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Posted: Wed Mar 07, 2018 8:25 pm

I am new here. I just wanted to introduce myself. My name is Chrissy and I am a mother of 4, just turned 40. A little about me..... Last year I was diagnosed with cervical cancer (early stage) I had to have a radical hysterectomy (Jan 5, 2018). I ended up having complications afterwards. Although, I was told beforehand that recto-vaginal fistulas were rare, it was possible.... I was that unlucky person who got 3 fistulas. The surgeon nicked my colon during surgery and had to repair it. So that repair healed to the vaginal repair and left holes. I was devastated. Four weeks after the radical hysterectomy I had to have an Ileostomy (Feb 6, 2018). This whole ordeal has really taken a toll on me emotionally. I have cried almost eveyday until recently. This ileostomy is temporary, but it still sucks. The doc said about 8 months to see if the fistulas heal on their own. Its only been 4 weeks. Sex has been an issue. My boyfirend of 1.5 years shows no interest. I can't have sex due to the fistulas, however there are other ways to please one another. Still.... nothing in 2 months. He won't even look at my stoma. I have adjusted to it well, better than I expected. I'm certain he is grossed out by it. I even bought the cute black lace wrap from Ostomysecrets. I keep my bag clean. No odor unless emptying it on occasion. I even rince my bag out every time I empty it. I have never felt so gross. I am not really sure what to do at this point. I know I am not alone. I am curious to see how others handle this situatiuon.

Posted: Wed Mar 07, 2018 9:47 pm

Hi there Chrissy! I am Michael and I feel absolutely disgusted and appalled that your boyfriend won’t look at your stoma cause it is a part of your life right now!! If was your boyfriend I would cherish every moment with you sex or not! Feel free to text me!


Posted: Thu Mar 08, 2018 1:09 am

Thanks, I honestly think he just can't handle those types of things. He just tells me he doesn't want to hurt me and that I need to heal. Its been a long road for me, but I am cancer free. This ileostomy sucks, but I have adjusted to it and I am doing well. 

Posted: Thu Mar 08, 2018 6:08 am
G'morning angelkisses, first I 'd like to welcome you to the site. I'm so glad that the cancer is gone. I have never had fistulas, but I do have an ostomy. You have an ileostomy and I have a colonospy. Which are both lifesaving surgeries, we got a second chance. Angelkisses you also have something to look forward to a reversal. There are some of us will never gat that chance. Yes mentally it is rough, in time you adjust, but everyone has there own time. As far as your partner who really knows.. your struggling mentally, perhaps he is too. I even understand the sex issues, I'm married when I had my surgery my husband of 33 years wouldn't touch me, but I had to keep moving, it took me some time mentally to even accept my situation. I haven't had sexual contact in 3 yrs, so truly I understand your feelings . Take this time and reflect on you.. do you!!! The difference is the plumbing, your still that person he knew and loved. Time heals all and in time you be okay !! Hang in there.! It does get better this is your second chance... do you!!!
Wish you the best! Angelicamarie
Posted: Thu Mar 08, 2018 7:31 am

Hi ditto to what am wife left mentally got a stroke.its been 3years since sexual contact.we become more energy and stronger against birds and besse.the whole thing makes everyone go into survival mode.pluming bloob vessels take 6 to 10 years to come a way we’re Orel.if you now wate I mean.jerz 

Posted: Thu Mar 08, 2018 11:45 pm

Love is love. I'm just out of my bag now for a short time. I'm kinda on both sides of this. ya, stomas are trippy for sure. Gross? Naw. Different. Life saving is the thing us and our loved ones must keep in our mind's. I'm sorry your love one is having a hard time with it. BUT, like I've said to mine, it's on me. Not on them. On me literally. I don't know exactly how to help. I'm sorry Chrissy. It will be kinda over before you know it. Love.

Posted: Sat Mar 10, 2018 3:34 pm

Thanks for your post and I am sorry you are going through so much.  Take it one day at a time.... sometimes it takes time for the patient and the loved one too.  In the beginning, I was pretty grossed out too.... always dealing with bm.... emptying the pouch 5 times a days.  Now I take it like anything else... time to go to the bathroom.  Just remember, this is only temporary for you.  Give yourself time to heal and feel better.  You will be reversed and life will go on.  My stoma is with me for life.  It gave me a second chance as I almost died 5 years ago.  I love my stoma... most of the time...LOL.  Good luck and keep posting your questions.  We are here to help.  LadyHope

Posted: Sun Mar 11, 2018 1:19 pm

Hi Angel,     You've been through a real ordeal, between the illnesss, the cancer, the surgery and the recovery.   In an ideal world a partner, be it boyfriend, or spouse, would be there to love, and help support you.   But they are humam as well, and may or may not have the mental or emotional fortitude to deal with the  issue.  Either way, its' sad.   I'VE  had my ileostomy for more than 50 years, since I was a kid of 15, and although I didn't date much, I didt meet and mary a guy who also had an ileostomy, as well as active Crohns disease.    whe he had attakcs, I was there, cleaning up the mess, helping him change, and doing all I could to make him comforatble.  I'd had Ulcerative Colitis, so when my colon was removed I was basically well.  But when I was 9 months pregnant with our first child, I needed help in changing.   Would you belieeve that he actually refused!!!!   I couldn't believe it , and was very upset angry and felt rejected.   I wanted to be able to lie down, and change, and needed him to help me clean up, and postiion the wafer appropriately.  Instead of helping he  hung a mirror on the toilet seat, so that I could see my stoma ( which was now under my belly ) and go on from  there.   I was 24, and he was 32......and we were expecting our first child, so I didn't hold on to my anger....But that started me on makeing lists of all the things he wouldn't do help...    Help with dinner, after the baby was born,   wash dishes..... change diapers,  do baby laundry ( we didn't have a washer and dryer).     He was not really a care taker type, as I was, but h e did many other things for me, us, and around the house.  My anger disappated, realizing that what  iI was asking for, just wasn't in him.....and it was useless to fight about it.   By the time baby no # was on the way.....I made sure tha t he knew that I coudn't do it all, so he became more responsible and interactive with our first child now two, and actuallly help our newborn, so I could bathe/ shower our older boys.    Would you believe he never bathed either of them until they were 3 & 5,  He claimeed he didn't know what to do.   So I toldl him to soap up two washcloths, put the boys in the shower, adn let them was each other...... 

