Venting, trying to be positive but really...................hating my ileostomy.

Vent away and know you're not alone in your feelings. I had a really tough time with my ileo. Is this temporary or permanent?

Yes, it was rough physically and emotionally. Those loop ileostomies are very difficult to manage. From what I've read the permanent end ileostomies are a lot easier to manage. I only had the loop so I have nothing to compare it to.

Hoping you can have a successful reversal. Hang in there. {Hugs} back to you.

There is no need whatsoever to go through the elaborate ritual of disinfecting everything you touch in the bathroom, wearing gloves, etc. Your stool is no more dangerous to you now than it was before you had an ostomy -- washing your hands thoroughly after you use the bathroom and cleaning your bathroom once a week is totally adequate. The *outside* of the bag is as clean as any other part of your body, as you well know since it comes with you into the shower!

I'm not trying to play armchair psychiatrist here, and I think there are a lot of valid reasons to be frustrated with a loop ileostomy (mine was no picnic to manage either), but feeling dirty all the time and like you need to wear gloves to go to the bathroom sounds like something worth discussing with a professional.

Pluot said...
There is no need whatsoever to go through the elaborate ritual of disinfecting everything you touch in the bathroom, wearing gloves, etc. Your stool is no more dangerous to you now than it was before you had an ostomy -- washing your hands thoroughly after you use the bathroom and cleaning your bathroom once a week is totally adequate. The *outside* of the bag is as clean as any other part of your body, as you well know since it comes with you into the shower!

I'm not trying to play armchair psychiatrist here, and I think there are a lot of valid reasons to be frustrated with a loop ileostomy (mine was no picnic to manage either), but feeling dirty all the time and like you need to wear gloves to go to the bathroom sounds like something worth discussing with a professional.

Might I suggest you seek professional help to clean up your hygiene habits?

I use gloves touching my bag while emptying it. PLENTY OF PEOPLE DO.

I'm not here to be insultted. You manage your life and decide what there is a need for. Not mine.

I was VERY polite starting this thread saying "respectfully don't tell me how to feel" as some have that propensity with other people on support forums. Insulting me the way you just did because I have a different standard of hygiene, falls into that category.

I should have added, "and don't tell me what an acceptable level of hygiene is."

Do not come onto my thread and act like you're some kind of authority on what is healthy. You're not.

You are not the measure of what "adequate" hygiene is. That's much too arrogant.

What adequate is for you, is NOT adequate for a lot of us.

So don't play armchair psychiatrist with me.

I'm not here for that.

There are plenty of people like myself, and there are people like you. Your bathroom habits and lack of certain methods of hygiene, are not the measure of "what is psychologically healthy".

I have corresponded with many people that use disinfectanct wipes the way I do, AND use my type of ritual. .

As far as seeing lay people for what I consider "nonissues" and nonsense, people you call professionals and might see them for? I and many with my education and background, don't believe or subscribe to any of that. Like many that share my opinion and yes, and there are many of us that are educated professionals as well; we do not believe complete strangers with a degree in "mainstream" medicine in psychologically or psychiatry, know what is healthy for another individual.

We share the "evidence based on all counts" opinion they are in a corrupt industry rampant with collusion and conflict of interest for profit. Mainly profit from pharmaceutical companies. And they are not even aware of all the falisified information on disorders and drugs in the very industry they practice in. I know because it's what I do.

Your so called professionals are mere mortals and people like the rest of us. It's really quite simple.

No one knows what is better for me and the way for me to think, but me.

I don't put other people or institutions above me. I don't put other peoples dogma above me, and I don't buy into other people's dogma.

I don't have low self esteem, I don't question myself.

If you put others above you and seek counselling for nonsense, knock yourself out.

See a professional because I'm clean? Pedestrian at best. Which I'm not.

I am a human rights activist against psychiatry, the drugs, all of it. I've had good teachers. Learned from the best. Harvard educated Dr. Peter Breggin, world reknowned. I send people, expatients that get caught in the system you seem to revere, to attorney Micheal Mosher in Paris Texas so they can reclaim their life psychologically, seek monetary damages against their practioners by getting "undiagnosed" for the defamatory remarks that cause character assasination on paper, in order for them to reclaim their lives on paper and all the rest of it. Monetary damages are given for the side effects of the drugs they were given as well. Google the 2 I'm talking about. They are the dream team.

You have no idea, what is going on in the industry you refer to. It's industry for profit with a lot of fake disorders. It's all being proven as I type.

Not everyone on these support forums are lay. I'm not.

Don't play armchair shrink with me and tell me to see a professional because I'm a clean person.

