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

nogutsnoglory

Moderator
That's great news.
Did you meet up with your old friend yet? How did it go ?
We met up and it was nice to catch up and get out of the house. I also gave him a quick education about crohns. Just enough to understand without ruining his lunch. I didn't wind up coming out to him but if we continue to get together I will. He asked if I was dating any girls. I simply said I'm too sick to think about dating. It was a good out and true and I didn't lie about my identity.
 

nogutsnoglory

Moderator
I was diagnosed after my partner and I had been broken up, which was super hard. I didn't have any symptoms at the end of our relationship, but I had lost a ton of weight & it was taking a toll on me emotionally. The year that we were apart was the hardest I've ever experienced, especially once I started getting really severe symptoms. Somehow things fell into place & we're back together after our year off, stronger than ever & I couldn't ask for a better advocate for my health. I had a perianal seton put in in November and was terrified to date or sleep with anyone and she made sure that I was okay with everything and does everything she can to make me feel beautiful every day and help me to forget that I've a heinous illness. She researches doctors, foods (we went vegan together three years ago when i had my first flare up but didn't know what it was and it went undiagnosed) that will be easy on me, and keeps me in check emotionally. And to think, we're not even married. :) let's hope that that becomes possible today! That support and love is out there guys; sometimes it's just part of our silly CD journey.
I'm glad you guys got back together, it sounds like she is a great partner who really cares about you. Do you think your symptoms may have gotten worse due to the break up? After my break up I went into a really bad flare and wonder if stress and the lack of affection I had was a possible factor.
 
Just hanging out here. My illness info is in the sig. I wouldn't classify as Gay, but maybe bi-curious (with crohns, I usually feel asexual, lol). Went to school in Atlanta (Heeey!) In general, I like to listen to others and hear what people think/experience, regardless of my individual sexual orientation.

With all the recent news on LGBT rights, I wanted to make sure to keep in the loop with what people are talking about and what's going on !
 
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nogutsnoglory

Moderator
It's not uncommon to feel asexual with this disease. Not to be confused with people whose orientation is asexual and never or rarely desire sex.

There is a lot going on in the news and its exciting to watch history unfold before my eyes. Every day we are one step closet to full equality under the law. It gives me hope for the next generation. I think they will grow up in a world that doesn't see color, gender, sexuality. They just see people for who they are.
 
Just hanging out here. My illness info is in the sig. I wouldn't classify as Gay, but maybe bi-curious (with crohns, I usually feel asexual, lol). Went to school in Atlanta (Heeey!) In general, I like to listen to others and hear what people think/experience, regardless of my individual sexual orientation.

With all the recent news on LGBT rights, I wanted to make sure to keep in the loop with what people are talking about and what's going on !
Good to have you in the group ProspectorsQuartet. It is good to learn from each other, I would agree there. I am glad to see LGBT rights being brought to the forefront of the news. We are one step closer to getting what is rightfully our's, equality.
 
I was diagnosed after my partner and I had been broken up, which was super hard. I didn't have any symptoms at the end of our relationship, but I had lost a ton of weight & it was taking a toll on me emotionally. The year that we were apart was the hardest I've ever experienced, especially once I started getting really severe symptoms. Somehow things fell into place & we're back together after our year off, stronger than ever & I couldn't ask for a better advocate for my health. I had a perianal seton put in in November and was terrified to date or sleep with anyone and she made sure that I was okay with everything and does everything she can to make me feel beautiful every day and help me to forget that I've a heinous illness. She researches doctors, foods (we went vegan together three years ago when i had my first flare up but didn't know what it was and it went undiagnosed) that will be easy on me, and keeps me in check emotionally. And to think, we're not even married. :) let's hope that that becomes possible today! That support and love is out there guys; sometimes it's just part of our silly CD journey.
I am so glad to see that you have someone special in your life who understands and wants to help you every step of the way. This disease is hard enough dealing with on your own, so it's good to have a significant other who really cares and will put in the time and effort to educating oneself about an illness they do not have. I am glad that she takes the necessary steps to try anything she can including going vegan to see if it would improve your symptoms. She wants to make sure that you won't have to go through it alone. Yes, one day I hope we see marriage equality nationwide. That would be truly a dream come true. :hug:
 

nogutsnoglory

Moderator
So I have a blind date with this really cute guy tomorrow. How do I know he is cute? I google stalked him and found a picture. A mutual friend is setting us up.

I'm so nervous because its been a while since I have gone on a date and this one sounds promising on paper. Im hoping to God I won't have the runs. Right now just thinking about it makes me want to have diarrhea.

I am going to load up on Imodium tomorrow. It's a busy place and half the time the "restroom is out of order". I hope I won't need to go.
 
So I have a blind date with this really cute guy tomorrow. How do I know he is cute? I google stalked him and found a picture. A mutual friend is setting us up.

