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02-24-2013, 07:46 PM   #1
nogutsnoglory
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Gay/Lesbian/Bisexual/Transgender & Straight Allies Support Group

About this Support Group

Welcome to the Gay/Lesbian/Bisexual/Transgender (GLBT) & Straight Allies Support Group. It's hard enough having Crohn's Disease or Ulcerative Colitis or another form of IBD and even harder when you are a minority within a minority group. Whether you are single or partnered, queer or straight, please know you are welcome here!

Topics in the group can range from but are not limited to discussion on dating/relationships, discrimination/homophobia, health disparities, sexuality, or just simply to be social and chat amongst friends.

Please join us and introduce yourself and/or bring up a topic for discussion.

Members

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Last edited by nogutsnoglory; 02-24-2013 at 07:50 PM. Reason: Didn't realize it auto adds "support group"
02-24-2013, 10:09 PM   #2
VictoriaSage
 
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Hello everyone!

I suppose I will begin by introducing myself! My name is Victoria, and I'm 27. I love art and am developing ideas for a comic. Video games, especially Pokemon, are another area of interest. Um, well. Can't really think of much else to say right now! Haha, I'm no good at these sorts of things.

As far as my experience with Crohn's, I was diagnosed while in college over five years ago. Right now I am on Pentasa; but my new specialist will be evaluating it's effectiveness for me soon.
02-24-2013, 11:23 PM   #3
SMSIRL
 
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Location: Dublin, Ireland

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Hi everybody, my name is Seán and I am a gay guy from Ireland.
I was out before it was legal here. On February 7th 2011, I became the first person to say "I do" under Ireland's Civil Partnership Legislation. This legislation provided the first recognition for same-sex unions under Irish law. With a twist of irony, the media, which had been hyping it all during the month of March [offering money for the scoop etc.] managed to miss it. As there was the usual 3 months notice period under Irish law, they were not expecting anything to happen until April. However, my partner and I, never known for being conventional, had sought and recieved a court exemption on medical grounds. We had a great day, not just on the day, but also as the media announced they were covering the first ceremony! Then they announced they were covering the first "public" ceremony. Then having realised that all civil partnerships have to be done in public [and our's was], they announced they were covering the first ceremony not requiring an exemption. It really did cause problems for those writing headlines. The real irony is that my partner worked in Irish television for years, and the story was right under their noses! If only they asked .


As for my Crohn's, I also have form there. I've had it for nearly 30years, but as with the media above, the doctors only noticed it 10 years ago. I am on Imuran, and will probably have surgery shortly.

That's it for now.
Seán
02-25-2013, 01:20 AM   #4
Jasoncode3
 
Join Date: Jan 2012
Location: Santa Rosa, California

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Hi, I'm jason. I have had my Crohn's diagnosis for three years.probably had crohns for wqw 11 years. Had a partial colectomy in jan 2012. On Rmicade and in remission. Oh yeah, I'm gay too. In the process of adopting two babies with my partner. Life is good.
02-25-2013, 03:58 AM   #5
Skycruiser
 
Join Date: May 2012
Location: Washington
Deleted.

Last edited by Skycruiser; 07-31-2015 at 06:21 AM.
02-25-2013, 03:01 PM   #6
nogutsnoglory
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Thanks to everyone who has joined in to introduce themselves or start conversation. If you haven't already, don't be shy and say hi. That rhymes!

I am a gay male from NY living with aggressive Crohn's for the past couple of years. It has taken a toll on me both physically and emotionally. I haven't been able to go out much but would like to find a boyfriend and ultimately a partner to start a family with. I hope the guys I meet going forward will be open to being with someone who has a chronic disease.

VictoriaSage: Have you connected with the LGBT center in Rochester. I think it's so cool you have an LGBT or gay friendly gastroenterologist up by you. I only found one in NY but he didn't take insurance. It's a shame since he got good reviews. I am sure there are more but I do not know of them.

