People celebrate their takedowns with such joy

I feel like I can't be "negative" about not liking having a stoma, and yet day in, day out, I watch people on this board celebrating their reversals like it was a lottery win.

I know I do it to myself by continuing to come to HW. I must be a sick sadomasochist at heart, but I feel in genuine despair at the thought of never being able to have a reversal. Obviously I'm not psychologically suitable for having a stoma, too depressed, or whatever.

We all get that you hate your stoma and are depressed about not being able to have a reversal - but those of us who did get a j- pouch have also been through a difficult journey, and the celebration is really about that - the end of a horrible illness. We also celebrated when we first got our stomas - for many, the idea of no longer being so ill, not being chained to a toilet, not wearing diapers, and being able to generally live normally was a great thing. We don't celebrate to make you feel bad - we are just glad to be at the end of our own journey.

Sorry people, I didn't refresh the page... >.> Give me a few secs to read, then I'll edit this post to respond... :-/

Edit: And now I don't really know what to say. I never thought having 2-3 surgeries in a year was easy, in fact it must be incredibly gruelling. It is basically a year out of your life. However, time is what I have in abundance at the moment. So while I would not exactly relish the thought of another surgery, I would do whatever I had to do to reverse my stoma.

I just don't like having a stoma. I didn't like having Crohn's either, but to me this is a horribly high price to pay for a remission (especially a remission which may only be temporary). I just find the whole thing of having a stoma all a bit humiliating and stressful; I feel more incontinent now than I ever did with Crohn's. Not to romanticise the Crohn's, I had many bad times with that. But I was usually continent and able to keep my stools in. I'm far, far more worried about accidents now, and this is actually a relatively novel feeling for me.

Post Edited (NiceCupOfTea) : 10/5/2013 1:26:28 PM (GMT-6)

NCOT -- can you just accept then that you made a big mistake, one that you have to live with for the rest of your life? Maybe work on grieving that and forgiving yourself. You made what you thought was the best decision with the available evidence, and maybe you were wrong for you. But you know, people are wrong sometimes, that's just human.... Other people feel good about their decisions, but that's them, not you.

My biggest regret with surgery and such was that I spent so much time denying how bad my illness was and pushing through. In many ways, I was very mean to myself, and I know that made me sicker. I sometimes see the stoma as a scar from those days ... .and at some level, that might not be accurate at all in a wider picture; there are people who are very nice to themselves but still end up with stomas.... but for me, it often fits emotionally, and then I just am grateful for another chance to do better by myself, and I do now -- I prioritize many things about taking care of my body in a way I didn't do before, with no guilt or apologies.

The last paragraph might not be at all relevant to you literally, but the idea is to find a way to make meaning of YOUR experience, for you -- to know how having a stoma fits into the story of the life of NCOT. Right now it seems like what you do is use other people's joy to feel bad about yourself and about them.... this is a recipe for leaving you alone. Even if the stoma is the biggest mistake of your life, you can still live with it and move on (let's face it -- for some folks, the biggest mistake of their lives leaves them dead..... this one didn't for you)

NCOT- I think it is clear- indeed it is even ok to admit to yourself- that a big chunk of your own unhappiness stems from seeing others on this message board happy with their outcomes and decisions, making you wonder "why no such gift for me?" I must be one of those who makes you resentful too, even though I cheerfully opted and opt not to have a jpouch- in my case I hinestly, truly feel like my ostomy has guven me back all of my quality of life- not 90% or 95% but 100%- because the minor technicalities such as my spending about 5 total minutes preparing for and changing my pouch every 5 days say- are so trivial. As an ostomate by choice, though, I second however what recent takedowners have posted, saying that the joy is not so much at their not having a bag/external pouch (though the loop ileo of two steppers does seem a nightmare from what is posted) as it is finishing their recovery road.

I know that what hurts for you is perhaps that you never had a choice (though an IRA might one day be an option for you, from what you have said)... that is well and good, but I saw that you had made a lot - tons really- of progress psychologically after you started to see that therapist- it was apparent in your posts for a couple months. It is perfectly normal to have ups and downs even after starting such therapy, but are you discussing your latest downs with your therapist? I was delighted to see you start to get and about and do things and feel more at peace- I know you can have that again!

