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Still hating the stoma, part 2

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Posted 6/18/2013 6:44 AM (GMT -7)
Come now, did you really think I was actually going to stop whinging? <_<

Things I hate about it, in no particular order:

1) Taking the bag off and seeing all the yucky output over it
2) Not being able to sleep through the night without needing to empty the stupid bag 2-3x
3) Itching under the wafer - so, so annoying
4) Not being able to sleep on my stomach anymore
5) I still feel like I've been run over by a bus
6) Crohn's can come back; I'm not free of disease
7) And above all, I'm stuck with this hideous, incontinent object on my stomach for life

Part 3 will be out in the cinemas next month, folks... >_>

On the plus side, my stoma nurses are both lovely people. And I am finally off all those toxic meds.
Posted 6/18/2013 7:32 AM (GMT -7)
1) Reality of this thing
2) Maybe it will get better
3) Could do something about it, who knows.
4) Maybe you can one day.
5) Maybe will get better
6) There's a chance
7) Reality of this thing.

Always like your frank, this is how it is statements. Keep on keeping on, and f... the haters.

Much ♥
Posted 6/18/2013 7:35 AM (GMT -7)
All the things you mention and things that worry me. I think if I had a stoma, I would hate it too. Simply getting up in the night is enough to make me hate it.
Posted 6/18/2013 9:18 AM (GMT -7)
First off, I am with somedude in really kind of enjoying your neverending rants now NCoT :) really,though I truly, *truly* wish things would get better for you in every respect. It's not my business to say why you have more trouble adapting psychologically- it could be all physical/technical bad luck on your part and so I am not going to judge that at all. To reLly to your individual points, for what it's worth:

1) I agree with you all the way that when I remove the bag and see all the gunk that pancakes around or sometimes all over the stoma (when my stool is thick and I have been sleeping all night with plenty of output from late meals or snacks) it is gross looking indeed. I wish there were little internal windshield wipers or soemthing to shovel it all down away from there lol. No biggie though to me other than making me chuckle.

2) I have no prob sleeping the night (except that I normally need to pee once) if I eat an early dinner and dont have late night snacks... If I gorge late at night before bedtime I would be up 2x or so like you mention, if I eat mid evening I will usually be up once. However, I like to drink amply in the evening and evenin bed a bit as i like to be well hydrated, and find that I have to pee once or twice on any night (more, much more, if I have a cold or someing where I deliberately hydrate like crazy) so I dont find there is ever any net interruption to my sleep.

3) I have some itching here and there from mild skin irritation but stoma powder does do wonders- I am still getting the hang if the routine with powder, skin prep etc but it is very quick and easy in principle and only needs t be done while there is actual irritation; if the irritation persists one can look into changing the product you use

4) I am lucky in that I am a sleep on my back guy, with occasional shifts to the side- was never a stomach sleeper and I truly sympathize. My uncle is a stomach sleeper and had a temporary colostomy that kept blowing out because he lied directly on it... Maybe you can build some custom setup using those big comfort cushions or something, or gradually retrain to be a side sleeper?

5) just keep taking baby steps to more activity, as you can tolerate, get help re possible pred withdrawal issues, etc etc. it *sounds* like you were never very physically active at least in the years just before the surgery, but if I am assuming wrong as I have done before, I apologize in advance really. In any case, just use the baby steps method, trying. Little more every week, interspersed with slacker rest days if you get tuckered. It should gradually pass.

6) i asked my surgeon about whether, if one had crohns colitis, and ones colon is removed, that somehow signals the disease to jump to the small gut in search if a new target and he said not at all, namely that the chance of it showing up there remains the same as it was when the colon was there... So there is every reason to believe it will not show up. Furthermore, he said that such disease, if it does show up, tends to be milder and more treatable than the crohns colitis was- I can verify that on pubmed but it certainly sounds nice, lol. And no matter what, if it takes years and ears for something (that may never show up) to show up, it is guaranteed that there will be much more minimal side effect drugsand treatments available, as snails pace as it often seems.

7) My wife, believe it or not, thinks my stoma is cute and "cool" and with her help I have adopted the view that this whole setup is just like the six million dollar man high tech prosthetics now being used, or the stuff on Iron Man or whatever- I think you enjoy sci fi.? There is to me something very cool about having a pouch that will never ever get inflammation of any sort, and can be swapped at will.

Anyway, NcoT, keep venting anytime, and I hope nothing I said today will send you off ballistic at me but if s, it's all good... hoping above all that things look up for you sooner not later. Hey, we both still have rectums, so if the is a total cure for IBD tomorrow we can just each do a straight hookup, lol.

