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Gay/Lesbian/Bisexual/Transgender & Straight Allies Support Group

Have you heard of the exciting QU Biologics Crohn's trial in Vancouver? I wish i was closer because it sounds so promising.
No! I hadn't heard of it but I will definitely look into right now - thanks for the hint!

*quickly changes into tights in phone booth, and she's off to google*
 

nogutsnoglory

Moderator
Sigh. Wish there was a dating site for LGBT with disabilities. I swear if I knew how to make websites I think id create one because the demand has got to be there.
 
No! I hadn't heard of it but I will definitely look into right now - thanks for the hint!

*quickly changes into tights in phone booth, and she's off to google*
I chatted with one of the participants. Late starts were not very long-term, and thus didn't get the benefit of the entire study. Some benefitted from the meds, some didn't, as is usual with Crohn's. It kind of underlines most people's thoughts about Crohn's being a myriad of diseases with similar symptoms, all bunched together due to a lack of proper scientific studies into cause.

What has been very very interesting is the genetic connections to folation cycles and processing. Many people are discovering that mutations in DNA bring enzyme and amino acid faliures, which in turn cause undesireable chains of events. Depending on how strong or weak the rest of the body is, how your immune system is doing, your diet, and many other factors... this chain of chemistry and reaction can destroy protective linings, cause the body to attack itself, and many other Crohn's related problems.

Never give up looking for the cause. Genetics is making new breakthrough's all the time.

Right now MillenniumPGT is doing a MAPP test that determines how you react to drugs and certain enzyme functions. Mine was free, so depending on your insurance, ask at the primary care doctor and see if the test is available. Mine showed that my complete folate cycle is out of order, and that the enzymes and amino acids for processing things is also out of order. Between these two, all the symptoms I have can be explained. The fix is now to avoid certain foods, supplement the missing amino acids or enzymes, and monitor blood closely to be able to react to the changes my body presents.

I have high hopes, but I always have high hopes.
 

nogutsnoglory

Moderator
Durwardian have you seen my signature on the free genetic testing by 23andme? They test 600,000 SNP's including folate mutations. I have the MTHFR mutation and have been doing better since I discovered that and switched to bio active forms of b12 as methylcobalamin and folate as L-methylfolate.
 
Durwardian have you seen my signature on the free genetic testing by 23andme? They test 600,000 SNP's including folate mutations. I have the MTHFR mutation and have been doing better since I discovered that and switched to bio active forms of b12 as methylcobalamin and folate as L-methylfolate.
Signature? No, not sure what you mean. I thought 23andme was no longer doing business? The last test was free, which is now the only way I can do things. My health has ruined me. The rotten corporate insurances and pharmacy giants came and burned my village to the ground, leaving nothing behind.
 
And..... you spoke too soon. As usual, the State that refused to accept equality of African Americans, now is refusing to bow to the Federal Judge. A couple of people got Justice of The Peace marriages. But the offices that were supposed to issue licenses just stayed closed today in protest of the law.
When are we going to cut off a few States from the United States of America? I think we should start with Alabama. Inbreeding is showing...
 

nogutsnoglory

Moderator
Some of the counties are issuing while others aren't. Its a mess because the chief justice is overstepping boundaries and violating the law.
 
Hi all! I'm Graham, I'm from Rhode Island, I'm gay. *waves*

....I feel like there's more I should say but I'm just gonna leave it at that. (I said on my other introductory post that I'm bad at talking about myself and I stand by that. :p)
 
Hey there!
I thought I'd pop in here and introduce myself, though I've already been around the other forums a bit.

Name's Izzie. Gay girl. Hiatus hernia, GERD, bile reflux and some yet to be diagnosed IBD/IBS/who knows what.

Hope you're all doing well!
 

nogutsnoglory

Moderator
Welcome Graham & Izzie, how are you guys? Welcome to our forum. Take a look around and feel free to bring up any topics that may be relevant to you.
 
Hello I'm alyssa but I like to be called aly. I'm a 28 year old lez. I have severe fistulized Crohn's disease and colitis. Currently on Cimzia and prednisone because in the five years I've been sick I just can't catch a break. I hope to make some new friends here that know how it feels.
 

nogutsnoglory

Moderator
Hi Aly, welcome to our section of the forum! I'm sorry to hear that you've been struggling I know how awful fistulas can be. If Cimzia isn't helping might they try remicade if you haven't already? Remicade is the big guns for fistulas.
 
Yes that was the first one they put me on and after 6 months I had a severe allergic reaction and had cardiac arrest. Needless to say I'm traumatized lol
 

nogutsnoglory

Moderator
Oh gosh that's so scary. It's crazy how one drug is a miracle for one and a nightmare for the other. They have a few options now so if this continues to fail maybe there are other options. Is that your girlfriend in the pic? How are you navigating the relationships side with IBD?
 
