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Author Topic: ulcerative colitis support forum like aidsmeds forum?  (Read 4623 times)

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Offline forrest

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  • Posts: 163
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

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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 pescaνto frito."

Offline forrest

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  • Posts: 163
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

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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: Biktarvy. 
Last regimen:  Atripla (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

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  • Posts: 163
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

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  • Posts: 1,350
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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

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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


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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.
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Offline BT65

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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.
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Offline anniebc

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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.

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Offline Rev. Moon

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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

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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

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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

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  • Posts: 163
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

 


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