Don't come onto my thread and tell me to see a professional simply because I have a different hygience protocol than you and people that share yours.

Post Edited (Vancouver-Girl) : 1/26/2016 9:52:02 AM (GMT-7)

SuperBlanks said...
Hi Vancouver-Girl - I'm sorry you're having such problems with coming to terms with your ostomy. And as ByeBye said - vent away, that's what this forum is here for!

I found it so much harder mentally & emotionally to deal with my ostomy, than physically. It took me a long time to accept it; even when emptying/changing/etc was part of my routine, I would still have wobbly moments where I would hate it. For me though, they became less & less as time went on. You still are new to it, so cut yourself a bit of slack & shout about it when it's angering you!

I would agree with Pluot about the bathroom routine, there is no need to be so cautious about disinfecting things - think, did you disinfect that much before you had your ostomy? Or use gloves?
Thinking back, when I first got mine I was a bit more worried about getting everything clean. I think it's such a big change because it's a more "in your face" way of going to the toilet than normal - as in, it's to the front, in the middle of your abdomen, you can see everything & you use your hands more than just wiping! I've never had a loop ileo so can't comment on that being more difficult - but from reading about it, they do seem to be. I know everyone is different but hopefully it is something that will pass as you get more used to it.

Hang in there, and always vent when you need to - it helps get it off your chest!!

Hi SuperBlanks, you've alway been kind. Thanks for coming by.

For me it's more "physical reasons" I'm frustrated with the ostomy as opposed to mental or emotional. How bout that. A north to your south. ha ha

Yeah, I'll cut myself some slack. Thanks for that.

And in answer to your question, I used gloves for things and disinfectant wipes before my ostomy. I've always disinfected and used wipes on lights fixtures, door handles, you name it. Out of valet, I wipe off steering wheel. High traffic areas. Many, many people are like this. No one I know thinks it's over the top. I have hand sanitizers in my purse. Wipes in my purse. All, before ostomy.

Disinfectant wipes and gloves are big sellers because a lot of people use them. Many woman carry hygience products in their purse. I don't touch garbage or take it out, without my gloves on.

There are SO SO many people that pick their nose, go to the bathroom and touch things I'd touch, and don't wash their hands.

Plus, I keep a clean house. I love it that way. I know a ton of people like myself.

I'm dealing with it, I was just venting.

I really appreciate you understanding and saying "everyone is different" and sharing your experience like ByeByeUC shared hers.

I believe on support forums, we have to remember, we are all individual and what is acceptable for 1 person might be unacceptable for another. That doesn't mean 1 is right, the other is wrong.

It simply means we are different.

That way we don't expect others to do things "our" way.

We're simply going to be different on some things, and different doesn't mean "wrong or less sane".

Blanketing everyone under the same umbrella of "how things should be done", is unrealistiic.

Yeah.................I'll get used to it. I'll find my way around. I'm an adult. Like I said, I just needed to vent but thankyou so much for the kind words. xox

Post Edited (Vancouver-Girl) : 1/26/2016 9:26:08 AM (GMT-7)

Tom1 said...
Nowwwwwww....Vancouver-Girl.....don't you feel a lot better? That's what we're here for!!!

Yes, as a matter of fact I do. Thankyou. xo

SuperBlanks said...
Vancouver-Girl, my asking if you used disinfectant wasn't questioning your using it - I was asking to see if it was something you always did, or if you're doing it purely because of having an ostomy now. I carry hand sanitiser when I'm out - and I get that some people would use it more or less than I do!
As I said in my post, everyone is different. I was giving my experience, in the hope of helping you in some way, even though it does differ from yours.

I do understand the need to vent, especially to people in similar positions to us. I don't know about you, but I don't know anyone in real life that has an ostomy. So as much as people close to me try to help or understand, they don't. Which can be hard.
Keep venting when needed!

Hi SuperBlanks, thankyou so much for the kind words again. And understanding. I.................had an old friend from 20 years ago contact me. Ironically she got her ileostomy that long ago. I had NO idea she had one. She sent me a photo of her bathroom box on toilet and it had disinfectant wipes on it. She uses them and has for year LOL. She gave me the idea as I was asking how to feel cleaner through this. She is the only person I know with one. Other than that, I emailed back and forth with a couple of people from support forums that gave me tips.

Oh my gosh I know you were not questioning me using what I do! You've always been super kind, you've been incredibly helpful. I mean you ask me smart questions like "did I use wipes and gloves before ostomy?" You're thought provoking. You're trying to be helpful and you are non judgmental. I appreciate you on this forum. Greatly.

And I appreciate it, I'll say it again, you acknowledge everyone is different. Thankyou for that as well. You carry hand sanitiser out too. Yeah, some do, some don't. Yes I agree as well, some people use it more and some less.