It's is. It's very tough because when the disease is severe it doesn't just affect me. We've been together three years and it's been a real struggle.
 

Lisa

Adminstrator
Location
New York, USA
Welcome all new members to this support group!

If anyone in the NY area will be attending the Empire State Pride Agenda event in Albany, NY please feel free to drop me a note and we can say hello.....I will be working in the area and would love to meet to put faces to screen names!
 

nogutsnoglory

Moderator
I'd love to Lisa, it's so hard for me to get around because of the fatigue. If I do get to it which is unlikely I'd love to meet you.
 
Welcome Aly! I hope you can find some relief. I finally had to have surgery to remove the fistulas. Much better now!
 

nogutsnoglory

Moderator
Glad you're doing better Kit. Fistula surgery is tricky but I'm very pleased to hear you think it's on the right track and not a fistula track!
 

nogutsnoglory

Moderator
Anesthesiologist trash talks crohns patient during colonoscopy and the man won a $500,000 law suit. They called him "gay", wanted to punch him, called him an idiot among other things.


http://www.washingtonpost.com/local/anesthesiologist-trashes-sedated-patient-jury-orders-her-to-pay-500000/2015/06/23/cae05c00-18f3-11e5-ab92-c75ae6ab94b5_story.html

It's really messed up and disturbing but 500k really? The woman should be fired and there should be some way of making it up to him but that's excessive.
 

UnXmas

Banned
Anesthesiologist trash talks crohns patient during colonoscopy and the man won a $500,000 law suit. They called him "gay", wanted to punch him, called him an idiot among other things.


http://www.washingtonpost.com/local/anesthesiologist-trashes-sedated-patient-jury-orders-her-to-pay-500000/2015/06/23/cae05c00-18f3-11e5-ab92-c75ae6ab94b5_story.html

It's really messed up and disturbing but 500k really? The woman should be fired and there should be some way of making it up to him but that's excessive.
I'm seriously considering recording my doctors appointments. It would not surprise me at all if some of the doctors I've seen said completely unprofessional things when they knew I'd have no memory/awareness of them. I don't think this patient deserved $500,000 for his experience, but a figure like that may mean other doctors think twice about doing similar things.
 

nogutsnoglory

Moderator
I'm surprised it was legal for him to record. I think in most places this would be deemed illegal. It should be perfectly legal because they should only be doing their job but the law is complex.
 
Going to my first pride event on Saturday , can't wait. Tummys been a bit cranky this week as I am due my infliximab. Hope they have lots of loos :)
 

nogutsnoglory

Moderator
Beach bum I hope you feel better and have lots of fun. I always try to go but the bathroom situation scares me. It depends on where you live some prides are only a few thousand people and some are up to 3 million!

I always prep with Imodium before and I have my crohns bathroom card ready and spot out the bathrooms. Most places don't let parade watchers use the facilities unless they are customers so the card is handy. The parade or festival probably has portable potties but the line might be long and those are gross anyway.
 
Glad you're doing better Kit. Fistula surgery is tricky but I'm very pleased to hear you think it's on the right track and not a fistula track!
It was actually a colon resection, but he had to get the fistulas/abscesses too! He did a fantastic job! That was in 2012, and still doing well except for fatigue.

:-(
 
It's is. It's very tough because when the disease is severe it doesn't just affect me. We've been together three years and it's been a real struggle.
You give me hope that I will find someone who will be willing to go through things with me. Glad to see that you've both been together for 3 years. I know that is my worry about entering in a relationship. I worry about how it may affect the other person. There are people out there that are willing to understand and be there when you need it most. By the way, I am Wade, diagnosed 4 and a half years ago. Nice to meet you! :hug:
 
Hi all! I'm Graham, I'm from Rhode Island, I'm gay. *waves*

....I feel like there's more I should say but I'm just gonna leave it at that. (I said on my other introductory post that I'm bad at talking about myself and I stand by that. :p)
Good to see someone I recognize from the IBD community on Tumblr. Welcome Graham to the Crohnsforum. :bigwave: Yes, ice breakers are not always the easiest, I agree. :dance:
 
I just thought I'd pop in to say hi I'm also from the Manchester area (but I've spent the last year in Spain, and I'll be going back next month) and gay.

It's been a while since I've been around here, but I've just found out I've got a few ulcers after my surgery last year so I'm due to start mercaptopurine again next week... No mention of any prednisolone yet, but I think that goes almost without saying. I'm pretty annoyed by it all really.
 

nogutsnoglory

Moderator
Welcome portableafternoon. Are the ulcers scarring from surgery or unrelated? Sorry to hear that.

