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Scared!!!

MelanieT's picture
MelanieT
Posts: 188
Joined: Nov 2009

I am still struggling with chris choice to do his illeostomy and colostomy reversal on tuesday the 23rd.. His surgeon is still trying to change his mind due to the LARGE blood clot in his main artery in his stomach.. He finished his will, took me to vegas for our anniversary(where he did and said everything i needed to hear) and wrote letters to our 4 daughters for me to give to them if he does not make it. He says he is at peace with all he has done and needs me to be there too... problem is , I just cant. He by no means wants to die but knows the risk of doing this. How do I be ok with this???? :(

Loves,
Mel

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"I am still struggling with chris choice to do his illeostomy and colostomy reversal"

It's his choice, we all realize that, just as it had been my choice
three years ago.

I still have the ileostomy, since I sat down with the specialists,
and listened, and read numerous postings from other patients
that had reversals...

For me, it would take the same invasive operation that it took
to give me a stoma. Sure, they said it's reversible, but the
risk for me was a lot.

No, I didn't have a blood clot waiting to kill me, but there are
long-term problems that managed to convince me that a reversal
may leave me worse off than I am now.

There are things like permanent erectile dysfunction, urinary
incontinence, bowel incontinence, and a host of other internal
problems due to the sheer nature of the invasive surgery.

I hate having an ileostomy, especially since I didn't have an
ostomy after my initial surgery. They goofed up, and had to
re-do the entire surgery a week+ later, and gave me what
they said was a "temporary" ileostomy. I wanted them to
reverse it prior to chemotherapy, and they refused to do it.

My surgical wounds didn't heal for almost 6 months after the
surgery, and it was too late for chemo to work as it should.

I fought like all hell, for nearly the entire recovery time; I wanted
this damned ileostomy gone at any cost....

I had leaks that ate my skin away so bad, that nothing would
stick to it. I slept in the bath tub one night, since there was no
way I could stop the mess... It was 3am and I had wished
I had died instead of having to live as I was....

I found ways to resolve the problems with the pouching system,
and it's no big deal anymore. I still hate it, and I hate looking
in the mirror, but.......

But from all that I had read while healing... I'm not too sure I
really want it reversed anymore. The thought of incontinence,
of having to wear a diaper instead of this bag... of having
what's left of sex life gone forever.... is it really worth it?

Please let your guy read what's kept me from getting this
damned thing reversed? He's in the same boat I am; and like
me, he can get it reversed a year or more from now, there's
no urgency to make this decision. But he oughta' realize, as
I have, that the reversal has a very high chance of causing
conditions that will be a whole lot worse than what he's dealing
with at the moment.

He really should grab a beer and take a long, deep breath, and
consider what might be worse than the risk of dying.

There are some things in life, that a guy rates higher than
the risk of death..... Know the risks; they are real.

John

MelanieT's picture
MelanieT
Posts: 188
Joined: Nov 2009

john-- i agree and so many levels with all you have said. but in saying that, chris is hell bent on doing it. I have reserched over and over the things that it could do or go wrong but in his mind he will be that percent that slides right through. Thanks for all your great input and for taking the time to think about me and respond to me. you are great!! I will keep you all posted ...thanks again

loves,
mel

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

It appears you have your marriage back on track, good for you hanging in there when Chris was going through a very difficult time. As caregivers, it is never easy, we don't have the cancer but we sure do live it. That being said, treatment decisions are ultimately Chris' decision. He can and should take your feelings into consideration but the bottom line is it is his decision, you can only hope it is the right decision for him and you also. If memory serves you said he has absolutely hated having a "bag". Hopefully the surgeon can change his mind but if not, then you need to support his decision and keep hainging in there like you have. It is not easy but you have come this far that you can hang in there a little farther. If this was an impossible surgery, the surgeon wouuld not agree to do it. Hope this makes sense. Take care - Tina

MelanieT's picture
MelanieT
Posts: 188
Joined: Nov 2009

If i have learned anything from cancer it is that things are not my decision. I understand that but would like to be considered. I do support chris if this is truly what he wants but being the one left behind if it goes bad is hard to swallow.. he is going through with it and i just need to be behind him.. just a little...... alot scared

loves,
mel

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I have no great words of wisdom for you. I would feel exactly as you or maybe even worse. I would think my husband was being selfish. I would not be okay with this choice.