For me, as I said, I am unbelievably surprised at just how much my QOL is now like it was pre-UC with a colon. The one psychological issue I have has nothing to do with my ostomy- rather, it is that I feel a bit like I just came out of prison after spending 15 years behind bars. I am trying my best now to let go of regrets as to why I wasted all those years "fighting" and not living, and making plans to make up for lost time in my remaining time in the sun. I truly hooe you get that sun- so many of us here are rooting for you- whine (whing?) all you like though, it's all good!

Post Edited (Probiotic) : 10/7/2013 7:21:16 AM (GMT-6)

I read your post yesterday, NCOT, and it took me a day to figure out how to respond. I almost didn't, because many of my sentiments were expressed very articulately by those who went before me.

I am in the "can't wait for my takedown" camp, monumentally grateful that that option was open to me. When I was considering surgery, my greatest fear was that I would wind up like you, with a permanent ostomy. And, I must say, that is a possibility for all of us, J-pouch or no. If something goes wrong down the line with my pouch, I will have to revert to a permanent ileostomy.

I have a love-hate relationship with my ostomy. I first had surgery 11 months ago, and it delivered me from 4 years of constant severe illness, treatments with heinous and debilitating side effects, living with despair, my life on hold while I wallowed in pain. Yes, the ostomy sucked. Then, and now, I have a severe problem with self-consciousness. My sex life has disappeared. I have had to modify my wardrobe entirely. I am constantly conscious of what I eat and how much fluid I have to ingest to ward off dehydration. I only work part-time because I don't have the energy to work full-time and also enjoy my life.

No, I am not depressed. I am waiting for my takedown, and I guess the one disadvantage to universal health care, which I enjoy in Canada, is that I have to wait my turn, and unfortunately I'm waiting a little longer than I would like. So, as others have mentioned, I don't make plans too far in advance because I know at any time I could get the call, my surgery is scheduled. Right now I live with dread that it will happen over Christmas, and I'll be stuck in hospital during the holidays.

So, I guess that makes me someone you feel you can envy, because eventually I will not have a stoma any more. And I don't want to offer you any platitudes. You sound like you're beyond that. But, I do want to say a couple of things that I hope you will take to heart.

First, you must find health care professionals who will fit with your needs. That is crucial, and a lesson it took me a while to learn. Now, I have a GP and a stoma nurse who are absolutely tuned in to what I need, and available to help me get it. You need to communicate with these people. That is the only way they can help you. You need to be clear about what is bothering you, which I know isn't always easy.

Second, you must own your melancholy. It's OKAY to be sad, and it's OKAY to feel negative. If you can manage to find SOMEthing to feel positive about, that is terrific, but I understand it can be very hard. I would like to suggest the book "Half Empty" by David Rakoff. Rakoff was a wonderful writer who died last year from cancer. His book is all about how poisonous that relentless positivity can be to someone who is chronically ill. Which, of course, you no longer are! That alone can be something you can be grateful for.

I do understand what it's like to wonder if you made the right decision, having the surgery. Even after all those accidents, all the cancelled plans, all the humiliations and mortifications I went through with UC, I STILL questioned my decision, once I had to face the reality of the ostomy. My own saving grace has been the knowledge that, for me, it is not necessarily permanent. That is cold comfort for you, I know, but there must be something, something that turned around for you, that made it worthwhile.

Sorry for the long rant. I hope you can find something useful in it.

Thanks folks. I read all your replies with interest, but I'm struggling with what to say. My brain is churning around somewhat fruitlessly, but the thoughts are not rearranging themselves into anything very coherent.

*scraps post*

Sorry guys, I'm just waffling and not saying anything of worth or interest. If I'm up to it, I'll reply again tomorrow...

NCOT,

It's really easy to get trapped in a cycle of looking back and wanting to have both your colon and your Crohn's. I think you are stuck in a vicious cycle and on top of your depression and anger, have a bit of PTSD too. Perhaps it's time to switch therapists? I learned that if I didn't connect with one, I would never reap the benefit.

Sue

Just want to second those book recommendations. Someone gave me How to Be Sick after surgery and I found it quite helpful during my months of bed rest... and the Kabat-Zinn book is one I know from way back (he has some recorded meditations that are good too).