I'm so nervous because its been a while since I have gone on a date and this one sounds promising on paper. Im hoping to God I won't have the runs. Right now just thinking about it makes me want to have diarrhea.

I am going to load up on Imodium tomorrow. It's a busy place and half the time the "restroom is out of order". I hope I won't need to go.
Awesome. Sounds exciting! Above all else, have fun and try as much to focus on the dating stuff and not the IDB stuff.

I know, 'easier said than done' :p
 

nogutsnoglory

Moderator
I know but the problem is the nervousness not only about the date but about needing to go. The nerves are making the diarrhea worse tonight.
 

nogutsnoglory

Moderator
Thanks so much ceecee. It's a big first step for me in trying to resume a somewhat normal life. I just want to be able to go out with friends, find love and do things rather than be stuck at home in pain.
 
Go for it NGNG!
I am jumping up & down in anticipation for you that you have a good time.
Loads of good vibes from this side of the pond. :dance:
 
He was a nice guy but the chemistry wasn't there for either of us. The search continues :(
When you least expect it...probably when you are not even on the search...you'll find someone with whom you share chemistry. Not only will you find someone, but you'll also find yourself. :) Stay strong.
 

Cat-a-Tonic

Super Moderator
Straight ally here too. Just wanted to say congrats on the new sub-forum, and to NGNG, congrats on being moderator of the sub-forum! :) I know you fought for this to happen and I'm happy for you.
 
Jwfoise we can never have too many friends, especially with all of the enemies out there. Tell us about yourself :)
I have talked a little elsewhere around the forum. I have UC, but mine is pretty moderate and generally well behaved. My wife has Crohn's, has had it for over 25 years (from before we were married 23 years ago), and has had a lot more problems than me, including multiple surgeries. And no, we didn't meet through the local CCFA; my UC was diagnosed well after we met.

I am a hetero male, and have been married for a long time. I've had openly (and semi-open) gay friends back to when I was in grad school in the mid 80s. Love and partnership is the greatest thing that ever happened to me, and I hope everyone can be so lucky.

Now my weird sense of humor kicks in and I want to be all Playboy Playmate... "My turn-ons are kitties and sunsets and long walks and my turn-offs are brussel sprouts and mean people" :biggrin:
 

nogutsnoglory

Moderator
That's so crazy that you have UC and your wife has Crohn's without having met at a CCFA meeting. I think you guys are obligated to be the IBD spokescouple.

I hope you guys have more than one bathroom? In all seriousness though that must be really comforting to both be there to support and truly understand what the other is going through when times get tough.
 
I'm also a straight ally. I will be honest and say I never gave much thought to LGBT rights until my son became best friends with a boy who has lesbian parents. Since then, my husband & I have worked on the fight for marriage equality here in Minnesota, and today, it passed our state house (the bill has more than enough votes to pass the state senate and our governor said he'd sign it) so it has been a great day here.
 

nogutsnoglory

Moderator
LindaS thanks so much for supporting the initiative. I just read that the Senate will vote tomorrow. So Minnesota might become the 12th state plus D.C. that has marriage equality tomorrow.

I'm not in that state but will ask my friends there to call their state senators. I think chances look bright.
 
LindaS thanks so much for supporting the initiative. I just read that the Senate will vote tomorrow. So Minnesota might become the 12th state plus D.C. that has marriage equality tomorrow.

I'm not in that state but will ask my friends there to call their state senators. I think chances look bright.
I think they said on the news this morning they need 40 state senators to vote yes and at least 44 have pledged to. So that means possibly by Tuesday Gov. Dayton will sign the bill. I am so happy for all my friends and for my son's generation that will know who they love is less important than the fact that they love someone.
 

nogutsnoglory

Moderator
And... It's a done deal Minnesota! 37-30 and Governor Mark Dayton is signing it on the Capitol steps at 5pm tomorrow!

I think in 15 years this will be an almost non-issue. People under 30 do not see gay people as any different and support full rights.
 
And... It's a done deal Minnesota! 37-30 and Governor Mark Dayton is signing it on the Capitol steps at 5pm tomorrow!

I think in 15 years this will be an almost non-issue. People under 30 do not see gay people as any different and support full rights.
My 9 year old son doesn't understand the fuss. As far as he's concerned, marriage is only about who you love, not if the participants are a man and a woman, two women or two men.

We're considering going to the capitol tomorrow, as we live about a mile from it. It would be very cool to be there.
 

nogutsnoglory

Moderator
Did you goto the Capitol? I watched the video feed it looked like there were thousands of people there. I also read they were marching over a bridge after to celebrate. Sounds so much fun :)
 
Did you goto the Capitol? I watched the video feed it looked like there were thousands of people there. I also read they were marching over a bridge after to celebrate. Sounds so much fun :)
Yes, we were there. Of course it was 94 degrees and HOT. But it was so nice. We were with some friends who have a son who is friends with our son. It was so emotional. I met some great people, too.
 
