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03-01-2013, 09:52 PM   #31
KaylaRose
 
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Hi everyone! Straight ally here, diagnosed with Crohn's 7 years ago. Showing my support
03-02-2013, 11:10 AM   #32
nogutsnoglory
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Hi Kayla welcome and thanks for your support! What is polycystic ovary syndrome? Saw that on your profile. It doesn't sound pleasant.
03-02-2013, 07:58 PM   #33
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Snowhite, I haven't been in that situation, but it is wonderful that your girlfriend is so supportive!

Would your family respond at all to a direct sit down sometime before your surgery where you could say some variation on, "I know that my relationship with GF makes you uncomfortable, but she is an important part of my support network, and I would appreciate if you could put aside your objections for the time being so I can focus on healing." I know some people respond well to direct requests but others really don't...

I hope that your surgery goes well and that your family is respectful so that you don't have to worry about it.
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03-02-2013, 07:58 PM   #34
plaidknitter
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Snowhite, I haven't been in that situation, but it is wonderful that your girlfriend is so supportive!

Would your family respond at all to a direct sit down sometime before your surgery where you could say some variation on, "I know that my relationship with GF makes you uncomfortable, but she is an important part of my support network, and I would appreciate if you could put aside your objections for the time being so I can focus on healing." I know some people respond well to direct requests but others really don't...

I hope that your surgery goes well and that your family is respectful so that you don't have to worry about it.
03-02-2013, 11:20 PM   #35
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I've actually said this too lol. I couldn't agree more with you on everything you said.

I was just thinking the only plus from losing so much weight from CD is that I get to wear skinny jeans. I thought this was apropos for the gay group LOL!

I definitely need to put on weight to feel healthy but don't mind being skinny, just don't want to be this skinny.
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03-03-2013, 10:26 AM   #36
KaylaRose
 
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Hi Kayla welcome and thanks for your support! What is polycystic ovary syndrome? Saw that on your profile. It doesn't sound pleasant.
Hi nogutsnoglory! Polycystic ovary syndrome is a condition in which a woman has an imbalance of a female sex hormones.. so basically what I've learned is that there is a build up of cysts on my ovaries that are releasing testosterone
there are several symptoms, weight gain, thinning hair on head, increased acne and one of the major ones is infertility. The effects are similar to, but not as strong as a trans man injecting himself with testosterone (which I learned in a psych class for my undergraduate degree!) I hope that answers some questions!
03-03-2013, 11:02 AM   #37
nogutsnoglory
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Hi nogutsnoglory! Polycystic ovary syndrome is a condition in which a woman has an imbalance of a female sex hormones.. so basically what I've learned is that there is a build up of cysts on my ovaries that are releasing testosterone
there are several symptoms, weight gain, thinning hair on head, increased acne and one of the major ones is infertility. The effects are similar to, but not as strong as a trans man injecting himself with testosterone (which I learned in a psych class for my undergraduate degree!) I hope that answers some questions!
Is that consisted an intersex condition? Is there a way to suppress the testosterone by taking estrogen? I'm sorry you have to go through that!
03-03-2013, 11:08 AM   #38
nogutsnoglory
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Yay, really glad I found this support group - got a question that I think the folks here can probably give input on/sympathize with.

Quick intro about me - was diagnosed with Crohn's in 2005, when I was 19. Had a reeeally rough time trying everything to get my symptoms under control until I switched docs and was put on Remicade. What a life-saver! I haven't had many problems since (did need to switch to Humira after Remicade started losing efficacy and had a couple obstructions) - up until now that is. I'm scheduled for surgery next week, but I'm feeling really hopeful about getting back to remission.

I'm also a pansexual girl - I've been with my current girlfriend for about a year and a half (though we've been friends for several years) and I cannot even explain how wonderful and supportive she is. With this recent battle of symptoms, she has been there every step - driving me to the ER at 3am, taking time off work to come with me to appointments, calming me down after they tried to give me an NG tube at my CT enterography... I feel so blessed, especially after my last partner was such a jerk to me when I was ill (he would tell me he didn't have time to "just come sit around" in the hospital because he was so busy working on his doctorate. ._.)