I also like the books by Rachel Naomi Remen, which were also given to me as presents -- Kitchen Table Wisdom and My Grandfather's Blessing. She is a doctor who has Crohn's and had an ileostomy when she was young, now she works with both doctors and patients on a concept of healing that goes way beyond doing a surgery. One thing nice about these books is that they are full of very short vignettes .... good to read when you are sick/depressed and not necessarily focusing so well.... here's her site: http://www.rachelremen.com/books/.

Post Edited (blueglass) : 10/9/2013 5:17:03 PM (GMT-6)

Agree completely about most self-help books being aimed at the unhappy well..... don't think any of these on the list qualify, but they probably all are a bit zen.... the woman who wrote "How to be Sick," had a sudden onset strange disease that has left her with mobility issues and so little energy that she's been unable to get out of bed for more than a few minutes each day -- for years. She lost her career, lot of friends, etc. But she's making a life that way..... she is a Buddhist, so that's part of things for her, but it's aimed more broadly, and in any case, she's not some clueless happy person saying just do what I did to be like me.

Wanted to follow up on your flip comment about wanting "something you can punch." What about taking that literally and trying a martial art or boxing? Could be an acceptable way to channel some anger and also get in your body in a way that might make you feel a bit better.

If the therapist doesn't feel helpful move on.... you have to have someone you can connect with, not something that just feels like dispensing exercises that you can fail or succeed at.... but do tell him why you're feeling it's all a waste of time, that could lead to something more real...

I felt guilty for a long time about being happy for my takedown, or at least expressing that happiness here. I stayed away for a long time because of it. I've finally come to the conclusion that it's just as ok for me to be happy as it is for someone else to be happy, angry, depressed, whatever. I haven't done anything wrong in having a different outcome than others. It is unfair to feel like I have to hold back telling my story because it might not end the same way as the story of the person reading it. I'm sorry but, that has been on my chest for a long time. I guess it's my way of saying that others celebrating their outcome has to be ok just as much as someone voicing their anger or confusion is looked upon here as being acceptable.

If your therapist isn't working, get another. You owe it to yourself to keep looking until you find someone who can help you. I ended up needing to go on meds to get out of my depression and it took a lot of time to recognize that I basically had something akin to PTSD from all the hell I had to walk through to get to where I am today. I'm not even going to try to explain how low I was but, let's just say I probably wouldn't be here today if I hadn't sought out help.

You didn't have a choice about getting Crohn's. You don't have a choice about being depressed. You do have a choice when it comes to fighting back against the depression and seeking out every available resource to help you do just that.

I am one of the "crazy" ones too who chooses not to go for jpouch ("not that there's anything wrong with that", to use the Seinfeld quote)- celebrating my ileo with the same joyful gusto as the takedowners. I cannot get over how close my lifestyle and quality is to life pre-UC- except it is in some ways better because, after years and years of living with UC, I no longer sweat the small stuff that normies tend to sweat and which Ibuess I would still sweat too if I didnt know how much worse things could be. I basically live carefree now, as far as daily physiology goes, and am full bore working out at the gym, playing tennis, biking, and travelling with zero issues and zero pain. If I had any issues at all I supoose I'd be considering either a jpouch or BCIR, but I have zero issues, so if it ain't broke, dnt fix it- that's my view.

NCOT, I went back and tried to find a post prior to your surgery that explained what your symptoms were and how badly you were suffering.  I found one that sounded like you were in a great deal of pain and the drugs you had tried were not working.  You keep saying you "chose" surgery, but it appears you were at a time when there were no real choices left.   I would hope a surgeon would never perform such a life-altering surgery on a whim.

I don't normally post to your threads, but I do read every one of them.  There just simply is nothing I can say to "help" you.  You get tons and tons and tons of GOOD advice from many other most caring individuals on this board.  

However, I will say this.   I wholeheartedly believe that even if you were given that reversal, that you so desire, you would still be unhappy and now be having non-acceptance issues with it.   Reversal is not PERFECT and I would hope anyone with a reversal would tell you that.   I don't say this to be mean, I just wonder if you have ever considered that you might also find fault with all that comes with a reversal.