I am a straight ally, and also supportive mother to a gay man. It made me so proud to be a new Minnesotan now more than ever, since gay marriage is approved here now! My son still lives in Wisconsin but at least he now can move just a short distance if and when he is ready to commit to marriage. He's happy about it too! He came out to us when he was about 16 years old. He was terrified but very brave. We told him immediately that we supported him and loved him no matter what - he's our son! His older brother is also very supportive, and both of our families have accepted him and loved him as well. He's currently with a great guy too.
I support him with his homosexuality and he supports me with my medical problems! It's a pretty good, symbiotic relationship and I'm lucky to have him.
 

nogutsnoglory

Moderator
Mccindy it's always nice to hear of loving and supportive parents. Coming out is hard so it's always great when the other person says who cares you are the same person as before.

I came out to an old friend today. I think I mentioned it a few weeks ago that last time I chickened out. My friend didn't even blink an eye, it was as if I would have said I like pizza. I felt a sense of relief immediately knowing I can talk frankly and not have to be creating a false self just to appease him or because I was afraid. Coming out is always hard but it has been worth it every time I have done so.
 
How wonderful! I'm glad to hear that your friend is supportive. Not only that, but what a great reaction. It's so much better than someone who has to "work through it" or "deal" with it. I've never understood that. If you love someone, it shouldn't matter if that person is gay or straight. That's not why you love him or her, it's who they are and your relationship that matters. Kudos to you for having the strength to come out and live your life without pretense.
 
Thanks, NoGutsNoGlory, for inviting me to join this group.

I am a lesbian who came out in college back in the mid 1970s (yup, I'm that old). I was diagnosed with Crohns in 1982, this after about three years of symptoms and misdiagnoses. I was really sick and almost died during a two-week hospital stay, but survived (obviously!) thanks to an amazing doctor who had just happened to be on duty when I dragged my ass into the hospital.

I did really well on Sulfa drugs for about 20 years. Sulfa kept my Crohns mostly in remission, except for joint pain and lethargy which has been a constant for me. Then I developed an allergy to Sulfa, and spent a few years trying other drugs like Pentasa and Asacol which would work for awhile and then I would develop an allergy to each one. For about five years I was on nothing and was able to stay in remission, which was great. Then I flared and was put on Prednisone, Imuran, and, most recently, Cimzia. I am currently on all three but am tapering Prednisone as the Cimzia starts to take effect (hopefully).

I may be the only person on this Board who loves Prednisone. It's the only drug I've ever taken that makes me feel like my pre-Crohns self. If I could take it long-term I would.

In terms of the gay thing, I've been out a long time, as I mentioned, longer than I have had Crohns. I've had ups and downs in the relationship part of life, but now have a great partner of twelve years who totally gets me and is a great support.

I've always been out to my doctors. It's something I've never really thought about with a gastroenterologist, although I have with gynecologists because they ask all those nosy questions about sexual activity that make me say, Can't you just out on my record that I am a lesbian so we can skip the bit about birth control? But I would imagine it might be a real issue for gay men and some gastro docs. (This might actually be a good discussion for a separate thread, if there isn't already one going.) I confess that as a lesbian, I don't know a whole lot about gay men but am always open to learning.

My nephew is also gay and also has Crohns. (Don't think he is on this forum, but if he is, Hi, T!) We live far apart but when we are together, we talk much more about Crohns -- our treatments, what we're eating, insurance issues, etc. -- than being gay. I think having Crohns has brought the two of us much closer together than being gay. We are both lucky to live in an open, supportive extended family.
 

nogutsnoglory

Moderator
So glad you can join us kiltubrid. Sorry for my late response but past few days I barely have any energy to even write a post. I'm sorry you suffered so much but glad things seem to be falling in the right place with Cimzia and all. I can't relate to your love of prednisone, most of us here hate it for all the side effects.

It's good to hear you are out to your doctors. I find it pretty hard because I'm afraid of the judgement and don't want it in my record.

I think that's so cool that your nephew is also gay and has Crohn's. you guys must be a great support for one another. Please tell him to join the forum and introduce himself here.

P.S. How is being partnered in Wisconsin? I know some parts are very liberal but the state laws are pretty anti-gay right?
 
I can't speak for kiltubrid, but before I moved to Minnesota in January I lived in Wisconsin for most of my life. Wisconsin does have the domestic partnership, which does allow for some limited benefits. However, Scott Walker, who seems determined to make Wisconsin the worst state of the fifty, has done his best to try to repeal the civil union law. In Eau Claire, where my son lives, it is fairly well accepted to be gay and there is a fairly large gay community. He enjoys an active social life and has a great boyfriend, and they are generally well treated.
 

nogutsnoglory

Moderator
I think urban centers anywhere in the U.S. are more liberal and tend to be more gay friendly. I think many gays flock to the cities to find community and live openly since its very hard to do so in a small conservative town.

