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Living with an Ileostomy

Sun Mar 10, 2019 11:57 am
"This is the best website for people with an Ostomy, hands down. So much understanding. Everyone should join."

I am having a very difficult time dealing with living with an ileostomy bag. I am not a candidate for a J-pouch and I gave up on love because who would want me like this. My surgery was on NOv 2018. Prior to that I have been living with Ulcerative Colitis since 2001. I am undergoing chemo for stage 3 rectal cancer, and if anyone I didnt tell anyone they would know by appearance. How did you overcome the challenges living with a bag? 

Sun Mar 10, 2019 12:26 pm

Hi.  I know there isn't much I can say that will make you feel better right now....but it WILL get better.  We all have trouble in the beginning.  You are pretty new to this..Only a few months into it.  You have to give yourself time.  Time will do it.  After a while, you realize that you're still the same person and anyone worth their salt will realize this too...so don't give up on love.  You're a young, nice looking guy and there's a lot more to you than an ostomy pouch.  There are plenty of women out there that will realize this.  I suppose you'll run into a few shallow types too...but who would want them anyway?  When you get used to wearing a pouch, you'll realize that it really isn't that big of a deal and that it doesn't define who you are.

Stay strong in dealing with the chemo.  I know how hard that is...as I'm currently doing the same thing.  If you can deal with that, you can deal with anything!


MeetAnOstoMate - 27,707 members
Sun Mar 10, 2019 3:46 pm

Hi Staying Strong, 

Once you accept your new life, others will as well! It is a really big deal in the beginning and everything you do seems clumsy but the more you do it, the less complicated it gets and less you think about it! 

There are a lot of wonderful ladies out there that will see you as the same man you have always been, not the guy with the Ostomy! If it takes going through a few snots to find the one, all the more appreciated! 

If you are having pouch leakage issues like I did, once you find what works for you, you can get back to living! 

Chemo is touch on everyone and I have been there three times! Hope you are not having too many side affects. 

Sun Mar 10, 2019 11:13 pm

Stayingstrong-I had an ileostomy bag for 6 months, then a reversal 4 weeks ago. I hated the bag, but learned to cope with it. I agree with the other responses; you're a good looking guy with I'm sure many good qualities. Having a bag is a big life changer,not only physically, but also emotionally. I just wanted to send you my support.

Mon Mar 11, 2019 4:02 pm

Stay strong during your chemo and that compounds the feelings you have regarding your ileostomy.  I have been living with an ileostomy for 41 years following bouts with ulcerative colitis.  I played multiple sports and was intimate with my wife.  Many friends knew and stayed with me.  Many others who saw me in a work environment didn't have a clue that I had an ileostomy.

Mon Mar 11, 2019 4:02 pm

I had my surgery in Dec 2014. Prior to that I dealt with UC for 10 years. While the decision to have the surgery was not easy, my life is immeasurably better with the ileostomy. There's nothing it prevents me from doing. I did lots of research on products and techniques to keep me in the outdoors. I honestly don't think about it anymore. It's not easy but it shouldn't keep you from living.

Mon Mar 11, 2019 4:11 pm

hi  i don't know that you ever do. i had mine  beg of dec.. i take something for depression and it helps.. the good news,they tell me, is that i am alive. if i can be of any help pls let me know

Mon Mar 11, 2019 4:14 pm

StayingStrong- You've got this, the bag, the chemo and the love! Give yourself time to adjust and get into a routine with it all. I have no doubt you will find the right partner when you get yourself settled. Share that when you are ready and think things are moving forward. Anyone that can't accept that doesn't deserve YOU!  I had my surgery in Dec 2017 and I find wearing a Stealth Belt helps me alot. It makes things feel more secure on a daily basis and is more comfortable for me on intimate occasions.  https://www.stealthbelt.com/ There are other kinds you can check into as well. I know it is hard but outside of the bag adjustment I hope you are feeling much better than all your years with Ulcerative Colitis. Maybe think of how the bag has improved your life and health.  I wish you the best with your chemo and hope you find yourself all clear soon! Give yourself time to adjust and accept! Treat yourself the way  you would a friend that found themselves in your shoes! Supportive, encouraging, positive and loving! Sending hugs your way!  MB

Mon Mar 11, 2019 5:09 pm

I have had an ileostomy since March of 2018, and it saved my life, I did not have cancer, or diverticulitis, or Crohn's oh, I had diverticulosis bleeding I was in the hospital hemorrhaging 13 * in 3 years. I am thankful for my ileostomy bag, it gave me my life back, I travel I do everything I did before.