Post Edited (Probiotic) : 6/18/2013 10:26:24 AM (GMT-6)

Posted 6/18/2013 9:28 AM (GMT -7)
Take an Imodium tablet before you go to sleep.
Posted 6/18/2013 9:49 AM (GMT -7)

NiceCupOfTea said...
On the plus side, my stoma nurses are both lovely people. And I am finally off all those toxic meds.

at least you have a couple of positives. More will follow I'm sure. :)
Posted 6/18/2013 10:13 AM (GMT -7)
If you put some water in your bag and swish it around so it reaches the top before the change it won't be yucky.
There is no reason you can't sleep on your stomach. It isn't going to hurt your stoma, and you will probably feel it in your sleep and turn over if it fills up.
Posted 6/18/2013 10:44 AM (GMT -7)
my son is tube fed - he has a "button" that goes into his stomach, and then and longer tube that goes into his small intestine - he has 2 extensions that connect to the button, one that is hooked up to his formula bag, the other is used to drain his stomach contents (bile) - the extensions come in different lengths and have a 90 degree where they attach to the button -

another piece of equipment we use is a suction pump - we use it a lot to suction his nose and mouth/throat when he gets sick -

so i'm thinking - why couldn't you attach an extention hose to your stoma, and feed it into a suction pump or remote bag while you sleep - sleep as long as you want - wanna sleep 10 hours, get a bigger bag -

Posted 6/18/2013 10:45 AM (GMT -7)
I'm a school bus driver and all my friends all comment how having a bag has its advantages. I drive my little kiddies around smiling and crapping and farting at the same time while they are driving theirs sweating bullets trying to hold it and miserable.

Yea I get up at night to empty my bag, but believe me, you will get up at night to empty your bladder when you get older. So, since I have 4 kids, I'm already trained in getting up to pee every night. Now I just empty my bag at the same time. Your output also might slow down as your body adapts to having no colon also. Mine did. Last night, I got up to pee, but did not have to empty my bag.

I still think you are wearing the wrong product and that is why you are itching. I wore hollister with my loop ileo and had itching attacks under my wafer. I finally switched products and quit having the itching. Something else that helps me with itching is to switch occasionly from convatec, my main product, to coloplast. My skin seems to need a break. Idk why.

Try to think of the positives here. That's what I try to do.
Posted 6/18/2013 11:15 AM (GMT -7)

soystud said...
my son is tube fed - he has a "button" that goes into his stomach, and then and longer tube that goes into his small intestine - he has 2 extensions that connect to the button, one that is hooked up to his formula bag, the other is used to drain his stomach contents (bile) - the extensions come in different lengths and have a 90 degree where they attach to the button -
another piece of equipment we use is a suction pump - we use it a lot to suction his nose and mouth/throat when he gets sick -

so i'm thinking - why couldn't you attach an extention hose to your stoma, and feed it into a suction pump or remote bag while you sleep - sleep as long as you want - wanna sleep 10 hours, get a bigger bag -

Urostomies often have "bed bags" because they're higher output than ileos and colostomies. The problem for an ileo is that if your output isn't liquid, it will clog the tube, more or less defeating the purpose. I had an extension hose attached to a bed bag for my loop ileostomy in the hospital because it was high output... It was all right, but a nurse knocked it by accident and the extension hose fell out of the bag, ended up covered with bile and having to get up for a sponge bath, when the whole point of the bed bag was to save me from getting up so much post-op to empty. Oops...

Anyway, if your output is so liquid that you could use a bed bag, I would recommend eating thickeners and using Imodium. Ileo output that's thin enough to flow through a urostomy style bag (with a "tap" at the bottom) means you're probably about to get dehydrated.

PS - Clever idea though :-)
Posted 6/18/2013 1:01 PM (GMT -7)
"Try to think of the positives here. That's what I try to do."

Shiiiiiit, that's what I try to avoid to do. Finding positives in a negative situation. I hate that with a passion.

The fact that you are there driving the bus which craping and farting in a bag as you put it, is the product of an unlucky situation that happened to you in a point in time. Compounded with the fact that treatments didn't work great for you, and medicine failed to figure out the cause, ultimately forced you to have a bag.

Now the fact that you feel good now is besides the point. You are still going in bag because of an unfortunate state of circomnstances.

My co-worker had prostate cancer. They chemoed and radio'ed him so many times, he lost most of his teeth. His cancer is gone, he has to wear diaper and he lost most of his teeth....but his cancer is gone...at what cost, it destroyed most of his body, and not even the cancer did that, the treatments.

Now to go back, You had IBD, you ended up having to have surgery, unfortunate, now you feel better but you have a bag.

