Life???

Replies
18
Views
1333
sweede0
Nov 16, 2013 10:34 pm
Iam sorry but sncehavingthe surgery[ileostomy find it hard to get past it.Iam 79 years old and this was just done Feb. 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 quicly without it getting to be obvious.Since then i finally,with the help of a stoma nurse, have a bag that is pretty trustworthy but i cant 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 that way with me.i want to enjoy my life but i dont feel i can....

Mrs.A
Nov 17, 2013 1:41 am
Hi Sweede0,I am sorry you are having a hard time but remember it is all so very new. I does get better. Time will help, celebrate the small steps. Look, you said yourself you managed to get out of the restaurant without it getting to be 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.
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blessedtobealive50
Nov 17, 2013 6:58 am
Hi Sweede0,Read your post, I think we all experienced the samething you did. I agree with the person up above, its new. Take it easy small steps. And pretty soon you will be a pro. :)
sweede0
Nov 18, 2013 8:23 pm
I have been very busy all my life and able to do most anything,very strong.I worked until I was 70 and quit then to take care of my ill husband until he passed away. Iam trying really hard to accept what I can't change but its very hard..I will keep trying . I get so lonely at times too.
stillalive
Nov 25, 2013 7:10 am
It took me awhile to accept. Family and friends help by not treating me any different. I felt at first I was. You would be surprised at the number of people who have ostomys 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.
 

How to Manage Emotions with LeeAnne Hayden | Hollister

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Past Member
Nov 25, 2013 8:24 pm
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.
Past Member
Nov 25, 2013 8:38 pm
I am closer to your age then 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 either 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 so 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 Sillouhette (like a depend only much nicer) just in case. I even stopped going to my granddaughters recital for fear of a leak (THIS WAS BEFORE). I am caution 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 gasy foods, cannot drink carbonated rootbeer 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 time it is common sense and asking yourself do I really want this this bad to risk a leak or feeling bad? You willdo 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 different. 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 sosorry 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!
tknight1
Nov 25, 2013 11:21 pm
It takes time for some people to adjust. Right after I had my first ileostomy my surgeon asked me if I wanted to 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 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.
mettajojo
Nov 25, 2013 10:30 pm
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 feel like to jump into a hole. Friends had to help me to bring an underwear from the sauna center, buy a satin pants from the five-star hotel in the suburbs ( because my lower body and legs are covered by the manure liquid). When I access to the pool bathroom , diarrhea has not stopped , and it sprayed all over the bathroom, can you imagine how I feel? That moment I just want to die, or to cover my face, can you imagine how difficult and embarrassment I faced? That was an unforgettable experience , and this is not happened just once, however it made ??me learnt to understand others better, more thoughtful towards people and willing to share and help others. I was really depression for over six months and even stayed in a mental hospital for 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 had gave me a few words, I now share with you : nobody wants/expect things to happen this way, but when it has to happened, all you had to do is to 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 has no longer exist. You've been through a lot, your body deserved 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 gramma.
Past Member
Nov 26, 2013 6:26 am
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 projeccts 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.
Ewesful
Dec 04, 2013 2:10 am
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 ilieostomy is hard to get used to in some ways and a piece of cake at other times -- as for popcorn -- use all nature - air poped and eat the soft parts -- enjoy real butter -- I cannot because of other organ damage, eat anything with chemicals in it - no coolwhip etc or creamora - no oleo - but the real butter ia 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!
lorraine-cooper1960
Jan 24, 2014 3:46 pm
Hi, i think you have been given some wonderful advice by people who care deeply. I understand you in everyway. My ileostomy bag came away during my sons wedding reception! My grand daughter was horrified and shouted nanna has pooped herself. At the time it wasnt amusing but after i couldnt 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 nannas nappy bag LOL. Bless she 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 37deg C but very high humidity and it is so difficult so 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 if 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 me 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 marvellous advice to vent when you need to, to give a voice to your frustrations and emotions. Go scream in to the wind its 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 on line 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
Past Member
Feb 22, 2014 12:12 pm
Hi LorraineI have just read your blog, which I found interesting, I am fairly new with the bag,had an operation in September of last year I didn't know anything about the op,just woke up three days later with the bag, yes I must say I have had three bursts withIt, once in 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 grand kidsRegardsMidgey
lorraine-cooper1960
Feb 23, 2014 3:38 am
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
Past Member
Feb 25, 2014 8:00 am
Hi Lorraine - Thank you so much for recommendingJoyce 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
Past Member
Feb 25, 2014 11:56 am
Hi LorettaI have also had done bad experiences with my bag I took photos to show my stoma sister, what gad happenedWhen they burst during the night not pleasant.But it is part of life, and their are people worse off than we are,So let us try to smile and make the best of itRegardsMidgey
Past Member
Feb 25, 2014 6:46 pm
You're so right, Midgey!
Past Member
Feb 25, 2014 7:10 pm
I am so glad somebody agrees with my logic
lorraine-cooper1960
Feb 26, 2014 11:00 am
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 have a huge role to play in our recovery. Physically and mentally. So stay positive and remember you may feel alone but you can always jump on line start a new topic or contact someone direct, 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