Would you mind if I pray for him and this blood clot problem? For his safety during surgery, the surgeon and all involved plus you and the girls?
Diane

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

In hopes that you will read this and take it as someone who fought some of the same battles and struggled with decisions that were not only mine to make but also to see that I made the right ones that will allow my wife and children to keep me around as long as possible. Shooting straight, don't be hardheaded, wait for a while for the reversals. It seems as though your hell bent on getting it done, its great to have a positive attitude but not at the expense of losing your life when there are other options. Like John said, sit back drink a beer, and contemplate what is best for the wife and kids and forget for now what you want. Sorry, and if you want to vent let her rip, I am just letting you know how aggravating it can get and we sometimes cut off our noses to spite our faces. Please don't make some of the same mistakes I did. Your wife and kids deserve more than that. Just rethink for a little bit , you'll do the right thing whatever it is.....

MelanieT's picture
MelanieT
Posts: 188
Joined: Nov 2009

Thanks Buzz... I no how much chris hates these bags and i want it fixed for him too too just not at the expense of his life. Everyone tells me its his choice and i no that but his choices effect me and our 4 girls... I no he will go through this and i am trying to be ok and think nothing but possitive but i am truly scared. Thanks for you words.. they help me

loves,
mel

MelanieT's picture
MelanieT
Posts: 188
Joined: Nov 2009

thank you Diane and yes, yes, yes!!! I would love for you to pray for us. I no these this is up to chris but i also no the choices he makes effects us too... I want him to do what ever is best for him but i cant help but feel a little sad and scared. Thanks so much

loves,
Mel

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Melanie,

My heart aches for the worry and concern you have for Chris's decision to proceed despite great risk right now. I can only imagine him wanting to do the reversal soon, but it is definitely hard to understand how that desire outweighs all the risk that his doctor has warned him about with the blood clot. Has his doctor put him on blood thinners to try to dissipate the clot? I suppose he would have to be off all blood thinners in prep for surgery so soon. I will be praying (hope you don't mind prayer) for either of two things: that the blood clot somehow miraculously thins and goes away in time, or that Chris would be persuaded to change his mind and put the reversal off for just a short while so that the blod clot can be properly and more safely dealt with.

You take care, my dear. I'll be thinking of you both.

Lisa

MelanieT's picture
MelanieT
Posts: 188
Joined: Nov 2009

Lisa-- he has been on coumadin for 7 months and starting thurs he stopped that and is just doing the lovenox shots 2xs a day til surgery. I no chris loves me and the girls and i no in his mind his quality of life is nothing with the bags.. I think that is why he is ok to go if it takes him.. I just pray it all goes well.. thanks for your kind words. You all are always here and it means so much to me..

loves,
mel

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

sorry Mel- I am just having a hard time wrapping my brain around this one. He is chewing again and drinking beer- basically said if he can't do these things he doesn't want to live anymore. He hates the bags so much, he is willing to go against medical advice, basically he has accepted that he will die to have the reversal. Don't you think he really wants to live, but only on his terms? Pushing fate? I know having cancer sucks, I know having a bag sucks, and if the truth would be told, I would in a heart beat smoke again if I believed it would have no medical results. It's just the things that are soooooo damn important, my kids, my grandson (and future grandchildren), the feel of the warmth of the sun, the wind on my face on a motorcycle, the joy in my heart to see the mountains, to really laugh at something, beautiful orgasms, sunrises while drinking coffee, the feel of sand between my toes, the lala feeling right before I go to sleep- I could go on and on and on and on- and I just can't believe that someone would put chewing, beer and wearing a bag as being more important than all the joy, happiness, love and life that there is. It doesn't make any sense to me.