SMSIRL: You are like a gay IBD mini-celebrity. Congratulations on your wedding and hopefully Ireland enacts marriage equality soon. I think they are actively considering it as they are in other parts of Europe and the world. Do you have any pictures or news links you can send us?

Jasoncode: So happy to hear remicade put you into remission. That is exciting about you and your partner adopting. Where are you from? I know adoption can be a real pain, hope it won't cost you an arm and a leg.

B.Prester:You take the cake for being a super minority! That's great to hear that you will use your experience to provide services with an LGBT focus. Do you wish to be part of an organization, institution or just private practice with advertising the fact that LGBT is a speciality?
02-25-2013, 03:21 PM   #7
plaidknitter
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Hi everyone! I have indeterminate IBD (most likely crohn's), and I'm a queer woman.


& autocorrect...
__________________
IBD (mostly likely Crohn's), Celiac Disease, and Multiple Food Allergies
02-25-2013, 04:10 PM   #8
Beach bum
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Hi everyone I am a Bi woman and I am very happily married to a wonderful man.

I am and always have been very comfortable with my own sexuality, but find others - from both sides of the fence - can be judgemental at times.
I guess it is understandable as alot of lesbians have been hurt by Bi women.

As I/we haven't had any female partners in the last couple of years, my Crohns hasn't been an issue in that way yet. But I do worry about it being an issue in the future if I became intimate with someone new.


In the meantime, I just wanted to send my support to everyone here.
__________________
Crohn's Diagnosed : 12/07/12
Been on : Budesonide (some relief but not enough).
Switching to : Azathioprine and started Infliximab 14/08/12
Juicing every morning.
Taking vitamin D spray
Multi vits & iron
And Probio 7 probiotic.
.

Being given a "drugs rest" from Aza - 17/9/14

Last edited by Beach bum; 02-25-2013 at 04:26 PM.
02-25-2013, 04:18 PM   #9
MikeSA
 
Join Date: Feb 2013
Location: Cape Town, South Africa

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Hi all!

I am South African (Cape Town) and have been living with diagnosed Crohn's for about 2.5 years now, and symptoms possibly for about 4, or so, years.

I am gay, and have not "come out" to any specialist/GP, as the issue has never arisen for me. I guess I am excited to find a group who shares similar interests whilst struggling with the disease.

Not quite sure what to say at the moment. I am in my final year of studies, which involves quite a hectic workload (busy from 7am-6pm), so juggling symptoms and studies is probably a priority in my life at the moment. However, I have been lucky not to have had bad symptoms for a while now. Just the occassional bad week or so.

In what instances would people advise coming out to your local GP, other than obvious sexually-related issues? Do you folk feel more comfortable around one who knows of your sexual identity? It has crossed my mind before, but I have never felt the need (or been pressed in the situation) to come out, or bring up my sexuality.
02-25-2013, 06:30 PM   #10
beenaround
 
Join Date: Sep 2011

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Hi folks! I've had crohn's disease since the age of 11, I'm 59 yo. I've had 2 resections. Major drugs now on are Humira and azathioprine. And oh yes I'm gay and I'm single. Came out late at 38 yo (no, never dated women).
02-25-2013, 11:03 PM   #11
nogutsnoglory
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Plaid: have you done any testing? Why do they say they can't determine?

Beach bum: bi people are often misunderstood and thought of as selfish. I have many bi friends who can fall in love with someone of either gender and be totally monogamous with that person. Even in the gay community there is significant bi phobia.

Mikesa: I came out to one doctor who immediately wanted to run an HIV test and told me to use condoms. She also said she wanted to check for hepatitis due to my "lifestyle". I felt offended because a lifestyle implies choice and I'm a monogamous guy and not some party animal. I guess she was just doing her job.

