Quantcast

Subscribe to:
POZ magazine
Newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr Instagram
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
November 23, 2014, 08:48:37 AM

Login with username, password and session length


Members
Stats
  • Total Posts: 646945
  • Total Topics: 49285
  • Online Today: 167
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 2
Guests: 139
Total: 141

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: ulcerative colitis support forum like aidsmeds forum?  (Read 1932 times)

0 Members and 1 Guest are viewing this topic.

Offline forrest

  • Member
  • Posts: 162
ulcerative colitis support forum like aidsmeds forum?
« on: June 13, 2012, 09:46:27 PM »
Hey guys

I found out this past Saturday that my cousin who I am very close to has ulcerative colitis.  He's been dealing with it since 2007, however, in January, he decided to stop taking meds and do things holistically.  He's gone from 150 pounds to 95 pounds. He's in serious condition per his dad and I've recently been trying to communicate with him as I had lost touch with him over the past 6 years.

He's always been my favorite cousin and he's always respected me.  He's actually 16 years younger than me.  What's totally got my mind in anxiety mode is that for the first time yesterday, he went into the doctor as a walk-in. He's refused medical treatment for months I guess. The doc wanted to admit him due to his severe weight loss and malnutrition, etc.  Run tests etc. to make sure nothing more serious.  He refused treatment and signed a document for non compliance.

He said that he doesn't trust the hospitalization route and doesn't know what to do.

It completely befuddles me how he would not seek treatment.  He has lost his job due to this, per his own words is nearly bedridden, has no insurance (but his dad is getting him hooked up with that through assistance for those not employed, etc. etc.

I am going to disclose with him about my hiv. I can come at him from a different angle than his parents. As in, like with HIV, you have to take meds. Otherwise, you die. His malnutrition scares me because I suspect his immune system is probably taking a toll.

Anyway, without going into any more detail... what I was hoping is that maybe someone out there in this forum may know of another forum like this one that is heavily used with traffic that I could refer him to.  That is the sole intent of this post is to see if any of you are familiar with such a site. 

I just want to do anything I can to help him.  Thanks a lot!

2011-03-26:  Tested Positive

Date           |VL        |CD4 |4%  |CD8 |8%  |C4:C8
2011-04-06 |48,653 |603 |32.0 |646 |35.0 |0.61
2011-05-23 |64,324 |577 |36.0 |576 |36.0 |1.00
2011-08-02 |18,319 |574 |36.3 |587 |37.2 |0.98
2011-12-06 |10,375 |480 |30.1 |616 |38.7 |0.78
2012-02-22 |  9,674 |570 |33.6 |655 |38.7 |0.87
2012-05-04 |  8,439 |559 |30.4 |706 |38.4 |0.79

Offline OneTampa

  • Member
  • Posts: 2,295
  • "Butterflies are free."
Re: ulcerative colitis support forum like aidsmeds forum?
« Reply #1 on: June 13, 2012, 10:20:51 PM »
Forrest,

Sorry to hear about your cousin. I wish him well.

You may try looking at this UC forum as it appears to have a fair amount of traffic: http://www.healingwell.com/community/default.aspx?f=38

Best.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline forrest

  • Member
  • Posts: 162
Re: ulcerative colitis support forum like aidsmeds forum?
« Reply #2 on: June 13, 2012, 10:59:14 PM »
Thank you! I've been looking too now as well myself.. and this one appears to have excellent traffic: 

http://www.crohnsforum.com/forumdisplay.php?s=cc86735dbbb0df2a65da220ee19a3f3c&f=69

It's a forum on the Chrohn's site for UC.

In reading a little bit through THAT forum.. reminds me of what has become my home here.  :)

I hope he will be open to listen to me as while his and my issues are miles apart... there are commonalities and he can lean against me from things I have learned and hopefully we can help each other. That is my hope. 

I am so nervous for him because from the little I know right now, I worry that he is in denial. :(  I'm not sure. I'm not sure why he would deny medical treatment when from my point of view, this is turning life threatening with that much weight loss, the malnurishment, etc.  Very sad.

