I feel like I hate the stoma

NCOT- I'm so sorry to hear that your Ostomy is permanent. I previously read that you didn't want to hear from people that were reversed but, sometimes in this situation I think the best thing to hear, at least for me, this sucks ass!!
I didn't suffer from UC or chron's disease but I do suffer from severe endometrosis that has invaded my colon, I can no longer get pregnant and I will have a hysterectomy before the age of 25. I'm angry that this is the hand I was dealt and I gater you feel the same.

I wish the doctor's could figure something out for you. But you're not wrong to be upset. My stoma, like many people on here including you, saved my life, and as much as I hated that thing, i felt better off than tje alternative. This forum gave me strength, and I've made a wonderful friend on here that means so much to me, and we've never met. The people that "love" their ostomies love that they're alive and healthy for the most part. I can't speak for everyone but this forum is a family of sorts, Ostomy for life or short term we're all trying to make it out of this alive.
Thinking about you and hoping things get better.

Woah. 28 new replies. That's UC board levels of busyness!

Okay, I've read them all now. Got to be off soon (to see the stoma nurse, ironically enough -_-), so I'm going to have to slightly rush my reply.

1) I was just expressing how I felt. I wasn't implying everyone else is lying about their feelings and I'm the only one telling it like it is. Truthfully, I don't think that.

2) I do think depression is making everything seem a million miles worse. But what comes first, the depression or the physical problems? My skin is driving me up the wall. (Have talked about that elsewhere, so won't go into it here.) I could never ever have predicted these problems before surgery and have no confidence in finding a doctor who can tell me what's going on or when or if it will ever go away.

3) I am lashing out unfairly at the stoma as a result.

4) But it (the stoma) still pisses me off. Several people said they'd rather have an ostomy than be in dude's situation. That's absolutely fine and dandy, but I'm pretty sure I'd rather be in dude's position than have an ostomy.

5) Better go... >.>

PS: esoR, I tried adhesive powder, never got on with it - just made the bag even more insecure, as I nearly found out in a highly public way. I am truly sorry you cannot enjoy solid foods for now. I do eat solid food, but I don't really want to. Maybe this is another symptom of depression, but I don't want to eat anymore - have little appetite. I hope one day you can enjoy solid food again.

To everyone else, thank you. I was a bit scared when I saw 28 new replies that you'd be attacking me, so I'm quite pleased it wasn't that. Okay, I'd really better go... >.>

"To everyone else, thank you. I was a bit scared when I saw 28 new replies that you'd be attacking me, so I'm quite pleased it wasn't that. Okay, I'd really better go... >.>"

Don't worry NCOT, I got them rilled up with 1 sentence. I took the brunt load. lol I knew I was going in hot and raised shields.

"I feel like I have to weigh in also- I agree with Somedude, in that wearing a diaper isn't necessarily the worse thing in the world. Sure, one gets used to things that most ppl. would consider abnormal, but.... AS you all know, I've been pondering an ileo for 2-3 years now! And a huge part of what's holding me back is the nagging feeling that I'd only be trading one set or problems for another. My usual issues of urgency, occasional accidents, limiting early AM activities, & occasional Immodium use are manageable for me at this point. If I did undergo surgery, I'd be facing possible skin irritations, possible leakages, being wary of blockages, a somewhat strict diet, & still using Immodium on occasion, & adding extra hygiene time into my AM routine- which I do now due to extra bathroom trips. So for me, where's the positive? I'm not "sick". I just poop a lot, & at totally unexpected moments! And sure, the ileo problems are "possible", but in reality, I belive they are probable. It's a very tough decision, & one that I think is only made when it's absolutely necessary. "

And I agree with what you said. You pretty much echo what I think. I dunno, hard choices man. Suebear, ByeByeUc do great. If only I had that kind of guarantee. And before someone throws up the "there are no guarantees in life" ...of course there is, in many cases.

I sure don't want to end up like Esor, or like Ironmom dealing with their issues. Or having my pouch fail like ddd and be forced to get a perm bag. Or get unexplained issues like extremmisery.

It's tough man, it's tough. I don't know what the right answer is. My GI basically told me "Do what you want", If you want meds, I give you meds, if you wanna go surgery, you have the green light.