I buy little clear food gloves from China. I get 1500 for $12.99, I put 20 or so in a baggy and put in my purse. It makes me feel better to do my ritual outside my house as well as in. I'm used to it now. I put them on after I sit in a public restroom and, empty bag with my gloves on.

Like many I've always hated using public restrooms and most business owners cut corners and have taken out the toilet liner dispensers, but now I have to use public restrooms more if I'm out so I have to line the toilet with paper towel, and then do my thing.

We have adjustments to make. That's all I was venting about. Initially they can be a lot. And they're gonna be tailored to our individual comfort level.

Realistically they can be tiring, due to our practices. But we make them, and...............carry on. Like you referenced, getting used to things, (the new normal) more a bit over time.

I hope the mental emotional part of it, is...........dulled for you now. I really do. That it's minimized.

I guess that is all, like I said, I just needed to vent. :) And thankyou. xoxo

SuperBlanks said...
I found it so much harder mentally & emotionally to deal with my ostomy, than physically. It took me a long time to accept it; even when emptying/changing/etc was part of my routine, I would still have wobbly moments where I would hate it. For me though, they became less & less as time went on.

Yeah, the first sentence of that paragraph was true for me as well. Just psychologically I hated the stoma. I found endless niggles to try to shore up my hatred, but in reality I was lucky - it was a pretty easy-to-look-after stoma and it could have been much worse than it actually was.

Unlike most other people on this board though, I had my stoma for 2.5 years so I have some long-term perspective. After about a year and a half (I reckon it did take about that along in total) my hatred and distaste melted away and I found I was neutral about my stoma in a way I'd never been before. I could look at it and not mind it. That was actually quite a nice feeling in itself, tbh.

So what did I do? Had reversal surgery and created a new hell for myself. I suppose as my surgeon said though, if I hadn't tried it would have always bothered me. I'm that type.

ks1905 said...
The gloves for me lasted about 2 weeks and I gradually stopped using them.

I had both an end ileo and a loop ileo; the loops is definitely more challenging to maintain due to the faster transit times and more liquid output. I had to change my setup with the loop to a convex wafer and added a protective barrier sheet; otherwise the more liquid output would work its way under the wafer within a couple of days.

So the loop did get better overtime for me, the first month was the worst, the 2nd month got better and by the 3rd month everything had healed and the loop started to act more like the end ileo with transit times and output.

I lost a lot of weight the first 2 months but it was still much better for ME than dealing with an IBD.

If the output is too much then ask for some bowel slowing agents; that might help you empty less often.

I noticed in your original post that you said that you were Exhausted, the Loop can definitely do that to you. I knew that I couldn't keep my house clean while I was sick/recovering so I hired a cleaning service and I've kept using them ever since.

We're all ostomy-mates here, no one is trying to insult you. We've all dealt with what you are going through.

Thankyou so much for coming by. Thankyou for not insulting me and acknowledging the Loop can exhaust you. I'm only 1 month and 10 days out. It just caught up with me. :) -lil breakdown I guess. Only human.

I'll do what I do, pick myself up, dust myself off, put on my big girl pants, and move forward. I just wanted to share my frustrations and dissapointments finally. They became clear.

You hired a cleaing crew too sick to do it on your own. You just made me feel better. My mother's come to help a few times.

I'm going to see my surgeon for my first post op appt next week so will discuss with him slowing agents though...........really want to try to find a more natural remedy than the pharma due to my background. I guess we'll see.

You lost a lot of weight but better than IBD. Yes, I mean, my symptoms are gone. I'm back to 115 my usual weight. I was at 89 at 5'6" when I went to hospital.

Why did you lose so much weight AFTER surgery?

You said the first month was the worst for the loop. The 2nd month better. The 3rd, it started acting like an END with transit time and output?

You have had both end and loop so understand the differences in totality. You went to a convex wafer with loop I see. Hmmmm. I'm trying 1 = convex wafer next change though seemed to be faring well using the powder and seal protectant MIND YOU I change my appliance every 2-3 days right now which is why I want to try the convex wafer. Otherwise I do finally start to leak if I leave the flat wafer on past 3 days. My skin is healed now, after finding my way around though:) But perhaps, the convex wafer, will change that.

That's encouraging that you experienced the 3rd month output and transit acting more like end ileo. THANKYOU so much for sharing your experience.

Your gloves last 2 weeks lol. Seems I'm not alone. I think...................it will be a continuum for me now. Feel naked without them. :)

Boy you were really sick.........................how are you now? XO thankyou so much for your kind words.

