Saw my stoma nurse yesterday...

Your feelings are valid; and I empathize with you.

Have you ever tried to meet another ostomate in person? I only mention this as what helped me to accept my new norm was befriending a group of jpouchers. We met face to face 12 years ago and I often feel closer to them than to my own family. We share our difficulties; our fears, our regrets, and our accomplishes. It's been a lifesaver.

Sue

NCOT I have been thinking about you the past few days as I haven't seen you on the board lately! I was hoping that you would write in soon.

I am so sorry to hear that you are in such a bad place, and I totally understand how you would have those thoughts.

Do you have Skype or Facetime? I have both and would love to chat "live" with you any time that works for you. Sometimes it does help to have that more personal contact, and because you live so far from me (I'm in Toronto, Canada) it would make me very happy to video chat with you.

Hugs to you, my friend.

NCOT, your post reminded me of something my visiting nurse once told me. He had a patient who he literally had to visit twice a week every week because she refused to change her own appliance. Ever. She was completely capable of it, but she was in such psychological distress about her ostomy that she wouldn't do it. I guess all I'm saying is that you should be congratulated for dealing as well as you have because there really are LOTS of people who are way less comfortable and capable. You really have come a long way in a year even if you don't feel like it right now.

NiceCupOfTea said...
@Pluot - Hmm. That in turn reminds me of reading about a wife who changed her husband's bag, because he would refuse to do it.

Wow. That is serious. They should replace the entire wedding vow with that: "Do you vow to change your husband's ostomy bag if he doesn't want to?"

@Pluot - I think my answer might be a 'no' to that one... :-/

@ActiveUCer - Yeah, I am >_>.

Hugs NCOT. When I went for pre-op before my colon surgery, the ostomy nurses I met told me about a support group. Maybe you need some in-person support. I think you'd benefit from some personal TLC too.
Reading your posts filled me with sadness. This is probably how I would have sounded if my stoma had been permanent. I feel your pain.

I haven't been checking in as much lately, but I saw this and had to respond ... NCOT, just know that so many people here do care about you and about how you're feeling. Being sick sucks, there's just no two ways around it. And some people were dealt a lousier hand than others .... as it seems to be with you. I know I am blessed - and actually, my husband did change my bag for me. I had a broken arm when I had my colectemy, so he did it out of necessity at first, then just because he was better at it than I was! I am lucky - we met when I was 14, started dating when I was 18, got married when I was 26, and I'm 42 now ... I got a gem in him for sure! But I digress ...

NCOT, if coming here and venting helps you at all, then keep it up. We all do care about you, and just wish we could help. I know there's really nothing I can offer in the way of suggestions that you haven't already heard, and probably from me too over the past year ;) But I will offer up a virtual hug. Hang in there my dear ... they say what doesn't kill us makes us stronger ... here's hoping you eventually find that strength that I know is there.

Hi NCOT, we exchanged some thoughts in the past and recently, I read your stuff and continue to admire your thought process; even the “Devil’s Advocate” stuff. Your writings set the stage for empathy, sympathy, compassion, contradiction and all the things that promote healthy interaction among all these wonderful folks you encouraged to reply. There’s so much to reply to but I’ll just address the last paragraph of your opening post. You don’t like your stoma and neither do we but most of us are way better off with them than we were before. Doesn’t mean we like them but we like our lives more than before. You feel guilty and maybe it’s a contagion from you Mom’s Catholicism. I’m one of those and used to be guilty of everything I did or allowed to be done. I had a conversation with God once (or I just dreamed I did) and He told me I should not be guilty of anything except those things I deliberately did to hurt myself or others in any way. “After all”, He said, “You’re only human.” When I questioned Him about fairness He said I needed to see the big picture and that’s just too difficult for most of us mere mortals. Regrets? We all have them and, hopefully, they’re painful lessons and won’t be repeated. Punishment? I don’t believe in a punitive God even though I wish He’d kick the crap out of some real jerks I’ve encountered.
You’re going through what you’re going through for a reason and we’ll probably never know what that reason is. Maybe it’s for others to learn from. Maybe it’s for you and others to feel things we haven’t felt before and cause us to approach situations differently. Who knows? If we spend too much time looking for the reason we’ll never make things better.
Bottom line is there is nothing senseless about your existence. You also know everyone who replies to you cares. You are one of the brightest contributors to this forum and I thank you for helping me think a little deeper and a little differently.
Sincerely,
Mike

      I haven't been following your posts either, but, just happened to be skimming through some of them.   I take it you have gotten some psychological help through either therapists or MD's?  If not, I strongly urge you to do so.

