Joseph's Passing

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Spring
Regular Member


Date Joined Jan 2017
Total Posts : 344
   Posted 5/30/2018 2:58 PM (GMT -6)   
Chiron/Joseph's difficulties really tugged at my heart and I thought about him quite a bit. I am so sorry to hear that his agony continued and ended without him finding relief. I watched my mother in love go through the incredible agony of MRSA infection, and when it was at its worst she just wanted to die to get away from the pain. I can't imagine him going through that on top of all the other pain he was enduring.
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hosp 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, Started Humira 12/15/17, reaction, Entyvio 1/12/18. Tapering Pred. 7.5mg/2.5mg now

newme22
Regular Member


Date Joined Sep 2017
Total Posts : 35
   Posted 5/30/2018 4:01 PM (GMT -6)   
So so sad. So sorry for your loss. Prayers sent for you and your family as you grief such a great loss.
Diag: New-10/25/17 Ulcerative pancolitis with rectal bleeding.
Diag: Original-UC rectosigmoiditis+diverticulosis
Hospital: Admitted 10/20/17 Started Remicade Discharged 10/23/17
Rx: Remicade 5mg/kg infusion every 6 weeks. Lialda 3 tabs daily

3timechamp
Veteran Member


Date Joined Oct 2009
Total Posts : 882
   Posted 5/30/2018 4:23 PM (GMT -6)   
WOW.Beyond sad.Prayers to you and your family

CCinPA
Veteran Member


Date Joined Dec 2014
Total Posts : 976
   Posted 5/30/2018 6:43 PM (GMT -6)   
This must be such a difficult time for you and your family. He had shared a few weeks ago that he was in really bad shape. So sad to read this. May peace be with you all.
58 yo female diagnosed w/UC to mid transverse 1/1/13, now UC or Crohn's colitis. Remission since 10/16, confirmed by scope in Dec 16. Current meds: Entyvio 7/22/16, Asacol HD 2 Tabs 3x/day, Capozide 1/day (hypertension). omeprazole. OTC: Loratadine 1/day, multivitamin 1/day.

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3608
   Posted 5/31/2018 7:49 AM (GMT -6)   
I'm so sorry too for the loss of you loved one and one of our family members here on this site, so sad to read. My you find strength to make it through this awful time.

C_G_K
Veteran Member


Date Joined Dec 2006
Total Posts : 1043
   Posted 5/31/2018 11:21 AM (GMT -6)   
I'm very sorry for your loss. My thoughts and prayers are with you and your family. I can't imagine how heartbreaking this must be for all of you.

Post Edited (C_G_K) : 5/31/2018 11:27:06 AM (GMT-6)


ewafromwarsaw
Veteran Member


Date Joined Jun 2013
Total Posts : 1233
   Posted 5/31/2018 4:06 PM (GMT -6)   
I'm unspeakably sorry to hear it, my deepest condolences
Ewa, 24 yrs old from Warsaw
Left-sided colitis, diagnosed in September 2012
Current meds: 2x2 Asamax (500 mg) and Salofalk enemas (twice a week)
Mutaflor or VSL#3

Canada Mark
Veteran Member


Date Joined Jan 2013
Total Posts : 3535
   Posted 5/31/2018 7:25 PM (GMT -6)   
I wanted to say thank you for finding the strength during such a difficult time to inform us. And to thank Joseph. The fact that he took the time to list instructions of who to contact and how to access this site demonstrates the seriousness of his condition at the time. Know that he has many faceless friends on here and will be missed by all.

songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3648
   Posted 6/1/2018 7:29 AM (GMT -6)   
Oh no! I am so, so sorry. I will hold your family in my thoughts.
Age 62. Diagnosed UP 1983, UC 1986
Step One surgery on 12/28/17.
Surgery: planned. The colon cancer they found: a surprise.
Prior meds: sulfasalizine, Asacol, Delzicol, Lialda,
6 MP, Humira, Metamucil
two hips replaced thanks to pred.
Bentyl as needed as of 8/31/17

DBwithUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4105
   Posted 6/1/2018 9:51 AM (GMT -6)   
Thanks for this sad news. Care for yourselves now.
11/08: ischemic colitis and scope perf colon. 12cm colon/ileocecal resected. IV antib:sepsis.
01/10: Dx: Mod. UC pancolitis. Rx: Lialda 3x.
02/11: Major flare w/antib:sinus. Rx: 40mg Pred taper. 6mp.
07/11: Histol remiss rt/trans; worse sigmoid. Rx: Rowasa & hydrocort
---
Curr: 1-2 soft-formed stool, no urgency: Lialda 2x, NO PRED, probiotics, Vit-D/C

notbob
Regular Member


Date Joined Jul 2016
Total Posts : 69
   Posted 6/1/2018 6:47 PM (GMT -6)   
I'm so sorry. He was a brave young man. He is in our thoughts and prayers. Please know that he is in a better place now.
UC for 10 years, last two+ had the never ending flare from hell. Tried the usual meds, pills, steroids, biologics, diet, supplements and nothing worked. Had perm ileostomy Feb of 2017. Feel great!

Chiron
Regular Member


Date Joined Jun 2015
Total Posts : 228
   Posted 6/12/2018 11:55 AM (GMT -6)   
I am back again. Joseph's funeral was very sad and he has now been put to rest. A lot of people showed up and the church was full. He asked to be cremated. Later this summer we will scatter his ashes at a family vacation spot that we visited our whole lives by the ocean.

We all understood the choices he made with his disease. It doesn't change how hard it is to make sense of this loss. Lately I have been reading some things about Ulcerative Colitis on the internet and it seems like a lot of this could have been avoided. The official cause of death was heart attack from toxemia. My parents have been in contact with Joseph's family doctor and she said that hospital infections are very common now. If it's not MRSA then it's Clostridium Difficile. The GP said that the longer you stay in the hospital the higher the chance of getting these things and if you're very weak they need to isolate you or you are at high risk. The cards were stacked against Joseph when he arrived there. Maybe that's why they took so long to try surgery.

I really believe it was his severe state combined with inadequate care that caused his death. When you're that far gone you need the best care and what he got was not the best. Yes I am a bit angry about how the doctors handled this. He should have maybe been put in a separate room after his surgery and not in a room with 4 other patients who had similar diseases. He should have had surgery as soon as he got there. He should have been given nutrition in his veins but they wouldn't do it.

What's done is done and my brother is gone. Thank you for the kind messages you wrote after I logged off last time. This forum seems like a kind place for people who are struggling and I can see why Joseph came here. Me and my parents talked about finding out if there is a walk for Ulcerative Colitis that we can raise money for and join. I don't think they have a walk here in Vancouver but maybe there is a city nearby we can drive to that has one. Right now the grief is very new but maybe down the road we can do that. It's one of the most difficult feelings in the world to want to turn to someone and then realize that they aren't in this world anymore. It makes my heart ache and it's like reliving it all over again every moment. It's a bit comforting to know that Joseph wrote a lot on the internet so there are pieces of who he was preserved somewhere.

I don't think I will come back here if that's okay, or if I do I will create my own ID. I am not a patient of Ulcerative Colitis and maybe that wouldn't be right though.

Thank you again.

C_G_K
Veteran Member


Date Joined Dec 2006
Total Posts : 1043
   Posted 6/12/2018 1:19 PM (GMT -6)   
Thanks for taking the time to post an update. Great idea about doing something positive in his memory. You might want to check out ccfa.org as it is a good place to get connected with advocacy related to IBD.

My impression is a lot of medical professionals are quite ignorant about Ulcerative Colitis, so anything we can do to raise awareness is good.

Again, sorry for your loss, and all the best to you and your family.

Post Edited (C_G_K) : 6/12/2018 4:39:54 PM (GMT-6)


Michelejc
Forum Moderator


Date Joined Jan 2011
Total Posts : 2126
   Posted 6/12/2018 1:23 PM (GMT -6)   
Chiron said...
I am back again. Joseph's funeral was very sad and he has now been put to rest. A lot of people showed up and the church was full. He asked to be cremated. Later this summer we will scatter his ashes at a family vacation spot that we visited our whole lives by the ocean.

