and help recommend something to try It does help Gab to do liquids for a bit when she feels "impacted".

I don't really know what to say about the extreme thirst?? Someone help me out here

The random joint pain could be an EIM of IBD if she does indeed have Crohn's. There is a subform for EIM's here (extra intestinal manifestations ) so maybe have a look around there as well.

Acute inflammation means that it has basically been a recent thing in her body. Which, could be a "good" thing because it's not "chronic" so hopefully it won't become that way and maybe it really is HPylori causing the problems from a recent infection ? (we can dream right ? )

Tess : Yes, JJ is eating very little lately. I do believe it is because of a somewhat unconscious fear of pain when he does eat He claims to be hungry, very hungry, and then barely eats. Poor kiddo should be eating me out of house and home at 14 years old; instead he's eating maybe the equivalent of a sandwich a day.
05-29-2012, 04:50 PM   #246
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Momto2girls,
My Gracie has joint pain in her r. knee and lately her left also. She also get's weakness on the right side of her leg. The pain is increasing so I will be giving Tylenol to help. She can go days or weeks without a problem. Not lately though. My doc asked me about if she was thirsty and I said YES. He made sure kidneys were working.
Overwhelming thirst can be a sign of kidney issues.
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05-30-2012, 09:16 AM   #247
Tesscorm
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Momto2girls,

EN is certainly something worth looking into! As a treatment for Crohns, it can be as successful as steroids at inducing remission, has NO side effects, has anti-inflammatory properties and provides nutrition in an easily digested formula (allowed bowel rest). It usually requires that the formula replace all foods for a period of time (six weeks for my son) and then regular food is gradually reintroduced. For some reason (perhaps cost and/or patient compliancy), it is not as commonly used in the U.S. as it is elsewhere; in Canada, Europe, etc. it is often the first treatment option for children. However, as I said, it is not easy to eliminate all food for that long a period and, my understanding is that, it is most successful at achieving remission if the Crohns is located in the small intestine.

However, even if used NOT as the sole treatment, it can still help in alleviating symptoms through the bowel rest and provide nutrition. There are a number of formulas available - Modulen, Peptamin, Vivonex (or a similar name???), Boost and Ensure - at least some, if not all, are available without a prescription (although a prescription may help get insurance coverage??). I don't believe that the Boost and Ensure have the exact same formulation as the others (something to with how certain components are broken down???) but some GIs do use these shakes for EN, they are easily available and may taste better (allowing better compliancy).

Look through the Enteral Nutrition subforum under Treatment, there are lots of threads in this forum re En, in particular, one thread was started called Kids on EN (this subforum) which will provide you with more info.

Good luck!


Farmwife - Twiggy930 's son was also having leg pain - I'm not sure if they've determined the cause or treatment but, if she sees this, she may be able to offer some suggestions...


Tracy - maybe JJ could try the shakes as well??? Even before Stephen was sick, I sometimes gave my kids the Carnation breakfast shakes (with their breakfast). They used to find them a bit 'thick' (and probably too filling with food), so I used to split one shake between the two of them and dilute it with milk... They assumed it was a 'treat' having chocolate milk for breakfast


05-30-2012, 12:47 PM   #248
crohnsinct
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YUM! Carnation Instant Breakfast - Love those!

O was also VERY thirsty prior to dx. Doc said it was because she was dehydrated. Something to do with the inflammation and not absorbing enough fluids? I thought it was just from the diarrhea but he said also not absorbing.
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Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
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05-31-2012, 07:57 PM   #249
Momto2girls
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Thanks for the AWESOME info...especially about EN -- I figured it was some fancy by prescription only thing! But that's great you can just get it and try it!

Crohn'sMom -- It is interesting b/c Gracie will almost self-regulate to a liquid diet I've noticed -- when she's not feeling well she only wants noodle soup!

Crohnsinct -- Crazy that your daughter was super thirsty as well! OMG, she is always wanting another drink! Which they say constipated kids don't drink enough but that is for sure not the case here.

