Saw the surgeon today

It went quite well. My parents were there. The surgeon was pretty nice and spent a long time talking to us. I managed to cover off most of my fears and worries, although I left out global apocalypse leading to a shortage of ostomy supplies <_<. I really am such a worrywart. The surgeon half-jokingly suggested I find something other than Crohn's to worry about, and it makes sense. It's like my brain can't let go of being ill, fatigued, and in pain. I have to say, it doesn't help that I am not exactly buzzing with energy at the moment, but I think that is due to a combination of things: lack of sleep, low mood, oxycodone, etc. I'm really going to try to kick that $***, as per the surgeon's suggestion. She correctly identified my fear in coming off it.

One thing I was disapppointed, but not hugely surprised, to learn was that an ileorectal connection is probably not feasible. Apparently I have a diseased rectum after all: thought that was the one disease-free area of my bowel.... :-/ The surgeon didn't rule it out absolutely, but she strongly advised that I don't think of the ileostomy as temporary.

Talked a bit about the stoma and coming to terms with it. I had to laugh a bit (inwardly) when the surgeon mentioned something about it being time to reclaim my femininity: those who know me know that I am the least feminine female in existence <_<. I always wanted to be a guy to be honest. But still.... maybe it is time to consider wearing a skirt or dress for literally the first time in about 15 years...

Anyway, apparently I have done really well, at least physically. I know I have been quite lucky on that front and appreciate it. I went through a very low patch where I couldn't stop thinking about the operation and tormenting myself with wishing it could have been different. Talking to the surgeon did help to remind me why I had the op in the first place: I had severe colitis (as well as a stricture in the terminal ileum). The only way I could have any semblance of a normal life was on high doses of Pred :/ Other times, during acute flare-ups, I'd be lying on the bathroom floor, wracked in agony, longing for surgery to end the pain.

I honestly never, ever thought I would end up with a permanent ileostomy. And it has been hard for me to accept: oddly enough, it has been the hardest of all in the last two weeks, but I suspect that was reality finally coming home to roost. Hopefully I will come fully to terms with having a bag for life and get my full health and energy back.

I will be seeing the surgeon again in a few months' time. Kinda glad about that, as I do really like her and felt a tad sad at the prospect of never seeing her again. Anyway, I feel a bit cheerier now. Hopefully the dark clouds have finally buggered off and decided to rain elsewhere - preferably not over somebody else.

Thanks, Pluot!

It probably sounds weird, but I have even found myself getting a bit upset over the prospect of no more hospital stays - no matter that there hasn't been a hospital stay where I wasn't practically jumping out of my skin with eagerness to leave hospital! <_<. So, yes, I definitely need to let go of the 'sick' identity and find a new one for myself.

I laughed as I haven't worn a skirt in decades either, no femininity for me to reclaim either (and I don't like many of the special female ostomy underwear just because they have lace on them -- it itches, don't like it).

I also think about various apocalyptic scenarios where there are no more ostomy supplies. Honestly, I would likely be one of the ones to die earlier rather than later -- mostly I just accept that, because in a whole lot of times and places I'd be dead already.... so easy to fantasize being the strong one who survives, and I might have been that many years ago, but so it is.... and the reality is that now I have my health and good supplies, so it's not something to think about much.

I have found it disorienting to be well again, though. I liken it to moving to a new city..... it can be very exciting, but it's sometimes confusing and you don't know your way around that well. My gi moved to another hospital, and I hate seeing him there, just miss the receptionist and nurses I knew, and I'm not going to get to know the new ones going there every six months. I know this is good, but I think of it as one of the perks of a chronic illness that you get to have a little community with the medical people.

One issue is just having spent so much time dealing w/health issues, and just figuring out what to do instead. This is a happy problem, and once I got through some of the disorientation, the new stuff is so much better than the sick stuff that the sadness fades. Another issue is just dealing with a lot of the stupidity of everyday life where so many people have no perspective at all. And another is just finding ways to talk or not talk about what you;ve been through.... I said I was a visitor from "Planet things we don't talk about at dinner." For example, I was in a book group discussion and brought up an anecdote from my hospital stay that was completely relevant to the discussion, but also totally stopped it because it freaked people out that I'd been so sick and they couldn't just see it as one every day anecdote....had to reassure them that I was OK etc....

In any case, all perfectly normal...... it's a big deal emotionally as well as physically, and it's great that you're doing better.

Oh thank god I'm not the only one to have morbid imaginings about apocalyptic scenarios! I really must stop reading novels like The Road... >_>. In all seriousness, it is something I consider. While I don't think it is likely World War III will break out in my lifetime, a disruption of fuel supplies to the UK is a lot more likely. No fuel = no delivery of ostomy supplies. I suppose there is no point in worrying about it, but I would like to have some bags in reserve, since there is no substitute for them: I would not be able to make my own. Like blueglass though, I don't have any illusions about my survival abilities. I'd be one of the first ones to go to the wall; heck, I could barely outrun a zombie >_>.

But I will try not to worry/think about it. End of the day, in another time/place, the Crohn's would probably have killed me by now. At least I'm alive and (sort of) healthy.

One problem is that every time I start to think I'm cheering up and doing better, the black clouds come scudding back in again :-/ However, overall, bit by achingly slow bit, I do think I am getting better. One of the things now is learning to accept that my ileostomy is for life - even if I get it reversed and have an ileorectal anastomosis, it just seems an almost certainty I would end up back with an ileostomy. That certainly seemed to be the surgeon's view.

Re femininity - I guess I do really look unfeminine >_>. It's not my deliberate intention to look like that; in a way, I'd rather look 'prettier'. But I don't know how to. My hair resembles an overgrown, wild, tangled bush when it's even the slightest bit long: it does not lie meekly and obligingly flat. Likewise, don't really know how to put on make-up, dress up, etc. A large part of it is down to laziness: I simply don't want to spend two hours every morning dolling myself up. Guys require so much less effort to look presentable; I envy that about them.

Re therapy - I wish I could have therapy. I don't really know how much it would help, but if I got the right person, I think it would be helpful. As it stands, the only way I could afford therapy is if I found somebody who offered reduced rates. I've given up on the NHS, there just aren't enough resources for mental health issues. Another possibility might be a local depression group... One thing I hate is talking on the phone, so phoning helplines wouldn't do much good for me.

Anyway, cheers for the input, blueglass and B'Dereh :p Edit: Sorry, CrohnieCJ, I missed your post :-/ Cheers, too :p

LOL at this thread, I've thought about an apocalyptic scenario too :) My brother uses an insulin pump and we joke about how we'd both be screwed (along the same lines, we both have an instinct toward stockpiling supplies...)

Thanks, folks :p

Depressed today... :-/

Tired myself out with a few long replies elsewhere, plus another moaning thread on this forum, but I have read your replies and appreciated them. I don't think I have been guided at all well with tapering off pain medication, but that's another issue. I'm just trying to get off the oxycodone and Pred entirely now.

I do intend on stockpiling supplies. Not to a ridiculous extent, but I'd like at least few months' worth of supplies in reserve.