VG,

I'm just going to add that a couple of hours have passed, you might want to go re-read what Pluot said, I read it (twice) and I did not find it insulting. This is a patient support forum, saying that you might need to speak with a professional shouldn't be seen as insulting, sometime people need a professional to talk to. Your routine is very time consuming and from most of our experiences not necessary but if it makes you feel better then I say to continue doing it for now. I'd also point out that you still feel dirty after doing all of that cleaning so is it really helping? Only you can answer that.

I know that Pluot talked to a professional when she had her ostomy, she said that it helped her. She is speaking from an experience that I don't have.

I always looked at my ostomy as a temporary situation, I knew what to expect because both of my grandfathers needed ostomies for colon cancer. The thing that I FOCUSED on was that the ostomy made me feel better and I was healthier which was my main goal; everything else was secondary and didn't matter that much after I adjusted to it.

Many people lose weight with Loop Ileos, it's the rapid transport/not absorbing nutrients and mine was putting out A LOT, they wouldn't let me leave the hospital for 2 weeks because it was putting out so much, up to 6 liters a day. I also to be readmitted, it was tough and I think I spent about 30 days in the hospital with my loop.

I will add that I have multiple bathrooms in my house; I used one exclusively only for emptying my pouch. I had another one for showering and brushing my teeth, etc. sometimes I was emptying my pouch hourly, so what's the point in cleaning my bathroom if I'm going to back there again in less than an hour.

NiceCupOfTea said...

Vancouver-Girl said...
I thought support forums were SAFE places to express how we felt. Individuality. Seems for some, if we don't do exactly how they do, if we value different things, we get durogatory remarks.

They are, or should be. And nobody here was having a go at you for expressing your feelings, I think. But support forums are also for getting tips and advice. Everyone is different in how they go about offering their help. Some are naturally empathetic, while others like me are more logical and find the sympathy side of things difficult - I do care, I just don't express it well in words. I always feel like I sound fake when I try to be caring... :/

All I can say is I had no intention of insulting you. I do believe though that most people do not devote as much time and energy to hygiene as you do and still feel dirty afterwards. If you're happy with your routine, then that's absolutely fine - and I mean it. It's certainly not my place to tell you how many times a day you should clean your hands, or whatever. What bothered me about your first post was when you said how you never felt clean. I think most people with ostomies have had times when they've felt yucky (just after a leak, say), but never feeling clean at all is a different kettle of fish - you can't enjoy feeling that way and you shouldn't have to. The bags contain the odour perfectly, providing they are sealed - I detected most of my leaks through smell first of all. Other than those (sometimes micro) leaks I never smelled a thing otherwise.

Incidentally I know my hygiene isn't the best, but I do have a good sense of smell. It wasn't the case that I'd got used to my own smell, 'cos I keep a nose out for things like BO, bad breath, etc. and can smell them if they occur. Just lazy about handwashing (plus too much handwashing dries out my skin to the point of cracking/bleeding, otherwise I probably would do it more).

I've lost track of this thread now. Okay, I've regained it. Re changing your style of clothing. That definitely is an understandable disappointment and I wish I could help more. All I can say is it is possible to wear tight clothing with an ileostomy. And have a six-pack. (There's a UK guy who has an ileostomy and a fearsome six-pack. I've seen him featured in ileostomy magazines and the like.)

But none of this happens overnight. Bowel surgery is pretty traumatic to the body - the bowels really don't like being severed and it takes a long time for the muscles, tissues and nerves which make up the bowel layers to heal themselves. Eventually the bowel will adapt to the ileo as though it had been there all its life, but that takes about 1-2 years in total.

I'm tired and losing track again, plus I've had nothing to eat today and it's gone 8pm (god my eating habits are bad at the moment...), so I'll finish up now.

Vancouver-Girl said...
Anyway NiceCupofTea, I'm sincerely glad you don't have a bag anymore. I just read that. That's great. It is.

Lol, thank you for your words, but I'll probably end up going back to a bag for life soon enough <_<. I'm okay with it - I think. At least I hope so. It's actually the thought of dealing with supplies for the rest of my life which puts me off the most, not the actual stoma itself. But then again, I'm hardly functional as I am either.

Hey NiceCupofTea, thanks for your kind words. I appreciate that. And the understanding. I mean that sincerely. I really do.

I don't feel clean, regardless of how much I do. BUT it's just a person expressing themself in their situation. Oh well I mean, maybe that will change over time, maybe not. It's the way it is for me right and as well, I'll deal with it.

I get personal empowerment, finding my way, my way BUT I'm human and I like to express myself as well.

