Struggling to Accept My Life with a Stoma Bag

I had surgery nearly a year ago. It was only meant to be a short-term thing; I was told it would be for six months. After six months, and more scans and cameras in places I'm sure you are all familiar with, I was told it would not happen as there is not only inflammation where they would join my bowel together, but since having surgery, my Crohn's has gotten worse and spread into the large bowel and colon. So, it seems like going through all this was pretty pointless. The main problem I have is that I seem to be the only person that cannot accept the bag. My wife is brilliant, friends are all cool, and even my kids are fine with it. I feel like I'm the only person who thinks and worries about it. I can't seem to not think about it during almost everything and sometimes feel like I'm pushing my family and friends away.

Not really sure of what else to say or even what I want other people to say, but thanks for giving me somewhere to talk about how I feel. I have just found this site recently and am so happy I did.

Thanks, Gary C

Give yourself time, Gary. The physical recovery is always first, and then the emotional recovery. I do recommend a local support group, as being around other ostomates will help. Just give yourself time; it all fits into place in time. - Michael

Welcome Gary, you better get over it, your family needs you. This is a lonely disease, so please do not push your family away. It takes time to heal, so please take the time you need, because the bag is going to still be there, and if not careful, your family may not! In time, you will thank your lucky star for being alive, as the family grows, and your wife loves you in ways you didn't ever think. Gary, the people on this site are the greatest people you may never meet, but will find them {us} part of your life now. Always good advice to be found on this site. Take care Gary and give your family one big hug every day to let them know how much you really love them; it will come back to you. Give it time.

As a former boyfriend said to me - You're alive so it's a great thing. I agree, it takes time but after awhile you won't even think about it.

You should talk to your doctor. You may need some antidepressant meds for a while. I did, and they made it all bearable.

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Good comments from good people. Some thoughtful suggestions given to me. Different is only different - Native American teacher. Meditate on impermanence - Buddhist teacher. From me - be gentle with yourself.

Hi Gary, I'm so sorry to hear how you're feeling. Your blog brought tears to my eyes. I'm sure in time you'll come to accept your bag/pouch or whatever you decide to call it. Please try and stay strong. It must have been a terrible shock to be told that your condition has altered, and I can't imagine how that must have felt. I'm sure the feelings you're experiencing right now are perfectly normal. Please try and stay strong and stick with this site; all the help and support you need is right here. I find that although I can talk to my husband, my parents, and friends, they can't fully understand, but the people on here do. I really hope you feel more positive soon and enjoy time with your family. Mrs. O xx

Hi Gary, please feel free to come in here and share how you're feeling. It's natural that you're feeling the way you are. Don't be too hard on yourself and go with the flow. It will get better in time. Take care, Ambies.

Hi Gary, I know when it's temporary, you sort of think, "Okay, it's only for a little while," when you're down. Then, when you start to accept it's permanent, it becomes a kind of bereavement, grieving for who you were and adjusting to who you are now. It does take time. I know myself; I still can't accept that my bag could be permanent if they can't resolve the other issues I have going on. Some of it's vanity; some of it's just accepting I haven't changed as a person just because I have a bag. I know you are very fortunate to have all these people supporting you, but I also know that doesn't always help if you're feeling low. Sometimes it just makes you feel worse because you feel ungrateful. Maybe a visit to your GP is a good idea, and a few months of antidepressants could help. But like a lot of people have said, it's time you need and a willing ear, and we all are very willing. Star/ Trish

Hello GaryC, Thanks for posting your thoughts and feelings. There is always some sort of 'adjustment' that needs to be undergone when we have 'lost' a previous way of life and replaced it with something that is perhaps not so acceptable.I put off having a colostomy for many years - perhaps a little in apprehension of how I might (or might not) adapt. Fortunately, this time and the associated aggravation gave me time to realise that the alternative was maintaining a life that I was actually not willing or able to put up with any longer. Thus my adjustment largely took place prior to surgery and therefore post operation it 'seemed' as though I adapted pretty quickly. If you try to think positively and keep sharing your thoughts I feel sure that you will be able to adapt and adjust - just give it some time. Please do not push your family away as your comments indicate that they can help you in that adjustment process.The loss of a previous 'life-style' can be equated to the 'mourning' process in other losses. There are various 'stages' to be worked through and they are all 'normal' given the circumstances. If you feel depressed or are in need of extra support don't discount seeking help through counselling. Then of course there is this site where the 'counselling' come free from those who may have already experienced similar emotions.Very best wishesBill