But your issue is a bit different.   You're craving emotional and sexual intimacy, and your  boyfriend is holding back....or ignoring your needs.  If you're not in a position fo go for help with a therapist, perhaps you can have a non accusatory conversation with him, saying that you know it's a big adjust ment, but you miss not just the sex , but the closeness and intimacy that you once had.   You don't even have to do anything sexual.   Perhaps he needs time to adjust and accept.....and isn't paying attention to your feelings.      When I became pregnant with our first child, my then husband was so fearful of hurting the baby, that he planned ( in his mind) to refrain from having sexual intercourse, until I gave birth...   but he hadn't told me his decision.   When I heard it , I didn't know whether to laugh or cry.   But I said if he persisted, that by the end of the 9 months, I'd be ready for a divorce, not the birth of our first child.   And then we talked, and compromised, and I accomodated his feelings that were based on fear.   So I wish you the best, and hope good communication helps you and your partner.    Stay in touch, and let us know how you're doing.   Best regards

Posted: Sun Mar 11, 2018 4:37 pm

I'm sorry your boyfriend can't accept the changes in your life.  A lot of this is temporary, but you may need to find someone else.  There are a lot of able bodied people out there who are compassionate and look past these things.  I wish I lived closer to you.  I would date you in a heartbeat!  You are a very attractive woman!

Posted: Thu Mar 15, 2018 9:04 pm

Hi Chrissy,

                     So sorry to hear your story.  I have played this scenario in my head many times, in which I am the Non-Ostomate   and my GF has an Ostomy . Question for me is ...Honestly ,,,no crap would I react or feel if my GF  had an Ostomy . Would I be scared of hurting her ? would I be disgusted if she had an accident ...if she showed me her Stoma ??   This thought experiment made me have some compassion ...even a bit of pity for the person who suddenly has a Spouse or bed  Partner  with a Stoma .  I took off all my clothes and my Ostomy bag and stood in front of a long mirror  and considered the situation.  It doesn't freak me out these days but ....remember the first time you changed your bag ...yourself, not a nurse did you react when you first saw your whole body...your Stoma looking back at you ...were you scared....not sure how to react to it .  Been there ...done that Chrissy. 

I wrote a blog recently about finding an Osto Lady to hang out with. It makes a big difference when both people have an Ostomy.    I may be in the minority but I  think I understand the fact that non-Ostomates will invariably be Totally Freaked Out when confronted with a plastic bag full of shit  or even an empty shit bag  !!  I can have some sympathy for people who can't handle it ....especially to get up close and personal with the  actual Stoma or even the Bag  !!  It is pretty scary when you are confronted with your partner's Intestine popping out of your lovely ( I'm sure lol )   belly .  To be honest I would say that you should Not let him see your little Gutsy Friend ...your Stoma , not a pretty sight , ever  !!  That view is Vwery Scary for non- Ostomates 

     I would suggest starting with an easy task for your scared ( justifiably ? ) and probably  embarassed BF . Go easy on him and just cuddle up as close as your baggie allows ....with as  Little clothes as possible but enough coverage to keep your Baggie out of his racing imagination . He may be afraid he will hurt you somehow ??  that you are now a delicate piece of glass ....shattering if mishandled  !!   

    Don't be too ambitious at first  , You should probably explain that you are not all that Fragile   !!! you won't break like fine bone china if he hugs you !!  He will have to get used to those funny noises and Farts   lol   ....Hey look on the bright side ...  Your Farts  don't smell .....Ever  !!!    lol as long as you keep that aggie closed  !!  

    I hope he comes round and accepts it .  I scared Myself when I looked in the mirror naked  .....still do   !!  He will figure out that the woman he cares for is still there different , except for a little extra Baggage .

   I hope you take my thoughts as they were meant....musings on a very difficult road to "normality" , a new Normality !! 

Best wishes Chrissy and Hugs from Magoo XO

Posted: Sun Mar 18, 2018 3:22 pm

Thank you for your reply. It's been rough. I did find out that its the rectovaginal fistulas that worry him. Which I can understand. My issue is that there is nohing coming out of those holes anymore. Even when it did, it wasn't a lot. I admit, that's gross. I wouldn't expect him to want to preform oral (since I can't have intercourse). However, that's why I have the temporary ileostomy. The doctors want to give this time to heal on its own before doing a surgery. I guess I just don't fully understand what the issue is now. 

Like your husband, he doesn't help with anything stoma related. He wouldn't hold a mirror for me either. My 15 year old daughter had to. Since then I bought one that I can just sit in front of me. I have adadpted to this ostomy better than even I expected. I keep everything super clean and as odorless as possible. I don't think he can handle all of this. He says he loves me and he does make sure I have everything I need. I just wish he didn't think I was disgusting. 

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