Wisconsin is a purple state so there are some legal rights through domestic partnerships but you are right the governor seems hell bent on making it very hard on LGBT families.
 
There's an interesting post going around on Facebook which says, "Welcome to the Bible Belt- where obesity is a "genetic problem" but being gay is a choice". I find it true and sad. Becoming morbidly obese is a choice, but being gay is just a part of who someone is. Yet there is more promotion to stop discrimination against the obese than there is against the gay.
 
My husband grew up in a small town in northern Wisconsin. His brothers, who never went to college, and have worked there their whole lives, don't understand why gays want to marry. I think it is definitely due to living in a small town. Although it could be because both are pretty devout Catholics, too.
 
Madison is very liberal and queer-friendly, but UW was the last Big Ten school to add partner benefits, even when we had a Chancellor who was an out lesbian. The rest of the state, except for larger towns that have a one of the UW system schools, is pretty conservative.

I grew up in Iowa which is full of farms and small towns, but on the whole is much more progressive than Wisconsin. It didn't surprise me at all that Iowa was the first Midwestern state to legalize gay marriage.
 
I am new to this forum. I have been dealing with Crohn's since I was dx in 1997. At the time I was experiencing severe cramps for a year and a half. After an upper GI they took a biopsy and it came up positive for Crohn's. The next day I was admitted for a resection. I've been more or less fine since except for some episodes of cramps at one time or another, a fistula that was corrected with prednisone for a few weeks. I was prescribed 6MP and stopped taking that three years ago. A year ago I began to experience numbness in my lower extremities and tingling in my fingers. They made me take this horrid test to see how extreme the nerve damage was. I finished the test all the way through. Meaning, I was able to take the test without hitting the medical staff. LOL I saw a neurologist and was told that the nerve pain and numbness was a result of taking 6MP. Well, that was lovely wasn't it? The neurologist placed me on Elavil for the nerve pain. I asked her if the Elavil was so that I would feel better about the pain? Again, I was joking but it does work and no more horrible burning in my feet to keep me awake at night. Now this is my question and inquiry. The front of my shins have developed these strange small blister like bubbles. Just a few of them on each shin. They burst without me realizing it since I have very little feeling in my lower legs. They seem to refuse to clot or scab over as normal scrapes etc usually do. In other words, it's not healing normally. This happened a few weeks ago but they went away. Now, I'm not too sure about it. One of the now ulcers is about the size of a quarter. Has anyone experienced this before? Is there a risk of losing a limb to this? I am going to make an appointment to see my doctor. I do live in a very remote region of far west Texas and my physician is fairly close (in Texas speak that is about a four hour drive). It would really help if some one knows anything about this issue. Thanks.
 

nogutsnoglory

Moderator
Hi Siarl welcome to the Crohn's forum and our little gay group here too. Thanks for sharing your story. I had a really bad experience with prednisone as well and suffer pain and tingling feelings in my legs, hands and feet now and am not sure of the cause. What horrid test did you have? Was it the nerve conduction where they stick you with a needle and send a volt of electricity? My neurologist prescribed Gabapentin and I hope it works.
 
Hey there. Yes the test was the nerve conduction test. It was a two part test. The first part the nurse places some tabs on a certain part of the leg (in my case it was my legs, it could be other parts of the body but wherever the problem is) She began at my feet and worked her way up to the back of my knee. The electrode patch goes on one end of which ever muscle group they are targeting and then the probe is touched to the other end of the muscle group. The time it takes for the electric pulse to travel from where the probe is touched to the electrode is what they measure. It's about a fifteen to twenty minute part. The worst part was the back of the knee. It hurt like a bear. The second part is when the doctor sticks a short needle into each muscle group they are targeting. In this case it was each muscle group that the nurse had measured prior. I hate needles with a passion. Hate them. So I'm telling you this because I actually never felt any of the needle sticks. It's a short needle. What the doctor is doing is listening to the sound of the muscles and the nerves communicating with one another. There was a screen much like a cardiac monitor. I could see the screen and see the pulse wave and hear it while the test was being conducted. After the test was over, I was told that I made it all the way through and that normally most folks don't. That was a sign of how serious the damage was to the covering or sheath covering the nerves. I got the impression that they encounter many patients who have been referred to them by Workers Comp and these folks usually don't make it half way through the test due to faking the injury or etc. If you have to take the test you can just tell the nurse that you've had enough once it reaches your pain threshold.

