New Member Seeking Support and Friendship

For some reason, I woke up in an unusually good mood and positive attitude this morning for a long time, probably because I decided to join this site last night. Even though I have not received any messages or replies from anyone yet, I still feel more confident than I ever had since my surgery that I will soon meet some nice people who may be able to help me cope with living my life with an ileostomy in a more positive way. We all know that each person's own personal life experiences are always better and more informing than just reading the thousands of books or other literature that is out there. So I am impatiently hoping and waiting to soon meet some new friends and/or mentors on this site who might be able to help me look at my situation in a different positive light. Because the way that I have been living my life for the last 3 years since my surgery has not been very positive or productive towards my own personal happiness and ultimate recovery. I always knew sites like this existed, but until last night, I never had the courage to join because I have basically been wallowing in my own self-pity, which, as we all know, will get you nowhere fast, except in a deeper and deeper hole of depression, and that is truly not the way I want to go on living my life. I guess the whole point of this blog is to announce my newfound courage and curiosity to become an online member of the ostomy community that is out there for anyone who is willing to take the time and make the effort to seek them out, even though it is a very scary leap of faith for me. But the way I look at it, I can't get any more rejection from the non-ostomy population in the world that I have gotten so far, so this is the next logical step in my attempt to get my head straight and wrapped around all of the permanent changes that I will have to get used to if I plan on starting to live some type of fulfilling life again. Well, I'm signing off for now, and I hope to hear from someone with the possibility of making some new friends who have this whole living with an ileostomy thing in common with me. Goodbye and God bless. Signing off for today... Bigdaddydave.

Hi, welcome to the site. I wish there would have been sites like this 30 years ago when I got my ileo. You will go through stages of grief, depression, anger, and so on before you get to acceptance and realize that life goes on. And for me, life got better because I wasn't sick with UC anymore and could be a father and husband again. Take care, Ron in Michigan.

Hi Dave, welcome to the site. How wonderful that you have decided to join us. I am sure that you more than likely have many of your own stories that will help others as well as some of us helping you. This is a great site to read lots of information others have been sharing for some time. I hope you find your way around it pretty well and don't forget we have a chat room for times when you may want to reach out just a bit further and say hello to folks in real time! I love the chat, and this morning I had the pleasure of chatting with a few people. The chat is free, meaning it doesn't matter if you have a paid membership or not~ anyone who joined this site can chat! Hope your days continue to be as good or even better than today!

Hi Dave, I just joined this blog... I have had a urostomy for 15 months now. Everything is going well. I had bladder cancer. It's a matter of learning to live with a chaperone... haha...

Hi Dave, welcome! I know you said this is a bit scary for you, but so glad you found the courage to join this site. We only get one chance at this life, so for me it has been an easy transition living with an ileostomy. I went from being extremely ill prior to surgery (10 months ago), to very healthy post-op. I feel now I don't want to waste a minute. I think acceptance and a positive attitude make a huge difference. Oh yeah, and humor... humor is vital! I belong to a couple of ostomy support sites. What they provide has been invaluable to me. Good luck on this journey. Melissa

Dave, welcome! I am a certified Wound, Ostomy, and Continence Nurse (CWOCN). I can't say that I have personally lived your experiences, but I have walked the road hand in hand with many people over the years who have, and I can assure you that life is what you make of it. Having an ostomy is not the end of the road, and for many, it is just the beginning! I seldom post on this forum, but your awakening has inspired me to continue to reach out and help those that I have been called to bring hope and healing to. I encourage you to share your experiences and the things you have learned through life, as well as during your life as someone with an ostomy, with all of us. You will find that there are many kindred souls out here who will not only share your pains but, more importantly, your joys as you find your new self. Thank you for reminding me why I love to help people with ostomies. I encourage you to live life to the fullest! Thanks, Clay.

Hi Dave, I am also new to this site. I have had my colostomy for six months. Yes, it takes time. I have ups and downs, but it is life. I love reading people's comments and it boosts my morale. It will do the same for you. You don't say how old you are, but it is immaterial. What is needed is fulfillment of life. Keep writing and chin up. Midgey.

Hi Dave, I've found this site has given me a range of tips for living with a stoma over the last three years. Hope you get as much help.

Well done mate, it's easy to look at the glass half empty isn't it? You've taken a real positive step, I reckon. One thing I discovered during my ostomy days is that no one else is really that bothered about it, it's just us that have the ostomy that seem to worry. I joined the 'others' and just forgot about it in the end, got on with it, and had a laugh at it all ... along with my friends. Stay happy mate, and well done again :)

Hey dude, welcome!! We have all had our bad days. And I believe after what we've been through, we are allowed to have them. But why focus on the bad stuff every day? Start small and try to find one thing every day that you couldn't do before you had your surgery. That now you can. I have a love-hate relationship with my bag. But I know that I would be dead if it wasn't for him. So even on the worst days, I gotta stay focused on that. Baby steps will lead you out of the depression. And sometimes medication is required to get us going in the right direction. There's no shame in that. This site is great to vent and to find a lot of information from people that have been there. You are not alone!!

Hi Sally, you say you have a love-hate situation with your bag. Why, and how long have you had it, and do you have no large intestine like me? Or only part removed? Do you eat anything or are you careful with what you eat? I am so happy I found this page, it has made me feel so much better knowing I have friends who have the same as me. Keep writing, I love it. If you are on Skype, we could also chat via it. Regards, Midgey.

