I owe all of you a response that your kindness and care deserve.
Am I hurting yes. Have I lost hope. Yes. Have I lost myself. Yes.
I can no longer go to work. It has been 7 months. My clients no longer call and barely write to me. I am self employed and recieve no unemployment benefits or sick leave. My body is torn and twisted and sore. For the first time in my life the "I can't"s out weigh the "I can"s.
My husband of 3 years doesn't understand what is happening to his wife. He threw me 2 surprise birthday parties this weekend. I could neither eat, nor dress nor dance nor relax. Nobody knew but me.
I am not the "poor thing" that my in-laws think. I am not diseased or sick or even ill. I have a valve that does not wish to function properly. That valve is deciding the outcome of my life for me.
I had a colostomy as a child. Maybe that is why I am phobic of them. That is not who I am or who I wish to be. I can barely look at myself as it is, more scars than skin on my abdomen. A belt, a face plate, a tube, a bag...etc You all know the routine. The leakage, smell, pain and discomfort. I can no longer lie on either side, it has been 10 month, baths are out and so is.....
I did not marry my husband to become "good friends". I do not wish for a platonic relationship.
I can no longer even clean my own house.
Yes, I feel useless. I take up space and am no longer productive. I can not pick up the grandchildren or bend down to them. My life is now defined by what I can no longer do.
I HATE IT!
This is not the girl that ran away from pain and disease and inspite of all of the difficulties and hardship carved out a life for herself in Paris. This is a stranger.
I have lost my femininity, my sexuality and sensuality.
I don't know what to look for to replace it all but I do know that nothing seems to matter anymore without it. I am not 78 or 98 but in my 40's. A newly wed ( a miracle in itself!) and a new grandmother. I thought that life was finally "begining" not ending.
I have no money left to fly back to Toronto for another procedure, no veins left for I.V's or pic lines, no strength for yet another anesthesia and no hair left to loose. I refuse cameras or pictures of me. I barely sleep anymore. I am tired of the "looks" that my "family" give me.
I am not a victim and refuse to become one. I refuse to become dependant on others physically, emotionally or financially. but that is exactly where I am headed. I know or no way out anymore.
An outside bag? Why oh, Why does everyone think that it will herniate less or not prolapse when an inside one does. What is the difference? Nothing. A prolapse And an outside bag. No thank you.
Quality of life has always been my creedo.
Fight the good fight. Do not go gently into that good night. Do not go down with the ship....now I just want the big sleep.
Yes, I ask myself if the next miracle were to be just around the cornor, would you give up? If you won the lottery, would you be depressed or run strait back for "just one more try"? But the miracles are running out. Scratch that. They have already run out. I can no longer impose on my friends....6 months in their home and on their sofa. Midnight bootie calls to emerg and O.R. Occlusions and prolapses and leaking out all over their floors and carpets and furniture. Their love has no limit, maybe. But their patience??????????
Mine is definitly running low.
I apologise for this triade of words that does nothing to help any of you....but there is absolutely NO One here who I can speak with. Who knows or even understands. I try to spare my husband the knowledge that I am down...he is worse and this can not help him. He is holding it all together. For now.
Keep writing...answering....being kind. I check 10 times a day. You are my lifeline to sanity.
Thank you
Sharon

Sharon, I am almost at a loss for anything to say as it seems to have all been said by the good caring folk from this site.

I'm not going to try to persuade you to go to an ileostomy, what I would suggest though is that you are suffering from deep depression and PTSD and need to seek help for that. I hope you can find a way to handle what you are going through and see things with a clearer perspective.

Other than that all I can offer is a gentle (((((((((((((((((((hug))))))))))))))))))) from across the Channel and my best wishes that you see the light at the end of this very dark tunnel soon.

Luv & hugs

Shell

I agree with Shell. It is almost as if you don't want to hear any positive news. What do you want to hear from us? You need to be treated for depression, first of all. And no - most people with 'end' ileostomies do NOT have prolapses and leaks. I have told you before that people swim, ski and eat a more full diet than those of us with K-pouches. I know a young woman in Canada who goes on trips, goes to college, buys neat clothes and eats everything. She never complains of her external appliance. Please, think about it.

Sharon, you will just HAVE to believe us, that you are in a deep clinical depression right now -- and that means that you can NOT and are NOT now thinking rationally and clearly; nobody truly depressed is able to think rationally and clearly; EVERY thought and perception is being DISTORTED by your depression. You HAVE to be treated for your depression, effectively, as soon as possible! Once you can rationally and clearly perceive and think again (AFTER you are not so deeply depressed), then you WILL see that you DO have some DECENT choice that does not include "the deep sleep". For the sake of your wonderful husband, your grandchildren, your dear friends, and all those who love and NEED you, you HAVE to take action regarding the depression. Your memories of a colostomy when you were a child are NOT representative of the way things can be, now in year 2007 or year 2008, with an ileostomy, IF that ends up to be the result for you....but there's NO way you can understand that, in your present condition because your depression is having your brain badly distort all of your perceptions and thought processes, including your memories and everything else; that's what deep depression does. Please, get help for the depression ASAP!!!!!--it is the first, and necessary step....