So Gracie had an xray and she's not constipated or impacted -- yay! But, she had blood in her last two stools. What does that mean!?!!?
06-02-2012, 12:17 PM   #250
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Hey there. Sorry I'm so late getting to this. I have gone back to work

My son has had leg pain for about 3 months now. The pain is in the front of his upper thigh in his left leg. It is so bad he has been unable to bear weight on it for 3 months and has been getting around on crutches. We have had an x-ray of it and gone to a pediatric orthopedic surgeon. They didn't find anything wrong with the bone. The GI thinks it is probably Crohn's related and the physio thinks the origin of the pain is the sacroiliac joint in the hip. We have been referred to a pediatric rheumatologist but the appointment (earliest available) is in OCTOBER!!! We have been going to a physiotherapist and doing the exercises they have recommended and have been trying to do some swimming as a way of exercising the leg without too much weight bearing. Unfortunately the last time we went he accidentially kicked the wall of the pool and broke his foot!!! I wish I had more advice about the leg pain. It is one of our biggest problems right now and no one seems to have any solutions.
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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.
06-02-2012, 07:37 PM   #251
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Thanks for the reply Twiggy930
I'm starting to get worried about Grace. When her knee/leg starts to hurt. She can't hardly walk. Her dad twice had to carry her out of a store.
Have you or anyone had a problem with EIM flaring up after a BM.
Grace finally had her BM. Her knee and belly started to act up.
I would think she would feel better after not having a BM for 4 days.

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06-02-2012, 07:53 PM   #252
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Twiggy, has your son had a CT scan done to check for an abscess ?
06-02-2012, 10:12 PM   #253
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He has had a MRI and nothing was found.
06-03-2012, 09:02 PM   #254
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Hi everyone. I am new to this forum but it looks like an amazing place to receive advice and support. I think anyone dealing with this is so incredibly brave. Anyway I have a 9 year old daughter Amy who two years ago exactly was admitted to Hospital with an abscess in her small bowel. Luckily it was able to be treated with Antibiotics and 6 weeks of enteral nutrition therapy via NG tube. At the time her GI specialist was convinced she had Crohn's disease. But scopes came back normal (yay) and we went on our merry way. The past two years have been fairly uneventful, just the odd tummy ache.
Well lately she has been dealing with constant tummy pain that was put down to constipation. This is finally clearing up but stomach pain is worse than ever. For some reason it seems to be agony when ever she eats anything, and she is trying not to eat at all. We are 6 weeks dealing with this now and she finds it hard to do most things including bending over, any physical activity and even sleeping. So far she has had an x-ray, ultrasound and various blood tests. The x-ray was the only thing showing the constipation, but the last one showed it to be just about cleared up. She has lost about 6 pounds during this time and is at the point where she screams as soon as the food seems to hit her stomach. Oh and she is always complaining of constant headache, also I was wondering if anyone else had been through anything like this or have any ideas what it could be?
Thanks for listening.
06-03-2012, 09:40 PM   #255
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Time to go back to gi. My daughter dx with crohn's in January, also had a xray showing constipation. Hope its not crohn but it sounds very like Sarah symptoms prior to dx.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
06-04-2012, 04:29 PM   #256
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We are undiagnosed, but my DD battles constipation with impaction as well. We've had 2-3 xrays showing impaction -- up to every 2 weeks. My daughter is 4 and her scope showed inflammation but no damage to dx Crohn's. But, they started her on sulfasalazine and it seems to have helped the constipation some? At least when we had an x-ray last week she was not constipated. But, the next day she had blood in her stool, so who knows what we are dealing with now?
06-05-2012, 08:37 AM   #257
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Poppets mom - It could be that she does, in fact, have Crohns (as her GI initially suspected) and that the antibiotics and EN put her into remission (or close enough to be mainly symptom-free) for the last couple of years and she is now having a flare. I would go back to the GI for tests.

Twiggy - so sorry to hear about your son's foot! As if it weren't enough that his leg is still hurting, now he has to deal with a broken foot. Has the physio helped at all with his leg pain?
06-05-2012, 10:16 AM   #258
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Hi, I agree with Tesscorm.
My 3 yr. old Grace is undiagnosed. About a year ago she went through a 4mo. period of NO symptoms. Ya!!!! We thought she was cured of what had been ailing her since she was 6mo. old. However, it came back worse!
So your DD in could be in a flare up. I've learned here that "normal test" don't always show the truth. Keep PUSHING"