2011-03-26:  Tested Positive

Date           |VL        |CD4 |4%  |CD8 |8%  |C4:C8
2011-04-06 |48,653 |603 |32.0 |646 |35.0 |0.61
2011-05-23 |64,324 |577 |36.0 |576 |36.0 |1.00
2011-08-02 |18,319 |574 |36.3 |587 |37.2 |0.98
2011-12-06 |10,375 |480 |30.1 |616 |38.7 |0.78
2012-02-22 |  9,674 |570 |33.6 |655 |38.7 |0.87
2012-05-04 |  8,439 |559 |30.4 |706 |38.4 |0.79

Offline Solo_LTSurvivor

  • Member
  • Posts: 1,176
  • Twerk Baby Twerk
Re: ulcerative colitis support forum like aidsmeds forum?
« Reply #3 on: June 13, 2012, 11:14:12 PM »
Forrest you can also take a look at the main conditions page for a site that's probably similar to the one 1TPA recommended here

Under digestive and intestinal they have sub forums for Crohn's and IBS.  From what I could see on the landing page, the Crohn's site only had 419 members and the IBS had a little over 1913.... Might be worth taking a look at?
don't equate intelligence with lack of masculinity
Jim Phelps, Mission Impossible
____________________________

Seroconverted: Early 80s
Tested & confirmed what I already knew: early 90s

Current regimen: Atripla. 
Last regimen:  Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky ::))
Past regimens
Fun stuff (in the past):  HAV/HBV, crypto, shingles, AIDS, PCP

Jan 2012: 818/21%
Apr 2012: 964/22%
Jul. 2012: 890/21%
Oct. 2012: 920/23%

Still UD after all these years

Offline forrest

  • Member
  • Posts: 162
Re: ulcerative colitis support forum like aidsmeds forum?
« Reply #4 on: June 13, 2012, 11:19:43 PM »
Thanks Solo! I hadn't run across that one. I am collecting these so I can give to him.

Those of us on here can appreciate the amount of support that you can gain from coming to a place where others are going through the same sorts of things as you.  We all get that - thus, why we are here.

I just really hope I can get through to him. I am being patient with him to allow him to move at his pace. In the meantime, i am educating myself and gaining info for him. 

Thanks again all.
2011-03-26:  Tested Positive

Date           |VL        |CD4 |4%  |CD8 |8%  |C4:C8
2011-04-06 |48,653 |603 |32.0 |646 |35.0 |0.61
2011-05-23 |64,324 |577 |36.0 |576 |36.0 |1.00
2011-08-02 |18,319 |574 |36.3 |587 |37.2 |0.98
2011-12-06 |10,375 |480 |30.1 |616 |38.7 |0.78
2012-02-22 |  9,674 |570 |33.6 |655 |38.7 |0.87
2012-05-04 |  8,439 |559 |30.4 |706 |38.4 |0.79

Offline spacebarsux

  • Member
  • Posts: 1,350
  • Survival of the Fittest
Re: ulcerative colitis support forum like aidsmeds forum?
« Reply #5 on: June 14, 2012, 01:09:27 AM »
Hey Forrest,

I am going to disclose with him about my hiv. I can come at him from a different angle than his parents. As in, like with HIV, you have to take meds. Otherwise, you die. His malnutrition scares me because I suspect his immune system is probably taking a toll.

Just wanted to say that from a purely emotional angle ^^ this maybe a good idea. For the both of you. It will give you and your cousin someone to talk with about the serious diseases that both of you have, even though they're different.

