Life???

I am sorry, but since having the surgery [ileostomy], I find it hard to get past it. I am 79 years old, and this was just done in February, and I have a problem with depression. I went to breakfast with friends, and while we were at the restaurant, the bag came loose. I managed to get out of the restaurant very quickly without it becoming obvious. Since then, I finally, with the help of a stoma nurse, have a bag that is pretty trustworthy, but I can't seem to get over my fear of going out in public. I see these blogs where some people say they can eat anything with no problems, but that does not seem to be the way with me. I want to enjoy my life, but I don't feel I can....

Hi Sweede0, I am sorry you are having a hard time, but remember it is all so very new. It does get better. Time will help; celebrate the small steps. Look, you said yourself you managed to get out of the restaurant without it becoming obvious. I have had my share of noticeable accidents at my place of work where I have to face most of the same people to this day. Keep a positive attitude and give yourself a break.

Hi Sweede0, read your post. I think we all experienced the same thing you did. I agree with the person above; it's new. Take it easy, small steps. And pretty soon, you will be a pro. :)

I have been very busy all my life and able to do most anything, very strong. I worked until I was 70 and then quit to take care of my ill husband until he passed away. I am trying really hard to accept what I can't change, but it's very hard. I will keep trying. I get so lonely at times too.

It took me a while to accept. Family and friends helped by not treating me any differently. At first, I felt I was. You would be surprised at the number of people who have ostomies that you are unaware of and see daily. SWEEDEO: Live life to the fullest, and if you fall, get up, clean up, ha ha, and keep on keeping on. If we can't laugh at ourselves, who can?

Words of Encouragement from Ostomy Advocates I Hollister

please message me I would love to chat with you. I went through so many incidents like yours and deep depression. Let me help you through.... even if only for a moment.

I am closer to your age than the others, and trust me, initially I had an extra change of slacks, panties, another bag, a towel, another bag, stoma powder, and tape because I never knew when I would have a leak. Once I healed, and this took FOREVER as my surgeon really hacked me up pretty good and then left a suture in, it was over a year before I finally healed and now use the Hollister bag #8624, which is the BEST I have used in my search for the bag I feel most confident with! I will tell you though, just to feel 100% secure, I always have on a Silhouette (like a Depend, only much nicer) just in case. I even stopped going to my granddaughter's recital for fear of a leak (THIS WAS BEFORE). I am cautious to this day but doing so much better. As for EATING ANYTHING YOU WANT??? NO WAY!! I want and have wanted popcorn for over 30 years and before my perforation, was told to not go near corn of any kind, which I did not. I talked to an ostomy nurse and she said maybe a little, but it was sort of a risk so I AM NOT ABOUT TO RISK ANYTHING! I stay away from a lot of gassy foods, cannot drink carbonated root beer or soda, and now can tolerate one glass of wine. I have to be careful of sweets (can eat a LIMITED AMOUNT) but a lot of the time it is common sense and asking yourself, do I really want this bad enough to risk a leak or feeling bad? You will do better as time goes by, but don't rush and don't think you should be further along...we all heal differently and we all deal with issues differently. Maybe try an ostomy support group (call your hospital and see if there are any around or where you might find one) or contact the ostomy groups that you can find on Google and ask there. I am so sorry about your husband too. I will be going into year 45 in January, so I cannot begin to imagine life without my husband and pray that he is with me and if God wants one of us, take me first! It is a struggle for sure in life, but you are stronger than I think you know, so don't give up and do try to get in with other ostomy people or maybe see if you can start a group and ask for the hospital to assist you. You might even get names from them to come to your house for a group, but you have to try. Good luck, friend, and know it DOES GET BETTER!

It takes time for some people to adjust. Right after I had my first ileostomy, my surgeon asked me if I wanted a therapist to help me with my adjustment to my new way of life. Maybe if you had someone to talk to about your change in life. I adjusted pretty fast to the ileostomy, but there are some days I still have problems with my wafer, including leaving a restaurant in a hurry. I always carry a backpack full of my needs, including a change of clothes and necessities. My backpack fits into my environment since I am a teacher.

