One of my biggest fears may become reality ;(

[nogutsnoglory]

My perianal disease has been very aggressive and my surgeon said I probably need an ostomy bag or permanent setons. Apparently this seton procedure is very hard to undo and you are kind of stuck with it for life.

I feel like I am likely on the brink of losing a part of my sex life as a gay man and this is very depressing and will make it even harder to find a potential mate who would be understanding of my condition. Not only would a foreign object in the way be sexually unappealing but it would be a constant reminder of my limitations and my illness for both me and a future partner.

When I first started thinking of all the complications of my abscesses and fistulas I was just sobbing non stop thinking how I definitely won't end up with anyone and also a source of pleasure is taken away when there is little left to enjoy in this world.

I have come to better terms with it as time goes by. There are gay men out there who could probably overlook it for the other aspects of me.

 

[Cosmojo]

Oh my goodness I wish I could give you a big hug!

I'm sorry that you find yourself in this situation, and I wish I had some magical words to say to you to make it all better. I just wanted to say that we are here for you. Just remember anyone who is deserving of you will understand any limitations you may have and will love you even more for all of the struggles you have overcome.

 

[nogutsnoglory]

Thank you Cosmo I would love hugs now its just been such a roller coaster of pain and emotion lately. I guess life throws out wrenches and we just need to navigate them. I just feel so scared and hopeless as to my future now in all respects.

 

[araceli]

I just want to send you a BIG HUG.

 

[Cosmojo]

hey nogutnoglory- there is always hope seriously. I cant imagine how hard this might be for you but there is always hope. Who knows maybe that special guy for you has IBD too. Ha is it bad I've kinda always hoped my significant other would have IBD?
Don't let this define you by your disease anymore than we already have to.

 

[Kev]

I wish I had a solution up my sleeve, or some pertinent insight, advice to offer. I don't. All I can say is... there are times when all we see are the obstacles, the downsides. But when we get past them, our eyes open up, our perspective changes, and eventually we see the light midst the darkness. You are in a dark place right now, but perservere, and there will be better days ahead. I recall a very dark point in my life, seems ages ago.. but it really wasn't that long ago. I don't want to re-visit it, but I'll never forget it either.

Explore your options, seek out 2nd opinions, even thirds. You may find your solution too.

 

[nogutsnoglory]

Thanks for all of your support guys! It's so hard to know how this will all manifest itself until it happens but in the meantime I'm just speculating and that just drives me crazy and gets me more depressed thinking about the consequences.

Cosmo I don't think it's crazy to prefer to go out with someone with ibd. I have actually gone out with 3 guys with crohn's ironically and unintentionally. First one there wasn't really any chemistry, second I really liked but it wasn't mutual and the third one nothing happened.

I think it would be hard if both partners had active crohn's. What a ****** relationship lol.

Also ill need to start thinking about how to come out with an ostomy bag but I'm sure there are tons of threads on here for me to check out. There is also a Gay & Lesbian Ostomy organization, forum and dating site. Not terribly active but I never pursued it but could be worth looking into.

 

[Amy2]

https://www.superbetter.com/

 

[Dragonfly72]

<3 sending hugs. Stay strong your in my prayer

 

[mere282]

Good thoughts and hugs your way

 

[plaidknitter]

Big hugs! That is certainly scary to think about, but I think that there are awesome people out there who are willing, compassionate, and understanding when it comes to dating people who have disabilities. Don't lose hope.

 

[nogutsnoglory]

You guys are all simply amazing. I told one of my friends and he is also gay and would understand all the reasons we all hate the idea of a bag plus the extra for my sexual identity. So far only my family knows about this likelihood. I was on the phone and cried 5 minutes before being able to get into what's going on and what they propose to do. I just feel so humiliated and embarrassed. I know this isn't my fault but its just so cruel when disease turns to an intimate or private spot. I can't imagine the sense of shame and loss of femininity a woman must go through if she needs a mastectomy or any vaginal surgery. I can't imagine how scary penile or testicular cancer must be on a male. It's just not very fair in this world but I guess there is a broader life lesson for those of us who suffer. In the end all this is meaningless, its our love for others and the world that counts. Maybe I won't let this disease make me bitter ever, it might take everything from me but ill fight back with pure love and kindness. Take that Crohn's! <3

 

[BlessingsK]

I love that, 'fight back with pure love and kindness. Take that, Crohn's'. And might I add gratitude. Gratitude for legs, skin, eyesight, the ability to express yourself so beautifully, and even gratitude for these challenges that take us God knows where, but that will eventually lighten. What if because of all this you are led to a person beyond your wildest dreams who is completely understanding and you experience a most profound love that transcends actual sex (If that becomes difficult)? Love is so big, you are in my prayers. We stand together.