It could give him strength in the sense that 'he is fighting his ailment and so can I'.
« Last Edit: June 14, 2012, 01:16:27 AM by spacebarsux »
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline red_Dragon888

  • Member
  • Posts: 2,811
  • Love and Be Love in Return
Re: ulcerative colitis support forum like aidsmeds forum?
« Reply #6 on: June 14, 2012, 09:48:05 AM »
Have you tried a Google Search: ulcerative colitis forum support


Ads related to ulcerative colitis forum supportWhy these ads?
Ulcerative Colitis | treating-uc.com
www.treating-uc.com/
Get Free Support Help For Your Ulcerative Colitis Treatment.
Ulcerative Colitis Support | ccfa.org
www.ccfa.org/
Get Up To Date Information About Ulcerative Colitis From the Source!
Ulcerative Colitis Info | MaintainUCRemission.com
www.maintainucremission.com/
Learn About Ulcerative Colitis Symptoms and Maintaining Remission.
Search Results
I Have Ulcerative Colitis | Support Group with Personal Stories ...
www.experienceproject.com › Groups › Health and Wellness
Do You Have Ulcerative Colitis? Join 217 friendly people sharing 103 true stories in the I Have Ulcerative Colitis group. Find support forums, advice and chat ...
Crohn's Disease Forum - Support group and forum for IBD ...
www.crohnsforum.com/
A Crohn's Disease, IBD, and Ulcerative Colitis support forum for patients, doctors, and family members.
Your Ulcerative Colitis Support forum - Crohn's Disease Forum ...
www.crohnsforum.com › ... › Ulcerative Colitis Forum
3 posts - 1 author - May 16, 2011
We've decided to create a dedicated Ulcerative Colitis support forum as people with UC tend to get drowned in the sea of Crohn's folks here.
Help, can Ulceratve Colitis cause nose bleeds?‎ - 4 posts - Jun 5, 2012
How long does an Ulcerative Colitis flareup last?‎ - 10 posts - May 8, 2012
Leukocytapheresis for Ulcerative Colitis‎ - 2 posts - Apr 8, 2012
Ulcerative Colitis Cured - Crohn's Disease Forum ...‎ - 7 posts - Jun 2, 2011
More results from crohnsforum.com »
Ulcerative Colitis - HealingWell.com Forum
www.healingwell.com › ... › Diseases & Conditions
Chat | Search | Help. Ulcerative Colitis. Forum Rules | Moderators | Password Help · HealingWell.com Forum > Diseases & Conditions > Ulcerative Colitis ...
Crohn's Disease & Ulcerative Colitis Forum - DailyStrength
www.dailystrength.org/c/Crohns-Disease-Ulcerative-Colitis/forum
Discuss Crohn's Disease & Ulcerative Colitis with others who understand what ... Forum - Crohn's Disease & Ulcerative Colitis Support Group - DailyStrength ...
Crohn's Disease / Ulcerative Colitis Help - Forums and Discussions ...
www.medhelp.org/forums/Crohns-Disease---Ulcerative-Colitis/.../178
Mar 29, 2009 – MedHelp's Crohn's Disease / Ulcerative Colitis Help Forum. This forum is for help, questions and support regarding Crohn's Disease / Ulcerative Colitis.
Crohn's Colitis Forum- Chronic Digestive Diseases - Forums and ...‎ - Feb 27, 2011
Colitis Help - Forums and Discussions - MedHelp‎ - Mar 29, 2009
More results from medhelp.org »
Inflammatory Bowel Disease: Crohn's Disease and Ulcerative Colitis ...
www.ibdsupport.org/forums/forum/77-inflammatory-bowel-disease-...
May 31, 2011 – Inflammatory Bowel Disease: Crohn's Disease and Ulcerative Colitis:
Google- Takeda drug impresses in ulcerative colitis study ...‎ - May 22, 2012
New Diagnosis - Ulcerative Colitis‎ - Apr 13, 2012
Pubmed- Management of acute, severe ulcerative colitis.‎ - Jan 20, 2012
Crohn's Disease, Ulcerative Colitis and Fistula forums moving to ...‎ - Mar 10, 2011
More results from ibdsupport.org »
AnswersIn Ulcerative Colitis - IBS Self Help and Support Group ...
www.ibsgroup.org/forums/topic/134781-answersin-ulcerative-colitis/
Jan 18, 2011 – Notice: The IBS Self Help and Support Group has not endorsed and makes no warranty as to the accuracy of the information contained within ...
Ulcerative Colitis Forums
www.mdjunction.com/forums/ulcerative-colitis-discussions
4 posts - 4 authors - Mar 3
Ulcerative Colitis Support Group. Ulcerative Colitis Online Support Group. A community of ... UC Community UC Support Forums. UC Support ...
Vitamin E Enema & Diet For Ulcerative Colitis Support Forum, Page ...
[blocked URL] › Forums
811 messages, 40 topics, topics per page limited to: 7, average number of messages per page: 162, 5 pages, 450392 page views "It is better to be hated for ...
http://www.youtube.com/watch?feature=player_embedded&v=I3ba3lnFHik