But, to my question for you all: I finally came out to my family last year when I realized that things were becoming serious with my girlfriend (I didn't like feeling like I was lying about her.) Considering we're all Catholic (well, clearly I am the more liberal Catholic!), my family took it pretty well though they made it clear that they didn't really like it (as in, I'm not particularly hopeful that they will attend my wedding.) They're civil to my girlfriend, but with my surgery coming up I've sensed some tension from my family about the whole lot of us (me, my girlfriend, and my family) being together.

Has anyone been in a situation like this before? Any advice? I know there will be no problems from my girlfriend because she is so sweet and lovely, but sometimes my family can be... difficult. I just don't want to be playing peace-keeper while I should be focusing on healing. :/

Anyway! So glad to be here and looking forward to chatting with you all.
snowhite_dahlia, I'm happy to hear about your relationship with your girlfriend but feel terrible about the awkwardness with your family and your upcoming surgery. I think plaidknitter is spot on that you should sit your family down before surgery and put it all out on the table. I think you should say how important and helpful she is to you and that she will be there while you recuperate and that you don't want to have to worry about the potential tension. The conversation may be really helpful for them as well as a way to discuss the issue. Have they ever said anything against her or do you just get the feeling they don't approve? How does your girlfriend feel about your family?
03-03-2013, 11:08 AM   #39
nogutsnoglory
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Yay, really glad I found this support group - got a question that I think the folks here can probably give input on/sympathize with.

Quick intro about me - was diagnosed with Crohn's in 2005, when I was 19. Had a reeeally rough time trying everything to get my symptoms under control until I switched docs and was put on Remicade. What a life-saver! I haven't had many problems since (did need to switch to Humira after Remicade started losing efficacy and had a couple obstructions) - up until now that is. I'm scheduled for surgery next week, but I'm feeling really hopeful about getting back to remission.

I'm also a pansexual girl - I've been with my current girlfriend for about a year and a half (though we've been friends for several years) and I cannot even explain how wonderful and supportive she is. With this recent battle of symptoms, she has been there every step - driving me to the ER at 3am, taking time off work to come with me to appointments, calming me down after they tried to give me an NG tube at my CT enterography... I feel so blessed, especially after my last partner was such a jerk to me when I was ill (he would tell me he didn't have time to "just come sit around" in the hospital because he was so busy working on his doctorate. ._.)

But, to my question for you all: I finally came out to my family last year when I realized that things were becoming serious with my girlfriend (I didn't like feeling like I was lying about her.) Considering we're all Catholic (well, clearly I am the more liberal Catholic!), my family took it pretty well though they made it clear that they didn't really like it (as in, I'm not particularly hopeful that they will attend my wedding.) They're civil to my girlfriend, but with my surgery coming up I've sensed some tension from my family about the whole lot of us (me, my girlfriend, and my family) being together.

Has anyone been in a situation like this before? Any advice? I know there will be no problems from my girlfriend because she is so sweet and lovely, but sometimes my family can be... difficult. I just don't want to be playing peace-keeper while I should be focusing on healing. :/

Anyway! So glad to be here and looking forward to chatting with you all.
snowhite_dahlia, I'm happy to hear about your relationship with your girlfriend but feel terrible about the awkwardness with your family and your upcoming surgery. I think plaidknitter is spot on that you should sit your family down before surgery and put it all out on the table. I think you should say how important and helpful she is to you and that she will be there while you recuperate and that you don't want to have to worry about the potential tension. The conversation may be really helpful for them as well as a way to discuss the issue. Have they ever said anything against her or do you just get the feeling they don't approve? How does your girlfriend feel about your family?
03-03-2013, 11:30 AM   #40
jlm
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Snowhite_dahlia sorry you have to put up with that during surgery. I also agree with plaidknitter, have a sit down with your family. I've been not feeling well for the last 2 years and wouldn't know where I'd be with out my girlfriend and her family. All of my family live in a different province so I don't see them often. My girlfriends family really accepted her and me with open arms and were great during my surgery. Hope you can get it all straightened away before your surgery.
03-03-2013, 11:30 AM   #41
jlm
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Snowhite_dahlia sorry you have to put up with that during surgery. I also agree with plaidknitter, have a sit down with your family. I've been not feeling well for the last 2 years and wouldn't know where I'd be with out my girlfriend and her family. All of my family live in a different province so I don't see them often. My girlfriends family really accepted her and me with open arms and were great during my surgery. Hope you can get it all straightened away before your surgery.
03-03-2013, 11:36 AM   #42
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Yay, really glad I found this support group - got a question that I think the folks here can probably give input on/sympathize with.

