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06-03-2016, 08:07 AM   #661
Farmwife
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I hope all goes well for him.
I'm interested to see if the patch works.
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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
06-03-2016, 10:49 AM   #662
Tesscorm
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Good luck today! Hoping for good news!!
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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
06-03-2016, 11:17 AM   #663
pdx
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Hope it goes well and you get good results!
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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
06-03-2016, 08:03 PM   #664
Pilgrim
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I hope it went well today. I'm also interested in the patch. I read on another thread someone tried heat on the area before injecting instead of cold and it worked like a dream - as in no pain.
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Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
06-03-2016, 08:16 PM   #665
Clash
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The patch actually has a warming component too.

Scopes went well results were what we figured there is active disease. We wait on biopsies, GI and rheumatologist are going to discuss. GI wants C to start entyvio and may be that he has to also stay on anti tnf for his joints. Follow up in two weeks.

I was expecting the results we got but it still took every thing outta me for today.

I'll let you guys know how the patch goes, it'll be Sunday when he takes the next humira.
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Clash
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
06-03-2016, 08:19 PM   #666
Maya142
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We might join you soon and put M on two biologics too.

Sending HUGS -- I wish scope results had been better.
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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
06-03-2016, 08:32 PM   #667
Pilgrim
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How long for your biopsies?
06-03-2016, 08:34 PM   #668
Clash
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The biopsies will be back next week. The nurse said she'd call with the results even though we have a follow up 2 weeks out.
06-03-2016, 08:43 PM   #669
crohnsinct
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Literally held my breath as I opened this thread!

I am so sorry. I know you were expecting this but it still doesn't make it any easier.

FWIW - my nephew did not respond to anti tnfs but he is doing very well on Entyvio.
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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
06-03-2016, 08:53 PM   #670
my little penguin
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Big hugs
Always hard to hear even when you are expecting the results
The verbalization of them make them too real
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DS - -Crohn's -Stelara
06-04-2016, 10:34 AM   #671
pdx
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So sorry to hear this, but I guess it's good to know what's going on. I really hope you find a treatment that works well for your son!
06-05-2016, 01:41 AM   #672
Sascot
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Really sorry to hear that. Hope the next step works better
06-09-2016, 06:23 AM   #673
CarolinAlaska
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Sorry to hear it. I can feel the maddening frustration with you. How is C holding up?
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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.
06-10-2016, 08:20 AM   #674
Tesscorm
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Clash, I'm so sorry that the news wasn't better. And, I can certainly understand how upsetting to hear, even if you expected it. I'm sending lots of wishes that his GI and rheumi can find a solution that gets him into solid remission. I know his crohns is usually asymptomatic, which helps a bit, but I know you can't be in peace until he is truly in remission. I'm just so sorry he's not there yet.

I hope you get the biopsy results soon so you can move on to the follow-up and decide on a plan moving forward. Lots of hugs!
06-10-2016, 08:44 AM   #675
awmom
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Gosh Clash, I''m so sorry to hear this...I know how disheartening it is. How is C doing with the news? I do hope the Entyvio is the magic bullet for him and you can both have a little peace of mind.
06-10-2016, 08:47 AM   #676
Clash
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It's hard to say how C deals with it...outta sight outta mind is my best guess. I think it's a product of being asymptomatic.

I just really haven't processed it myself. I'm waiting on a call back from the rheumatologist so I can discuss it all with her. And the the follow up with GI is next Tuesday. He's supposed to have talked with rheumatologist as well.
06-15-2016, 06:26 AM   #677
Clash
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We had C's GI follow up yesterday. In the time between scope and follow up the rheumatologist balked at the idea of two biologics (still trying to discuss with her but through the nurse so it's a waiting game).

Biopsies weren't good, granulomas and micro granulomas throughout, including colon which was visibly clear.

Thanks to Maya142, I went in wanting to discuss stelara instead of entyvio since it doesn't treat JSpA. The GI was very open to it and was going to discuss with a colleague at Janssen. He said he had two patients on stelara and fail but that was at the lower dosing and that the new study arm with higher dosing has shown good results.

I'll update when we hear more.
06-15-2016, 01:17 PM   #678
Tesscorm
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Hate that the biopsies weren't better... I know it didn't come as a complete surprise but still...

Have you discussed the stelara with his rheuma? Would she be willing to try it?
06-15-2016, 02:07 PM   #679
awmom
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So sorry to hear about the biopsy reusults. It's so good to go into appointments with some knowledge and suggestions (with help from this forum!!) so you can have more options. Hope you find something that works really soon.
06-15-2016, 03:14 PM   #680
Clash
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I haven't mentioned stelara to the rheumatologist yet as conversations are taking long times since I basically give the nurse questions and concerns then she calls back a few days later with Dr responses.

I don't think that she'd have issue with stelara since it has had some positive results with the arthritis side. I read one study about it and it seems another may be occurring now?
06-15-2016, 06:44 PM   #681
Optimistic
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I'm just catching up on this and I HATE to hear what has transpired!!

I really hope Stelara will be approved and make a difference. You and C both have my awe, admiration and respect in how you deal with this.
06-15-2016, 07:20 PM   #682
Clash
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Aww...thanks. He's not saying much other than he doesn't think anything is going to work. I think the number of let downs are piling up. But today he called and was upbeat about some work stuff and an upcoming getaway so it made me feel a bit better.
06-17-2016, 11:31 AM   #683
kimmidwife
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Clash,
Sorry to hear. I hope the stelara will work for him. Not helping the joints is the one big downfall of entyvio. Caitlyn still gets a lot of joint pain all the time.
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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.
06-22-2016, 03:09 PM   #684
Tesscorm
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A bit delayed in my response but I can understand his frustration and your worry.

S was feeling the same way over the last year, with all those varied issues he's had.... we'd barely have an answer to one question when another would come up. He was getting frustrated, upset, disheartened, etc.

I feel for C (and you)... it broke my heart when S would say it was hard and he was tired of seeing his friends out and enjoying life and he was always saying no because he felt badly or just didn't feel like going out because he was depressed about the latest symptom (or lack of answer).

I don't know how much it helped him but, when he was especially down and expecting 'nothing' from the next test or specialist, I just kept reminding him that life is long and there are periods of not so great times... sometimes they last just a few weeks but sometimes it can be much longer. And, when taken in perspective of an entire lifetime, they are just short periods... Kept reminding him that everyone has these tougher times, whether related to health or other reasons... you just have to remember they will eventually be in the past. Also reminded him that, unfortunately, getting to the final answer takes time and some turns... sometimes you simply can't avoid the time it takes to try and rule things out.

Like I said, I don't know if it helped him at all... at the time, it didn't seem to have much of a positive impact (but, you know what boys are like... a positive sign can simply be the lack of an 'eye roll'!) but... there was really nothing more I could do but try to help him be patient until the next apptmt.

I hope things start moving ahead for C!!! Thinking of you both!
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