“Neither look forward where there is doubt nor backward where there is regret. Look inward and ask not if there is anything o

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,050
Re: ulcerative colitis support forum like aidsmeds forum?
« Reply #7 on: June 15, 2012, 04:59:29 AM »
The above post is a bit of google overkill don't you think.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline anniebc

  • Member
  • Posts: 5,951
  • AM member since 2003
Re: ulcerative colitis support forum like aidsmeds forum?
« Reply #8 on: June 16, 2012, 04:40:07 AM »
The above post is a bit of google overkill don't you think.

Overkill doesn't come close Betty....good grief.

Aroha
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline Rev. Moon

  • Member
  • Posts: 3,782
  • Smart ass faggot ©
Re: ulcerative colitis support forum like aidsmeds forum?
« Reply #9 on: June 16, 2012, 11:30:13 AM »
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline denb45

  • Member
  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Re: ulcerative colitis support forum like aidsmeds forum?
« Reply #10 on: June 16, 2012, 12:21:30 PM »
Sometimes Google isn't your friend  :-X
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline LM

  • Member
  • Posts: 409
Re: ulcerative colitis support forum like aidsmeds forum?
« Reply #11 on: June 16, 2012, 12:35:13 PM »
I was recently diagnosed with that. Just my luck. But I'm nowhere near that, I'm just having a lot mucus discharge with rectal inflammation. It's a bitch.

Offline forrest

  • Member
  • Posts: 162
Re: ulcerative colitis support forum like aidsmeds forum?
« Reply #12 on: June 19, 2012, 12:35:39 AM »
@LM, sorry to hear that. It doesn't sound like it's a very pleasant thing to go through if untreated.  From what I am gathering, he is at the Fulminant disease stage.  I am trying to get him to open up to me. While we share illnesses that are completely different from one another, i really believe that we are probably going through a lot of similar feelings actually.  I feel bad for him, but also can't force him to open up.

I have done some searching and did find a forum that helped educate me some.  It also appears to be a heavily trafficked site.  Maybe you would find it helpful as well:  http://www.crohnsforum.com/forumdisplay.php?s=cc86735dbbb0df2a65da220ee19a3f3c&f=69

While I do agree that red's post was google overkill... I can't fault him for trying to help.  He didn't have to do a google search nor did he have to post the results.  So, I thank him for his efforts and the thoughtfulness.  :)

My cousin just emailed me today... said that he feels like processing through all of this on his own.... I said that I "live" in a forum for my own issue and that it's been very helpful.  While I can appreciate him wanting to process on his own, there is also benefit to seeking out help in a place like this.  So hopefully that line of communication remains. I have not disclosed to him at this point but have put some things out there for him to ponder. 

Anyway... thanks again! Appreciate it. 
2011-03-26:  Tested Positive

Date           |VL        |CD4 |4%  |CD8 |8%  |C4:C8
2011-04-06 |48,653 |603 |32.0 |646 |35.0 |0.61
2011-05-23 |64,324 |577 |36.0 |576 |36.0 |1.00
2011-08-02 |18,319 |574 |36.3 |587 |37.2 |0.98
2011-12-06 |10,375 |480 |30.1 |616 |38.7 |0.78
2012-02-22 |  9,674 |570 |33.6 |655 |38.7 |0.87
2012-05-04 |  8,439 |559 |30.4 |706 |38.4 |0.79

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.