Quick intro about me - was diagnosed with Crohn's in 2005, when I was 19. Had a reeeally rough time trying everything to get my symptoms under control until I switched docs and was put on Remicade. What a life-saver! I haven't had many problems since (did need to switch to Humira after Remicade started losing efficacy and had a couple obstructions) - up until now that is. I'm scheduled for surgery next week, but I'm feeling really hopeful about getting back to remission.

I'm also a pansexual girl - I've been with my current girlfriend for about a year and a half (though we've been friends for several years) and I cannot even explain how wonderful and supportive she is. With this recent battle of symptoms, she has been there every step - driving me to the ER at 3am, taking time off work to come with me to appointments, calming me down after they tried to give me an NG tube at my CT enterography... I feel so blessed, especially after my last partner was such a jerk to me when I was ill (he would tell me he didn't have time to "just come sit around" in the hospital because he was so busy working on his doctorate. ._.)

But, to my question for you all: I finally came out to my family last year when I realized that things were becoming serious with my girlfriend (I didn't like feeling like I was lying about her.) Considering we're all Catholic (well, clearly I am the more liberal Catholic!), my family took it pretty well though they made it clear that they didn't really like it (as in, I'm not particularly hopeful that they will attend my wedding.) They're civil to my girlfriend, but with my surgery coming up I've sensed some tension from my family about the whole lot of us (me, my girlfriend, and my family) being together.

Has anyone been in a situation like this before? Any advice? I know there will be no problems from my girlfriend because she is so sweet and lovely, but sometimes my family can be... difficult. I just don't want to be playing peace-keeper while I should be focusing on healing. :/

Anyway! So glad to be here and looking forward to chatting with you all.
Hi!!!! First. Congrats on your wedding!!! That is so cool. Ive heard Crohn's/flare ups can be stress related. And...your wedding should be as stressfree as possible! It is about you and your girlfriend. A celebration of two lives...coming together. Loving one and other - through thick and thin.

And, as Crohn's can be related to stress..so you know what - i'd do my best to focus on healing and the love that your wedding celebrates :-) You don't need to be a peace-keeper - though i understand why you feel you have to. You shouldn't. They should realize how amazing it is that they have you in your life and that your wedding is coming up and that you've found someone as wonderful as your girlfriend. They should be keeping the peace. Not you. Its not you with the problem. They should be celebrating you and making sure you have a stress-free wedding.

Let them know that your girlfriend/soon to be wife will stand by you, loves you and will be by your side through difficult times. She cares and loves you. Just as them.
03-03-2013, 11:36 AM   #43
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Yay, really glad I found this support group - got a question that I think the folks here can probably give input on/sympathize with.

Quick intro about me - was diagnosed with Crohn's in 2005, when I was 19. Had a reeeally rough time trying everything to get my symptoms under control until I switched docs and was put on Remicade. What a life-saver! I haven't had many problems since (did need to switch to Humira after Remicade started losing efficacy and had a couple obstructions) - up until now that is. I'm scheduled for surgery next week, but I'm feeling really hopeful about getting back to remission.

I'm also a pansexual girl - I've been with my current girlfriend for about a year and a half (though we've been friends for several years) and I cannot even explain how wonderful and supportive she is. With this recent battle of symptoms, she has been there every step - driving me to the ER at 3am, taking time off work to come with me to appointments, calming me down after they tried to give me an NG tube at my CT enterography... I feel so blessed, especially after my last partner was such a jerk to me when I was ill (he would tell me he didn't have time to "just come sit around" in the hospital because he was so busy working on his doctorate. ._.)

But, to my question for you all: I finally came out to my family last year when I realized that things were becoming serious with my girlfriend (I didn't like feeling like I was lying about her.) Considering we're all Catholic (well, clearly I am the more liberal Catholic!), my family took it pretty well though they made it clear that they didn't really like it (as in, I'm not particularly hopeful that they will attend my wedding.) They're civil to my girlfriend, but with my surgery coming up I've sensed some tension from my family about the whole lot of us (me, my girlfriend, and my family) being together.