Hi Sweede0, I hope your fear has reduced and do not let it stop you from doing things you enjoyed. You are not alone; let me share my experience with you: I had my bag burst due to diarrhea in a five-star hotel in the suburbs. Can you imagine what kind of embarrassment I had? Multi shame, I really felt like jumping into a hole. Friends had to help me bring underwear from the sauna center, buy satin pants from the five-star hotel in the suburbs (because my lower body and legs were covered by the manure liquid). When I accessed the pool bathroom, the diarrhea had not stopped, and it sprayed all over the bathroom. Can you imagine how I felt? That moment I just wanted to die, or to cover my face. Can you imagine how difficult and embarrassing I faced? That was an unforgettable experience, and this did not happen just once; however, it made me learn to understand others better, be more thoughtful towards people, and willing to share and help others. I was really depressed for over six months and even stayed in a mental hospital for a fortnight. But my indomitable personality would not allow me to just keep myself at home; life is too short, I had to overcome it. My friend gave me a few words, which I now share with you: nobody wants or expects things to happen this way, but when it has to happen, all you have to do is accept it and resolve the matter, and then let go of it. Try to live for the present and the future, not live in the past, then to torture and punish yourself while the scene no longer exists. You've been through a lot; your body deserves you to love her more... If you would like to talk, feel free to contact me by email, telephone, or over a coffee. I hope you understand my broken English with some wrong tenses and grammar.

My deepest sympathies in the loss of your mate. There is nothing harder than going it alone after having a loved one help you. I'm going to put on my therapy hat for a minute as that is what I did for a living for 20+ years. Portion your grief. Set aside a certain amount of time (say 30 minutes) to cry, scream, curse, whatever feels like it needs to come out; then dry your tears and do ONE small task or project. Grieve...but in daily segments in whatever way works for you. I pray. It's been over 4 years and I still grieve, but my allotted time is only 3-5 minutes anymore. Then I get up and do something. I only allow myself one to two chores or projects so I will not get overly tired. The rest of the time I spend doing things I enjoy, reading, gardening, cooking, baking, decorating, walking, emailing, Facebooking, TV, Skyping with my grandson...you get the picture. If you allow the day to just drag you along in your grief, it will consume you and you will suffocate. You do need to process your sorrow, but you need to be the one who says when and how, not your sorrow. Please don't think I do not understand. I do. My surgery cost me my job, my home, my social life, my family, and my pension. I simply could not perform the duties of my job description and I was deemed 100% disabled. I lost my mother a year ago this month. I lost my caretaker 3 months ago. I know about loss and how it can take control of your life and spit you out like a wad of snot. It IS hard. It does feel horrible. It can seem endless. But everything ends. Your pain will lessen. If you take back control of your emotions, you will get well. If you need help doing that, get it! I did and it made all the difference in the world. You may need medication. I did. I do. You may need therapy. I did. I do. You may need new bags! I did. My embarrassing situation was not as bad as poor mettajojo's - but it was bad. I was reading to my 3-year-old grandson and he was sitting on my lap. His wiggly little butt was doing a number on my bag and I could feel the wafer pulling away from my skin, but I silently prayed for the best since my son was sitting less than 5 feet away. Anyway, the story ended, I stood up, and poop rolled across the carpet like a burst bag of malted milk balls. My grandson put his hand over his mouth and said, "Oh no, Nana pooped in her pants!" His expression was one of disbelief and my son's was one of disgust. I grabbed a Kleenex and chased the poos, then ran from the room to the bathroom. It was horrible and then it became hilarious. I burst out laughing as I returned with room deodorizer and then everyone started laughing and saying, "Spray here! Spray here!" We got through it. My grandson now knows to sit on my right side and I changed to a stronger bag. I use the same thing Sweetdreams does (Hollister bag #8624). If you feel up to socializing, find a person or a group that makes you comfortable. If not, that's okay. Some people are not joiners (like me) but I do enjoy writing and emailing. A priest gave me a great piece of advice recently. My depression was all I could see. He told me I was looking at my life through distorted lenses. He made this analogy. What if I asked you to measure this room and gave you a hammer and a screwdriver to do the job? You couldn't do it because you were using the wrong tools. It's the same with life. You need the right tools to live well. And you know what those are for you. Each of us has different tools that work for us and we know what they are. It's just that sometimes life throws us a curve ball and we can't see once we've been whopped. We have to stop, brush off our fear, shame, guilt, sorrow, or whatever it is that is holding us from thriving and take baby steps back to the person we were before we got smacked by the ball. Don't give up on yourself. We can see you are ready for change or you would not have posted. There are lots of fine folks here and also in your world. You just have to get new lenses. Reach out. You will be caught. We won't let you fall. And if we fail, God is always there with His net.

I think you may need to start spoiling yourself and have some relaxed time - do short walks - celebrate yourself - I am not about to let this stop me from seeing the grandkids. Sit on the aisle and leave if you need to - wear a second cover - or pantyhose to hold things in - you can have a wonderful life. I am almost 8 months out and have several organs damaged by FAP. The ileostomy is hard to get used to in some ways and a piece of cake at other times. As for popcorn, use all-natural, air-popped and eat the soft parts. Enjoy real butter. I cannot, because of other organ damage, eat anything with chemicals in it - no Cool Whip, etc., or Cremora - no oleo - but the real butter is awesome. I am 67 and refuse to give in to this. I have been lucky that everyone wants to help and I taught for so many years that I have connections with many. Try to find meaningful hobbies and places to volunteer - pink smock, hospital visiting, reading to youngsters at school. I believe I have been given a whole new life and I want to taste it fully!

