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05-04-2014, 06:22 PM   #31
crohnsinct
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So sorry you are in undiagnosed land. I also have a younger daughter with chronic pain, unexplained vomiting etc and can not even het a GI to look at her even though she has an older sister with Crohns.

IBD is just one of many many GI issues that can present with your son's symptoms. I can not believe a specialist is only looking at Crohns or appendicitis...what about everything else? What about diseases, conditions from other parts of the body that present with abdo pain....does the doc have any suggestions as to other specialists.

WEll bright side is you haven't yet gotten our favorite "IBS" dx:/

When will docs agree that it just isn't normal for kids to be in constant pain?
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Daughter O dx 2/1/12 at age 12
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Daughter T dx 1/2/15 at age 11
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05-04-2014, 06:27 PM   #32
joey123123
 
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Mehita:

Funny... my kid often would go on prednisone for asthma / croup. Wonder if it held Crohns intact? We are all at a loss.. we are all nervous wrecks........I don't expect any discoveries tomorrow. Just more of the same.........

Thanks for your thoughts / response.

Let's hope it's the hernia.
05-05-2014, 09:21 AM   #33
Jmrogers4
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Thinking of you guys today and hope surgery goes well and provides some answers.
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Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
05-05-2014, 09:30 AM   #34
Clash
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I hope the surgery goes well and that you get some firm answers!
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C age 19
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Dx May 2014: JSpA
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05-05-2014, 09:31 AM   #35
Mehita
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Funny... my kid often would go on prednisone for asthma / croup. Wonder if it held Crohns intact?.
How often has he been on pred? I guess that's a possibility... controlling both the asthma and Crohn's. Did you notice gastro symptoms were better during and after pred?
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05-05-2014, 11:06 AM   #36
my little penguin
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Also keep in kind any pred up to 7 or 8 weeks before could make the colonscopy clean and there still be an issue. DS had an allergic reaction which required high dose pred a few weeks later had a clean upper scope.
This was prior to dx .
It really muddied the waters since the Gi didn't know he had been on pred and I didn't know to mention it .
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05-05-2014, 01:55 PM   #37
joey123123
 
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My boy is in the OR. Doc came out and said he has NO hernia....... said his omentum is attached to abdominal wall. Has anyone ever heard of this? He took appendix out...even though it looked normal. Help ...thoughts? Anyone ever hear of this?
05-05-2014, 02:04 PM   #38
Jmrogers4
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Not finding much other then can occur after laproscopic surgery for hernia. I'll keep looking. Hope you get more answers in the meantime. Sending HUGS
05-05-2014, 02:06 PM   #39
Jmrogers4
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It is a fat containing "fold" that drapes over your intestines
Itís difficult to explain but everybody has a lining that encases most of your abdominal organs (called the peritoneum). This lining has folds in it and within these folds there is fat, blood vessels and nerves. There are actually two omentums (or folds). The one Oprah is referring to is called the greater omentum - it is attached to the front of your stomach and part of your colon. Like everyone, if you gain weight you will deposit more fat in places around your body, the omentum is no exception. If you lose weight, the fat within this fold or omentum will decrease. Interestingly, the omentum serve a purpose - itís referred to as "natures band-aid" and will help limit the spread of infection or bleeding inside the body, it can also help prevent perforations from things like appendicitis spreading throughout your body
Not much help
05-05-2014, 02:13 PM   #40
Mehita
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I'm only finding what Jmrogers already posted. A fatty fold that hangs over the intestines to protect it. If it's attached to the abdominal wall, that might explain the pain... I can only imagine how that might hurt.

Keep us posted!
05-05-2014, 03:28 PM   #41
Farmwife
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Paging QueenGothel
I think her daughter had issues with this.
She has a lot going on with her daughter, so I don't know when she'll stop by.
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dx Juvenile Arthritis
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dx Erthema Nodosum
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05-05-2014, 05:18 PM   #42
Catherine
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I think what the doctor is talking about is abdominal adhesions.

I have been told there are three main causes:

1. Previous surgery

2. Infection (possible caused by appendicitis)

3. You can be born with them.

https://www.mdguidelines.com/abdominal-adhesions

I had surgery 20 years ago for adhesions of unknown origin, my doctor best guess was appendicitis at sometime.

In my case the ovary was attached to the fallopian tube.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

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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)
05-05-2014, 07:52 PM   #43
CrohnsKidMom
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Adhesions is my best guess too. I think they can be quite common, especially if there was previous surgery, like Catherine mentioned.
05-30-2014, 08:28 AM   #44
QueenGothel
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Wow I am super late! farmwife send me a private message when paging as the forum does not notify me. Been super busy with the preparation of garage sale for Take steps walk.

