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01-26-2016, 12:44 PM   #1
Sascot
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Struggling mentally

Really finding it hard to be positive just now. I know Andrew is in remission just now but I just get that feeling (I'm sure you all know it) that something isn't quite right. Nothing concrete, just his tummy being more noisy and his passing gas - something he's never done before.
Amy is hurting really badly for the last couple weeks, she's pale, tired and unhappy knowing no one is treating her. I'm so sad watching her suffer and now she isn't wanting to eat because it hurts. Still waiting on psychologist 4 months later and no other treatment. Back to the gynae this week. Laparoscopy soon I hope. Any ideas on pain relief?
My stomach is really hurting, starting investigations and my best friend who beat breast cancer just found out she has bowel cancer.
01-26-2016, 12:59 PM   #2
pdx
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No wonder that it's hard to be positive right now--that's a lot to handle all at once. I hope that Andrew's issues turn out to be nothing, and that you get some answers for Amy soon. It's always hard to see your kids in pain, but it's especially hard when you don't feel like anyone's taking it seriously. Hope that you're feeling better soon too, and I'm so sorry about your friend.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

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

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
01-26-2016, 01:06 PM   #3
crohnsinct
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YES! We definitely know that feeling! But absent any obvious symptoms we just have to suppress the worry and wonder and press on.

With poor Amy and your friend it is no wonder your stomach is hurting!

My heart breaks for Any. It is so unfair that a child could be suffering and no one is taking any concrete action. UGH! Feels like you are screaming in a room full f people and no one is listening.

I am so sorry to hear about your friend.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
01-26-2016, 01:15 PM   #4
Maya142
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I'm so sad for Amy. I wish someone would take her pain seriously. A psychologist might help her deal with the pain (and I'm all for psychologists) but she's still going to be in pain! I hope the gynecologist is able to give you some answers.

Have they ever tried any medications for neuropathic pain? Gabapentin? Lyrica? Elavil?
We've found heat best for tummy pain but I'm sure you've tried that.

We use these: http://www.snuggables.net/plush-stuffed-animals

Would it be possible to get her to a pain management doctor?

I hope you feel better soon too - when it rains, it pours huh?!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
01-26-2016, 01:18 PM   #5
Tesscorm
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That is a lot to tackle at once.

Re Andrew, try not to worry. Over the years, there have been many times I was certain my 'gut' feeling that something was wrong, turned out to be nothing. I know it's not always easy to do but try to put these worries aside until/unless you have something a bit more concrete. Or, until his next follow-up when you can run it by his GI.

As for Amy, that is so hard and no easy answer. I can imagine how heartbreaking and frustrating for you to see her and know you've exhausted most, if not all, options right now (unbelieveable that any modern medical system can leave a child stranded like this!! ). I hope the gyna can find the reason for her pain!

And, I'm so sorry that on top of your worries for Andrew and Amy, you're not feeling well yourself and dealing with your friend.

Try to take care of yourself as much as possible so that you feel strong enough to tackle everything else. Are you starting your new job soon? Being out, meeting new people and having new, easier, challenges to learn will probably help you feel a bit better (and better able to get through these issues)!

Thinking of you!

(If all else fails, do as CIC does... pull out that wine bottle! A mom's version of supplemental EN!! )
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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
01-26-2016, 02:59 PM   #6
Sascot
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Thanks everyone. I am trying to keep positive about the job, really looking forward to it. Starting 15th Feb.
I did ask about pain management team but was told they wouldn't suggest anything different. We did try amitryptaline but found it did nothing for pain and made her hallucinate. I'm sure things will seem better in a few days.
That bottle of wine in the fridge is looking good!
01-26-2016, 03:19 PM   #7
Tesscorm
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I'm sure the job will help! Helping people plan for their vacations can only help take your mind off things for a while! If anything, you may soon be feeling down because you aren't planning your own vacation!

01-26-2016, 03:28 PM   #8
Maya142
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Sending hugs . All those medications are slightly different - just because she reacted badly to one, doesn't mean she'll react badly to others.

I hope the gynecologist has some ideas.
01-26-2016, 04:30 PM   #9
CarolinAlaska
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I'm so sorry. Things are pretty rough here too and seems like no good end is in sight. I try to treat myself to little joys in life so I have things that I enjoy to get my mind off all our troubles. Today I bought myself a new birdfeeder. I'm imagining lots of pretty birds using it, and how my cat will enjoy watching it too.
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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
01-26-2016, 05:31 PM   #10
Worried mama
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Sorry to hear all this, it's overwhelming....hugs to you and your family.
01-26-2016, 07:44 PM   #11
kimmidwife
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Sascot,
That is so rough. Amy's issues really sound more then Gyn. Eating does not affect the gyn system. When she eats and then is having pain that says GI to me. Is the GI not willing to do any further work up on her?
Sending you big hugs!
__________________

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
01-26-2016, 07:53 PM   #12
Catherine
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Sascot

Think of you and your family. I am also struggling at moment.
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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)
01-26-2016, 08:39 PM   #13
my little penguin
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Hugs Sascot
Never easy
If you can hear his stomach moving from across the room
Please let your. Gi know ASAP
That's a warning sign of a stricture

Wishing you could find answers for your dd
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01-27-2016, 03:04 AM   #14
fuzzy butterfly
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Love and hugs to all having a rough time 💕
Wish i had a magic eraser to erase all our pains n sufferings. I pray things improve soon . Best wishes to you all 💕💋
01-27-2016, 06:23 AM   #15
Optimistic
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Good morning Sascot. I am so sorry you are dealing with way too much now!

