12-20-2013, 05:46 PM   #181
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kimmidwife's Avatar
Hi Everyone,
I am so down in the dumps today. I am feeling so hopeless. We finally get this darn Crohn's under control and now are struck with this new illness. I am trying to be strong for Caitlyn. But really I just feel like crying. The more I read about this illness the more upset I get!

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.
12-20-2013, 05:51 PM   #182
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Farmwife's Avatar
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Hugs, hugs, hugs.
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
12-21-2013, 08:41 AM   #183
Tesscorm's Avatar
Join Date: Jun 2011
Location: Ontario

My Support Groups:
I'm so sorry Kim. I can only imagine how upset and frustrated you are feeling. Just sending lots of hugs!
Tess, mom to S
Diagnosed May 2011

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
12-21-2013, 08:50 AM   #184
my little penguin
Forum Monitor
Join Date: Apr 2012

My Support Groups:
Big hugs
New dx are rough
Give yourself time to grieve
And come up with a plan just for her
It will get better
Until then trashy novel chocolate and quiet time are in order for you .
DS - -Crohn's -Stelara -mtx
12-21-2013, 02:49 PM   #185
Holding It Together
CarolinAlaska's Avatar
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
<<Kim>> (that is my virtual hug). This too will get easier.
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
12-23-2013, 05:46 PM   #186
Senior Member
greypup's Avatar
Join Date: Apr 2013
Location: St. Louis, MO

My Support Groups:
Hi. I need a hug too.

M has cystic acne that got worse while on EEN. She is now beginning Accutane.

My husband who has had surgical infections from a knee replacement a year and two months ago was supposed to have a new knee replacement surgery this week - Dec 26. The orthopedic surgeon just cancelled his surgery this afternoon b/c his sed rate is beginning to climb again.

In total he has had 8 surgeries on his knee. He currently has a cement spacer in place of a knee and is confined to a walker, no driving since Aug. He is crushed in that the infection might be re-emerging.

I know the drugs are the best thing for M and that delaying surgery is the safest thing for my husband, but he**@!(@!!, they've been thru so much.
Mom to 18 yr old daughter, M, dx'd Crohn's April 2013
TI resection surgery June 2013
supplements=Vit D, L-Glutamine, Omega D, Probiotic, Curcumin

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