      I have a permanent ostomy but I believe I am much older than you...I am now 67 and had my operation a few months before my 64th birthday.  I had the opportunity to "wrap my head" around the idea of having a permanent ostomy before seeking out my surgeon online.

     Forgive me if you have answered this in prior posts, but, was your operation done in an emergency?  Maybe you never had the chance to get used to the idea of having a permanent ostomy?  Are you still ill with disease?

      My email address is on my profile if you ever feel you would like to ask me any questions.  In the meantime...I certainly will keep you in my prayers.

Thank you guys.

Unfortunately things haven't gotten any better in the meantime. I don't know what's wrong with me anymore. I had an appointment at the stoma clinic two days ago, so I went along. Just to clarify, there are two stoma nurses, but I've been seeing the same one for about a year, I suppose; maybe a bit less. Anyway, this time the other nurse shows up and for some reason I can't handle it. I haven't had a falling out with her, or anything like that. But I just can't bring myself to talk to her, and withdraw into a depressive silence.

Later on that day I sent an email to the other nurse, the one I have been seeing up until now. Told her to say sorry to the first nurse, and spilled out a whole load of anxieties and worries. Some were related to the stoma, eg ordering supplies: I panicked about that. She replied, saying she would try to think of a way to make the ordering easier for me. She also said that she was concerned and worried about me. Very late last night, I wrote a rather long and rambling reply, then woke up in this morning and had a total panic attack about it. I just feel dumb, powerless, and an idiot.

I didn't really mean to drag the stoma nurses into my problems. I feel bad about that now.

I don't know if it's relevant, but I'm having an assessment for autism. Had one interview done already, and felt like that didn't go too well, but the deciding one isn't until July. The stoma nurses do know about this; in fact when I told the one I normally see, she immediately said 'I'm not surprised!' :-/

I absolutely hate being the way I am. Phoning up is a nightmare; having any kind of interaction with strangers is a nightmare. I've got much worse with this in recent years and I don't know why. Anyway, that's why the ostomy supplies are freaking me out, because I can't face having a discussion with the suppliers.

This has been a very bad day, and maybe tomorrow won't be quite as bad, but, holy crap, I don't know where to go from here. I've tried seeking psychological help several times, but nothing ever really comes of it. I get several 'assessments', with long waiting times in between appointments. I got discharged from the last service, because apparently I was 'much better' now - only I'm not. I'm still with another service in a different borough that my GP referred me to, but have little hope for that.

I just don't really know where to go from here. I almost want the autism diagnosis just because it might lead to more resources and help. As it stands, I've just fallen through all the cracks over the years. Might even be worth seeking a therapist who specalises in autistic folks....

Anyway, sorry for another ramble-fest, folks.

@Pro - Is the 4th season of TWD as good as the 3rd one? I'm gonna wait until the whole series has been televised, then grab the boxset. Only way I'll be able to see it, as I don't have cable or satellite and Channel 5 have dropped it.

@Christine - Nah, it was an elective operation, but it still came as a shock to me in some ways. I'd had severe Crohn's pancolitis for years, but I never realised I might one day need a colectomy for it. No doctor ever raised the subject of surgery with me. Even my current GI never brought it up. The first time I was hospitalised, I spoke for 5 seconds to a surgeon (not the one who did my operation) who hinted at a right hemicolectomy. IV steroids saved the day, my colonoscopy showed I didn't have a stricture, and my IBD nurse declared I was doing well and wouldn't need surgery! Cheers all round. 3 months later was back in hospital and on more IV steroids: when I saw my GI I finally snapped and demanded surgery! He looked as serious as I've ever seen him, and told me exactly would would be involved; a colectomy with ileostomy. My disease was too extensive for a resection. I knew straight away he was right; the colorectal surgeon confirmed it a few weeks later.

It still took another year before I took the plunge. It was a weird year, full of relapses and hospitalisations but also doing well and eating heartily on steroids too. I should have had plenty of time to get used to the idea of an ostomy, but I didn't. However, the relapses were wearing on my nerves and I was starting to really worry about being on steroids so much. I finally booked surgery, but with a slightly ostrich-like attitude; I really didn't want to think about the stoma too much, or the different bags, etc.

@divo - Think a second stoma would send me over the edge >_>. But you are a good person for being so supportive to your husband.

I'm about ready to collapse. I know I've written another novel and my deepest apologies for that, folks.