Struggling mentally after bladder cancer surgery. Need advice.

Hi, I'm Dave. I'm 34 and a 'double bag lifer'. I was diagnosed with bladder cancer and due to complications during the operation to remove my bladder, I'm left with two permanent bags. I'm not one for letting things get me down and just four weeks after the operation, I was back at work. However, as fit as I feel, my head is all over the place. I don't know anyone my age going through anything similar. I've got one work friend who I talk to, but I think I'm even annoying her. How do I get through this? These bags are going to control the rest of my life. I hate what cancer has done to me and sometimes wish it had just taken me. Is it normal to feel like this? Has anyone else felt like this and got through it to lead a 'normal' life? Any help/suggestions would be much appreciated. Thanks.x

Hey Dave, thanks for sharing. For starters, you're not alone, those bags will not control your life and lots of us felt like you and got through it. You had some traumatic experiences from the diagnosis, the complications and just recognizing the new you. I think it takes our heads longer than our bodies to adjust and for some of us it takes longer than for others. When we go through this stuff our entire beings are traumatized and we need to heal. Some will tell us we need to be strong and that's just because they don't have a clue. Just sharing with us is a big step in the right direction. Down the road a bit you'll have a better definition of “normal” and you'll be surprised how well you've adjusted. Stay with us.

Take care of your friend and realize she can only imagine how you feel.

Respectfully,

Mike

Hello Dave. Thanks for your post and yes! it is 'normal' to feel as you do given the circumstances you have been through.
Coping with emotional and psychological problems assosciated with the trauma of this situation is so often pushed into the background and not dealt with in the same open fashion as the physical elements. A problem with talking to friends about emotions and difficult states of mind , is that they are often not trained therapists and do not have the skills or confidence to know what to do or say to be of help and assistance. They want to help, but sometimes what happens is that, rather than help you move on, your trauma and emotions transfer to them, making them feel almost as bad as you do , with the added problem of feeling guilty about not being able to do anything to help. It is sometimes better to find someone to talk to who can cope with other people's trauma, so that when you talk to your friends you can share the positives rather than the negatives or, at least create some kind of balance between offloading the negatives and clearly showing that by doing so the person listening has helped you to move on.
If you cannot or do not want to use a psychologist or therapist, then a site like this can be a great help as you can tell us all about the worst of your feelings and we will understand because there will be a few of us who have felt the same way and lived through it.
I don't think there is any such thing as a 'normal-life', with or without stomas as we are all different in the way we live our lives. Some people on here have described their situation as the 'new-normal', which is probably a more accurate description as a life with a stoma is different to that without one (or two) so what is normal for us might be viewed as not normal for people without a stoma.

The important thing in coping with the traumatic side of things is to express your feelings in an open and honest way and to keep doing so until you have worked out your own coping mechanisms. This forum should be an ideal place to vent and explain how you feel and we will feel priviledged to try to respond appropriately to your posts.

Best wishes

Bill

Hi Dave,

I'm Marsha, and I'm really glad to see that you turned to this site to vent your uncertainty. Going through any disease/surgical procedure is difficult, but ostomies can really be life-changing. Not sure if you have a colostomy or ileostomy, or if your stoma pouch is due to bladder or kidney (nephrostomy, ileal conduit, or urostomy). I've had my ileostomy for more than 50 years, since I was a teen of 15. That was really a life adjustment, but I was too young to deal with that at the time. Anything that got me out of the hospital and back in school living a "normal" life was fine with me. I've had complications with the ostomy over the years (especially when pregnant) but nothing significant. It was my "new normal" and a badge of survival. Maybe women are more readily prepared to deal with changes in bodily fluid output... because honestly, my periods were sometimes more of an issue than my ostomy maintenance. After 4 years of living with the diseased rectum, the doctors decided to go ahead with the total colectomy. More complications with that surgery... my bladder stopped working (for 10 weeks) so I lived with a catheter, hoping that what appeared to be nerve damage would repair. Otherwise... I too would have lived with two bags. Eventually, bladder function returned, without feeling... so I urinate by the "clock". Another life adjustment.