Sharon, I just had a temporary ostomy after correction surgery. Before I had one, I was afraid of it, afraid of how it would look, afraid of how people would react to it, afraid of leaks, or accidents, etc. After surgery, I was so surprised at how good I felt, and how easy it was to care for.

It did not smell, I had no leaks, I kept my ostomy for an extra 2 months because it was the healthiest I had felt in a very long time. My husband even scheduled an extra vacation for just the two of us because I was feeling so good and we didn't know what the next surgery would bring.

Sharon, I went swimming in the ocean, in the pool, I shopped, and ate anything I wanted. I took 6 five hour flights within those 8 months, and through it all, had no problems.

My brother told me at the beach one day, that he couldn't even tell which side my ostomy was on, and I was wearing a bathing suit. The only adjustment I made was wearing pants that sit at the waist, but I wore jeans and all my other regular clothes.

The day I went for surgery, my 24 year old daughter didn't want me to go, she told me to stay the way I was and that I was happy and healthy, and that's what mattered to her. My husband told me the same thing, he didn't care that I had an ostomy, and he didn't care if I kept it, he just wanted me to be healthy and happy.

So, please rethink your decision, maybe they can do a temporary and let things settle down, and you can get your health back. I can't tell you how great I felt for 8 months.

You really need to realize that your family loves you, and it doesn't matter if you have an ostomy or a k-pouch or a j-pouch. They love you.

janna

You are worng, it is not that I don't want to hear good news, it is that after 11 surgeries in the last 7 years and over 40 in my short little life, I am starting to learn from experience!
Believe me, I do love life and hope against all hope that on Weds. the French Dr. will scope me and say, "it is just that the pouch has not stretched enough and that your valve is too long and is bumping or sticking against the wall...just wait and it will work itself out......"
Do I believe it? do I believe in fairies? elves and unicorns????
I do not want to "be able to dress nice" or "swim almost like other people"....
I want to be me.
A little vanity and egoism is what has allowed me to survive alone for the last 25 yers with no help, no family and no one who cared.
Wanting to be pretty or beautiful or handsome is not a crime. I don't give a flying hoot about "the public" . I care about my husband and I when we are alone. I care about my own personal self image and not what "the others" will think.
I don't want to turn myself off. I don't want to hate my own body.
Wrinkles will come (they are fast on thier way) and grey hair is all over me now, where I can see it and where others can't
I wear them both like wonderful badges of courage...proof that I have lived long enough to make it this far.
But no, my guts hanging out??????Been there, thank you. I do not want it.
I am NOT DEPRESSED. Far from it. I am pissed. angry enough to be lucide. I am broke..every last cent has gone into more surgeries than I care to remember. If I had wanted to have a bag, I could have saved myself nearly 100,000 dollars pain, anguish and sorrow and had it done here...no fuss or muss, but I assume that every single one of you who has a wonderful Koch Pouch chose it for a very good reason. And not the least being esthetic.
None of us want a "bag". If we loved them so much, then we wouldn't be on this site in the first place, we would be elsewhere.
I do not wish to make do with life, I want to live it. I do not want to cry every time I underess and look down. Yes, I have friends who have outside bags, one darling one going back for the 4th reivsion in as many years for abdominal hernia and prolapse...and that is with an end illio. so, please do not tell me that it doesn't happen...it happens for exactly the same reasons that mine do, a weakend abdominal wall. I was never prone to it, now I am. Why???Who knows, some things just are.
Does she feel sexy?? No; Does she dress sexy? No. Does she feel good about herself. NO.
But she is not a candidate for a K pouch...and she has kids...what are her choices? None. I love her love and courage...and admire it. but she has had 4 years of hell, just the begining. I have had 47. Getting a bit boring to me.
So, although an outside bag may be a non-choice or no brainer for some, it is not for me...never say never my husband says, and he is right but....If I am not depressed now, I will be practically catatonic then...if it ever comes to that...