Has anyone been in a situation like this before? Any advice? I know there will be no problems from my girlfriend because she is so sweet and lovely, but sometimes my family can be... difficult. I just don't want to be playing peace-keeper while I should be focusing on healing. :/

Anyway! So glad to be here and looking forward to chatting with you all.
Hi!!!! First. Congrats on your wedding!!! That is so cool. Ive heard Crohn's/flare ups can be stress related. And...your wedding should be as stressfree as possible! It is about you and your girlfriend. A celebration of two lives...coming together. Loving one and other - through thick and thin.

And, as Crohn's can be related to stress..so you know what - i'd do my best to focus on healing and the love that your wedding celebrates :-) You don't need to be a peace-keeper - though i understand why you feel you have to. You shouldn't. They should realize how amazing it is that they have you in your life and that your wedding is coming up and that you've found someone as wonderful as your girlfriend. They should be keeping the peace. Not you. Its not you with the problem. They should be celebrating you and making sure you have a stress-free wedding.

Let them know that your girlfriend/soon to be wife will stand by you, loves you and will be by your side through difficult times. She cares and loves you. Just as them.
03-03-2013, 11:40 AM   #44
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Is that consisted an intersex condition? Is there a way to suppress the testosterone by taking estrogen? I'm sorry you have to go through that!
Good question! I never thought to ask, I can start taking pills to counteract the testosterone, but I have decided to hold off until my husband and i are ready to have kids, the rest of the symptoms are manageable in my books. Seems I have some research to do!
03-03-2013, 11:58 AM   #45
nogutsnoglory
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KaylaRose, in doing some quick googling it appears a lot of people have asked the question I asked but it seems most argue it's not an intersex condition because your chromosomes and genitalia are female. I think in order to be classified as intersex there needs to an atypical combination. You certainly though share similar health issues as intersex and trans men face. I can understand your desire to wait till after pregnancy. I wasn't aware that estrogen therapy would be bad for a woman and be dangerous for the child? Is it that the child gets exposed to the hormones? Have you seen a doctor over whether you can get pregnant due to the testosterone production?
03-03-2013, 12:25 PM   #46
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KaylaRose, in doing some quick googling it appears a lot of people have asked the question I asked but it seems most argue it's not an intersex condition because your chromosomes and genitalia are female. I think in order to be classified as intersex there needs to an atypical combination. You certainly though share similar health issues as intersex and trans men face. I can understand your desire to wait till after pregnancy. I wasn't aware that estrogen therapy would be bad for a woman and be dangerous for the child? Is it that the child gets exposed to the hormones? Have you seen a doctor over whether you can get pregnant due to the testosterone production?
It's not that it would be dangerous for the child or anything that I am aware of, simply if I were to take the estrogen therapy there's a much better chance that I will get pregnant, and currently my husband and I aren't in a financially stable enough position for children. I am currently seeing a doctor, and pregnancy is possible with the testosterone production however it is unlikely. So when we're ready to try for kids, I can start taking some fertility medication. After we're done with kids, doctors usually recommend going on the birth control pill as a form of estrogen therapy.
03-03-2013, 12:31 PM   #47
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Oh ok misunderstood and thought that you wanted kids now and didn't understand why you wouldn't start the treatment.
03-04-2013, 08:03 PM   #48
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Just wanted to say...a massive thank you to everyone here for all they're kind comments on this forum and for NGNG for setting this little support group up :-)
03-04-2013, 08:28 PM   #49
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Martin it's so great to have you and have this support group. What are you doing up still? Isn't it like super late in the UK?
03-04-2013, 08:31 PM   #50
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Pleasure! - Just wanted to say thank you (and thanks for having me!). Tah for your kind words. Yeah, sometimes i cant sleep. A lot running through my head.
03-04-2013, 09:49 PM   #51
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Subscribing to show my support.

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03-04-2013, 11:01 PM   #52
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Thanks David :-)
03-06-2013, 10:02 AM   #53
nogutsnoglory
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Yay, really glad I found this support group - got a question that I think the folks here can probably give input on/sympathize with.

Quick intro about me - was diagnosed with Crohn's in 2005, when I was 19. Had a reeeally rough time trying everything to get my symptoms under control until I switched docs and was put on Remicade. What a life-saver! I haven't had many problems since (did need to switch to Humira after Remicade started losing efficacy and had a couple obstructions) - up until now that is. I'm scheduled for surgery next week, but I'm feeling really hopeful about getting back to remission.