I'd rather someone say "sorry you don't feel clean and I hope that changes for you" as opposed to assigning a personality deficit negative to me. It all started to feel like a bit of a gang up due to how I empty. :(

It does make me happy objectively. The way I do it is the only way, I can do it. SO thankyou again for your kind words.

I find I can't smell anything. And I use M9 drops. I just know a lot about germ transference and again, bm's, in such a way, is very new to me. In my face and a lot so to speak. :) Please don't read into that! xo Just expressing. LOL thankyou.

Your hands got like mine. Nivea is really helping me with that. I hear that.

I read about the UK guy with the six pack. I................my thing isn't the working out or problems with that, it's the bag filling and seeing it in my clothes when I'm casually out. That is it, specifically. And it is REALLY noticeable with me and my clothes so they have to be changed.

I don't know if he has that specific problem or not. That's my deal. So, if he doesn't, he'd be able to wear the same casual clothes even with his ileo. If you can see his bag fill during daily things away from working out like myself, he'd have had to change his shirt style for daily things like me. That's why I'm disappointed. But again, just expressing. Then time to move forward.

It takes that long with bowel surgery huh?Gosh, they really hate being severed. I mean to think that is the Great Barrier Reef of our body in the flora, and our immune system. I think it's patience in waiting to see how I heal over time then and THANKYOU for that validation, sincerely. The tissue and nerves the way you explained it and 1-2 years to heal. Okay then. Got it.

You might have to go back to ileo? What? Gosh, I hope you are okay with it if that's the case and I'm sorry you are not functional. I am. Sounds like you're in a complicated spot right now? I relate to what you say about supplies. I mean, these are not cheap. I don't have to pay right now but eventually probably will.

I may as well add, I wasn't offended from "a lack of sympathy stance". Others keep suggesting outwardly or mildly that I have a "problem" due to my hygiene protocol. I just found that offensive as many people are like me. BUT now the whole thread turned into that which is not why it was started.....................that's all. :(

The way I do my business, expressing being tired from my ileo yet other than a couple people, my hygiene turned into a fixation. It turned into me defending how I do things hygenically and me having to say "I'm sane, stop telling me it's over the top, even though it is over the top for you." Regardless of how many people are on 1 side of the fence and and how many are on the other. It stopped feeling supportive. Make sense?

Thankyou for coming by and I'm terribly sorry for being..................if I offended you. Thankyou. I really hope, you don't need to get another surgery though...................it's like a heavy sigh, it sounds like it is the only thing that may help?

Thinking of you,
VG

xo=thankyou for being here.

Pluot said...


........that makes me think that there might be a problem that isn't really about cleaning.

What? You think too much.

ByeByeUC got my meaning right off. Kept it light, simple, validating, pleasant and respectful. SHE was right on target where I live in this deal.

You are completely off base as I've said before.

You are talking complete nonsense reading into, twisting, embellishing my comments and now you've completey distorted the meaning.

Knowingly.

And inflaming my thread.

You're reaching and making duragatory comments based on "what you think" yet your seeing a counsellor? A problem that is not about cleaning? What?

You're over analyzing and you already know this.

Please kindly stay of my thread and don't project your emotional issues on me.

Make yourself useful to others that have obvious trauma issues like yourself, and share your need for counselling.

Go to their threads.

I don't share your angst or trauma as I've clearly said, and I'm much more educated than you and your professionals that are mainstream. I've already layed that out in a "bit of my background to you" in that first post.

Don't read into my words and push garbage on me. I'm not here for that.

Be respectful.

You're being passive aggressive pushing a system on me that I don't need or believe in merely to inflame my thread.

And you know that you're doing that. I can tell by the way you write.

You are completely aware and conscious, of being pushy and insulting.

A person that was not trying to inflame a thread would simply say "I misunderstood you. And I respect our differences."

We don't all share your sensitivities in this. I certainly don't.

So now it's time for you to stop.

Enough.

Respectfully, I'd appreciate if no one else, comes by with pack mentality for a debate on things I've said that have been completely taken out of context.

The best thing to do is lock this thread down.

A few are bent on taking me out of context, and that in itself is unhealthy. No one is here for that.

Thankyou ByeByeUC, and SuperBlanks for your good sense and understanding what I was getting at without reading into things. Thankyou both so much for keeping it light yet educational and real. Pleasant.

And thankyou so much as well, to NiceCupofTea for understanding my words were simply misunderstood after I explained myself.

I've asked a moderator to just shut this down.

Nothing good comes from distorting the words of others, and pushing ideals on others like myself that we don't need, simply to inflame threads.

No one is here for that.

Post Edited (Vancouver-Girl) : 1/27/2016 4:14:31 AM (GMT-7)