My neurologist placed me on Gabapentin and it did not work for me. She had advised me that sometimes it works for some and not for others. It made my feet swell so bad that she took me off of it. She then placed me on Elavil, which is normally an antidepressant but it also works on nerve pain. It works wonderfully! I was so so so glad too since for once I could sleep without waking up in pain after an hour or two of sleep. I would stay awake at night until I was so exhausted I would drift off to sleep. With the Elavil, I no longer have to worry about that. I hope the Gabapentin works for you but if it doesn't, don't worry. There are a host of other alternatives. Lyrica is supposedly the wonder drug for nerve pain but if you have ever listened to one of the commercials for it listing the very extensive list of side effects. No thanks. I'll settle for the Elavil. Keep in touch and let me know how that works for you.
 

nogutsnoglory

Moderator
I agree that nerve conduction test is awful, it's not even that painful but that zap is terrible when your muscles twitch. I'm hopeful this medication works because I can barely walk but its good to know there are other options too in the event that its necessary.
 
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nogutsnoglory

Moderator
I know there are quite a few U.K. members here and I was totally psyched to see marriage equality legalized in England & Wales. I didn't realize what a crazy legislative process exists there, they take their law making slow and seriously! I was also a bit surprised about royal assent and that the Queen can theoretically veto any legislation although she mainly signs off as a sign of respect for the royal family and as formality. Anyway happy days and cheers to couples in the U.K.
 

nogutsnoglory

Moderator
Thanks for sharing sickofcrohns. I remember seeing that a few weeks back and thought it was really cute and touching. Are you from the kiwi land? They do call it that right? Not sure why, is there a lot of kiwi production in NZ? I love Kiwi they need to make a seed free IBD friendly version lol.
 
Plaid Knitter and anyone else that this may apply. I've worked in the medical field in a clinic and on a med/surg ward setting and I have observed medical personnel become dismissive towards patients when they aren't sure of a diagnosis. Or they just don't have the expertise or forethought to make a referral or do more research in regards to a particular patient. I've also had to go through many doctors before I was diagnosed. Most all of them would dismiss my symptoms as either irritable bowel or ask what I thought it might be. The latter experience really made me angry. As a patient you are most likely in pain at the time of the medical appt or ER visit and are not in the mood to be proactive but you need to be just that. If you sense a doctor or physician's assistant is being dismissive about your case, demand to see someone else. If that doesn't work or you don't have much of a choice other than to see THAT particular appointed medical staff member, do some research on your own about your medical issue and walk into the Dr. Office and demand certain procedures be provided. In the case of Plaid Knitter, you need to have a biopsy performed. It's the only way to determine if it's Crohn's or something else. The Dr. needs to perform a biopsy. A dye is applied to the specimen to determine the dx. Dr.s forget that they are human. They are very busy and overworked with a very heavy case load. Especially in the U.S. So the patient has to be proactive with their medical condition. Often Dr.s or medical staff will dismiss you and will not want you to be so, but you need to be. You are the boss of your body. Don't let anyone convince you otherwise. I've been doing my own homework so to speak with regards to medications. I've had some doctors tell me to never miss a dose while others will tell me to not take the medication if it makes me uncomfortable. It's can be confusing. As in any field of study. I have seen Doctors argue and debate one another with regards to one procedure over another.

Again, you are the master of your body. The doctor may tell you something but in the end you should be the one to make the decision. While I was in the hospital I even demanded when the time came, that I be the one to take out my own NG tube and my foley catheter. I did not want them to just yank it out.

Be well. Chin up.
 
Hi, just wanted to introduce myself. I'm 51, diagnosed with Crohn's in 1975 when I was 13. Had surgery & complications in 2004 resulting in a temporary ileostomy that was reversed in 2005. Am on disability since 2004 after a long career in IT.

Margaret
 

nogutsnoglory

Moderator
Welcome Margaret you are certainly a Crohn's veteran! I really admire and feel for those like you diagnosed long ago as there was really nothing out there besides prednisone. We have come a long way in terms of research and medication and there is better hope for people growing with this illness now.

Do you see yourself on disability permanently or are you hoping that through treatment you may be able to eventually get back into the work force? Have you considered consulting or remote work. My friend works in IT from his house and rarely goes into his office.

How has your disability affected your social or dating life? Are you able to get out much?
 
I was without a primary care for a while but my new primary referred me to a new GI, who is hopefully competent! I'll be seeing someone at the new GI next month.
 
I did! He is very reasonable, which was incredibly refreshing. My original diagnosis was a little unclear especially since I switched GIs a few times because I moved and transferred colleges. He looked through my old scopes and agreed that crohn's made sense as a potential diagnosis based on what the original scopes showed, but that it wasn't definite.

It's been so long since I've had scopes that he wanted to do a fresh set to see how my intestines are doing now before deciding where to go from here. My blood work all came back normal, which was good since I have a history of anemia and vit deficiency. White blood cells did show up in one of the stool tests, but those were otherwise normal.