I'm also a pansexual girl - I've been with my current girlfriend for about a year and a half (though we've been friends for several years) and I cannot even explain how wonderful and supportive she is. With this recent battle of symptoms, she has been there every step - driving me to the ER at 3am, taking time off work to come with me to appointments, calming me down after they tried to give me an NG tube at my CT enterography... I feel so blessed, especially after my last partner was such a jerk to me when I was ill (he would tell me he didn't have time to "just come sit around" in the hospital because he was so busy working on his doctorate. ._.)

But, to my question for you all: I finally came out to my family last year when I realized that things were becoming serious with my girlfriend (I didn't like feeling like I was lying about her.) Considering we're all Catholic (well, clearly I am the more liberal Catholic!), my family took it pretty well though they made it clear that they didn't really like it (as in, I'm not particularly hopeful that they will attend my wedding.) They're civil to my girlfriend, but with my surgery coming up I've sensed some tension from my family about the whole lot of us (me, my girlfriend, and my family) being together.

Has anyone been in a situation like this before? Any advice? I know there will be no problems from my girlfriend because she is so sweet and lovely, but sometimes my family can be... difficult. I just don't want to be playing peace-keeper while I should be focusing on healing. :/

Anyway! So glad to be here and looking forward to chatting with you all.
snowhite_dahlia, I know a few of us responded to your post but its hard to follow here since other posts followed yours. I wanted to know if you ever talked to your parents and when your surgery is scheduled for?
03-06-2013, 10:02 AM   #54
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Yay, really glad I found this support group - got a question that I think the folks here can probably give input on/sympathize with.

Quick intro about me - was diagnosed with Crohn's in 2005, when I was 19. Had a reeeally rough time trying everything to get my symptoms under control until I switched docs and was put on Remicade. What a life-saver! I haven't had many problems since (did need to switch to Humira after Remicade started losing efficacy and had a couple obstructions) - up until now that is. I'm scheduled for surgery next week, but I'm feeling really hopeful about getting back to remission.

I'm also a pansexual girl - I've been with my current girlfriend for about a year and a half (though we've been friends for several years) and I cannot even explain how wonderful and supportive she is. With this recent battle of symptoms, she has been there every step - driving me to the ER at 3am, taking time off work to come with me to appointments, calming me down after they tried to give me an NG tube at my CT enterography... I feel so blessed, especially after my last partner was such a jerk to me when I was ill (he would tell me he didn't have time to "just come sit around" in the hospital because he was so busy working on his doctorate. ._.)

But, to my question for you all: I finally came out to my family last year when I realized that things were becoming serious with my girlfriend (I didn't like feeling like I was lying about her.) Considering we're all Catholic (well, clearly I am the more liberal Catholic!), my family took it pretty well though they made it clear that they didn't really like it (as in, I'm not particularly hopeful that they will attend my wedding.) They're civil to my girlfriend, but with my surgery coming up I've sensed some tension from my family about the whole lot of us (me, my girlfriend, and my family) being together.

Has anyone been in a situation like this before? Any advice? I know there will be no problems from my girlfriend because she is so sweet and lovely, but sometimes my family can be... difficult. I just don't want to be playing peace-keeper while I should be focusing on healing. :/

Anyway! So glad to be here and looking forward to chatting with you all.
snowhite_dahlia, I know a few of us responded to your post but its hard to follow here since other posts followed yours. I wanted to know if you ever talked to your parents and when your surgery is scheduled for?
03-07-2013, 01:28 AM   #55
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I am new to this forum in general and I am glad a support group like this exists. I have Crohn's Disease and I am bisexual. I was diagnosed on New Year's Eve 2010. I am looking forward to getting to know all of you here.
03-08-2013, 08:14 PM   #56
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Really glad to see this group--I had thought about suggesting or trying to start something like it, but never got around to it, and finally remembered today seeing in the newsletter or something that this group exists!

I "diagnosed" myself as gay at 17, after initially mis-diagnosing myself as bi at 15. I had signs of it going back to age 2, though I have a pansexual boyfriend...we've been together for close to a year and a half now. He has been a big support to me, especially when I was in the hospital for 19 days this summer.