 

[Samboi]

Hi NGNG
Wow you are having a shocker of a year.
Just a quick reminder - every pot has a lid and you will find yours.
Remember that nurse I met - I think I told you about her.
She thought it was dead sexy that I had a bag.
I was gobsmacked. But she thought it was incredibly hot.
You'll find your fella.
You're a top bloke - so he'll be lucky to have you too.
Xx

 

[nogutsnoglory]

Just an update for now on having the bag, I feel sort of numb mentally and haven't really even given much thought to the idea of dating or going out and living a normal day to day life as these things seem so foreign to me now. I feel that through all the pain and agony of this illness I have lost a sense of my humanity and now just live to care for myself. I am adjusting to the needs of the stoma and bag and the complications of dealing with them. I feel like there is so much in terms of just living with the bag that all the emotional and mental stuff becomes secondary but I know it will hit me like a ton of bricks soon. I am just not sure when my mind will allow me to deal with it but I am kind of glad it is allowing me to cope with one issue at a time and let me heal and adjust. Thanks again for your support and love. Without this forum I would feel so alone on this journey. <3

 

[BlessingsK]

Oh nogutsnoglory, I'm sending you huge hugs. So sorry you are having to go through this. It is a "one day at a time" proposition, isn't it? Physically and mentally. I sure hope you have someone to help you do what needs to be done. The rest of your life can wait while you get used to the bag. I know what you mean about life seeming to be taken up by cleaning and care of basic needs. I believe it will get better for you, but I give you so much credit for standing up to this disease and doing what you have to do. Humanity robber or not, you will fight back with pure love (your post from above). Just a friendly reminder to keep loving and if it helps you, a sense of some major spiritual impurity or 'bad karma' from some other lifetime or some long gone ancestor is being TOTALLY cleared up. You have been through enough. Now we ask that you heal and experience joy. How grateful we are to simply have a nice cup of peppermint tea with a friend. Stay strong, hang in there. Thank you for sharing.

 

[sickofcrohns]

So sorry that you're going through this. I personally don't have a bag, but I've met some people who do and they've said that it's changed their lives 100% for the better, including their sex lives. I was shocked at this, but it turns out that they now have no pain, and lots of energy. So if you find a decent partner, it should not be as big an issue as it initially seems.

Also, I know there are corset-type things for women -- maybe there are fun dress-up things for guys with bags, too. With the right partner, it could be kind of fun. . .

 

[nogutsnoglory]

Blessings you are right that all we can do is become stronger through our adversity. Our "real" struggles put life in perspective. Remember when our problems were about not getting invited to a party, having a date, getting the grade. That stuff is so inconsequential when you look back at it. The main thing in life is to have your health and love and support from friends and family. Everything else is a perk or nuisance but a bump in the long road of life. I often wonder about bad karma or spiritual lessons. Maybe our pain is to teach us. Maybe we were awful to someone with an ailment in a past life if those exist. Who knows what the reason is for things. I think we become stronger and more compassionate through facing adversity. I learned my lesson though!! Enough pain lol

Sickofcrohns I have also met people who loved their bag after they got through the initial hell. It really does offer many a quality of life they couldn't have and the nuisance and issues with the bag are less difficult to deal with than life before the bag. I know things will get better, pain will decrease, meds will be figured out and ill figure out the tricks to living with a bag. I still do pray that a reversal will be possible and know that is the hope but its very iffy based on the severity of my abscesses and fistulas.

I found a gay Ostomates organization as well and if they meet I'd like to attend. I know they meet at the annual ostomy conferences put on by United Ostomy Association of America but I guess it's too small a population to have active support groups in cities. I mean if 5% of the population is gay and 1 million Americans live with an ostomy that means there are 50,000 gay Ostomates in America. I can't believe I'm that dorky that I just did math on statistics that are based on an educated guess.

 

[sickofcrohns]

Really? Only 5% of Americans are gay? -- Well, I guess if men are 50% of the population and 10% of men are gay, then that works out to 5%. Duh.

 

[sickofcrohns]

Really? Only 5% of Americans are gay? -- Well, I guess if men are 50% of the population and 10% of men are gay, then that works out to 5% of people in the same situation as you. Duh. (Any lesbian ostomates on here?)