Life After Ileostomy: Coping with Post-Surgery Challenges

11:26 PM here in Jersey, 3 weeks after my surgery. So far, I've freaked out about 20 times, had one ER visit with a partial blockage, and now I am so sore and bleeding I can't stand it. Too many leaks to count. I've tried several different products and am still in a lot of pain. I look like sh... feel like sh... I only want to be with my dog. The doctor is not much help, and the nurse is okay, but I do a better job than her. I don't want to dress, comb my hair, see anyone, or feel very alone. I wonder if this is all worth it. Now I can eat, but I suffer in a different way. How do you all cope? I can't even find a support group in my area. Even if I could, I am afraid to go out the door. A shower is even a major project. I am far from a wimp, as I have had many surgeries in the past 30 years of my life, including a double mastectomy, but this really takes the cake. I wish we never had to eat again. I can't sleep and am in pain, so I needed to vent. I am sure some or most of you can relate to this. I am glad I live alone, as I am a widow of 13 years. I don't think I could put someone else through this with me. I don't even have breasts. I feel so not human. Thank God I am 63. Maybe I won't live too long. Enough with this suffering. I want to live at least somewhat normally. I hope with a little support, I will make it.

Hi Bunkie. You came to the right place. You will meet many people who are going through (or have gone through) everything you describe. With time and a positive attitude you can manage or overcome everything thrown your way. There really is light at the end of the tunnel, just keep moving and you'll find it. A good first step is to get your appliance to work properly. Check out the download "Tips and Tricks from Ostomates". You may even find that the quality of your life will actually improve. Good luck!
Prime

I hear you, Bunkie, and I feel your pain. Primeboy is always right that you came to the right place! You can spend hours on this site reading information; anything you don't see, write in the forum and ask a question! I have found by chatting with people all over the world we all had and have the same problems... Read the blogs... then write another one again about anything that I'm feeling that day! Find out who your ostomy nurse is and arrange a meeting so she can give you her opinion. Healing takes a long time when your heart and your body are sick; allow time! "Time heals all wounds!" While you're waiting for your body to heal, you can begin to heal the mind.

I found that I needed a good support system. Not just friends and family support. I need a good home doctor that managed me and my medication. If anything changes, I have my gastro two hours away, but is available to me at any time. Then a pain specialist because I will be on pain medication for the rest of my life! I have a therapist that I talk to regularly and have been on anti-depression medication for some time now... I don't have the problem of one doctor prescribing medication and another prescribing another! (Stacking medication) But the best medication I have taken in the last few months is this website! I find out things on here faster than any doctor will be updated on my Crohn's disease! I have to be the one who educates myself on upcoming drug treatments. Which allows me to ask the question to my fellow ostomates firsthand to find out what the drug companies don't want to tell you! If you cannot find an ET nurse that can come to your place, make an appointment to see her in her office. There she will have hundreds of samples that you can try. You can also talk to the place you get your ostomy supplies; they may have samples or they know where you can get them sent to your house! The companies are always eager for you to try their new products! If one nurse or doctor isn't teaching you how to solve your own problems, find another doctor or nurse that you can trust. Another idea that might be right for you is to ask your doctor to set you up with support meetings online or someone that has had an ostomy for years might be a better teacher for you!

Those feelings do get better, but I'm not going to lie, it's going to take a lot of work to dig yourself out of your depression. I still struggle with depression now for 25 years; next year it only gets harder and harder to hold on tight to my mind! How do I cope? I didn't for the longest time. I masked my feelings with prescription drugs... it didn't make the bad feeling of myself go away for very long. I've dealt with it in many ways... but all the ways I chose to cope were really hurting myself... self-medicating... after a short stay at the hospital, I was no longer addicted to Demerol, but the underlying problems were still there. I too can spend days in bed and spending time with my animals. Never eating, drinking, bathing, and seeing people outside the house. I get panic attacks when I'm so miserable because I'm not home! Honestly, my sickness gets the better of me and I do the same things you do!

Please start chatting online at about 9:30-10:00 Eastern time. We talk forever and there's never a bad thought that is spoken to anyone! We lift each other up when they're down!

Hope is possible for everyone! You can meet friends online and maybe you'll meet someone that will love you for you! How can anyone not love a person like you! Email me every day to tell me how you are feeling! I won't mind at all!!! Feel better and rest easy; you're among friends! Welcome!