Hey Sharon...don't know what to say that hasn't already been said. Just want you to know that your words have touched me and I truly feel deep sorrow for your situation. I pray peace and hope fill your life soon!

nys

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This message has been edited. Last edited by: Bodoni,

Sharon. I wish you good luck as well. I hope things work out the way you desire. I have no more to say. John

Sharon, the truth is, we each choose to think what we think, look at things the way we look at them, and essentially choose to be happy or not. Life isn't fair, and it's less fair to some of us than to others. But everyone knows that there are people worse off, with horrible situations and less choices, who are able to stop fighting what is, and start focusing on what they have. Some of them do not have a loving wonderful spouse or any loving wonderful friend, or any beautiful grandchild, or some other things that I bet you have which are each a reason in themself to stop focusing on what you don't have. If your husband were the one with this situation, how would you think about him? I doubt that whether he ended up with an end ileostomy would change your feelings, sexual or otherwise. He knew all the risks and possibilities of this when he married you, and he still wanted you. You are NOT thinking rationally, and just like an alcoholic that denies they are drunk, you are in self-denial. What more can anyone say to help you? You have to help yourself by getting help for the way you are feeling. Stop THINKING because you are just playing a broken, irrational record over and over again in your head. Deal with this moment, don't think about the past or the future. Just go talk to someone who can help you deal with the way you feel right now. I too have nothing more I can think to say after this. Just know I am praying for you to get through this.

Sharon...try these links...hospital in or near Paris...some very experienced surgeins there..maybe can be of some help...


[URL=http://www.aphp.fr/index.php?module=offredesoins&action=afficherConsultation&vue=ods_hsc_consultation&hopital=073&service=0010&consultation=CANC&nom=PARC&prenom=Rolland&precision=CANCEROLOGIE DIGESTIVE]http://www.aphp.fr/index.php?module=offredesoins&action=afficherConsultation&vue=ods_hsc_consultation&hopital=073&service=0010&consultation=CANC&nom=PARC&prenom=Rolland&precision=CANCEROLOGIE DIGESTIVE[/URL]


http://www.aphp.fr/index.php?module=offredesoins&action...ecision=CANCEROLOGIE DIGESTIVE


http://www.aphp.fr/index.php?module=portail&action=affi...portail&NIHOPITAL=35



http://www.aphp.fr/index.php?module=offredesoins&action...tal=073&service=0010



http://www.aphp.fr/index.php?module=portail&action=affi...portail&NIHOPITAL=35http://www.aphp.fr/index.php?module=offredesoins&action=afficherservice&vue=ods_hsc_service&hopital=073&service=0010


rww

Thank you for the links RWW2007,
I already have a rdv there tomorrow at 2:45pm with Prof. Tiret.
He is the reference in France at the moment on K pouches, although he does not do them he does follow up somewhat on them. The previous chief of surgery, Prof. Parc was also suppposed to be the national expert; He opperated me in 2000 and really screwed up the valve and then refused to do anything about it.
4 years later I went back to Canada and Dr. C.
I don't have too much confidence in the French medical establishment's surgical prowess regarding a K pouch but maybe it is sufficient to practice some tests and transfer the necessary info back to Canada.
I will ask for a pouchagram and scope, having insurance here helps a bit. From there I will wing it depending on what they see or don't.
I serves very little purpose to second guess the results....I just have to be patient and see.
I won't unhook until tomorrow just in case...not a really good idea to run to emerg here at midnight..they aren't really good at this kind of thing as it is.
Somehow I suspect that I will be able to intubate fine, until the next incident and then the cycle will start itself again.
Is living hooked up just at night a possiblity? Will it suffice? I really wonder if it would work.
Till tomorrow.......
by the way, true clinical depression or any other form of depression is not reactive....it doesn't go away when the catalist disappears either. I laugh, joke, shop and live but I am very unhappy about the situation, not depressed. If the situation rectifies itself my unhappiness evaporates. Please be careful about banding around that sort of expression. Not all of us are depressed or even get depressed. I do not believe is a pill for every season, a pill for every reason. Drugs are not the answer to everyone's problems.
We all react differently to adversity and I usually react by fighting back. If I have given up or given in, it is due to exhaustion and a general state of fed-up-ness. A knowledge that this is one war that I may not be able to win.
A roof, no matter how modest, a spouse, children or grandchildren do not replace a sense of self...and should not. It is not a trade off. If I give up the spouse, I get my valve back!?! I don't think so. We should not live for others but for ourselves, just like we can not heal others, only ourselves.
I am very grateful for those that I love and who love me but when push comes to shove, I am the one who lives in my body and lives with the pain, not them. They can come and go as they please, forget for an hour or day. Not me.
I much prefer to be a good example than a cautionary tale but either way, I still have to be happy 'in my own skin'. (French expression)
You are all wonderful, caring individuals and I truely believe that you are all contributing to help me get through the darkest night...again, my deepest thanks
Sharon