Been around: wow that's a long time with IBD. Welcome!
02-25-2013, 11:06 PM   #12
nogutsnoglory
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I am really skinny now and look somewhat malnourished but its my sincere goal to get back into the dating world in a few weeks. I started getting an "I can't do it" mentality due to this disease but I'm starting to feel empowered and won't let Crohn's stand in the way if my life. I want to do everything in my power to gain weight, fight the inflammation and get back out there. I am so sick of being single, I want someone to love and be with through the good and the bad.
02-25-2013, 11:28 PM   #13
plaidknitter
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I bounced from GI to GI for a while going from ped GI to adult GI to being away at college to transferring to a different college, graduating, and then moving! Not all the GIs agreed with each other, and some where just outright crappy doctors.

The most helpful of the GI's told me I had esophagitis, gastritis, contact bleeding in the small intestine, ileitis, and then put me on pentasa and omeprazole and sent me on my merry way. She said I had inflammatory bowel disease but did not specify crohn's vs colitis. Somewhere in there I was on prednisone for a bit, and it helped temporarily. No signs of h pylori or something infectious.

The pentasa helped for a while but then I started having bleeding again, and a diff GI stopped all my meds and did a colonoscopy but no endoscopy (didn't have time before I went back to college). Colonoscopy just showed internal hemoroids, which hadn't been there before.

I was diagnosed with celiac disease first, then multiple food allergies, and then IBD after I continued to be sick. I am also chronically b12 and d deficient and get mouth ulcers and joint pain.

From what research I've done on my own, it seems like my stuff is more consistent with crohn's than colitis.

I saw yet another GI after graduating who was a pretty big jerk. He didn't do anything particularly helpful, and my primary care hadn't wanted me to go there in the first place (but left out the part about him being a giant jerk!).

I need a new GI. I'm pretty much managing things with the SCD and Imodium. My primary care handles my b12 injections and d supplements.


& autocorrect...
02-25-2013, 11:38 PM   #14
nogutsnoglory
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Ulcerative Colitis would not effect the small intestine but that is a very common place for Crohn's disease. It sounds like you may benefit from having another GI evaluate you. Pentasa likely won't do anything beyond your colon so if the problem is in the small intestine you may want to consider other meds.
02-25-2013, 11:42 PM   #15
sickofcrohns
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Location: Toronto, Canada
Hi there. I am a straight woman, but an ally. My diagnosis story is here. It includes being yelled at by multiple doctors, accused of seeking drugs, and being told I had herpes (what I had were Crohn's-related ulcers).

I've been on Remicade for 9 years now and just got off steroids in the summer, after 10.5 years. Woohoo!

Last edited by sickofcrohns; 02-26-2013 at 12:15 AM.
02-26-2013, 12:14 AM   #16
VictoriaSage
 
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Location: Rochester, New York

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nogutsnoglory: Sadly I have not been able to get to the center yet, as rides have just not worked out. I may be getting a good job soon though where I will be able to afford a car and then go at any time I choose. Also, I'm stuck with a certain hospital as well because of insurance. Lately Crohn's has been really expensive for me and basically wiped out my bank account. Luckily my room mates are understanding and very supportive!
02-26-2013, 02:31 AM   #17
SMSIRL
 
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Location: Dublin, Ireland

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NoGutsNoGlory, given how the story unfolded, I am the least celeb celeb. The first to get the story, the Irish Examiner, were only two weeks late but had no details or pics. Actually, apart from the family snap album there aren't any pics. The references that most offended me came from the UK Pink press, when they had the title "Ireland’s first civil partnerships have taken place early and in secret". Ours was in public - In the main Registration Office in Dublin city, and, given that we were both out when it was illegal, we were more than happy if the media came along on the day. All they had to do was ask the registration offices to keep them posted. When the story actually broke, the health issues that made us seek the exemption, intervened and we were happy to watch from the side. The two lads who provided the media with the media shots, were two really nice guys who weren't quite as unhealthy specimens as we were, and made the ideal couple for the day. So, we were happy that the coverage was good on that day. There is one journalist who did her homework, and aproached us after the media ceremony, and she will get to do the story - but not now, as my partner is not up to dealing with a media circus that will follow. I'll keep you posted - then I can be the poster "boy" [not quite boy - but I remember those days] for gay civil partner chronies in Ireland.

