Here we go again.

[Cat Dancer]

The wound on my butt..over the past month...has tanked. Tunnelled back down to the bone (spinal cord), widened, infected. I have two options in front of me:

Option A: Go into the hospital on Friday, have two surgeries. First to install a colostomy. Second to debride the wound, clean it up, cut out all the dead tissue, etc. and install a vacuum pump. Send me home after 3 days (or so) with the pump attached to my butt, visiting nurses 3 days a week to deal with it. Multiple trips to/from wound clinic (one hour away) each week, 3-4 weeks. Once the wound is "back under control", another surgery. This time, to fill the hole left behind (no pun intended). This would mean cutting out some tissue from somewhere else on my body, sticking it in my butt, hoping it sticks. Two wounds to heal. And 2-3 months in a nursing home, for it to heal. Then possibly a fourth surgery, to reverse the colostomy.

Option B: Do nothing. The wound will infect, sepsis will set in, I'll die in a week or so, surely no more than a month. Move into hospice.

I'm seriously considering Option B.

After 33 years of dealing with MS, recovering from several severe exacerbations early on, and now thiese last 2 years of one crisis after another, I'm tired. Don't know that I have another fight in my. At 68, I've led a good life. I cant / wont ask Tom Cat to continue to be my 24 hour care giver, nor commute one hour a way several days a week while I'm in a nursing home (He won't sta home, even though I really push him to>) Nor can I afford it. Running out of money. Blew through a bunch these last 2 years on stuff like adult duapers, bandaging, various drugs, co-pays, private pays, etc. I'm tired. I'm worn. I'm done.

Anyway. Cheery note on a lovely fall day here. Keep the faith. I've lost mine; if you find it lying around somewhere, let me know. Ca.

[SalpalSally]

Sheeeeze Cat, I understand the feeling, but no matter how much I wished
to die, rather than go thru this again, I didn't. So here I am, and still hoping.
But God will decide and He's not ready for me yet. Hang in there, He may not
be ready for you yet, either. You're still young and otherwise healthy.

Much good luck and wishes to you and TC.

[agate]

Colostomies aren't so bad, judging from people I've known with them. I've known several people who've had them for years--my brother, for instance (40 years). You're talking about a reversible colostomy, and so it isn't as if you'd be stuck with it.

It sounds as if you mainly don't want to be a burden. Most of us don't want to be a burden to our loved ones. It's a very legitimate way to feel, I think.

Why not find out what options are available to people who have no spouse or other available friend or relative and choose those options whenever you can so you won't need to turn to Tom Cat for help? I'm talking about pretending to yourself that he's not there, for all practical purposes, and doing things the way you would do them if he weren't there. Occasionally of course you could use him if/when it seems mutually feasible.

Could you give directions to the nursing home that you're to have no visitors? You could talk to Tom Cat by phone, yes?

As for the money situation, many medical providers will understand if you let them know you can't pay as soon as they'd like. They will wait, offer you terms, particularly if you're already known to them. I put lots of medical expenses on a credit card. Yes, it's unwise to be constantly in debt and I'd love to pay all my bills right away but there are times when I just can't. You can't squeeze blood from a stone.


The hour-long trips to/from the wound clinic might be tiring but you'll probably think of ways of getting through them with minimal discomfort even if you're using some other means of transportation than Tom Cat. Might the wound clinic run a special van for people like yourself?

And 68 is YOUNG! Much too young to be thinking of an Option B like the one you've described.

[Jeanie Z]

:) Cat I am sorry your wound has gotten worse. Did you ever try honey? I truly believe it heals and can even kill MRSA. We are all praying for you. Keep us posted if you can. Jeanie :)

[Lazarus]

Well, you wrote to us so you must want us to say something wise. But, for so many years I have counted on you to be the wise person.now I do not know what to say. I just know that whenever I feel like letting go, someone tells me they would miss me, and I have learned to just hang on. Things can be done, things improve and you ARE loved.
Linda

[Sunshine]

It's too soon for Option B. Go for A, you can always bail if it gets to be too much.

[Pegakafarmgirl]

Cat,, its seems the whole MS thing is getting to you , and am so sorry, it has come to this, maybe there is a option C ? has to be something,,.

[Virginia]

Cat, my first thought was 68 is way too young to be considering option B. Then I read the replies and found that others agree.

Seems to me Agate and some others gave some good answers. I also like BBS1951's reply. Option B will always be there until you take it, then it will be too late. That could be a quick solution to a problem that this time might just be the time they take care of everything.

I know this is easy for me to say, I am not the one going through it and haven't been the one going through it all along like you. But then you were always stronger than I am. I've watched you through the years and I know you are tough, so how about proving it one more time with option A.

[Frog42]

All I can offer is hugs and hope you make a good decision for yourself.

