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12-14-2012, 12:07 PM   #1
Sascot
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Back from hospital

Hi everyone, I'm back .
Wow, I am away for 4 days and I am bumped off the page! Well that was a very unfun few days spent in the children's hospital.
Took Amy on Tuesday morning to the A&E after another bad night. To my surprise they admitted her - yes I was shocked. They starved the poor girl after lunch in case the surgeon wanted to take her to theatre, which he didn't at that point. Said she could have breakfast at 8.30am and then decided that they didn't think they would find anything, but they would do a cystoscopy, vaginoscopy and up the bottom and if they didn't find anything they would go through the belly button and look with the camera.
They made her fast with no food or water until 10.20pm - I was so upset and she was extremely distressed, not even so much the food, but was so thirsty! They didn't even have a drip up for fluids - not a happy camper .
So they didn't find anything, went through the belly button, found nothing again (frustrating but good in a way) but in their wisdom decided to take out her appendix "just in case" even though it looked fine.
Poor soul is rather miserable, in pain and finding it hard to move around. Finally got out today so a bit happier watching TV.
Now my mom is in hospital in Glasgow and I have to drive through again and visit her tonight as it's her birthday, while picking up her things at the other hospital first. May collapse tomorrow.
Will catch up threads tomorrow!
12-14-2012, 12:11 PM   #2
my little penguin
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Hugs ...
Did they biopsy her colon or just do a visual??
Sorry she is in so much pain.
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12-14-2012, 12:14 PM   #3
muppet
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They removed portions of her body "just in case"??! I'd have been livid, but you've been under so much strain lately I can't imagine you were in any condition to talk back much. Sarah was hospitalized with her severe Remicade reaction, which was initially thought to be some exotic disease, under quarantine, at the same time as my wife was in another hospital 100 miles away having just given birth to our second, who later was transferred to a THIRD hospital across the state to the NICU. I've been where you are.

How old is Amy? Is she still in the hospital? What's a cytoscopy?
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12-14-2012, 01:20 PM   #4
Tesscorm
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Wow, you poor thing - you've really had a rough few days!!! I'm so sorry that Amy is still in so much pain... after all that, they STILL don't have any answers?!?!?

How is your mom doing? What are their plans for your mom?

I hope you have a chance to rest up a bit over the weekend!

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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
12-14-2012, 01:31 PM   #5
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Oh my gosh... so sorry you're having to go through all of this with no answers. It is so frustrating and overwhelming.

I've been in your situation several times. Hospitals/doctors always seem to make me very stressed and I always had trouble explaining to a 4 year old that he can't eat

How old is Amy?
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Mom to Zachary - 6 years old
Diagnosed in December 2010
Tried Prednisone, Azathioprine, Humira, Remicade, Methotrexate and several others
(All medications have failed)
Colectomy/Ileostomy October 2011
J-Pouch in July 2012
J-Pouch failed - Reversal/Ileostomy March 2014
12-14-2012, 02:19 PM   #6
kimmidwife
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Muppet,
A cystoscope is a test they use to examine the bladder. I am so sorry about Amy. I hope she is feeling better fast.
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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.
12-14-2012, 02:52 PM   #7
imaboveitall
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Muppet, removing the appendix prophylactically when in the abd for another reason is standard and makes perfect sense. It is a vestigial organ and serves no purpose.
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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
12-14-2012, 02:53 PM   #8
Patricia56
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Sounds awful. I too groggle at the idea that you would do surgery and remove a body part "just in case". Especially since the appendix actually does have a function. Hello? What were they thinking?

Please don't think I am criticizing you. The fact that medical doctors would tell you it was needed and then do it - that's what's the issue.

If it fixes things then I guess that's great. So here's hoping that's what happens.

I'm sorry to hear about your mom. Hope it's nothing super serious and she's back on her feet and on the mend real soon.

And that you get to collapse into a warm bath and a soft bed for uninterrupted sleep some time very, very soon.
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Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
12-14-2012, 03:35 PM   #9
izzi'smom
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Glad to hear of the negative tests, although I, too am SMH at the thought of an appendectomy just in case. Hoping she is feeling better quickly! and that you can get some much needed rest at some point in the near future!
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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.
12-14-2012, 05:06 PM   #10
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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
12-14-2012, 06:42 PM   #11
Ams-Qld
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Wow Sascot it has been a rough few days! Hoping Amy recovers well and things settle for her soon. Praying you get to spend some time with your mum and that she is also on the mend. Lots of hugs and praying for you all!! xxooooo
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Son with Crohn's, Dx at age 10 - 4 years ago. Anaemia of chronic disease (first iron infusion Dec 2013) Peri-anal abscesses (Aug 2012) that formed fistulae (early 2013). Began 8 weeks of EEN in Dec 2013 via ng tube.
Current Meds: Imuran (25mg) morning and night. Previous Meds: Pred, Flagyl, Cipro. Allopurinol.
Please take my thoughts and experiences as mine alone; I am not a medical professional and my humble opinions are not to be taken as advice! Blessings to you and yours!
12-14-2012, 08:50 PM   #12
Mehita
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Wow, Sascot! I hope Amy and your mom get better soon, but I also hope you can find a minute or two for yourself. Please keep us posted...
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- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
12-14-2012, 09:44 PM   #13
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Goodness, so much to go through in such a short time, I do hope you see improvement soon with Amy and all goes well with your Mom and she has had a restful birthday. Hope you get some down time tomorrow to rest!
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Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
12-14-2012, 09:56 PM   #14
QueenGothel
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Aw man when I rains it pours there must be a funny full moon I missed or something. Glad you guys are home and am hope your mom is doing better. Hope Amy is feeling better real soon also.