Hi, I think you have been given some wonderful advice by people who care deeply. I understand you in every way. My ileostomy bag came away during my son's wedding reception! My granddaughter was horrified and shouted, "Nanna has pooped herself." At the time, it wasn't amusing, but afterward, I couldn't help but laugh. As it was an ileo, it was very runny, and I had to put a five-year-old in charge of getting certain people to help and get Nanna's nappy bag, LOL. Bless her, she did exactly what she was told and took charge, but all I can think of was her standing outside the ladies' loo with her little hands on her hips and saying, "Stop, Nanna has pooped herself and everyone is in there helping her." So, any chance of keeping it quiet disappeared very quickly. Only this week, Wednesday, my bag came away three times with the heat (around 37 degrees C but very high humidity, and it is so difficult to get a bag to stick even with tape, etc.), but I just told my husband I needed a loo and to help me get my bag and walker. I did have a lady banging on the disabled toilet door to ask me why I was so long in there. I asked for a little bit longer, but she was determined to be persistent. By that time, I was in fresh undies with a clean stoma but had a piece of toilet paper at the end of it until I was dry enough to fit the next bag. I was so fed up with her I opened the door, gave her a good look at my stoma, and asked if she could do it any quicker, at which she almost fainted and told me to take my time! I can't say I understand how you feel to lose your life partner, but I do understand clinical depression from my nursing. You were given marvelous advice to vent when you need to, to give a voice to your frustrations and emotions. Go scream into the wind; it's so therapeutic, but if you continue to feel this way, please go to see your doctor who can prescribe something to help you. You may only need it for the short term, but only you will know. I allow myself 5 minutes when I need it, and then I make a choice that I will get through my day and I will even enjoy whatever the day brings. I have found Joyce Meyer Ministries online a wonderful and powerful help. She has a daily message and lots of material covering many topics to help. God bless you, and I will pray for you. Sincerely, Lorraine

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Hi Lorraine, I have just read your blog, which I found interesting. I am fairly new with the bag, having had an operation in September of last year. I didn't know anything about the operation; I just woke up three days later with the bag. Yes, I must say I have had three bursts with it, once in the hospital and twice at home in the bed, which was unpleasant. I was neurotic with it, but people must accept me the way I am now, or ignore me; it is their choice. My job is a little different because I teach English from home, so I have a lot of students. They are all aware of what I have; I don't hide it, and yes, sometimes I hear strange noises coming from it, and they hear it as well. I just say, unfortunately, I cannot control farts, and they just laugh. I was actually wondering how to handle it in the extreme heat; I will have to speak to my stoma sister about it. When I go shopping, I have the feeling that people look at me differently, as if they can sense something different. I was told by my doctor that they can do the reversal, but I have decided against it because of my age and health. I don't know how long you have had your bag, and if you will consider a reversal. I would love to hear further from you. Look after the grandkids. Regards, Midgey
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I know how you feel that people are looking at you but maybe subconsciously you are putting your hand over the area. I know I do that. My ileostomy is irreversible as my large bowel was removed and part of my small bowel. Good luck

Hi Lorraine - Thank you so much for recommending Joyce Meyer Ministries. She has helped me get through some bad days with her humor and way of preaching that is not preachy. I love her! I've also purchased her book, God is NOT mad at you, and some of her videos. Again, thanks. We need all the help we can get from a variety of sources, and she is a great one. Loretta

Hi Loretta,
I have also had bad experiences with my bag. I took photos to show my stoma sister what had happened. When they burst during the night, it's not pleasant. But it is part of life, and there are people worse off than we are. So, let us try to smile and make the best of it.
Regards,
Midgey

You're so right, Midgey!

I am so glad somebody agrees with my logic

Hi Midgey and Octobersunrise. I absolutely agree we didn't ask for the problems in our life, but I believe how we choose to think and act plays a huge role in our recovery, physically and mentally. So, stay positive and remember you may feel alone, but you can always jump online, start a new topic, or contact someone directly. If you want some suggestions about leakage or pancaking (where the output goes under the sticky base and can cause it to come off), just drop me a personal message, and I would be happy to discuss methods of dealing with it. Chin up, at least the sun rose on a new day, and we were fortunate enough to enjoy it. Sincerely, Lorraine