Yes, they are talking about civil marriage too, but while there probably would be a majority in the Dáil, the senior partners in the current government, and the current Taoiseach(prime minister) , are a rather conservative group - they tend to be too focused on how we are perceived abroad, rather than how we perceive ourselves. If they do get around to it, we'll try repeat our record as firsts, but this time we will kick the media until they notice. The government as a whole may pass something before the next elections, given that they are starting to slump in the polls and need a boost. The public, and particularlly the young, tend to be very in favour of gay rights. At the last debate on civil partnership there were only 4 in the seanad that were activily trying to block its passage. The tried to talk it out of time, but they failed because the cathoirlaigh/chair(s) wouldn't let them.
02-26-2013, 05:09 AM   #18
Skycruiser
 
Join Date: May 2012
Location: Washington
Deleted.

Last edited by Skycruiser; 07-31-2015 at 06:24 AM.
02-26-2013, 06:18 AM   #19
Beach bum
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plaidknitter do you take any vit.D supplements - I used to have alot of problems with mouth ulcers and sores at the mouth corners before I started taking Dlux 1000 Vitamin D Spray everyday. The spray seems much better than a pill as it is immediately absorbed.
02-26-2013, 05:28 PM   #20
JJ_777
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Location: Anglesea, Victoria, Australia

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Hi everyone!! Firstly a quick thanks to nohutsnoglory for the invite :-)

My name is JJ, I am a 30 year old woman who has been with my female partner for almost five years (ive always been gay) and could myself as VERY lucky...

A quick rundown of my story looks something like this...

I met my partner when I was 25, two weeks later I found a breast lump, a month later had a biopsy then started getting infection after infection in the breast.... I was consequently fired from my job for taking too much time off.

I moved in with my partner not long after that (she should have ran away then... But she didn't...) I had the precancerous breast lump removed two years later at 27, and had been too sick with infections, D at least twice to three times everyday, joint pain, nausea, cramps, and sciatica, to work... Also my platelets were up and I was anemic... So I took on part time University study from home....

After a barage of 'normal' tests My GP (primary care giver?) sent me to see a GI who conducted a colonoscopy, endoscopy, barium X-ray, MRI -- all of which showed nothing... As a last resort she organized a 'pill cam' and found ulcers in my terminal ileum and some inflammation in my colon... dX 'mild' crohns

My partner could have run then too.... But nope...

My crohns got steadily worse until it reached its peak of D 25 times a day, nausea, anemia, cramps, fatty liver, severe joint pain etc... I was on copious amounts of Salofalk (the equivalent to pentasa?) More than twice the maximum dose (my GI said that it wouldnt hurt... Wrong...)

So here we were two years into our relationship... I'd had a breast lump removed and a DX of a chronic disease... Our relationship was also being tested by her parents who disapprove of her being gay, let alone in a relationship with a lazy bum who 'won't' work.... She should have ran then....

So suddenly I was starting to have SEVERE flank pain followed by copious amount of blood in the urine and was being rushed to hospital every couple of weeks only to be sent home 5-7 days later with no diagnosis... I had everyone stumped.... My poor partner would work a 14 hour day, 6 days a week, come home and feed our animals, come to the hospital and sit by my bed for 3-4 hours, bring me food (as I am on a dairy free gluten free diet...) take my washing home and do it all over again the next day (yup, she's an angel)

It took them a further 18 months to work out that I had a rare kidney disease called renal papillary necrosis (where part of my kidney was dying, shedding and then getting stuck in my ureter) I had a stent fitted but it was removed 3 weeks later due to a major infection.... So now there is nothing they can do for me besides pain meds (which I try not to take as they make me severely depressed)

A week after I got out of hospital in April 2011 my partner proposed... we have been engaged ever since... (its still ot legal in australia) So as I said... I count myself as VERY lucky, my partner has seen me at my absolute worst... And still wants to marry me... The woman needs a medal I swear!