Im just rambling here. The point is, they need to find a cure for this, anything else is just not acceptable in my book. Maybe in 150 years, they will discover it was just a small tweak to the immune system.
Posted 6/18/2013 1:18 PM (GMT -7)
Somedude
In a perfect world we would all have gorgeous, petal pink glowing colons with perfectly formed little logs once a day.

That wasn't in the cards so for now I'm perfectly happy with my j pouch. And ya know what? If it fails me tomorrow I can deal with the ileo because I never ever want to go back to that pain and suffering I endured not to mention crapping my pants everyday. That is not a life. At least we have choices unlike the poor guy you spoke of with cancer.
Posted 6/18/2013 1:46 PM (GMT -7)
All I know is my husband is out of pain and no longer feeling like he has a ball and chain attached to him and the toilet. For the past 2 1/2 years he has been able to accept his new normal and we have been able to make up for a lot of lost time.

Do I wish for him it never came to this...of course I do but if he can adapt and accept it so easily then so can I and all his friends and family who suffered a lot of anxiety watching him wither away to nothing. He not only has his life back but also his personality and is his outgoing self once again.

At our age it is a blessing to be given a second chance at being able to continue on with life and living.
Posted 6/18/2013 3:16 PM (GMT -7)
"Somedude
In a perfect world we would all have gorgeous, petal pink glowing colons with perfectly formed little logs once a day."

gimmie gimmie!!!
Posted 6/18/2013 5:35 PM (GMT -7)
Guys, I'm shattered, so this is going to be a short reply (yay! :p)

@notsosicklygirl - Unless you turned out to have Crohn's, you should never need a permanent stoma. But, y'know, if your luck sucks as much as mine (if it wasn't for bad luck, I'd have no luck), worst comes to the worst and all that, you'd get used to having a stoma. Well, hopefully you would. Just copy me and you'll be fine.... >.>

@Pro - Cheers, bro :p The annoying thing is, I really don't snack before bedtime =/ Have dinner between 6:30 and 7pm, and usually I don't have anything else to eat after that. Sometimes I might have a light evening snack, but most of the time I genuinely don't. I suppose I'll try an Imodium, as Pluot suggested, but that really pisses me off, that does :-/ (Also, I fear slowing things down too much and causing an obstruction.)

Re some of your other points. No, you were right; I wasn't very active in the years before surgery <_<. Actually, that's not entirely true. In 2010, I got into the habit of going for long walks, over some fairly steep terrain. I wasn't really very well back then, but by eating very little I felt better and had more energy. It didn't last. I wish I could do those walks again, but 10 minutes walk on level territory is enough to tire me out.

As far as Crohn's returning is concerned, I had Crohn's in the terminal ileum, which pretty much guarantees its return one day. I don't really know why Crohn's is so, so much more likely to return if you have it in the small bowel, but it is. That said, I've heard of people who've had 20 year remissions after surgery; it really is so random.

I am into sci-fi, but not so much into freaky, pulsating things covered in crap :-/ I'm reading World War Z at the moment. Hmmm. Zombies and coils of intestine go together like beef and mustard. Cool, I have something that a zombie would love :p

@ByeByeUC - Not too many, I'm sure... >_>

@summerstorm - I dunno about that; seems like it would be quite hard to pour water into the bag and that it would potentially create an even worse mess...

@answers4me - No offense intended, but do all your friends have IBD?? Couldn't imagine worrying about holding in a crap or fart pre-Crohn's. But now when I go out I worry about the bag leaking, or finding a toilet to empty the bag, or the stoma making dumb noises. Not massively so; but the thoughts are there at the back of my mind.

As far as getting up to empty the bag, I do find it a drag. But admittedly, thanks to the Crohn's, disturbed sleep has been a feature of my life for a few years. But at least I didn't have to worry about crapping the bed with Crohn's - no matter what, that never happened. It hasn't happened with the bag either, but I worry that it will, especially if I don't wake up and it gets overfull.

@Somedude - Once again I entirely agree with you. Having a stoma is a sh***y compromise, imo: it maddens me that in 60 years medical science hasn't come up with a better way of going to the toilet than this. Perhaps I whinge too much. Actually there's no perhaps about it. But still...

Okay, guys I'm off to bed. My "short" reply turned into something resembling a short novel, so sorry about that :-/ Goodnight people :p
Posted 6/18/2013 6:19 PM (GMT -7)
As far as the water goes, I empty the bag first and then I have a squirt bottle that I use to squirt water into the bag after most emptying times (depends on where and when). The water comes out just like the output and keeps the bag "cleaner." It isn't messy at all. The squirt bottle is just one of the bottles from the hospital.
Posted 6/18/2013 6:44 PM (GMT -7)
No. I'm the only one with Bowel issues as far as my bus driver friends. Never met a single person with a bag. I do have A niece and nephew with Crohn's disease. Ugh. Neither have a bag.