Im sure watching Amy hurt so much is tearing you apart. Let's hope the gyn has some great wisdom and answers, and if not, can point her in another direction for help.

So sorry about your friend and that her cancer is in an area of body we know too much about. Was it detected early? She has beaten it once so we want a repeat of that story.

Please be good to yourself as you deal with all of this. The new job might turn out to be a real blessing.

Keep us posted.
01-29-2016, 02:51 PM   #16
Farmwife
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Hugs my dear forum friend.
Sorry I didn't reply sooner.
Is anything looking better?

I hope the job helps give you a few hours of normal a day.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
01-29-2016, 03:43 PM   #17
Chester31
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Sending hugs - you are dealing with so much right now. I'm with MLP re the stomach noises. J has several strictures in his small bowel - they create a lot of noise! Might be worth contacting GI/IBD nurse xx
01-30-2016, 05:20 AM   #18
Sascot
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Thanks for all the support. Ended up at the hospital with Amy last night. The doc was very nice and did say we really need to find meds to manage these symptoms and it's not right she's struggling so much. However, no tests done as usual and no tests recommended. They seem to believe she's had so many tests. She's had an ultrasound, a colonoscopy and endoscopy and a blood/stool test. That's it.
Surely it's better to find the pain and possibly take it away rather than never doing more tests and trying to manage it? They always make me feel I'm being unreasonable expecting more testing, or that it's cruel on the child to keep going through tests.
I will speak to the nurse about Andrew's noisy tummy in case it's an issue
01-30-2016, 11:21 AM   #19
Maya142
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Sascot, I'm so sad to hear this. I wish they would at least TRY to figure it out.

Sending hugs !
02-01-2016, 12:27 AM   #20
awmom
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Gosh Sascot, I completely understand your frustration, and you are definitely not being unreasonable. Your little girl is in pain! Especially if the pain comes shortly after eating or before a BM, I would suspect a GI issue. Have they thought of a CT or an MRE? This way they could get a look at the entire GI tract and whatever else might show up in the abdominal area? Hopefully the laparoscopy will give you some answers, or at least let you know what it is NOT, and then they can go from there. Waiting 4 months for a psych consult is way too long....I hope she gets one soon. Hang in there and keep us posted.
02-01-2016, 10:12 AM   #21
Jmrogers4
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Big Giant Squishy Hugs. You certainly have a lot on your plate. Hope the rest of the year is filled with only good news and answers.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-02-2016, 09:11 AM   #22
CrohnsKidMom
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Sascot, Catherine, sorry both of you are struggling right now. Sascot, my mother is going through a similar medical situation right now. It is so very frustrating to know there is a problem, and to find so little help dealing with it. My heart goes out to you.
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Son diagnosed with Crohn's March 2013, at age 8
02-02-2016, 04:47 PM   #23
Sascot
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The GI was dismissive last year and refused to do a small bowel MRI or pillcam. He also wouldn't refer her to a dietician to try elimination diets.
We had a pelvic MRI through the gynae today so waiting on those results.
Quick question - if it isn't Crohns, what could cause an otherwise healthy 13 year old to develop an ulcer in her stomach and/or severe pain after eating?
02-02-2016, 05:16 PM   #24
kimmidwife
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Sascot,
That is a very good question. Here is what they said online and of course they forgot to include crohns as a possible cause but we all know that is one,
http://www.healthline.com/health/sto...lcer#Symptoms3
02-02-2016, 05:19 PM   #25
kimmidwife
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Here is another one, this one more aimed at kids,
http://kidshealth.org/teen/diseases_...e/ulcers.html#
02-03-2016, 06:40 AM   #26
Sascot
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Thanks for the links, interesting. She has been tested a couple times for h pylori and they always come back negative.
02-03-2016, 06:16 PM   #27
Catherine
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I have a dx IBS. Wheat gives me pain and reflux.
02-03-2016, 06:53 PM   #28
Maya142
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Does she also have nausea after eating? Fullness? Does she get full after taking a few bites?
Those are all symptoms of Gastroparesis.
02-03-2016, 07:04 PM   #29
my little penguin
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Ds had increased constipation and belly pain ( double over ) as part of his Gastroparesis .
Hugs
02-05-2016, 04:57 AM   #30
Sascot
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She doesn't have any nausea or fullness, just pain. She is on omeprazole from last week and the pain after eating seems to have settled, she is back to her normal level of pain.
The paediatrician actually ordered a tummy, small intestine and pelvic MRI yesterday - I didn't even need to beg! It's the NHS so it will probably take at least a month, but it's something
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