Then I go see the surgeon and he ain't painting a pretty picture of it either. You'd think he'd try to sell you on it to at least give you hope. He basically told me he does many per day, most of his patients are happy, some not so. You never know the outcome how your body reacts. The second consultation, the surgeon told me to keep trying other stuff lol.

I think they feel im not ready and instead of pushing me through it, they try to disway you lol.

Happy to chime in here esp. with somedude actively looking for my view as a frsh newbie. I am going through the adjustment phase of a gut traumatized by surgery- eg just had a few days of all liquid output after my second hospital dismissal, but I am noticing already a two steps forward one step back trend- and it's just 2 weeks since my surgery.

Somedude- NCOT clearly has extremely serious, chronic depression issues completely independent of the surgery. Surgery is a major psychological trauma and not just physical, but I think that unless you are suffering from major depression now, you'd best not make judgements about coping with a life change such as an ostomy- or jpouch- on the basis of the reactions sof someone who is. I went into my surgery as an optimistic, upbeat person and have not found the ostomy to have much impact whatsoever on my self image, sense of optimism about the future, or perceived ability to manage this as a relatively minor incovenience in a very active life. I still do not totally rule out doing a jpouch- I am now (following colectomy biopsies) considered 100% UC and am told I am no higher risk for pouch failure or pouchitis than anyone else- but my strong personal instinct right now given with how easy "the bag" is to manage is to not bother with the uncertainty of a jpouch. I also 100% understand why some just have to go for it. For me the risk of having urgency with a jpouch, or butt burn, and suffering through more surgeries- isnt worth it for me. I am very surprised at how the pouch is essentially invisible. With my stoma position, the major compromise iI will need to make (remember my obsession re. Beltline) is that I will need a stoma protector to allow the beltline to sit either right on, just below, or just above the stoma- no biggie though as I like the added benefit that a protector gives for sports, lifting heavy objects etc that couldt otherwise result in impact injury to the stoma.

Anyway, I am still at the very new stage but I have not yet had a single leak or near leak. Well, i had a leak in the surgery recovery room because the setup the put on in surgery was absolutely pathetic and whoever attached it made no effort to ensure a seal. Since then even 4 days of wear have been rock solid even after 1-2 showers a day.

For me the biggest downer of all is not that I now have a bag- like I say, I am almost shocked at how relaxed I was seeing the stoma and bag- I think reading these forums for months has inoculated me into feeling I already had one lol- rather it is the generic effect of major surgery in preventing me- for a couple months or so- from hitting the gym everyday, playing tennis, bike riding etc as I was just before surgery. But I know that time will slip by quickly enough and I am trying to catch up on other stuff that I never seemed to have the time for, as well as mark new milestones each day on walking- eg today a big round of a few blocks I think.

Oh, PS to somedude- onky you can know if you really want surgery. To be honest, I was hemming and hawing to the last second and half exoected that I would not be ale to sign the consent forms. The photos and biopsies of the colon gave me some piece of mind afterwards, almg with the fact that I had tried ALMOST everything under the sun (biologics, imuran, LDN, fecal therapy, multiple types of worm therapy, DMSO, radical diets, acupuncture and herbs, NAeT, you name it) and still was found to have active mild to moderate pancolitis on every endoscopy.... It was a huge energy drain essentially suffering frm 365/24/7 sunburn. I think if you ever get to thinking that surgery will be inevitable than your mindset changes. That happened to me enough to tilt the balance. Like suebear noted when she decided on surgery, I have noticed that too many vacation plans, or just day trips, planned recreation, and odd jobs around the house I keep putting off, are shelved or delayed because of flares, mini-flares, or just excess simmering. It became a farce to me, even though much if the time (unlike many on this forum) I felt great. I was low dose pred dependent to avoid being cnstantly in a flare, but even the low loses wouldnt prevent big flares here and there which , though I almost always knocked them out with heavier pred doses, took their toll. I was anti-surgery enough that if I could have stayed flare free on say 5 mg pred for life, I would have been content to risk that... Alas like I say, that wasnt enough, and I am now tapering through 2 mg and will soon be off that stuff for life most likely, good riddance.