I have considered that several years from now, probably 50 or more, that they will probably find a cure for my functional problem and will say how barbaric it was that they actually removed people's colons when a little pill could cure it. But....not in my lifetime I'm sure.

And having the bag is a better quality of life for me. Before the bag I had no life as my life revolved around having the bowel movement that would not appear without such toxic doses of laxatives that I couldn't function and what I was doing was not considered living at all. Maybe this is why I have such a positive attitude about the bag. It's a functioning butthole on my stomach. It doesn't even smell as bad as regular poop did. Atleast mine doesn't.

I'm now healthy, happy, and enjoying life. I just wish you could come to terms with your stoma. Do you work? I went back to work after both surgeries. I think that helped me.

I also eat whenever. It doesn't seem to matter with me emptying at night.
Posted 6/18/2013 7:03 PM (GMT -7)
To rinse it out, just empty the bag, hold the end up, pour some water in, close the bag, swish it, then empty it. It's just like emptying liquid output. Doesn't make a mess at all.
Posted 6/18/2013 7:17 PM (GMT -7)
Oh, yes, my luck stinks. I am happy to see people have solutions for sleeping through the night. That gives me some hope if it ever happened, I would be able to live comfortably. Peeing in the night is another story, sometimes I get up to pee :(
Posted 6/19/2013 3:28 AM (GMT -7)

notsosicklygirl said...
Oh, yes, my luck stinks. I am happy to see people have solutions for sleeping through the night. That gives me some hope if it ever happened, I would be able to live comfortably. Peeing in the night is another story, sometimes I get up to pee :(

I don't know how old you are but the older you get it seems the more you have to wake up to pee. I NEVER used to get up to pee at night. As soon as I turned 40 I get up every night....sometimes 2x! Ugh!
Posted 6/19/2013 9:47 AM (GMT -7)
I'll try the water method next time I change the bag... *she said, a tad dubiously* <_<

@answers4me - So you had colonic inertia? I'm not unsympathetic to the miseries of constipation actually. Having suffered extensively from both constipation and diarrhoea, I've always said I would rather live with diarrhoea - better out than in, as it were.

I'm quite sure that one day stomas will be seen in the same light as human sacrifice, eg barbaric. Although to be fair I'd certainly rather have a stoma than my still-beating heart cut out and given as a gift to some tribal god, or whatever.

Nah I don't work. I'm not proud that I don't. I hope one day I'm able to train up in something and work.

Had another bad night's sleep last night :-/ The heat isn't helping. I know it's pathetic by Mississippi standards, or wherever, but it's getting to me. I keep waking up too hot and the bedsheet gets hot too. Anyway, I'm off to my brother's now. Later, folks :p
Posted 6/19/2013 12:14 PM (GMT -7)
Before ever being sick, did you work? Did you ever worked? Probably in Europe is harder to get jobs.
Posted 6/19/2013 12:28 PM (GMT -7)
we keep a ketchup bottle (the long neck type) filled with water on the back of the toilet which comes in handy for several purposes...just emptied another one that I will take for travel in Oct and just leave it behind
Posted 6/19/2013 9:04 PM (GMT -7)
You can also buy those bottles at the store like cheap restaurants and fish camps put their ketchup and tartar sauce in for about one dollar a piece and they work really good. I either use that or a small water bottle.
Posted 6/20/2013 5:42 AM (GMT -7)
Dude - I don't really want to talk about my work history (or lack of work history) right now. It's too depressing and I'm already depressed enough.

Yeah, despite the venlafaxine I've sunk right back into an absolute b**** of a depression again. I'm tired of this, I am so tired of this. Between my personality and this SOB disease, my life has been ruined without any chance of reprieve.

I'm exhausted all the time and have literally no life. I can't get a life while I feel this chronically tired and unwell. I have no idea what it is and I have absolutely no faith that the doctors will find out what's going on. I'm stuck in this pit of a life, supposedly 'free' of Crohn's and I feel like it, and the aftermath of all the gruesome drugs I've been, are kicking my arse as much as ever.

I still wish I had not had this operation. It was my only hope left for a normal life and now that hope has utterly evaporated. I'm never going to be well ever again, that's what it feels like right now.

Post Edited (NiceCupOfTea) : 6/20/2013 6:48:04 AM (GMT-6)

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