[Earth Mother 2 Angels]

((((((Cat)))))) ~

Option A is overwhelming you, which is absolutely understandable. You're exhausted and probably fed up with all that you've endured. Just trying to absorb what Option A entails is likely prompting you to react in favor of Option B. While I don't know you nearly as well as your friends here, I've followed your journey, and I know that you are a determined, courageous wise woman.

Before you completely discard Option A, perhaps you could explore ways to make it easier, or at least less difficult for you, if you do choose Option A.

As agate said, investigate possibilities for home care, as if Tom Cat was not available. Tell your physician(s) that you can't do this without more help, that your husband can't be your full time caregiver, and ask your doctor to do everything possible to get you the care you need.

Speak to your insurance rep about your supply needs. Ask if colostomy supplies are covered. If dressings are covered. If your home health nursing is covered, then the supplies needed for that care should be covered.

Ask your doctor if the wound care clinic visits are unquestionably necessary, if home health nursing is properly caring for your wound, and reporting to the doctor. Our wound care nurses took photos of Jon's wound, shared those photos with the head wound care nurse, the wound care team, and the wound care doc. Explain to your doctor that the travel 1 hour to and from is a hardship for you, and ask your doc what alternatives might be possible. Any chance of a doc making a house call? It's worth asking, even if the answer is no.

If you and Tom Cat can communicate by phone, text, email or Skype or FaceTime, then that could reduce the number of visits he makes to the nursing home. Maybe you could have a "date night," which would give both of you something to look forward to.

How does Tom Cat feel about your options? I suspect that he would go to the moon and back for you, so I'm hoping you are having honest conversations now about your choices and decisions. Speak from your hearts, with the great love and respect you have for each other, and don't hold anything back.

My son, Jon, has had a colostomy for 10 years. It has been a blessing for him, and it isn't difficult to manage. It's a relief not to have to sit on a hard toilet (which he hasn't been able to do for many years anyway). And all that is entailed in cleaning up after using the toilet is no longer a concern. It's also a better option than diapers, and the clean up involved there. Once you get used to it, you might even find you don't want a reversal. I know that sounds peculiar, but please believe me that it is much easier to deal with than toilets and diapers.

Be forthright with your physicians and let them know your reservations and fears, as well as your needs for home care and supplies, and the financial drain on you and Tom Cat. Plead your case to them to go the extra mile for you.

As I'm close to your age, I agree with all of your friends here that 68 is young. But, given what you've been going through for so long, I sure get how you feel much older than your chronological age. Still, do try to remember that you are young in years.

Clearly, you are very loved and treasured by Tom Cat, your friends here and your friends there. Those, who love you, including me, truly don't want to lose you. We also acknowledge your suffering and the challenges you are facing and are here to support you fully.

Whatever faith you are lacking now, I have for you.

I am thinking of and praying for you and Tom Cat ~

Love & Light,

Rose

[nuthatch]

Cat,
I'm sorry you're having to face this all over again. I don't have any words of wisdom, but I hope you can find the strength to give the colostomy a try. It may be just what it takes to turn the corner in your recovery, giving the wound a chance to heal. I believe Rose when she says it's easier to deal with a colostomy than diapers or toileting especially when you're wheelchair or bedbound, plus trying to recover from a wound in the "vicinity".

I sometimes frequent another forum called Care Cure Communities. Most of the member have spinal cord injuries and they are very open and helpful. The moderators are professionals and are very knowledgeable in the issues you're dealing with. Take a look, it's a very active forum.
Here's a list of threads that may be of interest to you.
Only registered and activated users can see links., Click Here To Register...

Only registered and activated users can see links., Click Here To Register...

Keeping you in my thoughts and sending caring strength your way.

Joan

[SuzE-Q]

Such great information and suggestions already!

I'm also with Peg in thinking there may be an Option C, or even D or E available. I suspect if you advised the doctors of your concerns with Option A and that you were considering your Option B, there may be some alternatives available that they didn't think to bring up yet.

As others have said, Option B is always available even if you try another alternative first.

I know it must feel like too much to deal with, but just think back to such a short time ago how utterly happy you were to have had a second lease on life! Once you get over your initial feelings of this news, you may feel that you aren't quite ready to check out just yet. You are stronger than most and maybe even stronger than YOU think you are!

Please think on it, let the initial emotions settle.

I support whatever you feel is best for you. I'm so sorry you've received such difficult news on the status of your wound.

[Jeanie Z]

:) (((((Cat Dancer))))) Jeanie :)

[Virginia]

I wonder where Cat is this morning - hospital maybe?

[SalpalSally]

t

I wonder where Cat is this morning - hospital maybe?

Wondering too. Report in when you are up to it CaT.