Hi Midgey - I have Crohn's Disease and had my lower intestines removed in July 2007. I love my bag because I am no longer sick and weak on a daily basis. I hate it because I don't look nearly as sexy in a bikini as I used to, lol. But seriously, it is mainly because I hate changing it. Ain't nobody got time for that. I feel so much better now and do so many things that I don't want to think about changing it. It only takes about 10 minutes but still. I'd rather be doing anything else!! My diet was limited before the bag but now I eat anything and everything I want. For the past 4 years, my doctor was telling me to gain weight but last week at my appointment he told me I'd gained enough and that I could actually stand to lose 15-20 pounds. I smiled and said I think it's time to find a new doctor!! Welcome to the site! I hope you get as much enjoyment out of it as I do. --Sally!

Hi Sally,

Thanks for your quick reply.

I don't have Crohn's disease, but I had diverticulosis.

And I didn't listen to my doctor a year ago when I should have had an operation.

And so six months ago, I had a life-threatening operation.

But I am here today to speak to people on this great site and share our problems with each other.

Like you, I have discovered that I can eat nearly everything within reason.

I didn't realize that there are so many people who have this problem.

I checked with my stoma sister if I could go into the whirlpool, and she said yes, no problem.

So that is something I am looking forward to.

Please write to me whenever.

We can chat about anything you want.

Actually, what part of the world do you live in? And are you married with kids?

Have a good day or night.

Regards,

Midgey

Hi Dave and welcome to the site. Just knowing that there are others out there who understand and live the ostomy everyday has helped me tremendously. Some days I wake up and can't believe this is the road that I travel and other days I could care less. Funny how each day is so different. Thanks to this site, local support groups, and the conferences, I have met so many great people who offer wonderful advice on how to live each day to the fullest. Check out the support groups in your area too. I know of one in Lower Bucks County and one in Chester County but am not familiar with the Lehigh Valley. The local support groups are fun and educational. Take care Dave and keep posting when you can.

Hi. I am 9 days after my ileostomy surgery. Although it took me 2 years to decide to go ahead with it, nothing could have prepared me for this. I am a co-parent with my ex-husband to 3 great kids. Even though I talked to them before my surgery, they still have questions. I don't know how much info is right for them. I don't want to scare or freak them out. Also, I feel like I am in information overload with all the supplies being delivered and what my stoma nurse is telling me. I am feeling pretty alone and isolated right now, so I thought I would reply to your blog as you seem to be in a good place right now.

Hi Pammer, I didn't know that I would have the ileostomy. I just woke up 3 days later with the bag. My operation was life-threatening, but thank God I survived it. I am getting used to it and I feel good. If you like, we can chat if you go onto general chat. I am open and tell all my friends about it, I hide nothing. And you will be the same, nothing to be ashamed of, we have no pain anymore. Hope to hear from you soon.

Hi Pammer, you are absolutely correct regarding the information overload. I was also inundated with videos, literature, and internet stuff. Wow, those early days were anxiety-driven for me. Some days I still get waves of nervousness that come and go. Some of my ostomate friends tell me to be gentle with myself as time really helps the situation. The more daily successes you have will help reduce the fear. Have you researched any support groups in your area? You may also want to contact a local wound care nurse at your hospital. I found comfort in connecting with others experiencing a similar situation. We were able to compare notes and just chat. Keep posting, Pammer, and good luck with everything. As you stated, it is only 9+ days since your surgery, and this is all very new. Give yourself some time. Keep posting.

Thanks for the advice. I have looked and there is no support group in my area. My next question is why do people name their stoma? Any suggestions for mine?

I named my stoma because it made me feel better...not certain why. When I am changing the appliance and he is activating, I sometimes say, "Are you kidding me...you have to do this right now?" or "You couldn't wait 5 more minutes until I got the bag on?" My husband and friends laugh when I address my stoma by name too, especially when the stoma is chattering away. I hear the tooting and whistles, but most of the time no one else does. I eat too fast sometimes, and then the music begins.

Grammar, when I was in the hospital, my ostomy/wound care nurse actually told me it was a good idea to give my ostomy a name. She said that way if I was out in public with someone and had an issue, I could just say I need to call Mo or I need to check on Mo. It has really been a good idea. Now my entire family refers to it as Mo. When all of that sound starts coming out, they will scold Mo or congratulate him. LOL Yes, I called it a him. I don't know why, but at the time of my surgery and sickness, my husband of 21 years left me. I was in ICU, third day, when he decided to tell me that he didn't think he loved me anymore and that his life was going in a different direction and he didn't see me in it... What he meant was MY life was going in a different direction and he didn't see himself in it. ANYWAY, my nurse said to me, "At this time in your life, your husband is just an a$$hole... this stoma is nothing other than your a-hole, so I think for sure yours is male." LOL I called him Mo the stomO. LOL Gotta laugh!

Hi. I haven't got a name yet. My husband left me a few years ago, had an affair, he couldn't deal with me being sick from UC anymore. Then when we were going through the court process he pretended to be my friend and acted like he cared. Not! All he cared about was his money and making sure I didn't get it. I am on my own with no family close by. But I have 3 amazing kids who make my life worth living.

Pammer girl, you will be fine in time, go slow, once the physical health comes back, the emotional health will follow, please go look at my pics and you will see both sides of the journey in my pics, it's really that simple, but you must allow yourself time to heal............Michael........and I back those words up with a promise, there will be a day, you will appreciate and possibly come to love the bag and compared to suffering with UC, it's a piece of cake.

Hi beyondpar, you are so right about the suffering with UC. I was only sick for about a year and that year was long enough for me. Between the pain and bathroom runs, I was sick and tired of being sick and tired. Each day that passes post-surgery, I am less sad and more accepting. I also have a great group of friends living their lives with an ostomy. They are all my inspiration. It will be one year for my surgery next week. I am going to celebrate with a birthday party for my stoma. My stoma gave me life. I am so grateful.

Hello from Maine. Are you in the Northeast, South, Greys Ferry, Bucks or Delaware County, South Jersey, Delaware Burbs? I used to reside in Amish Country.