We all understood the choices he made with his disease. It doesn't change how hard it is to make sense of this loss. Lately I have been reading some things about Ulcerative Colitis on the internet and it seems like a lot of this could have been avoided. The official cause of death was heart attack from toxemia. My parents have been in contact with Joseph's family doctor and she said that hospital infections are very common now. If it's not MRSA then it's Clostridium Difficile. The GP said that the longer you stay in the hospital the higher the chance of getting these things and if you're very weak they need to isolate you or you are at high risk. The cards were stacked against Joseph when he arrived there. Maybe that's why they took so long to try surgery.

I really believe it was his severe state combined with inadequate care that caused his death. When you're that far gone you need the best care and what he got was not the best. Yes I am a bit angry about how the doctors handled this. He should have maybe been put in a separate room after his surgery and not in a room with 4 other patients who had similar diseases. He should have had surgery as soon as he got there. He should have been given nutrition in his veins but they wouldn't do it.

What's done is done and my brother is gone. Thank you for the kind messages you wrote after I logged off last time. This forum seems like a kind place for people who are struggling and I can see why Joseph came here. Me and my parents talked about finding out if there is a walk for Ulcerative Colitis that we can raise money for and join. I don't think they have a walk here in Vancouver but maybe there is a city nearby we can drive to that has one. Right now the grief is very new but maybe down the road we can do that. It's one of the most difficult feelings in the world to want to turn to someone and then realize that they aren't in this world anymore. It makes my heart ache and it's like reliving it all over again every moment. It's a bit comforting to know that Joseph wrote a lot on the internet so there are pieces of who he was preserved somewhere.

I don't think I will come back here if that's okay, or if I do I will create my own ID. I am not a patient of Ulcerative Colitis and maybe that wouldn't be right though.

Thank you again.


You are welcome here anytime you want. If you need support, we are here.
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 -

hateuc
Veteran Member


Date Joined Jun 2010
Total Posts : 2353
   Posted 6/12/2018 2:07 PM (GMT -6)   
Whatever you choose to do is totally understood. Feel free to come back here anytime, you are more than welcome. Best wishes as you begin the healing process.
B

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4201
   Posted 6/12/2018 3:37 PM (GMT -6)   
I am so incredibly sorry for your loss, and to hear that it partially resulted from incompetent medical care on the part of the doctors and nurses entrusted to his care. My thoughts are with you.
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: mild-to-moderate chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018.
Current meds: Delzicol, 6, 2xday; Rowasa nightly; singular and Allegra for allergies; Xanax.

Fletch10
Regular Member


Date Joined Feb 2017
Total Posts : 222
   Posted 6/12/2018 9:58 PM (GMT -6)   
Your perspective is valuable, and welcomed here. I am so very sorry for your loss - and completely relate to what you say about wanting to tell someone something when they're gone. My father passed away 14 years ago after a long, serious illness, and I still feel that way often. You are in my thoughts!
--
F, 40. Diagnosed Feb. 2017 - left-sided UC.
Finally off prednisone as of 5/15! Remicade 5mg/kg every 4 weeks.
Mesalamine intolerant (Rowasa, Colazal)
Remission as of fall 2017; mild flare March 2018
Zoloft; mostly dairy free.

C_G_K
Veteran Member


Date Joined Dec 2006
Total Posts : 1043
   Posted 6/13/2018 7:29 AM (GMT -6)   
Actually, a better resource for you might be:

http://www.crohnsandcolitis.ca/
DX Ulcerative Pancolitis 2003. Subsequent flares limited mostly to left side
Flare every 2-3 years that is bad enough to require Pred.
9x Salofalk tabs, Sulfa free Rowasa nightly and Canasa each morning
Probiotics: Florastor Fiber: Psyllium.

Back in remission after getting rid of c-diff with Vanco, and a quick blast of Prednisone to cool things down.

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 2133
   Posted 6/13/2018 3:23 PM (GMT -6)   
Devastating news!..my thoughts are with you.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

U.C.Me?
New Member


Date Joined Jun 2018
Total Posts : 18
   Posted 6/18/2018 1:55 PM (GMT -6)   
So sorry for your loss. Praying for you and your family.
Currently: Dairy-free SCD, Probiotics, Digestive Enzymes, Multi-vitamin.
Mom of two

"The real things haven't changed. It is still best to be honest and truthful, to make the most of what we have; to be happy with simple pleasures, and to have courage when things go wrong." ~ Laura Ingalls Wilder
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