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06-05-2012, 01:37 PM   #259
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Thanks for your replies Catherine,Tesscorm,momto2girls and farmwife. Just heard from the GI clinic, and they can squeeze her in for an appointment tomorrow Really hoping they can come up with something for this poor miserable little girl. I hate it when tests come back normal but you just know something is really wrong. I have the feeling they'll try to give us the catchall IBS diagnonsis.
Farmwife do they plan to run more tests on your little one? I certainly hope so. mom to 2 girls blood in stool isn't always a cause for concern but is definitely worth getting checked out. Apart from constipation is your daughter having other issues? Good luck to anyone dealing with this crap, (haha) I know as a parent how worrying it is.
06-05-2012, 02:36 PM   #260
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Poppets Mum -- You know, we started with tummy issues with Gracie about 1.5 years ago -- she was doubled over in pain -- the very first time I thought it might be her appendix!? Then after a while I started to notice a pattern of the pain with potty accidents, and we had her tested for UTIs -- and she was fine. She had frequency but she her blood sugars were (mostly) fine as well. So we went to urology and then nephrology and found out it was constipation causing her bladder spasms and we sorted that out with miralax, and some dietary restrictions. But, over time it got worse, and now she's more severely constipated even with meds, constant tummy aches, lethargy and D. She wasn't sleeping at all until we started the prevacid which has helped! We have a lot of IBD in our family history and so the GI doc scoped and found inflammation in the ileum and left colon but said it wasn't Crohn's. Also, she has H. Pylori/Gastritis but I am still unclear on how that effects this whole thing.

We go for a follow up tomorrow morning. B/c the bleeding has stopped I think I might opt for no further testing for now and see how she does, but I still want to hear what they have to say.
06-05-2012, 03:13 PM   #261
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SO since we are as of yet undiagnosed, and our follow-up appt is tomorrow -- our first appt since our scope -- what would you all recommend I ask for? I know Dusty mentioned MRI, CT Scan, Ultrasound? Should I re-do her bloodwork from early April? Or is it too soon for anything to have changed? I will be talking to them about switching docs, so maybe some of this stuff can wait for the new doc?

You all have been so helpful! I just want to make sure I ask for the right things when I go in.
06-05-2012, 03:56 PM   #262
crohnsinct
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Momto2girls: since she had inflammation on scope I would want blood drawn again to check inflammation markers...maybe stool tests for inflammation as well. Just a few quick thoughts. Hopefully the experts can chime in here.
06-05-2012, 05:48 PM   #263
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Thanks crohnsinct -- as far as you know, inflammation markers can change over the course of two months? It kind of threw me off when the doc said she was calling in blood tests "even though everything was normal in early April."
06-05-2012, 07:01 PM   #264
crohnsinct
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Hmmm I am no expert in kids as yet undiagnosed but O's numbers changed significantly(docs words not mine...he doesn't readily share numbers..would have to if I asked but I rather like not knowing...just the facts) over 6 weeks while on Remicade so if your daughter had inflammation and maybe has IBD I would guess that inflammation can change. Plus if it goes down that would be comforting to know.

Good Luck!
06-06-2012, 07:08 AM   #265
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I would definitely have the bloods redone. Depending on what is happening they have the capacity to change very quickly either in response to disease/infection and so on or in response to treatment.

Dusty. xxx
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06-06-2012, 11:15 AM   #266
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So we did have bloodwork done and we have the supplies for more stool cultures. So we'll see what they say? We are switching docs and we see our new doc at the end of the month. So whew, at least that is behind us. She said bloodwork would be in today or tomorrow so I'll keep you all posted!
06-06-2012, 11:23 AM   #267
crohnsinct
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Sounds good all around...hope you get a call with results faster than me
06-06-2012, 12:19 PM   #268
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Oh I'm sorry you still haven't heard. I hate that. Grr.

I sure hope I do too. We talked a lot about the problems we've been having with communications and she asked me to tell her manager about it -- they've had several families dissatisfied with it all. So at least I am not the only one!
06-09-2012, 07:34 AM   #269
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I guess I'll post this question here.
Grace had BAD knee pain that woke her up last night.
I was wondering if any of your children have or had knee pain that would come on suddenly, last a couple minutes and then leave for a couple minutes, then come a couple minute, then leave for a couple minute and on and on and on....
It reminds me of her abdominal pains. However it's in her knees no where else.
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06-10-2012, 08:45 AM   #270
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I think Freddy gets a similar pain in his hip - comes and goes - seems bad when he has it (screaming etc). Referred pain maybe? I don't know? Did you mention her joint pain to her GI? maybe you could ask when they phone you tomorrow? Hope she has a better night tonight xx
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