For now, concentrate on getting your strength back, and think of the good things that you have going for you in your life. Sometimes, we let the bad stuff carry more weight than the things we are most grateful for. I'm now 68, have raised two sons, both of whom have IBD... one has UC and the other Crohn's, but neither one has needed surgery. For that, I'm grateful. I also have 3 little grandkids, and I just pray that their parents' and grandparents' disease genes don't get passed along. That's enough mental turmoil for anyone. I've had a wonderful life, despite disease, multiple surgeries, life with an ostomy... and a myriad of medical issues associated with aging. I wish you the best... Marsha

Hi guys. Thank you so much for your replies and for making me feel welcome. It's good to know that I'm not alone. You all make excellent points which I know are going to help me get back on track. I'm seeing the term 'new-normal' a lot at the moment so maybe that's the answer...create a 'new' me for my 'new-normal'.

Once again, thank you for taking the time to reply, you really have helped.

Kind regards

Dave x

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hi Dave, you came to the right place. I just read your post and understand this period of uncertainty. I too felt the same way four years ago when I had surgery for UC. I have an ileostomy that cannot be reversed. My life completely changed when I got sick and I hated myself and my life at that point. In and out of those hospitals, IVs, blood transfusions, and other procedures. I thought that I would never get back to the upbeat happy me again. I was bitter and pissed off. It took some time and I had to fake it to make it. I still have dark days once in a while, but the sun eventually shines again and I am grateful. Because of my stoma that I named Stanley, I have enjoyed more years with my husband, family, and friends (even work...LOL) ; I really appreciate that I was given a second chance....I would have liked a second chance without an ostomy but my option was an ostomy or die. I choose living with an ostomy rather than a headstone. So far, so good... one day at a time. Just one day at a time.... I try not to get too far ahead of myself. When things get difficult, I have a glass of wine or take a walk or shop or google my favorite songs and refocus. Welcome to MAO! We are here to help, listen, and support each other. This site truly helped me get through the rough periods and celebrate the great ones. Take care and keep posting. LadyHope

Hi, Dave, and welcome to our new normal.

I think it's probably horribly politically incorrect to say this, but it's quite reassuring to have another cancer buddy in our ostomates crowd!

Don't hate the ostomies. Don't hate yourself for them. Don't hate cancer for them. Just don't hate, period.

You have a new normal now, and a new way of life, and we hope you work with it to the best of your abilities. We do. Oh, and did we mention that your new multinational support networking is so totally on your side, and deal with the same type of stuff that you do? Give your work compatriots a break and rely on us.

Hi Dave, it has been a life-changing event for you having to undergo surgery and then having to cope with the nephrostomy and the ureterostomy. I have also had both those procedures in the past, although mine was due to hydrophrenosis and I now have an ileal conduit and an ileostomy. It does take time to adjust, and don't sell yourself short. As previous posters have pointed out, it takes longer for our mind to adjust than our bodies, but being open and able to talk to others about how you are feeling can be great, and you may begin to realize that having a stoma doesn't change who you are and what you can do. Just take things 1 hour at a time and give yourself time to come to terms with the changes in your body.

All the best.

Hi Dave and welcome!

Yes, life has changed. Your body has changed, but you are still you. The things you love, the folks in your life, your job, pets, and whatever was before, are still here. The plumbing has been rerouted, but you are still the same Dave. Ask us anything, and we will try our best to share our experiences as well as what we have done or learned in the process. You can also write a blog or just vent on those days when it seems like everything went differently than planned.

There are many old and new posts for you to read to help you understand some of the things others have gone through that might just help you out. If not, let us know, and we will answer the best we can.

Hi everyone, thanks for your posts, they are really helping. A few bad days recently but overall I'm feeling really good - looking at things a little differently, thanks to you guys. Took a few days off work, relaxed a little, thought a lot. It's a long road ahead, I know, but I also know I can do it.

Thanks again for taking the time to reply, your support means so much.

Dave x