We have quite a few lgbt patients here from Manchester it seems. As an American I have no idea if that's a city or large territory but it seems to have a lot of gay crohnies :)
 
Welcome portableafternoon. Are the ulcers scarring from surgery or unrelated? Sorry to hear that.

We have quite a few lgbt patients here from Manchester it seems. As an American I have no idea if that's a city or large territory but it seems to have a lot of gay crohnies :)
I guess it's because of the surgery - I suppose they'll tell me more when I go tomorrow - there's obviously not much point in going into details with someone under sedation. I'm slightly annoyed about being immunosuppressed because I'll be working with kids next year, and I imagine there will be germs flying around like nobody's business - it was hard enough being on 6MP when I was in uni and feeling like I had a never ending cold. I've had a few days to get used to the idea of going back on medication - my symptoms are almost non-existent, but I know that if I don't do anything, everything will just get worse, and that's all there is to it.

Manchester's actually the city where the original version of Queer as Folk was set - and Russell T. Davies' new series Cucumber and Banana. I've not seen the latter two, but if you've not seen the British version of QAF, it's worth a watch! I'm from just outside the city, but it's where I go if I get the chance to go out dancing when I'm home (and I'll be at Manchester Pride this weekend).
 
Queer as folk was always a big favorite of mine and the new Cucumber and Banana were amazing, have a great time at Pride !
 
Queer as folk was always a big favorite of mine and the new Cucumber and Banana were amazing, have a great time at Pride !
I'm going to give them a go before I go back to Spain! I was going to watch them while they were on, but I was already focusing on Girls and Looking, and two more would have been too much hard work :ylol:
 
Hi - gay, crohns, Dublin, Ireland here... Just saying hi, a first for me here. Another first I did today - googling Crohn's and seton images, not sure if the nausea is from the results or the illness :p
 
Hi all! First time poster here. I'm originally from San Francisco (mecca!) but currently living in Canada for school. I was diagnosed with Crohn's in 2010 when I was 20. At the same time I was dealing with my own internalized homophobia...so I had both physical pain and the mental pain throughout college from different reasons. It inevitably drove me down into a very dark place. In January of that very year, I attempted to commit suicide by walking into Lake Michigan (went to school in Chicago). I ended up washed up on the shore and hospitalized, where they did a colonoscopy/upper endoscopy and discovered ulcers in my intestines and an inflamed duodenum that was causing the anemia and fatigue I constantly felt. They put me on pred and then into 6-mp (mercaptopurine) and I instantly got better. After that point I decided to come out, which ended up being of a more doubling coming out for me, since I wasn't really attracted to guys my age or my size (note at that point I was an emaciated 115 lbs and 6 feet tall, I just hit 200lbs last week). I joined the local bear community in my area. I started to exercise and take vitamin D supps. I got so, soooooo much better by simply doing that. After about a year on 6-mp I had several bad flares and two obstructions in my small intestine that led me to be hospitalized again, and after that I was put on infliximab. I've been on Remicade for 4 years now and it has driven my Crohn's into a great remission. After coming out I've finally been able to live my life the way I've wanted to. I am thrilled that there is a community for us! It's nice to see other LGBT Crohnsians out there :)
 
Welcome Greenstriker! I am so glad to hear you are on a better path both mentally and physically! Thanks for sharing your story.
 
Hi all! First time poster here. I'm originally from San Francisco (mecca!) but currently living in Canada for school. I was diagnosed with Crohn's in 2010 when I was 20. At the same time I was dealing with my own internalized homophobia...so I had both physical pain and the mental pain throughout college from different reasons. It inevitably drove me down into a very dark place. In January of that very year, I attempted to commit suicide by walking into Lake Michigan (went to school in Chicago). I ended up washed up on the shore and hospitalized, where they did a colonoscopy/upper endoscopy and discovered ulcers in my intestines and an inflamed duodenum that was causing the anemia and fatigue I constantly felt. They put me on pred and then into 6-mp (mercaptopurine) and I instantly got better. After that point I decided to come out, which ended up being of a more doubling coming out for me, since I wasn't really attracted to guys my age or my size (note at that point I was an emaciated 115 lbs and 6 feet tall, I just hit 200lbs last week). I joined the local bear community in my area. I started to exercise and take vitamin D supps. I got so, soooooo much better by simply doing that. After about a year on 6-mp I had several bad flares and two obstructions in my small intestine that led me to be hospitalized again, and after that I was put on infliximab. I've been on Remicade for 4 years now and it has driven my Crohn's into a great remission. After coming out I've finally been able to live my life the way I've wanted to. I am thrilled that there is a community for us! It's nice to see other LGBT Crohnsians out there :)
It seems there is quite a bit of parallels between the two of us. I was also diagnosed back in 2010 at 20 years old. The first medication that seemed to work for me was Mercaptopurine and I am still on 6-mp as I am typing this. I came out to my family at the age of 21 as being bisexual and regardless of how anyone feels about it, I have come to terms with being happy with myself and who I am. I was diagnosed on December 31, 2010. Very nice to meet you. ~Wade :hug:
 

nogutsnoglory

Moderator
Anyone else on immunosuppresants and afraid to go on a date, make out and get germs from someone which can send our IBD into a flare? I realize we need to live our lives but it scares me
 
