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02-03-2014, 09:05 PM   #1
brad1025
 
Join Date: Dec 2013
Location: canton, Ohio
Bag

I haven't been on for awhile due to me being sick. I had my first surgery on the 7th of January. The a week later I had to go back due to pain I couldn't walk I was in so much pain. After 3 test they found out where they reconnected my small intestine to my colol was leaking in my system. So they did emergency surgery and now I'm on a bag for 6 weeks and I'm having a rough time dealing with it and not being able to do the things I love. But my question is the next surgery as bad as the other two? And how long is the recovery?
02-03-2014, 09:54 PM   #2
nogutsnoglory
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Sorry to hear brad. I assume you mean an ostomy bag? Or are you on a picc line connected to IV bag? I think you mean ostomy but just want to make sure. Have you visited our stoma forum? Do you have a home nurse assisting you or were you educated at all? Let us know what's going on so we can help.
02-03-2014, 10:20 PM   #3
brad1025
 
Join Date: Dec 2013
Location: canton, Ohio
Its a ostomy bag I'm sorry about that and yes I have a visiting nurse but she don't like answering questions she's always in a hurry
02-03-2014, 11:18 PM   #4
nogutsnoglory
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Ah ok that's what I figured. An ostomy is definitely challenging and alarming at first. What kind of challenges are you facing? Are you leaking? Is it staying in place?
02-04-2014, 12:01 AM   #5
brad1025
 
Join Date: Dec 2013
Location: canton, Ohio
I keep leaking they can't get it to sick. And how much pain is the reversal? Will it feel like when I had my restriction? And I heard the hospital stay is usually 8 days?
02-04-2014, 12:30 AM   #6
nogutsnoglory
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I haven't had a reversal but hope to have one and it's supposed to be much easier on the body than the placement of the stoma.

What are you using now with your bag? Are you using a ring around your stoma to protect the skin? Call for samples from the companies Hollister, Convatec and Coloplast and try to see which is best for you.
02-04-2014, 10:12 AM   #7
UnXmas
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I keep leaking they can't get it to sick.
Hi - I was so lucky that my bag never leaked... and then the past several days I've had horrendous diarrhoea (the cause yet to be determined) and unsurprisingly have had a couple of leaks just in the last couple of days. I have a wonderful supplier of stoma products, who deliver every order within 24 hours - even on weekends - so I very quickly ordered myself some tape.
This is what I've been using, very generously:

http://www.charterhealthcare.co.uk/p...stic_tape.html

I've found a few pieces of this tape stuck round my bag keeps me safe from leaks even overnight despite the diarrhoea I'm getting. Perhaps you can order some or find something similar.
02-04-2014, 10:16 AM   #8
brad1025
 
Join Date: Dec 2013
Location: canton, Ohio
OK thank you. How long is the recovery after my next surgery? And I haven't told any about this but since I got the bag I feel like I can't leave the house. Its driving me nuts I cant stop getting sad about everything. I think I'm depressed is this normal?
02-04-2014, 10:29 AM   #9
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OK thank you. How long is the recovery after my next surgery? And I haven't told any about this but since I got the bag I feel like I can't leave the house. Its driving me nuts I cant stop getting sad about everything. I think I'm depressed is this normal?
I think it's very common to feel depressed after surgery - it's a major shock, especially if you didn't have much time to prepare. I haven't had reversal surgery so I'm not sure on the time-frame; I've had six surgeries though, and for the moderate to major surgeries, my doctors tend to say six to eight weeks. You can always get some complications which delay things though. My last surgery I got very sick, but I'm three months on from that now and back to normal.

I love my stoma but I'm sure many others feel more like you do. What is it that you're worried about, specifically? If you're worried about leaks, try packing a bag with a change of clothes, change of stoma bag and all your wet-wipes and other stoma supplies, take it with you and go somewhere where you know where the public restrooms are.
Are you able to go out to places where there aren't many people, where it wouldn't matter if your bag leaked? Such as to a quiet area of countryside? Would you feel better about going out if you had someone you know well go with you? Having someone there for moral support really helps.

