Ostomates and Japan earthquake/tsunami

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blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 4/3/2011 7:20 AM (GMT -6)   
So I have always had this tendency to think about potential disasters and how I would cope with them..... lately I've been thinking about things like the earthquake/tsunami in Japan and Hurricane Katrina and what it'd be like to have an ostomy and be caught up in them..... of course, I'd be better off with an ostomy bag at the Superdome than I would have been going to the bathroom 20 times a day (in some ways, might even be easier than conventional plumbing....)

I got curious and did some googling, and found this link from Japan about how ostomates can prepare for earthquakes etc http://www.joa-net.org/contents/useful_en/04.htm .... of course, not that helpful if a tsunami washes away all your stuff.....

I also saw that coloplast has 128 employees in Japan, all of whom were OK, and they got a big truck and necessary permits right away to start distributing supplies.

It sounds like the Red Cross distributed supplies during Hurricane Katrina....

Do any of the rest of you think about this stuff? It's not an obsession, but it is something I do (since I was a kid and wondered re getting my braces off in various scenarios, e.g only a few people left after a nuclear war, sigh...... guess we'd have to improvise then.....)

ohcountrybear
Regular Member


Date Joined Mar 2009
Total Posts : 192
   Posted 4/3/2011 7:46 AM (GMT -6)   
I have a patient that had a fire and lost all of his supplies, red cross came in to help.

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 4/4/2011 4:37 PM (GMT -6)   
hi bluegrass, this was one big worry i had when getting my perm ileo & preparing my head for life after the op. while my life is miles better than before, i do wonder (worry sometimes) what would happen if normality were to break down maybe due to major industrial action, terrorist action, natural disaster, oil crisis. in the past I could probably get by independantly with just the basics of life / food/ a roof & without electricity, gas, luxuries. but now i am dependant on a continued supply of 'supplies' until i pass away. it doesnt bother me often, maybe for 5 minutes every few months.

i havent come up with any good answers yet ....... hopefully it'll never happen..... anyway the sun has come out again so its back outdoor again ........cheers
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 4/4/2011 4:42 PM (GMT -6)   
Auuuugh! Never thought of this. Something new to worry about. Auuuug!

On the other hand, good idea to be prepared. I get my supplies TONS ahead of time. BUT you do have an excellent point.

When going on a cruise, and they have those ship boat drills, and the PA person says in the event of a real disaster at sea, grab all of your medications and your life jacket. I picture myself lugging all my supplies out on deck and asking for a HUGE water tight plastic bag as wet they would do me no good.

You do raise a good point.

Rosemary

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 4/4/2011 5:38 PM (GMT -6)   
Didn't mean to get you all alarmed..... makes me think of what it was like for people w/ostomies before there was plastic. I guess one could improvise a lot of things, but it's hard to imagine they wouldn't leak and smell....

Rosemary, why not get your own big water tight bag, seems like it might be a good thing to have...

Villager, well, I am with you, and because I did used to think of this sort of thing when I was younger, I would always, of course, think of myself as one of the strong, survivors, who would be OK without all kinds of things. So, part of this (also occasional for me) worrying is just getting it that I am one of the vulnerable people now..... after the old people and the small children, I'm in one of the groups that would need a lot of help to survive. Reality is that in a lot of times and places, I'd already be dead..... so, I go back to gratitude that this surgery is fairly routine now, supplies are so good, and it gives me an opportunity for a better life.
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 4/4/2011 5:48 PM (GMT -6)   
yeah lets not think of the pessimistic side of what might happen & enjoy the present as we should have been doin during all those years of UC & stuff

well maybe one more strange thought - prior to my op my view was that i'll never have to worry about getting to pension age - there is every danger now that being 47 now i will live well past 65 & saddly i have been pretty negligent as far as pension planning is concerned. my new plan is that as its already too late - lets just dig a little hole in the sand & set mode ostrich
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/4/2011 5:54 PM (GMT -6)   
Yes, definitely it's time to enjoy life ... as for the retirement, well, better late than never. I almost didn't take my plan at work because I also couldn't imagine living that long (that was even before my official diagnosis) ....had a very kind older man who was in charge of all that then who just looked at me and kind of ordered, "Take the plan." It was a one shot deal, and it was good I did.