I'm doing the prep today (yuck) and the scopes tomorrow, and I'm curious to see what they will show. My last set 4 years ago was normal. I'm not super sick right now, but new primary care & new GI both think it is good to keep tabs on things given my history. I still do have some pain & diarrhea but no weight loss currently. GI also started me on omeprazole which has helped with some of the upper pain and got rid of the nausea, which was nice. I used to take omeprazole but have been off of it for years.
 
Hi, Margaret, where were you living in 1975? You must have had a doctor who was really up on things because I don't think there were many cases diagnosed in the 1970s. I was diagnosed in 1982 but had had three years of symptoms without a correct diagnosis, and saw several doctors before I found one who had ever heard of Crohns. I'd love to hear more of your story (your diagnosis, your early treatments, your Crohns community, if you had one back then, etc.) -- did you post it in My Story?

KT

Hi, just wanted to introduce myself. I'm 51, diagnosed with Crohn's in 1975 when I was 13. Had surgery & complications in 2004 resulting in a temporary ileostomy that was reversed in 2005. Am on disability since 2004 after a long career in IT.

Margaret
 
Hi KT, we were living in England. I'd been sick for many years, and my mom had dragged me from doc to doc, all of whom told her I was just a picky eater and that she was overprotective and crazy. The doc who finally diagnosed me was far from on the ball. Her initial dx was anorexia nervosa. I never got around to posting in the My Story thread, so much of my tale is spread over several different threads. I should dig up all those posts so I can summarize them. My story is so long that it seemed like a monumental task to write about it in one place, which is why it probably came out in snippets. :D

4
 
KT, just realized I didn't address all your questions. I never had any Crohn's community. It was the very late '80s before I met another person with Crohn's, and only because my doc asked if I'd talk with a patient who was newly diagnosed and thought her life was over. My initial treatments were simply prednisolone & azathioprine, and I was fortunate that these drugs worked, as the only other option was a complete colectomy. By the time I was diagnosed, my doc didn't expect me to live through the night, so I'm very lucky I'm still around today. I remember the doc telling my parents that she never suspected Crohn's because it was usually found in men during their late teens. I don't know where she got that notion, as I've never heard it since.
 

nogutsnoglory

Moderator
I found a gastroenterologist who advertises in one of the free gay newspapers on the street corners in downtown Manhattan. He promotes himself as a gay gastro and hence addresses issues specific to the gay community during his assessment. He doesn't take insurance though and is majorly expensive. He better be damn good for the price he charges!

I am thinking of going to him for a consultation just to ask some questions I wouldn't feel comfortable asking a straight or doctor with an unknown orientation. Do you think a GI would accept a patient coming on occasion just for questions without letting him treat me and oversee my care?
 

DustyKat

Super Moderator
Since you are paying him out of pocket I don't see why not and really it would be no different to seeking a second opinion. :)

Dusty. xxx
 

nogutsnoglory

Moderator
I mean if I just made an appointment I'd be in the room and can ask my questions but it seems most docs want you to be their exclusive and may not like me coming back in the future if I sinply just want to pick his brain.

I had an internist who was good in the sense that it was easy to get an appt and blood results in a day but he wasn't so great as a doc. I tried to have 2 internists and do routine blood work with the eh doctor and go to another when I really felt ill. Well both doctors chastised me that I cannot do that and need to pick one.
 

DustyKat

Super Moderator
Ah okay, so you may look to see this doc more than once if he was okay but likely not as a full time patient?

The issue with having two doctors (GP/GP, specialist/specialist) that treat the same thing is unless they are willing to communicate with each other, and most won't, then the left hand doesn't know what the right hand is doing and they may prescribe treatment without being fully aware of past or current treatments and their outcome/issues.

Dusty. xxx
 

nogutsnoglory

Moderator
Right, I would only see him to answer questions but not prescribe medication or conduct any exams.

I understand that they want a cohesive team one GI working in conjunction with one internist, one ostomy nurse etc. I know they feel they have control over the situation but I'm very on top of my health and always have my medical records. I almost feel like the medical establishment treats us like children. I know what I'm doing and its my life and body.
 

DustyKat

Super Moderator
I hear you loud and clear ngng and agree wholeheartedly. I too wish was different and that the majority didn't always have to pay for minority...as in those that aren't on top of their health and hence leave out key parts of their history and those that doctor shop. {sigh}

Dusty. xxx
 
Hi, everyone,

My name is Kristin and I'm 33 (almost 34...in November) years old. I was recently diagnosed with UC on July 18 2013 and so far it appears that I'm in remission. I look forward to keeping in touch with all of you so we can share our IBD experiences (and other issues) together!
 

nogutsnoglory

Moderator
Hi Kristin, so glad you could join us. The medication must have acted quickly since you were just diagnosed in July. Was it mild inflammation? Either way glad you are feeling good now.
 

nogutsnoglory

Moderator
Gay marriage comes to New Jersey. Now I think the entire Northeast of the U.S. has marriage equality. Even though the overwhelming majority of NJ residents and legislators support marriage, Governor Chris Christie kept vetoing it.