Hey Gary, your comments are so much like a lot of our own. I have been through the ringer, as they say, had a stoma on, then off, then on. Now it's forever, and it's been 6 years that have flown by. I still get those down feelings and have a huge box of antidepressants that I refuse to really take. The black dog follows me; I kick it in the face a lot. Please, time is truly a healer. I think about the 4 years I refused the surgery. Boy, I know my life was so bad, and I took some crazy stuff and didn't care about the next day. Thing is, I made it through, and the sun shone down. I had the operation; it was bad, but I'm better off now and have learned so much. Times do get tough, but all these answers are so beautiful; they are even still helpful to me. So Gary, read them and have a think. You have the right to feel crap; it's human. You got your family, friends; keep 'em, you need 'em, matey. Mooza, drop in for a chat and a laugh. Please take care, and I will as well. Mooza, Australia.

Thank you all for taking the time to read and comment on my blog. I feel a lot better being able to talk to other people who know what it feels like to have this sort of change in their life. Thank you all for your kind words, and a lot of your advice will be taken on board.

Yeah, get yourself a copy of the Deserata—excellent reading.

Gary, it can be hard to wrap your mind around the bag. I could not imagine it before surgery, and 5 months later, it is still hard to wrap my mind around it. But I have figured out I need a sense of humor about the thing, or it will drive me insane. So maybe a humorous attitude to a very crazy situation can be of help to you. And know that you are not in this alone; we all have these crazy things to deal with, but it is good to be alive and have family and friends who love us—that is a big deal, bigger than these bags. KBD

You are loved by people you love. You just got a lot of advice and support from some very knowledgeable people who care for you and don't even know you. So should you feel better now? Maybe not right now, but you will when you can put things in perspective. We can't think straight when we're traumatized. It's only been six weeks for me, and I'm praying a lot so I don't hurt the people around me. Prayer is good. The people around you are good. Life is good, and you'll see that soon. Mike

Hi, Gary. You're definitely spilling your guts (pun intended) in the right place. After 2 failed resections, I woke up with an ileostomy and was told I could have it reversed, imagining at the time, that it would be just like having another resection. Had no insurance, so it's been put off. As of this month, I'm covered by Medicare. All I've wanted since day 1 was to have this reversed, but now that it's a possibility, after doing a lot of reading on reversals, mostly on this site, I'm seriously considering staying in my current state. I never thought I'd feel this way. I truly hated my situation and while I can't say I'm happy about it now, I no longer feel quite as horrified about it. It's still very new to you. Give yourself time. One day you'll realize you actually went 5 minutes without thinking about it. I hate to put it this way, but it's not that different from when someone close to you dies. One day you realize you hadn't thought of that person for a few minutes and maybe that's when the emotional healing starts. It took a year and a half before I stopped waking up in disgusting messes a few times a week. It still happens, but only once every 2 or 3 weeks, and I usually wake up while it's still a puddle, before it becomes a flood. Like a number of folks on this site, I've read a blog written by Gemma. Don't know if she's had other posts, but just from that one blog, her feelings about you are obvious. I hope you know how lucky you are to have someone like her in your life. My husband was there for me the same way - 100% in my corner - and unexpectedly died less than a year after my surgery. He actually took care of Walter (my wenis) for the first month or 2 after surgery, spent all kinds of time on the internet learning what he could about it and found products on Craig's list and Ebay, as we had no insurance. It became important to me to regularly let him know how much I loved and appreciated him and I hope you do the same. Having no clue that it would be one of the last things I ever said to him, one night I put my arm around him and told him how much I loved him. A few minutes later he got up to go to the bathroom and went into cardiac arrest and died. I couldn't be more grateful than I am to have had those words as the last words he heard from me. I started out wanting to suggest you keep putting one foot in front of the other, as, like I said, I've been where you are and NEVER dreamed I'd reach even the low level of acceptance I have today. It wasn't my intention to get into showing your appreciation to those close to you, but I'm glad I did. So often we get so absorbed in dealing with this nightmare, we don't stop to think about what it's like for those who love us. Do some more reading on this site - notice how many people had spouses who couldn't deal with it and walked away, then, despite how awful it is for you, take a moment to let your wife know how much her love and acceptance means to you. I'll come down off my soapbox now. Good night.

Colon cancer! First reconnection failed! The surgeon asked if I wanted to try again. No! I am thrilled with the colostomy! I do anything I want! Good luck! Steve

You are right, honestabe! It is freedom! No more spasms or wondering if you'll make it to a toilet!!! I once had to stop at a construction site when I saw the port-a-potty! I didn't care; I just made it in time. I never worry anymore!!!!! I was all dressed up in a suit and high heels; what a sight!