We are currently discussing children which of course is complicated due to my many illnesses... And she works full time, so we are looking at other opinions such as adopting (difficult in Australia) or fostering... I am flaring again at the moment so I'm thinking it will go in hold again for a little while...

I'm sorry for the ridiculously looooonnngggg story, but I just wanted to say that there ARE good people in this world who will accept you and love you no matter what... I pray that those of you looking for love are as lucky as I have been!

Looking forward to talking to you all in the forum!

JJ xxx
__________________
Dx Jan 2011 Crohn's disease Terminal illium & Colon
Dx October 2011 Renal Papillary Necrosis

Meds: Entocort/Budesonide 6mg
Multivitamins
Oxycodone (for strong pain)
Pramin (for nausea)


02-27-2013, 07:44 PM   #21
nogutsnoglory
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Sickofcrohns: I can't believe a doctor can't differentiate and couldn't diagnose your ulcer. Have you switched to IBD knowledgeable docs?

Victoria: insurance makes no money on me lol! God forbid I wasn't covered the costs would be in the tens of thousands per year.

SMSIRL: what's interesting is Ireland is a fairly religious country but they can mostly separate civil marriage from religious marriage. Here in the states the conservatives can't comprehend the difference.

B.prester: that's great, when not sick I do volunteer work for the LGBT community. I hope to get back to it because giving back is what I truly love.

Beach bum: I never saw a vit D spray. Is it D3? That is the best form of vit d.

JJ: welcome! I think it's one thing if someone starts dating someone and finds out they are sick but if you love the person and are with them and find out but leave you are a jerk. I understand its hard on our partners but as the wedding vows say in sickness and in health.
02-27-2013, 08:35 PM   #22
katiesue1506
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Join Date: Nov 2006
Straight ally here. Just wanting to show some support!
02-27-2013, 11:26 PM   #23
nogutsnoglory
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Thanks Katiesue! (Hugs)
02-28-2013, 04:55 AM   #24
Beach bum
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Yes it is D3 - this is the one I get, I think it comes in stronger doses though.

http://www.hollandandbarrett.com/pag...d=2843&cid=163
02-28-2013, 09:24 AM   #25
nogutsnoglory
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It looks like a great product but they only deliver in Europe. Ill try to find a similar product here if one exists.
02-28-2013, 12:01 PM   #26
plaidknitter
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That d spray looks pretty awesome. I haven't seen something like that in the US before, but I can't say I ever thought to look!

The d supplement I take is a once weekly high dose pill.


& autocorrect...
02-28-2013, 12:26 PM   #27
nogutsnoglory
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Dr. Mercola has a D3 spray http://products.mercola.com/vitamin-d-spray/

It's 6,000 IU in 6 sprays. I wouldn't do more than 2-3 sprays a day myself. I'm considering buying it but also looking at possible alternatives since I don't fully trust this company anymore.
02-28-2013, 07:28 PM   #28
nogutsnoglory
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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.
02-28-2013, 09:11 PM   #29
plaidknitter
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Haha, that's a good way to look on the bright side! I love skinny jeans, but I've been so bloated and sore that I only want to wear sweats. It is not a good look.


& autocorrect...
02-28-2013, 10:21 PM   #30
nogutsnoglory
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Haha, that's a good way to look on the bright side! I love skinny jeans, but I've been so bloated and sore that I only want to wear sweats. It is not a good look.


& autocorrect...
Have you seen the sweater jeans like things? They aren't the hottest thing on the planet but at least you can be more stylish while comfortable.

https://www.pajamajeans.com/
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