Mon Mar 11, 2019 5:17 pm

It is difficult to get use to at first.  I had rectal cancer and had an ileostomy with a two piece bag to start.  This bag was hell as I had many leaks.  Finally went to an osteomy nurse and I was switched to a one piece.....much better.  I had home care coming twice a week to change it.  No problems really.  Then I had reversal surgery on January 15 and now I am dealing with a new set of issues.   I understand what you are going through, but time does help.

Mon Mar 11, 2019 5:38 pm

You can have a lasting and loving relationship regardless of having the ostomy! I thought the same thing for years after having to get my ostomy...i went through 7yrs with no relationship but have found love with a man who doesnt care 1 iota about the bag...and even forgets it is even there at times. The 1st thing that you have to work on...however...in order to be able to find that special someone is self esteem and a good body image. Have you thought about maybe going the therapy?

Mon Mar 11, 2019 6:06 pm

Staying Strong...

Thats just what you are doing. After my freak accident in Dec 2017, I was left with a temporary ostomy and use to be a professional fitness model in my late 20's so the slam to my self esteem was major. I was never a superficial person before the accident but I can most definitely relate to the feeling of giving up on love and anything remotely close to someone else seeing your pouch or having to explain it. What I can tell you is you never get "over it" but in time, you learn to get "through it" and become all the better from it. Just know, that if times seem difficult or you feel as if you are all alone in your battle, YOU ARE NOT! *Cyber hugs*

Mon Mar 11, 2019 6:46 pm

I know it's not easy. I received my ileostomy as a result of stage 2 colon cancer after 5 weeks of daily chemo/radiation. Mine was done at the end of January 2019. Mine was not optional and I wasn't for it. However, I've started to get used to it. I'd just gotten into the best shape of my life when I got the diagnosis. It really impacted my self esteem. However, I decided the bag was to ensure they got all the cancer and there was no trace so I'm okay with it. I've even started to go back to the gym and shower there (That was a HUGE step in my self esteem).  Dressing is a little difficult sometimes. I did by a swim wrap from Ostomysecrets which I used to workout,etc I also have found that compression t-shirts such as Spanx for Men do help keep the bag more streamlined and easier to not be noticed. You've got this and you'll get through it. You're a great looking guy and seem to have a great attitude. You'll find love, just keep the faith!

Mon Mar 11, 2019 7:54 pm

I've had my ileostomy since 1982.  I was 20 and had been suffering with ulcerative colitis for years.  I was already married when I had my surgery, so adjusting to having the bag didn't interfer very much with sex.  I usually kept my boxers on during sex to avoid contact with the bag.  After getting divorced in 1998, having an ostomy was often an issue in relationships.  I made sure to let whoever I was dating know well in advance of any sexual involvement.  Yes, it scared off plenty.  Once I met someone that was comfortable with it, those relationships were priceless.  I'm single again and still finding it difficult to find someone that si accepting.  I've never dated another ostomate.  That might be my next avenue.  When I was a new ostomate, I went to meetings, but everyone was way older than me.  I just didn't feel comfortable being the youngest one in the room.  I guess it's time to seek out a support group.  Is there anyone else here from Nashville, TN?  

Tue Mar 12, 2019 7:08 am

I had my ilistomer Feb 2017. Whaqt a shock...but am doing well now. Go to gym dailey and everyone ( adults) seems fine with it. I use a girddle pouch system that keeps bag in place.

What they did not tell me is I would probably get a hernia...they were correct except I have had two. Must now wear a hernia bely with the bag and cant lift over 15 lbs. I am ok with bag but belt sucks. 

Tue Mar 12, 2019 6:36 pm

I was diagnosed with Stage 3 rectal cancer April of 2018. My Dr. suggested that I get a colonoscopy since I was going to be 50 in 2019. I had no symptoms, this was just a routine. When the Dr. told me it was cancer we were all shocked. I went through 5 weeks of radiation and Chemo treatments and was told that my rectum would need to be removed and that I would need to have a permanent colostomy. I have accepted that my colostomy will always be a part of my life and I have prayed that God would give me peace. It was not easy at first getting used to it and I have experience a lot of anxiety dealing with the Ostomy and I am still dealing with finding the appliance that works best for me.  Ostomy does not define me as a person.  It has saved my life. It was a long journey and there were many set backs, but you have to keep a positive attitude and keep fighting! You got this!!! 

