Joseph's Passing

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Chiron
Regular Member


Date Joined Jun 2015
Total Posts : 228
   Posted 5/29/2018 12:34 PM (GMT -6)   
Hello,

I am Joseph's (Chiron's) sister. He left his family with some internet contacts that he wanted us to let know if something happened to him.

Joseph had colectomy surgery on Friday May 18 after a long and hard struggle with ulcerative colitis. Two days after surgery he had a very high fever and doctors discovered he had something called peritonitis. The stitches where he had surgery had a lot of pus and when they tested the pus they found out he had MRSA and we were told it can be hard to treat. They treated him with more than one antibiotic. On the Monday he had acute kidney failure and they had to put him on dialysis. His pain was so high I can't begin to tell you. His whole family was there but we felt so helpless. The doctors said people can recover from acute kidney failure and be normal again so we were all hoping. On Wednesday Joe had his first heart attack and they were able to save him. I wasn't there but my father was and he said it was the scariest 15 minutes of his life. For the next two days Joe was in and out. His stoma started working and he could drink soup broth but the infectious disease specialist said that the antibiotics did not seem to be helping the infection, so they would switch him to some others. On Friday when I came to visit, Joe's belly was really big and swollen like he was pregnant. The doctors said the infection had become serious so their plan was to open him up again and disinfect his insides directly. They said it was high risk but if they didn't do it he would die. Joe was scared but he signed the papers. He just wanted the pain to stop. On that last day he just didn't look right anymore. I will never forget my last conversation with him when he said "this isn't living".

In surgery he had another heart attack and this time he could not be saved. He passed away on May 26 early morning around 2am. We never really thought anything like this could happen but he was already so weak when he got to the ER that we knew it could be possible. Now my brother is gone. He wrote a list of different people that should be contacted and he gave us his info for coming to this site. I don't know what his role was here but I have been taking the time to let everyone on his list know. Honestly I am just numb as I write this as I try to carry out his last wishes. I keep telling myself that in the end he had no pain because he was put out for surgery so he died in his sleep. I hope that some day this disease is conquered and nobody has to go through what my brother went through. I have never seen someone suffer so much in my life and then end up dying when he seemed so close to being saved. He had so much potential at only 29 years old. In his healthy times he loved helping people get well and wanted nothing more to ease other people's suffering. To see him suffer so much in the end wasn't fair. Thank you for reading I hope I am posting this to the right place. I will try to come back when there is time.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16278
   Posted 5/29/2018 1:01 PM (GMT -6)   
I am so sorry. I feel numb reading this - I genuinely feel sick and sad, shedding tears for him & you, and the family. He came here to gather information and help people who were suffering with IBD. He will be missed. I am very, very sad. sad
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

Michelejc
Forum Moderator


Date Joined Jan 2011
Total Posts : 2125
   Posted 5/29/2018 1:08 PM (GMT -6)   
I'm so sorry.
MODERATOR-UC FORUM
59, female - diagnosed with moderately severe proctitis/mild diverticulosis
Lialda - one a day
6mp - 50 miligrams
VSL#3 DS - 1 pack a day or as needed
Zocor - 40 mg
Calcium with Vitamin D
Glucosamine
Magnesium
B-Complex

"Fly under the radar" - Dad -

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10532
   Posted 5/29/2018 2:13 PM (GMT -6)   
This is absolutely awful news.

I must admit, I was a bit worried that Chiron hadn't updated in a while. I was hoping he had the surgery and was recuperating. I'm so, so sorry. I want an end to this awful disease too.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

kloz31
Regular Member


Date Joined Jan 2018
Total Posts : 49
   Posted 5/29/2018 2:14 PM (GMT -6)   
I am so very very sorry for yours and your family’s loss.

Old Mike
Veteran Member


Date Joined Jan 2007
Total Posts : 3863
   Posted 5/29/2018 2:20 PM (GMT -6)   
I am so sorry, was really concerned and wondered what was going on.
oldmike
UC-1980, same flare since 1986. Still smoke. MEDS: None
SELENIUM for GPx, Zinc,NAC, glycine up to 10 grams a day, for Glutathione. Folate,B12.
SOD makes me worse. Why. Makes too much hydrogen peroxide from superoxide,
then not enough GPx and catalase to convert to water,then makes hydroxyl radical.
Curcumin-Thins my blood too much.