Rowan also has been hospitalized we go home tomorrow sometime. My mom had her kidneys done and is at home passing kidney stones in miserable pain. Might be going back in for a morphine drip. I feel terrible that I can't be there for her so I understand completely how your feeling right now.

This too shall pass. You take care and get some rest.

Hugs
12-14-2012, 11:30 PM   #15
Catherine
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Think of you and Amy.
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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)
12-15-2012, 12:26 AM   #16
jmckinley
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What a whirlwind! I'm glad you got some action, but sorry no conclusive answers were found. I hope Amy is feeling better soon. Happy Birthday to your Mom and hope she is on the mend!

Hoping the storm calms and you get to rest very soon!
12-15-2012, 05:13 AM   #17
Sascot
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Thanks everyone! Amy is resting in bed enjoying being home . I slept like a log last night - think poor hubby didn't with my snoring back .
Muppet - I was told that an appendix can harbour some inflammation inside while still looking normal on the outside, so given the level of her pain, they decided it was worth a shot. At least she never has to worry about appendicitis!
Myreinhard - hope your mother improves soon and good luck with Rowan!
12-15-2012, 06:05 AM   #18
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Whoa Sascot, what a ride!

I am so glad to hear Amy is home and I hope she is soon feeling better, bless her.

It is also good to know all was normal but I hope that equates to the pain subsiding too.

I was confronted with the same scenario when Sarah was taken theatre. Of course they really didn't think they were going to find anything but as a last resort to try and get to the bottom of the problems and rule out a grumbling appendix as a future cause for issues that may present again she was sent for a laparotomy and appendectomy.
I was at the end of my tether by that stage, seeing her suffer for so long, I was ready to grasp onto anything as an answer.

Dusty. xxx
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12-15-2012, 08:04 AM   #19
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Oh my goodness - How is she pain wise now? any improvement? sending big hugs to all of you and hope your mum get's better soon too. xxxx
12-15-2012, 08:33 AM   #20
Lewis,s mum
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i had my appendix out 5 weeks ago aftr terrible pain . they wernt sure what they were going to find when they went in they found the tip ov my appendix was inflammed qipped it out and i was adament that it wasnt the cause. i think im the quickest healer ever lol so nearly went down againfor more investigations but started to feel bettr . i was up and about within a couple of weeks the worst is trying to get up from lying flat my hubby thouht it was super funny amd i now have the nickname baby whale .lol cheeky bugger isnt he. i hope she starts to feel better soon hnnyand u dont crash and burn before u drive to glasgow. redbull coffe and some lively dance music will keep u up till u can relax . xxw
12-15-2012, 10:24 AM   #21
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In the last week reading everything I could about c.diff. I remember reading a study showing they think IBD patients harbor the c.diff in the appendix, not that Rowan has hers but it could be a cest pool for causing trouble and since we don't really use it worth a shot. I wish it would have helped more though.
12-20-2012, 06:03 PM   #22
Sascot
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Just a quick update . Amy is recovering well from the surgery although seems quite tired and her scars hurt every now and then. Was quite impressed with the waterproof glue they used to close the cuts, so she could shower/bath straight away if she wanted to.
My mom is home but still unable to stand on her own or walk. She has carers coming in 3 times a day to check on her and help out. It is great not having to travel 50 mins to see her! She is starting to try treat herself as she is not getting any treatment from the docs/specialists.
Andrew is doing well but will be starting the 6mp after the Christmas holidays!
12-20-2012, 07:03 PM   #23
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How is her pain?
12-22-2012, 10:28 PM   #24
DustyKat
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Hey Sascot...

So good to hear that Amy is recovering well. I hope it is continuing that way and the pain is subsiding.

Also good to hear your Mum is home. What treatment is she having to do herself?

Dusty. xxx
12-27-2012, 06:49 PM   #25
crohnsinct
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Hey there. Just checking in on you guys and hoping all is well.
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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)
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Entocort
IBD-AID Diet
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Calcium
Folic Acid
Previously used: Mtx injections
12-28-2012, 05:32 AM   #26
Sascot
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Thanks for checking in! We are all doing fine thanks (apart from a cough I have picked up).
Amy is doing well and is back to her normal self . Her scars freak her out every now and again .
Andrew is still doing well, which isn't helping me feel any better about starting the 6mp. Still feels wrong on so many levels!
Does anyone know of 6mp working to help heal a fistula? That is Andrew's only symptom, so I am concerned that the meds won't heal that plus cause trouble in other parts of his body that have no problems now.
12-28-2012, 07:30 AM   #27
crohnsinct
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Normal self being pain free? That would be amazing! Poor thing probably can't remember what normal is like. Did they tell you to put that scar cream stuff on her scar? Might be too soon but at a certain point in the healing there are creams and even just plain old olive oil that you can massage into the scar to help lessen its appearance.

I hear ya on the meds...sorry no advice there.
12-28-2012, 09:19 AM   #28
Tesscorm
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So glad Amy is feeling better!!!! Woohoo!! Must be such a big relief for you...

And totally get your feelings re the 6mp for Andrew when he's feeling and looking good! Ughh
12-28-2012, 09:21 AM   #29
muppet
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Yeah we need a more specific definition of "normal", Sascot...
12-28-2012, 09:43 AM   #30
dodie74
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Sascot, Kian is same, no symptoms other than the perianal fistula 2 years back and thank goodness it wasnt a fistula this time. I was exactly the same as you and didnt want to start the 6mp but im sure now its doin its job. I still think to myself, i dont think kian has crohns as he has no symtoms then come crashing down to earth when i remember the biopsies n tests to show he has . Best of luck with the 6mp. xxxx
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