My kid had an omentum issue occur... It became such an issue she ended up having an omentumectomy. It cause blockages in 3 places in her small the surgeon actually described it that it looked like a giant spider on top of intestines. This occured where she had not had a previous surgery. Granted in my opinion in what they told you, it should be attached to the abdominal wall. It being the apron between the wall and intestines. Now if it were attached to the intestines this would be more of what we had going on.

I will not scare you with our giant story. Regarding the info I have read in the post ai will give you my opinion. FYI: I know surgeons like they are family. Pretty sad but it is my reality. I would have totally approved an appentectomy on a good appendix, it really is just a stupid part of the intestines that is not used and is a useless part of the organ, and it can just cause pain, it is such a routine tiny thing I wouldn't fret over it.

Constipation can be a real pain in the butt! Pun intended. My best advice would be to control that without miralax or any other laxative. Our Silver Bullet is All-Bran pulverized in a processor then thrown in a salt shaker, a tiny amount sprinkled on foods, start small as it works really well. (We sprinkle it on a PB sandwich) It is very possible that his issue is severe constipation. Constipation can cause the intestines to distend due to back up and can cause inflammation as the small twists and turns trying to fix itself. Also like previously discussed can even cause adhesions. Being in Dx purgatory sucks trust me I know! My kid is there and at this point ignorance is bliss, when she is well. Then when the crazy stuff starts we look, test, poke and prode and end up back in purgatory. Meanwhile what we do is follow the anti-inflammatory protocol. We keep her moving by using white grape juice all day. Skip all dairy as it constipates with the exception of Organic Yogurt. Add a high fish oil, tumeric force, culturelle probiotic, Florastor probiotic when on Abx. Following a non-processed whole food diet. Other than that I would look into his diet and stop any bad habits. ie: Cheeses, Milk, Fried foods, Caffeine, Soda, Junk food. I know it sounds stressful but you must think of food as medicine now. An occasional Dessert is fine but choose wisely like Strawberry shortcake, Dark Chocolates. Once things are moving along, you can allow other foods back in. I blame the majority of my kids issues on Constipation poorly controlled using Miralax. It is hard to get the water requirements in using laxatives.

Sorry I took so long! I do rely on email to notify me of any changes. My kid doesnt really fit in this forum usually. She is in purgatory so far that we do not fit into any specific category anymore. You found yourself a great group of parents though and support. This forum was there for me when my world fell apart. hugs to you and yours. I also run a few FB groups for kid whom have had major surgeries so I am there often admining.

Last edited by QueenGothel; 05-30-2014 at 08:53 AM.
07-27-2014, 04:13 PM   #45
joey123123
 
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Sorry for not replying sooner... I've been visting GI doctors in New York City and Boston. My son had the pill camera endoscopy... basically swallowed a pill sized camera which took 50,000 pictures as it traveled through his GI tract. The one thing this procedure showed that was not seen in endoscopy or colonoscopy were very very small and very few ulcers in the small bowel. The GI doctor ("Super Doctor") did not think the ulcers were consistent with Crohn's (but what is consistent with Crohns?). My son's lymph nodes are still enlarged in his ileum. The doctor prescribed Entocort.. he's taking 9 mgs per day and is experiencing all the side effects. Hunger, muscle pain, increased appetite.. you name it. Worst of all ... his pain is still there. Same place .. we're now entering month 5 without any diagnosis. I shared my son's pill cam results w/ the first GI doctor who said the pain was in my son's head. She now states... Oh, it might be Crohns. Great.

Has anyone ever seen very very small ulcers in small bowels? Does Crohn's present (hide) like this or is usually all out full blown?
07-27-2014, 04:59 PM   #46
joey123123
 
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Any thoughts on the Prometheus Test to diagnose Crohns? Their lab is in San Diego. Has anyone tried their services?
07-27-2014, 05:38 PM   #47
Jmrogers4
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We have had the Prometheus diagnostic done. I don't think you can diagnosis from it but is just another piece of the puzzle and more information. They look at sereolgy and specific gene mutations that have been shown to coincide with Crohn's or UC. It's an expensive test and most have had trouble with their insurance covering the cost.
07-27-2014, 05:54 PM   #48
joey123123
 
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Thx. I will hold off for now and to see how Entocort works.
07-27-2014, 05:59 PM   #49
Maya142
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There are a few parents with kids on here whose kids were diagnosed by pillcam but I can't remember who. Hopefully, they'll chime in soon.