Andrina
Veteran Member


Date Joined Aug 2011
Total Posts : 3094
   Posted 5/29/2018 2:22 PM (GMT -6)   
I'm so sorry to hear this. Thank you for letting us know. cry
UC since 2002
Flaring since March 2018
Currently on Simponi, Wellbutrin 150 mg, Zoloft 50 mg, plant based calcium
CT scan on 4/18 showed pancolitis
Dexa scan on 10/09/2017 showed decreased bone density but some improvement in the spine

RunJerRun
Regular Member


Date Joined Oct 2017
Total Posts : 40
   Posted 5/29/2018 2:40 PM (GMT -6)   
Terrible news. Sorry to hear he suffered so much. My thoughts and prayers are with you and your family. I hope you can find comfort in knowing his suffering is over and is at peace.
42 year old male
Sept 2017 -DX UC Symptoms since Jan 2016
Nov 2017 - DX Kidney Cancer, Partial Nephrectomy Surgery.
Failed meds, diets, - UC progressed to sever Pancolitis
Feb 2018 - Surgery, Step 1 - Subtotal Colectomy, Ileostomy
Med Free - Pred Free!

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 8334
   Posted 5/29/2018 3:39 PM (GMT -6)   
like others here, i had been wondering how he was doing - i am so very very sorry for your loss -
dx'd with pancolitis 12/21/03
current supplements:vit D, vit K2, cal/mag - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !

imagardener2
Veteran Member


Date Joined Jan 2010
Total Posts : 5728
   Posted 5/29/2018 3:39 PM (GMT -6)   
So very sad to hear of Joseph's passing.
Thank you for letting us know because we all cared about him.
He was one of us.

Serenity Now
Veteran Member


Date Joined Jan 2009
Total Posts : 2105
   Posted 5/29/2018 3:42 PM (GMT -6)   
Oh no, this is such shocking and sad news. I can only imagine what a shock it is for you and your family. I am so sorry.

Thank you for following your brother's wishes and updating all his contacts.
Female, 51, Vancouver BC
Pancolitis: Currently in remission

Jan-Mar2009: Asacol HD. Resulted in severe joint pain and no discernible benefit.
May26-Sep4/2016: Mezavant 4800 mg
Sep5/2016 - : Mezavant 2400 mg

countess18
Regular Member


Date Joined May 2016
Total Posts : 232
   Posted 5/29/2018 4:22 PM (GMT -6)   
I am so so sorry to hear this. I read many of your brother's agonizing posts while he suffered with this awful disease. I am sorry for your family to lose such a nice young man. Everyone here cares.
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
Nov 2017- ?Crohns colitis to mid transverse - mild/moderate
remission March-Sept 2017 then flared again-failed prednisone/balsalzide wean
started Humira 11/17/17, off prednisone since 3/1/18,
past meds- cortifoam, canasa, rowasa,balsalazide, prednisone

dontscopeme
Regular Member


Date Joined Jun 2012
Total Posts : 294
   Posted 5/29/2018 4:51 PM (GMT -6)   
I'm sorry for your loss. I was thinking of Chiron since he said in a recent post he would be having surgery soon.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12516
   Posted 5/29/2018 5:39 PM (GMT -6)   
Oh no, sorry to hear (I too had hoped he was on the mend , healing, and would post when he was well enough to). My condolonences to your family on your loss. :-(
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

I laughed, I cried, and I screamed out in anger; all in one poop. Thanks UC...

ambling
Veteran Member


Date Joined Feb 2011
Total Posts : 725
   Posted 5/30/2018 12:05 AM (GMT 0)   
This is dreadfully sad... he will be missed, for his courage and dedication to trying to resolve the UC.

It was terrifying when they wouldn't put him on TPN. Clearly he needed it. But they made that choice.

At last, peace has arrived for him.His suffering has ended.

Condolences to the family and friends left behind.
Loving wishes for you all, I know he would want you guyz to be happy.

hateuc
Veteran Member


Date Joined Jun 2010
Total Posts : 2353
   Posted 5/29/2018 6:11 PM (GMT -6)   
I am so sorry to hear this. How terrible for you and your family. Please accept my deepest sympathies.
B

James Patterson
New Member


Date Joined Jul 2015
Total Posts : 8
   Posted 5/29/2018 6:17 PM (GMT -6)   
Only 29. Very, very sad.--- His suffering is over.
61 male. 11 years UC. Currently on Entyvio.