But I do know people who are at retirement age and for various reasons started late and aren't so bad off.....course, they had the booming real estate market and owned houses ....
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 4/4/2011 6:15 PM (GMT -6)   
its good to hear that you sound advice/ instructions from your friend - 'luckily' when i was disgnosed with UC in 1990 i read that i could be housebound after 6 years so i sorted out most of my finances & I have my mortgage paid & have no big bills, this is especially good because here in ireland house prices went absolutely mad over the last decade & after a serious bust, many thousands of homeowners are now effectively bankruppt - its not good !!


anyhooo, i see you are about 2 months postop, i do hope you continue to heal well & improve well as the weeks & months go by. i'm about 8 months ahead of you & i hope you will feel as good as i do in time - is'nt it just amazing how adaptable we are mentally & physically to whatever is thrown at us, i know we often dont have a choice as to what 'get done' to us & sure theres alot of angst in the process but we seem (with the help of this forum & friends etc) to tick off the problems that arise one by one until we can live normally again

time to crash here - its 1 a.m. cheers
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 4/4/2011 6:16 PM (GMT -6)   
its good to hear that you sound advice/ instructions from your friend - 'luckily' when i was disgnosed with UC in 1990 i read that i could be housebound after 6 years so i sorted out most of my finances & I have my mortgage paid & have no big bills, this is especially good because here in ireland house prices went absolutely mad over the last decade & after a serious bust, many thousands of homeowners are now effectively bankruppt - its not good !!


anyhooo, i see you are about 2 months postop, i do hope you continue to heal well & improve well as the weeks & months go by. i'm about 8 months ahead of you & i hope you will feel as good as i do in time - is'nt it just amazing how adaptable we are mentally & physically to whatever is thrown at us, i know we often dont have a choice as to what 'get done' to us & sure theres alot of angst in the process but we seem (with the help of this forum & friends etc) to tick off the problems that arise one by one until we can live normally again

time to crash here - its 1 a.m. cheers
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/4/2011 6:54 PM (GMT -6)   
Sleep well villager.....

I thought of one other thing about my catastrophe reasoning..... my primary doc was at the hospital a lot for other reasons, and she came to visit me almost every day, kind of more as a friend than as a doctor (this was during my first hospitalization of the year, in Jan/Feb, ten days, w/a high fever, before I had decided to have the surgery).... I talked about my fears and how I would be vulnerable in a big disaster, and she said that if it was about mental fortitude, I'd be the last one standing.... which was sweet, and like what you just said, we are adaptable and used to adversity, and those are strengths, even if we'd rather not have acquired them the way we did.

I am almost six weeks post op. Healing is a bit frustrating in that it's so slow..... got an abscess in my butt wound, which was a few more days in the hospital, and because I was on so much pred for so long, my surgeon says I'm healing at 50% the normal rate (wouldn't be surprised if she lowers the percentage when she sees me this week). But I am getting better, and very hopeful about the possibility of much better health than I've had in a long time. Great that you're feeling good, and yes, this forum is wonderful.
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 4/5/2011 4:50 AM (GMT -6)   
bluegrass, the butt would healing time was a shock for me becuase i only found out on the evening before my op that it could take a long long time to heal - obviously my research was not very thorough before arriving in the hosp, happily my wound nurse was a sensible knowledgeable woman - she recommended a) a good protein source called Cubitan so that I would have the resourses to make the new tissue to achieve healing (pprotein from ordinary food/ meat takes too much energy to extract the protein) - i took twice / 3 times the recommended amount daily as i physically felt a craving for it in the 2 months after the op - i tried it again recently & it now tastes too sweet, i read into this that the body knows what it needs & when it needs it

secondly to keep the bum wound clean/ disinfected, she recommended ( twice a day) putting a few drops of tea tree oil in a luke warm bath & sloshing the water into & around the wound for maybe 5 mins - i found this useful & effective advice - after about 2 months my butt had healed fully with no probs

also she told me 'no cycling for at least 4 months' whereas my surgeon, a great guy, said 'go ahead you'll be fine' -- i take this to show that the wound nurse is more aware of what patients go thru in the days/ weeks/ months after big surgery.

cheers & have a lovely day
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/5/2011 6:35 AM (GMT -6)   
Villager, did you have any complications with the wound? Because of the abscess, my wound is open and draining now. I have a nurse come every day to pack it, and I have to change gauze and abd pads all day long to catch the drainage. The packing has silver in it which is supposed to be antibacterial and to help it heal faster.... but they are keeping it open, so it heals from the inside out.

I'm not supposed to have a bath at all, sigh..... really like baths, and swimming too. I have been taking elemental protein shakes, but not as often as I probably should....

My surgeon did say that the butt wound would be the hardest to heal (the surgery was laparoscopic) .... but this is definitely longer than is typical.