I turned 28 in June, and that's roughly when my flare started. Went to the hospital in July, and eventually got the diagnosis of Crohn's colitis. I'm on Humira and Asacol, and that seems to be keeping things pretty well under control, but I have aches, fatigue, bits of itchiness, and a new allergy to most deodorants.

My biggest frustration is not really being interested in sex. I still have a libido, and I enjoy physical closeness with my boyfriend, but I just don't really want to have sex anymore. Sortof. I want to, but I'm apprehensive about some things, and I wind up feeling kindof conflicted...wanting to, but simultaneously not wanting to.

VictoriaSage: I was in Rochester a couple of weeks ago at an LGBTQ event, and I have a couple of gay friends there. Also, glad to see another gamer!
03-09-2013, 12:34 PM   #57
nogutsnoglory
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I am new to this forum in general and I am glad a support group like this exists. I have Crohn's Disease and I am bisexual. I was diagnosed on New Year's Eve 2010. I am looking forward to getting to know all of you here.
Welcome to the forum and our support group! Feel free to also stop by the Your Story section to introduce yourself to the forum at large too.

Diagnosed on New Year's? Oh man! We're you in the hospital?
03-09-2013, 12:37 PM   #58
nogutsnoglory
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Really glad to see this group--I had thought about suggesting or trying to start something like it, but never got around to it, and finally remembered today seeing in the newsletter or something that this group exists!

I "diagnosed" myself as gay at 17, after initially mis-diagnosing myself as bi at 15. I had signs of it going back to age 2, though I have a pansexual boyfriend...we've been together for close to a year and a half now. He has been a big support to me, especially when I was in the hospital for 19 days this summer.

I turned 28 in June, and that's roughly when my flare started. Went to the hospital in July, and eventually got the diagnosis of Crohn's colitis. I'm on Humira and Asacol, and that seems to be keeping things pretty well under control, but I have aches, fatigue, bits of itchiness, and a new allergy to most deodorants.

My biggest frustration is not really being interested in sex. I still have a libido, and I enjoy physical closeness with my boyfriend, but I just don't really want to have sex anymore. Sortof. I want to, but I'm apprehensive about some things, and I wind up feeling kindof conflicted...wanting to, but simultaneously not wanting to.

VictoriaSage: I was in Rochester a couple of weeks ago at an LGBTQ event, and I have a couple of gay friends there. Also, glad to see another gamer!
Welcome to the group! I was on humira and had full body itchiness that still persists even though I stopped. I now have dermographia and need an anti-histamine daily to help control it.

A lot of people on the forum have a low sex drive. The disease takes such a toll on the body that its hard to want to do much else. How is your boyfriend handling that? It sounds like you are still intimate and affectionate which is great.
03-09-2013, 10:00 PM   #59
Elektrikhd
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Welcome to the group! I was on humira and had full body itchiness that still persists even though I stopped. I now have dermographia and need an anti-histamine daily to help control it.

A lot of people on the forum have a low sex drive. The disease takes such a toll on the body that its hard to want to do much else. How is your boyfriend handling that? It sounds like you are still intimate and affectionate which is great.
My itchiness may be related to dry skin. I've had some problems with dehydration since the Crohn's started, before going on Humira. I get headaches sometimes, too, but I think I have them under control now.

My boyfriend seems to be handling things pretty well. We've talked about it some along the way. I feel bad about it, though. I have enough libido that I still masturbate regularly, although I suppose getting up to something with him would take more energy. Plus I'm afraid to try what I had enjoyed the most with him :P
03-10-2013, 10:44 PM   #60
WadeszWorld
 
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Join Date: Feb 2012
Location: Massachusetts

My Support Groups:
Welcome to the forum and our support group! Feel free to also stop by the Your Story section to introduce yourself to the forum at large too.

Diagnosed on New Year's? Oh man! We're you in the hospital?
I will definitely copy and paste a link to my blog that describes my story with Crohn's Disease up until this point. I actually had my colonoscopy the night before New Year's Eve and I just remember being in so much pain that night. I got a phone call the next day confirming my diagnosis, so every time we are about to start a new year, I always get reminded that I was diagnosed on the turn of a New Year. I pretty much underwent many tests leading up to the colonoscopy. They all happened within days of each other. Thanks for the warm welcome to the forum. Hope you are doing well.
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