CaptPoopyPants
Regular Member


Date Joined Aug 2009
Total Posts : 42
   Posted 5/29/2018 7:14 PM (GMT -6)   
Many of us knew that Chiron/Joe was in rough shape recently. We were pulling for him and hoping for the best possible outcome. It's terribly sad to hear that he has passed... such an intelligent and caring young man. My condolences to his family and friends.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30587
   Posted 5/29/2018 8:08 PM (GMT -6)   
I'm shocked and saddened to hear of Joseph's death. I can truly imagine your loss and how hard it is to tell us of it. He was in a bad state when posting while in hospital, we were very hopeful that he would have gained strength and improved after surgery.

Deepest sympathies to you and your family.

Hugs,
heather
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Oxeze/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 50 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

FlowersGal
Regular Member


Date Joined Feb 2017
Total Posts : 487
   Posted 5/30/2018 3:24 AM (GMT 0)   
I am really sad to learn this. I can't imagine the pain you and your family must feel. Like the others, I was hoping his surgery was successful and he was recovering. Thank you so much for coming here to let us know. What a guy, to think of us and want us to be updated. I really wish they could have saved him. My condolences to you and your family in your loss.
UC pancolitis DX March 2016, Partial Colectomy for diverticulitis Sept 2014
Apriso .375 g x 4/day, Canasa & Uceris foam as needed
Supplements: Zinc, L-glutamine, Probiotics: Reuteri pearls, VSL #3, Folic Acid, CoQ10, turmeric, boswellia, milk thistle, NAC, reservatol, colostrum, glycine
Started Entyvio 3/29/17 (Constant flares since March 2016 only relieved by Prednisone)
IN REMISSION!

jayce
Regular Member


Date Joined Nov 2007
Total Posts : 390
   Posted 5/30/2018 6:34 AM (GMT -6)   
I'm sorry for your loss.
I'm a reader here for years and wondered ,too , how the surgery went.
Condolences to you and all of Joseph's family and friends.
Mom to 29 year old daughter diagnosed 11/07 at 19
apriso 3 pills 3x's day, 6/14 4 PILLS 1X DAILY
purinethol 6mp=25mg daily,5/14 EVERY OTHER DAY
chewable vitamin

remicade (started 2/2011) stopped after second infusion-started cimzia- back on remicade stopped in august/2012-remission acheived.
1/14 flare, Simponi 3/14,simponi stopped after 3rd dose no change. Reinduction Remicade 6/19 methotrexa

buckeyecrohnie
Regular Member


Date Joined Apr 2014
Total Posts : 93
   Posted 5/30/2018 6:54 AM (GMT -6)   
This is so incredibly sad to hear this. By reading his posts Joseph was a strong person, and he certainly fought a good fight. I am glad that he wanted you to let this forum know about his situation. The people on here truly care.

You and your family have my deepest sympathy.
38 year old Female from the Buckeye State. Initally misdiagnosed Crohn's Oct 2013. 2nd opinion at Cleveland Clinic rediagnosed Severe Pancolitis/Ulcerative Colitis Jun 2014. 3 recurrences of C-DIFF Spring 2014. Fecal transplant May 2014. PSC diagnosis 2017.

Failed Meds: Asacol HD, Prednisone, Humira, Flagyl, Vanco, and Dificid
Step 3 J-pouch surgery finished: February 2015

momto2boys
Veteran Member


Date Joined Jun 2013
Total Posts : 1969
   Posted 5/30/2018 9:15 AM (GMT -6)   
My heart breaks for you and your family. I am so sorry for your loss.
42 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 2 Lialda + sfRowasa every other night- supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri) 1 gram krill Oil, 1TBSP p. seed powder, 2 g curcumin. Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16284
   Posted 5/30/2018 9:44 AM (GMT -6)   
You & your family have my deepest condolences with your loss. As you can see on this board he touched a lot of lives. Everyone here appreciates you posting about Joseph.
Susie
Moderator in Chronic Pain & Psoriasis Forums

beatUC
Veteran Member


Date Joined Mar 2010
Total Posts : 1438
   Posted 5/30/2018 10:58 AM (GMT -6)   
So sorry, such a sad story. Hugs & condolences to you & family.
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