Post Edited (Probiotic) : 5/16/2013 10:30:35 AM (GMT-6)

Lol just added some more meandering in an edit. I know exactly how you feel. Not saying you ever need to decide on surgery, but As you know frm my years kf posts, I have walked myself back frm the brink for over 5 years now, and am not regretting the plunge. Like i say, "the bag" somehow doesnt upset me at all per se, at this time. Who knows, maybe I will get a delayed mourning, but no sign yet.

Oh, somedude- I have yet to eat marshmallows before changing a bag. I just managed to change the bag even while it decided to outputlike crazy, lol. Just requires putting a fresh tissue on too every ten or twenty seconds- but i really ought a time the change for before I eat breakfast. Right now, frsh out of surgery, I am still eating 8 mini meals a day though so the's always a little spurt of output 2 hours or so after I eat anything as well as right when I have eaten something. As far as powders etc I have yet to touch one. I am brand new to this but the 2x per week bag change is taking me about 10 minutes total including the cleaning with a wet paper towel.

Post Edited (Probiotic) : 5/16/2013 10:42:28 AM (GMT-6)

NCOT clearly has extremely serious, chronic depression issues completely independent of the surgery.

This from the guy who was asking a zillion questions before surgery! Do you want me to self-diagnose you as a raging neurotic on the basis of your internet posts?

Sorry, you do not know me at all. You do not know my situation. This comment has pissed me off more than any other single comment in this thread.

PS: Reactions to surgery are literally meaningless at first. I too felt fine the first couple of weeks after surgery, to the point everybody in hospital seemed impressed by how well I was doing. But years of Crohn's disease, toxic meds and open (not the easier laparoscopic) abdominal surgery took their toll on me. I'm not remotely ****ing surprised I'm depressed after all I have been through.

But at least being pissed off is a good sign. For me. I'm mother****ing determined to get through this.

I've always been prone to depression, that much is true. On the other hand, most people I've known with depression issues have had what I consider good reasons for being that way. I regard depression much like Crohn's in fact: there is a genetic propensity towards depression in some people, but environmental triggers are needed to bring it out. And quite bloody frankly, I think I have had a lot to be depressed about over the last few years, last two in particular.

Okay, it's dinner now, gotta go. Back later... -_-

Pluot said...
NCOT you've posted here on several occasions that you wish you had been left to die rather than having an ostomy. If that isn't major depression I don't know what is.

What?

Would I rather have not had an ileostomy? Yes, you bet your life (sorry). But please find me an example of where I said I would rather die than have an ostomy.

Yeah, you're right, dude.

If I could take a time machine back in time, I'd go back to being 16 years old and try not to screw up my life this time. But that's another story. In retrospect, I actually should have had an operation about two years ago. I think I nearly did, but the timing was rather unfortunate. I was hospitalised after starting Remicade a month earlier. Apparently during that time the surgeons wanted to operate then, but the GIs argued for giving Remicade more time to work.

A few months after that, at the beginning of 2012, I was back in hospital with another flare-up. Told my GI that I'd had enough of this, I wanted surgery. He told me in no uncertain terms exactly what type of surgery that would involve, and he was right: the colorectal surgeon said exactly the same thing a couple of months later =/ I could not have a reconnection without a massive risk (50% was the stat given) of an anastomostic leak.

Stuck it out for another year on Pred, but every time I tried to get off the stuff I'd end up back in hospital. Talk about a double-edged sword. It probably would have been better if I hadn't responded to Pred, since that basically would have forced an operation back in 2011, and I'd hopefully have come to terms with it by now.

Bleurgh. Sorry for the story. Anyway, upshot was even though I chose to have the operation, I kind of had to have it really. I am glad to be off the toxic drugs and I won't go back on any of them if I can avoid it. Hopefully in time I will even be grateful for having an ostomy, but I don't think I'm quite there yet...

I had Crohn's in the terminal ileum as well as the colon. I won't find an NHS surgeon who'd touch a j-pouch with a bargepole, a year or 10 years from now =/

The *only* hope I have left now for a reconnection is an ileorectal one - basically joining the ileum to the rectum. Even that is a fairly faint hope, but I'm seeing the surgeon again in July and will ask her about it.