Oh well, I am getting better, though. Yesterday I was upset about a little thing and got in the car (passenger seat) w/out my waffle pillow. Wasn't the best idea, but I didn't even notice for about ten minutes, and a few weeks ago, would have been impossible. So, patience....

thanks
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 4/5/2011 7:02 AM (GMT -6)   
bluegrass, i did have seepage (!!) from the bum wound for a few weeks after op & was using pads & packing with a seaweed based anti bacterial gauze, my healing was probably delayed a little as I was injecting clexane (heparin) twice a day at home for a month to prevent clots, once the seepage (lovely word) stopped the healing sped up considerably - hopefully you will find this too - if you can manage to take the protein shake i think you reap the reward - maybe your local pharmacist can recommend another product which you might enjoy - i found the vanilla and strawberry cubitans tasty tasty

yes the car journeys to the hosp for wound dressing/ stitches are a memory i have stored far in the dark unsued corners or my mind - you have reminded me of them so i must bury them a little deeper next time

from speaking with my wound nurse & from this forum & a UK forum, i am under the impression that 2 or three months for healing to properly kick in would be normal enough (i am open to correction on this point) - in fact my surgeon in order to prepare me for the worst, did tell me that the bum could take up to 6 months or a year to finally no longer be a problem - happily i did not go that far - indeed i did read on a forum that for one poor soul the bum wound took 12 years to sort out, my sympathy & best wishes extends genuinely deeply to that person. hoepfully he/she is happier now

by the way i did leave it about 7 months before cycling & happily the new bum skin (lovely !!) has not been a problem - it nas'nt sorted ount the saddle soreness though
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/5/2011 7:19 AM (GMT -6)   
Glad you're cycling.... that's nice. I hadn't heard 6 months to a year for the butt wound, but it's easy to believe....

I am taking coumadin for six months, sigh..... definitely the wound has been bleeding more since I've been on it. When they did the CT to find the abscess, they also found a blood clot in my hepatic vein..... was hard to decide if it was just one of those random CT finding issues that really aren't issues sorts of things, or whether it was a blessing in disguise that we found it.... after much consultation, my gi doc thought it better to treat, as it's hard to treat if it gets bigger. So, blood thinners here too, sigh. At least it's pills now, I had to do the shots for a while (although I've been on humira and cimzia in the past, so the nurses were surprised that I was unphased by giving myself shots..... but I still don't really like it)

Thanks for the nudge on the shake, will have one soon....

No suggestions for saddle soreness..... sorry.....
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 4/5/2011 8:18 AM (GMT -6)   
my dr arranged a ct scan a week after my op specifically to check for a clot in the hepatic vein & sure enough one was found, hence the clexane needles - the scanner offerred to check my other organs for clots but i had had enough prodding & poking so i declined the offer

whatever the merits of getting stabbed involuntarily by someone else, there is something very weird about shoving a sharp implement into ones one body

i found it difficult to find good sites in inject on my abdomen as i was so thin so was using my thighs also, that would not be such a problem now as being 2.5 stone heavier (i.e. normal weight) i would be spoilt for choice

its comforting to see such commonality in our experiences - it is reassuring that we what we (an many others) went thru, while not particurly welcome in the shortterm & not run-of-the-mill, is not entirely unusual.
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/5/2011 9:10 AM (GMT -6)   
Every time I've ever had a scan they've found something unexpected -- cysts in my liver and ovaries, enlarged thymus, nodes on my lungs .... most required further testing and were found to be nothing. I get nervous about all the radiation....

It is comforting to know that you are doing well after having had some of the same complications.

Even when I know it's not going to hurt at all or very much, I still have to ramp up to get myself to stab myself, it's like going against a very primal instinct. Although.... the first time I did it I felt weirdly triumphant, like having survived a scary amusement park ride (not that I like those either).

It's so cool that you use stone as a unit, don't hear that much in the US (I'm a math teacher, when I'm not recovering from surgery, so get excited about that sort of thing....) I wonder when someone decided how much a "stone" would weight (seems so much more variable than a foot, for example).

I'm drinking a protein shake now

take care
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 4/5/2011 9:59 AM (GMT -6)   
yes were all metricized here now but those of us who were around pre metric, still talk of lbs, miles & of course pints. we've given up on our old IRĀ£ which used to be worth 240 pennies - the math was horrible

its been great chatting with you, i'll be keepin a eye out for you
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/5/2011 12:47 PM (GMT -6)   
thanks, you too.....
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery
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