If anything, why doesn't he postpone it? Why next week? I know he hates the bag so much, but at least try and find a surgeon that specializes more in his issue. And finally, wow, I can't believe a surgeon would actually go through the procedure when he is convinced it will kill him- or the odds are stacked against him that way.

dirtyshirt
Posts: 10
Joined: Feb 2010

Hi Mel

This is my second post at CSN. I can't believe how close your husband's situation is to mine. Except for the fact that his blood clot settled in his stomach. Mine nestled somewhere in my lung, causing a pulmonary embolism. Yeah, it hurt!!

I was also on coumadin and lovenox for most of a year. In fact, they also installed a vena cava filter, which would be a great thing for your Chris if his clot was not already above that point.

I can't believe that after all that blood thinning that he still has much of a clot left. Have they scanned for it recently? How long until they figure its dissolved?

At any rate, the main concern for Chris is the bag, which I understand. My wife is an angel, and yet our sex life was non-existent while I had mine. Mostly because of my own body image.

On the other hand, I took it upon myself to take care of that damned bag to the best of my abilities. I kept the thing so clean that the skin was as healthy around the stoma as anywhere else. Of course, having the right products helped. Has he looked into all the alternative bags around? Which one is he using? Some are much worse than others, believe me.

I guess what I'm suggesting is that Chris needs to reassess the effect of the bag on his life. Get rid of it? Of course. But is now the right time? It seems not. I think he needs to reassess that thing he hates so much - and perhaps work out a different system that he can live with more easily. I hope this all works out for you both.

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

And the decisions are never easy. It is hard as a caregiver to accept decisions, watch loved ones suffer and be ok with their ultimate decision about their destiny. The best advice I can give is to keep doing what you are doing. Loving and supporting Chris to the best of your ability. I will keep you in my prayers. Marie

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Make him come in here and read these posts or run them off and post them on the fridge. You are a 50% part of this so I would do whatever it takes to make him listen. I still don't think the Dr will do it considering the risks involved . I think the Dr is trying to allow him to make his own decision to not go ahead with it at this time before the Dr has to tell him that he won't do it right now because of the % of failure. No Dr would make a call like that and go ahead with it knowing the possible ramifications. I think its a mute point. Hes only allowing him the chance to make the decision himself first....kind of a save face if you will......good luck......Buzz

dorookie
Posts: 1736
Joined: Jul 2007

How can a doctor do the surgery if its a high risk for death? What are the doctors saying? I dont understand...You are supposed to be able to make it through the surgery before they decide to do a surgery, right????

I will be praying for you and him, please keep us posted.

God Bless
Beth

coloCan
Posts: 1956
Joined: Oct 2009

accept living with a bag as reversal in my case IS out of the question. I would strongly suggest your husband communicate with some of us living with a colostomy--I'm just starting to reclaim my life after 6 1/2 months of recovery while still undergoing postop chemo.You can live a life worth living with a bag......Wishing the best of results in any event....steve

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

I don't get what Chris is trying to do. If his doctors are strongly advising him against this at this time, why then is he hell-bent on doing it now? You say "He by no means wants to die but knows the risk of doing this." He knows he doesn't have to have this procedure done now and there seem to be some very serious risks with him going ahead with this now. He has all of his affairs in order too. I have to question why now?
I would have a hard time being OK with this too...
-phil

MelanieT's picture
MelanieT
Posts: 188
Joined: Nov 2009

Phil that is my exact point!!! He says since the day he woke up with both bags the only thing he has held onto was the dr saying they can be reversed. He says "now" is because the blood clots may never go away. He has been on coumadin for 7 months with no change. He says he wakes up and hates everyday because of them. So if he dies during this, that is what was meant to happen.. I guess i just disagree.. There are alot of risks and he has a choice to say no.. I am broken...:(

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