My daughter did very well on Entocort, but there are some kids who need prednisone (but that has even more side effects).

Have you seen a rheumatologist by any chance? Some immune disorders can cause GI symptoms.
I'm going to tag DanceMom - if I remember correctly her daughter also had similar test results and was finally diagnosed with an immune disorder.
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07-27-2014, 06:09 PM   #50
my little penguin
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^^^ yeah that ...
Sometimes rheumos see the bigger picture not just the GI tract.
They deal in a lot of gray areas.
JSpA can cause subclincal inflammation in the Gi tract as well .
DS has this but falls under the Ibd associated side .

Here is a link

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2686900/

http://www.minnesotamedicine.com/Pas...September-2009
07-27-2014, 06:13 PM   #51
Maya142
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LOL I wasn't even thinking of JSpA (and both my daughters have it!) but that's very true. I've met several moms of kids who have "non-specific" inflammation in their GI tracts and a spondyloarthropathy. If you're going to Boston Children's they are supposed to have a GREAT rheumatology department.
If you are in NY we have been to the pediatric rheumatology department at the Hospital for Special Surgery (in NYC).
07-27-2014, 06:38 PM   #52
joey123123
 
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Thank you all.... I havent even thought about visiting a rheumie... I will look into this tomorrow. Thx.

Last question..... the pill cam showed very small ulcers ...very small and very few.... in small bowels. Do crohns ulcers start small and get bigger / deeper? Do they go away on their own or do they get worse? Can the ulcers be biospied?
07-27-2014, 07:38 PM   #53
DanceMom
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I think a Rheumo is a great place to start. Ours works very closely with our GI and that has been beneficial in my daughter's care. She definitely has many IBD symptoms and Crohn's seemed like the most logical diagnosis. We went with that for awhile, but the IBD medications weren't relieving all of her symptoms and we knew more testing needed to be done. It took 9 years for us to finally figure out she has an immune deficiency.

We did have the Prometheus testing done which clearly indicated Crohn's. Our insurance wouldn't cover the test, and in the end it only let us know that she may develop Crohn's in the future. Most of her scopes (she's had 5) looked okay visually but the biopsies showed acute inflammation. Her last pill cam showed ulcers in her stomach and small intestine. The stomach ulcers were biopsied and were not indicative of Crohn's. Ulcers can appear for a number of reasons and do not always indicate IBD.

Being undiagnosed is extremely stressful and frustrating and I hope you get some solid answers really soon. If you have any questions about immune deficiencies I'll be glad to share what I know.
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07-28-2014, 06:34 AM   #54
joey123123
 
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Is ok to post pill cam images ? I would like to hear forums thoughts / views?
07-29-2014, 05:54 AM   #55
DustyKat
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Yes, it is fine to post pill cam images.
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07-29-2014, 08:27 PM   #56
joey123123
 
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OK... I will post pics in a few mins. My son is on Entocort 9 mg in the morning. He's experiencing all the side effects....... cramps in legs, eating like a wild man, hot flashes, and reflux. Can any one offer help / advice how to minimize side effects? We're making him drink plenty of fluids plus eat bananas. Any other helpful pointers? Thank you!
07-30-2014, 12:33 PM   #57
kimmidwife
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This is a good article about the ulcers seen in Crohn's disease. I would certainly think the ulcerations can start small and then grow.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002561/
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
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EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
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08-02-2014, 10:21 AM   #58
joey123123
 
Join Date: May 2014
Thank you. I cant understand why three doctors at three top notch hospitals cant put a label on my sons illness. More importantly, why cant they treat him. Its been 5 months now.

My son's symptoms are worse at night when he lays down to sleep. He was up til 230am... crying about stomache pain / cramps.

My son has a big mouth sore on his inside lip today. Again.. more symptoms.

I also need to find a doctor who will prescribe pain meds. My boy is starting to loose it... feels helpless. We are getting desparate.

More doc appointments this coming week..... we'll see.

Thanks again.
08-02-2014, 10:48 AM   #59
Catherine
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To me it does sound like your dr is maybe treating your son for small bowel Crohn's. If the Entocort works in reducing the pain that may point forward it being Crohn's

http://www.webmd.com/drugs/drug-2200...t+ec+oral.aspx
08-02-2014, 11:30 AM   #60
joey123123
 
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In doc's pill cam report.... she stated rare ulcers in small bowel not suggestive of crohns. Yet shes treating with a med used for crohns. Entocort is not working.
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