I'm sure the opposition will appeal this but the legislature now has a veto proof majority after securing some republicans. I think this is a done deal.

http://www.npr.org/blogs/thetwo-way/2013/09/27/226885697/new-jersey-judge-rules-state-must-allow-gay-couples-to-marry

I will celebrate with instant udon noodle soup. Ok, fine was making it anyway lol.
 
Well I am a 42 year old lesbian with a wonderfull partner. I started having digestive problems about twenty years ago when I was diagnosed with IBS at that point it was severe abdominal pain and screaming diarrhea which I am now sure was a Crohn's flare. I have gastroparesis along with the Crohn's diagnosis and a delayed motility disorder. I currently take Lialda, protonics,l-glutamine, klonopin , and multi vitamin.:ylol2:
 

nogutsnoglory

Moderator
Welcome selenabaroni, great to have you join us here. How is your partner handling your illness? I imagine she is supportive since you described her as "wonderful". It's so nice to hear about strong loving relationships in spite of our struggles with health.

What is a protonic btw, did you mean probiotics?
 

nogutsnoglory

Moderator
Hi ThePear, welcome and Beach bum is right, when you reply here you automatically joined the group. You can post here or if you are so inclined can participate in the GLBT sub-forum http://www.crohnsforum.com/forumdisplay.php?f=296 we would love to know more about you and your story.

On a separate note I figured I'd share with the forum a disturbing but funny happening tonight. Being the political junkie I am, I have been watching testimony by average citizens on the marriage equality bill in Hawaii. Since anyone can testify, you always have passionate people on both sides and a handful of nuts.

One of the nuts proclaimed that "there are several gay Ostomates" because of their sexual behavior. I wanted to scream back at my screen saying "where are they?" As a gay man with an ostomy thanks to my crohn's not my orientation I'd like to know where all these gay Ostomates are that this nut referenced, I don't know any. Maybe I just need to move to Hawaii lol. Aloha.
 
Hi ThePear, welcome and Beach bum is right, when you reply here you automatically joined the group. You can post here or if you are so inclined can participate in the GLBT sub-forum http://www.crohnsforum.com/forumdisplay.php?f=296 we would love to know more about you and your story.

On a separate note I figured I'd share with the forum a disturbing but funny happening tonight. Being the political junkie I am, I have been watching testimony by average citizens on the marriage equality bill in Hawaii. Since anyone can testify, you always have passionate people on both sides and a handful of nuts.

One of the nuts proclaimed that "there are several gay Ostomates" because of their sexual behavior. I wanted to scream back at my screen saying "where are they?" As a gay man with an ostomy thanks to my crohn's not my orientation I'd like to know where all these gay Ostomates are that this nut referenced, I don't know any. Maybe I just need to move to Hawaii lol. Aloha.
Oh I know! The only thing worse than all those "gay ostomates" are all those heterosexual women with HPV. Gotta get rid of them next! :facepalm:
 
how ridiculous! Had to laugh at that one. Gay 'ostomates'? Good lord. The gay marriage debate has been interesting and frightening in many ways, but I love seeing so many states vote it through regardless of the protesters. My son still lives in Wisconsin (with Walker in office, unlikely gay marriage will pass there anytime soon) but I've told him to come on over to MN, because it's legal here and his mommy can see him more often! :D
 

nogutsnoglory

Moderator
Happy November! So the gay Ostomates nut continues her whatever the hell she is doing. She testified before the Hawaii house too and said basically the same lines but this time said one website alone has over 10,000 gay Ostomates. I gotta find this woman so I can find this secret society and join it.

Mccindy, you are right that the debates can be nutty at times. I know people of faith can differ on this issue but throwing out absurd figures that aren't based in reality are just flat out wrong. We have come a long way, Hawaii is poised to become the 15th state to allow marriage. The U.S. Senate will likely pass ENDA the Employment Non Discrimination Act on Monday. There is zero chance it will get through the house. The point is the landscape is changing and all these issues will soon no longer be. Even in Wisconsin! I can't believe its a debate about whether it's ok to fire someone just for being gay or trans but it's still the case in 33 states.
 
ha, jw, that is funny!:ylol2:

Noguts, I'm still hoping for the day when the whole gay marriage issue is no longer an ISSUE! It should just be marriage for everyone!