Tue Mar 12, 2019 8:35 pm

Hi Staying Strong,           

My heart goes out to you!  My best friend started with a cholostemy bag, that was reversed only to wake up with an ileostomy bag.  That just recently was reversed.  It about killed her.  She is 74.  My suggestion for you is surround yourself with supportive people that are also compassionate.  Watch for dehydration, and have blood work done to keep up on your potassium, magnesium, iron, and sodium levels.  Drink Gatorade.  I have been her caretaker for the last ten months and have watched her suffer.  You can do this.  Find a local ileostomy group to join.  Your doctor or hospital should be able to point you in the right direction.  We have a lot of extra supplies, if you contact me I can arrange to send you what you might need. Just because you have an ileostomy doesn't mean know one would want you.  Anyone that can't get passed that is not for you.  Don't give up.  My friend feels terrible about her stomachs area, but I think she looks beautiful still.  I hope I was able to provide you some hope.  She had colon cancer and is allergic to the chemotherapy drugs, so now it's all up to time.

Last edited by Schweetdecember on Wed Mar 13, 2019 11:21 pm; edited 1 time in total
Tue Mar 12, 2019 9:46 pm

I was actually responding to someone post. I will be done with my Chemo pills in May.  They were able to remove all my cancer with surgery and Chemo and Radiation before the surgery, I am taking the Chemo pills to make sure that there are not any cancer cells laying dormant. My margins were clear right after my surgery. I had several serptbacks and I also had a severe reaction to Chemo transfusions where my throat was closing. My Oncologist would not allow me to have anymore transfusions. I have a colostomy, not a illostomy and I don’t think the supplies are the same.

i have an awesome support system from family and friends.

Wed Mar 13, 2019 9:48 am

I have had mine since 1989!  I did try the J-pouch and had worse synptoms than the UC with cramping and urgency.  Since then I have had many other surgeries - mostly revisions due to blockages from scar tissue.  They even had to rebuild my bladder twice. During all that I was married to a kind and understanding man.  He however turned on me and I had to leave him.  As far as intimacy goes, we adapted until he decided I didn't deserve him o

Judir being made love to.  It tore me up pretty bad after 28 years together.  There has been no one since. So basically I am in the same boat as you with the opposite sex.  But at 70, that part of my life is now in the past. It has been 7 years without a man in my life, and I am comfortable with that for now.  I have male friends, some know my medical history and many don't.

You are a survivor, so take pride in that. Find ways to be kind and loving and love will find you!


Thu Mar 14, 2019 8:00 pm

Hi StayingStrong. I think acceptance of one's bag is a matter of perspective. I've had mine since November of 2016. It has given me my life back and I'm forever humbled and grateful to modern medicine. The ulcerative colitis was so bad in the final stages that I wasn't able to even leave my house for 2 years.  The pain was relentless. Several times I contemplated ending my life. Now I embrace life with a passion. I hope you will, too. Epecially when you're able to appreciate the difference between "before" and "after." All the best to you! - Silveradokid.

Tue Mar 19, 2019 7:47 am

HI I have been living with Ulteritive Colitis sine 2003 after I had my first daughter I had my bowel out in April 2016 and I have that for life. I was a single mum for 8  years and I have found love again..... yes I was afriad to show my body at first but the man I am with it did not bother him at all we have been dating for 8 months now and he even get involve with me when I am changing it just incase there is a time that I can'y do it as I have had hurnia and it has come back again for the 3rd time and I have to under go another operation to move my bag from my righ side to my left side...... so love yourself for who you are, and always remember there are worse people than you out there.... I look at life diffrent as I was close to death twice and now I live each day the way I want..... and take 1 day at a time like I did and you will be very suprise love will find you it will take time but trust me it will come to you.......

Tue Mar 19, 2019 4:11 pm

Hello StayingStrong,

I have an ileostomy for 12 years and I'm so glad I had it. I can do anything I need and you can too.

I had ulcer colitis for many years with pain and bleeding and now I feel like a new man.  Let's talk about it,   Check me out for one of the 12 at Dayton, OH


Wed Apr 17, 2019 1:02 pm
Be strong, no matter how bad things seem they will get better. I have had my ileostomy since July of 1978. Been married three times, had numerous relationships, worked construction, have two children, shoot, hunt fish, swim, bike, do about anything think I want. You may not win every battle but you will win the war if you stay the course.
Wed Apr 17, 2019 7:05 pm

Great advise! An Ostomy should never define us! 

Live life as you would have without an Ostomy and laugh at the mishaps! They will be funny years later anyway so laugh now!


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