Anyone else on immunosuppresants and afraid to go on a date, make out and get germs from someone which can send our IBD into a flare? I realize we need to live our lives but it scares me
I am married and on a biologic, but I have become a bit of a germaphobe. My husband is good at getting his flu shot and washing his hands for me. I can see where dating could pose a problem. I even get nervous shaking someones hand, especially when I know they have been coughing and such. So I can understand your concern. I am not sure how rational all my fears are, but it has kept me healthy.
 

nogutsnoglory

Moderator
I am married and on a biologic, but I have become a bit of a germaphobe. My husband is good at getting his flu shot and washing his hands for me. I can see where dating could pose a problem. I even get nervous shaking someones hand, especially when I know they have been coughing and such. So I can understand your concern. I am not sure how rational all my fears are, but it has kept me healthy.
This disease makes us a bit paranoid. I sometimes use hibiclens wash if I'm going out so i don't touch anything that will get me sick.
 

nogutsnoglory

Moderator
Welcome Emma this is a fantastic support and resource. We are a friendly bunch and no question is too much on this forum. Crohns can be pretty nasty so don't be shy with questions.
 
Hey everyone! I havnt been on here in two years eek! But I remembered coming in here at like age 12/13 being a bit confused about if I was asexual or if I just hadnt really found someone I felt things for. Now age 16 I have been out as a Lesbian for over 2 years! So thought id update you all, not that this group looks very active haha. Hope everyone is well!
 

emmaaaargh

Moderator
Staff member
Welcome back, Ki3! As I was reading your post I realised that I did exactly the same thing - I thought I was just asexual until I realised I was a lesbian about a year and a half ago! Hope you're doing well :)
 
Hi!
First time posting in this group. My name is Maggie and I am a 36 year old straight- though strong LGBT allie.

I need some encouragement or just some "I feel the same way."

I just got dumped for "not being affectionate" when I am sick.

I think I am a cute, smart girl and I have a steady job but I feel like Crohn's adds this huge amount of baggage to me.

Is there hope? I feel like I have the plague, in a sense. Anyone meet their partner after diagnosis? How did you meet?

I am trying to not give up but you know, that is kind of what people say when hope is pretty much gone.

Gay or straight experiences welcome and thank you for "listening."
 
Yes I've definitely found that illness does affect relationships more than people realise. I had a girlfriend who acted all supportive and as if it never bothered her, but she got angry at me for "ignoring" her when I was very sick on holiday. I wasn't ignoring her, but actually just crippled with pain and constantly vomiting while waiting for the ambulance to arrive, but apparently I was ignoring. Makes me laugh haha. But since then I did meet a girl who was very good with it all, she was generally a laid back calm person so there was never "fuss" made which I really liked, but she understood if I didn't feel well and was happy to let me lay and watch movies with her and not go out anywhere and she didn't expect me to eat much if I couldn't handle it. Sadly the relationship ended for other reasons, but she has showed me that it is possible to have crohns and be in a relationship without the illness ruining everything :) so I guess you have to hang in there and hope that you'll find the perfect someone soon!
 
Yes I've definitely found that illness does affect relationships more than people realise. I had a girlfriend who acted all supportive and as if it never bothered her, but she got angry at me for "ignoring" her when I was very sick on holiday. I wasn't ignoring her, but actually just crippled with pain and constantly vomiting while waiting for the ambulance to arrive, but apparently I was ignoring. Makes me laugh haha. But since then I did meet a girl who was very good with it all, she was generally a laid back calm person so there was never "fuss" made which I really liked, but she understood if I didn't feel well and was happy to let me lay and watch movies with her and not go out anywhere and she didn't expect me to eat much if I couldn't handle it. Sadly the relationship ended for other reasons, but she has showed me that it is possible to have crohns and be in a relationship without the illness ruining everything :) so I guess you have to hang in there and hope that you'll find the perfect someone soon!
Thanks! I can't tell you how grateful I am for this community. -Maggie
 

Lynda Lynda

Senior Member
Location
N/A
Another thread that must be revived !
Hi. I am Lynda and I am straight.
But I enjoy talking to all people.
I hope you'll join the group and start making friends.
🐝
 
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