I had a meme on my facebook page not too long ago that said, It's very dear to me, this issue of gay marriage. Or, as I like to call it, marriage. Because I didn't go to gay breakfast this morning or gay park my car. (Paraphrased but I thought it was epic). Love is love and if two people want to devote their lives to each other and bind themselves together legally, it should only be up to them. :kiss:
 

nogutsnoglory

Moderator
Oh and Jwfoise you certainly are an osto-mate by choice. Is a pirate or sailor with an ostomy an osto-matey? How do you find being married to a woman with an ostomy? Did you have any issues in terms of getting used to it?

Mccindy you are right on. It's just marriage, and these terms are sometimes just used to further stigmatize and differentiate people. The term gay agenda is so silly but I liked the sign that said the gay agenda: 1. Buy milk 2. Find a husband.
 
Hello all. I justed wanted to say hi. I just joined today. it's great to have resources like this to talk about issues, especially gay related issues. I hope everyone is doing well.

:)
 
Oh and Jwfoise you certainly are an osto-mate by choice. Is a pirate or sailor with an ostomy an osto-matey? How do you find being married to a woman with an ostomy? Did you have any issues in terms of getting used to it?
We were married for quite a while before she got her ostomy. I will say it took a little while to get used to it; we went to a therapist who specialized in couples where one of them has gone through major surgery (I think she mostly worked with cancer, particularly breast cancer patients) and that helped a lot. She actually gave as many practical suggestions, versus emotional support. Details are probably more appropriate for another thread.

The term gay agenda is so silly but I liked the sign that said the gay agenda: 1. Buy milk 2. Find a husband.
:lol:
 

nogutsnoglory

Moderator
Jwfoise I'd love to hear more about those details. Maybe a new thread here or in the stoma forum if you care to share? It's a topic I ponder being a new ostomate.
 
I'd also be interested in hearing more about this. The information could apply to any situation involving major surgery or illness in one partner. As someone who is facing debility in the future with the inevitable return of my brain cancer, it would be helpful to have information to share with my husband regarding facing that together.
 
Just popping in to say Hi. Gay Scottish guy here, in a civil partnership for 10 years and never been happier. I haven't looked through many of the other messages in this support forum yet but hope to be around often to say hi and catch up with gossip. I have Crohn's and have good days and bad days with one or two big flares a year.
 
Hi, Guy Fox! Boy, I wish I could hear you talk, because the Scottish accent is my absolute favorite. I'm glad to hear you have a long-term partner who is making you so happy! My son has a good partner too who is a great guy, I'm hoping they stick it out for the long term. :)
 

nogutsnoglory

Moderator
Welcome guy fox! I think there is another gay Scottish married guy with crohn's here who posted a few months back. I'm going to look back to see where that thread is.

Are you on any treatment regiment now? How has your husband handled your illness and the ups and downs?

Definitely have a look around the forum and participate in any threads of interest or start your own.
 
Welcome guy fox! I think there is another gay Scottish married guy with crohn's here who posted a few months back.
Are you on any treatment regiment now?

Definitely have a look around the forum and participate in any threads of interest or start your own.
Thanks Nogutsnoglory. I am on Asacol, Azathioprine, Omeprazole and when flaring Pred. Sometimes add Betamethazone as a mouthwash for ulcers in the mouth. My man is great, very supportive but I think he gets drained when supporting me through a flair. This year has been quite tough, had appendectomy in July but been good since then. Feeling good now, hopefully this is a longer lasting remission.
 
Hi, Guy Fox! Boy, I wish I could hear you talk, because the Scottish accent is my absolute favorite. I'm glad to hear you have a long-term partner who is making you so happy! My son has a good partner too who is a great guy, I'm hoping they stick it out for the long term. :)
My partner is from Atlanta and his Mom grew up in Minnesota. We met on the Scottish Island of Mull. Great that your son has your support. Have a happy holiday.
 

nogutsnoglory

Moderator
That's so awesome that your partner is supportive. Been reading about a lot of supportive and not so supportive spouses. It's gotta be challenging for them too because they care about you but don't fully understand and everyone processes bad news and events differently. I think going through illness I am more understanding and would be much more accepting of a partners health issues if they arise.
 
"Ceud mìle fàilte - bliadhna mhath ùr" to my Celtic cousin. I suppose that's what one might call a 'Gay'lic rendition of a ''Happy new yeah". I know it is bad, but I couldn't resist the pun.

In any event, to wish all the same in IRISH "Athbliain faoi shéan 's faoi mhaise daoibh go léir."
 

nogutsnoglory

Moderator
First date today since my stoma. I'm nervous it will misbehave but I put a new bag on and I'll be in a crowded place so if it's noisy he probably won't hear it. I'm not totally psyched about this guy and I'm compromising but it's more of a test for me to get back in the game and to feel somewhat normal again. Who knows maybe it will be fun. I guess my stoma depending on how it behaves will let me know if it approves or not.
 
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