Think of your bag as something which has possibly saved your life, and which may prevent you getting very sick in the future. As strange a thing as a stoma is, it's there to help you. I think of mine as just another body part, but for me it's greatly improved my quality of life.
02-04-2014, 10:40 AM   #10
brad1025
 
Join Date: Dec 2013
Location: canton, Ohio
I just want to go fishing like I use to but what if my bag leaks why I'm fishing and far from home. Or it falls off like it has the last 3 days. I just got all these playing thru my head.
02-04-2014, 11:14 AM   #11
nogutsnoglory
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Brad you can do everything you want to do. It's not going to stay life this, in the beginning I couldn't leave the house but it will adjust. Also you only have it for 6 weeks so just try to stay positive knowing that in a few weeks you are totally back to normal.
02-05-2014, 06:31 AM   #12
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I just want to go fishing like I use to but what if my bag leaks why I'm fishing and far from home. Or it falls off like it has the last 3 days. I just got all these playing thru my head.
What's the worst that could happen? On your first times out, don't go to a formal dinner or job interview, obviously, but if you go fishing - would you normally go with someone who knows about your stoma or who you think you could tell about it? If you get a leak... well you ruin some clothes (wear old ones you don't care about). If your clothes get in a mess and strangers look at you funny, tell them you slipped over in a cow-pat or something.

You will also find that you get much more skilled at changing the bag over time, and will learn to be able to deal with leaks more quickly. For example, I can now change my bag without undressing at all - I just tuck some pads or paper towels into my knickers to protect my clothes, and lift up my dress or t-shirt and tuck it under my chin (or pin it up with a clothes-peg). I can usually do this without getting in a mess at all, so if I had a leak while out I would just find the nearest bathroom and do it there. Keep a complete change of clothes with you as a back-up just in case.

Also think about babies and toddlers, and how you deal with their bathroom needs when out (if you've any experience of that) - you learn what you need to take with you, e.g. change of clothes for emergencies, changing things. When they need changing you find a bathroom. No one thinks babies are gross if they get their clothes dirty or have an accident. It's only that we've been socially conditioned to think it's terribly embarrassing for adults, but in fact we can and should treat our stomas as we would treat a small child going through toilet training. Yes it's mucky at times, but it's also unavoidable, and really not so very big a deal in the scheme of things.

I've also found that no one's opinion of me has changed since I've had my stoma. And yes, when I have had leaks, my mum has had to help me clean up - she doesn't care. Some people may care, but there are also plenty who don't. Do you have anyone close around to help you and give you some confidence in going out?
02-06-2014, 12:44 AM   #13
brad1025
 
Join Date: Dec 2013
Location: canton, Ohio
Yes I have my fiance and my mom to help me. But the only thing I'm scared if it leaks while I'm fishing I will be pretty far from home. And it worries me sick.
02-06-2014, 12:45 AM   #14
brad1025
 
Join Date: Dec 2013
Location: canton, Ohio
And is it hard to gain weight with stoma? Just wondering because all I do is eat now but I'm not gaining any weight?
02-06-2014, 02:14 AM   #15
grt73
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Join Date: May 2013
Location: aylesbury, United Kingdom

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Hi brad, sorry to hear how things are.
I had the same happen to me after my resection failed. I was so anti having a bag from the moment I woke up.
Like you it leaked 3 times a day and made my life a real misery.
It will however get better and after a while you get used to changing and replacing your bag. Using stoma paste helps a lot!
I wouldn't worry so much about how long its going to take for the reversal. I would imagine at the moment you are still recovering from the initial surgery, let alone making good the failed resection.
Reversal won't be done until you are completely fit and well and from what I gather the fitter you are ,the quicker you will recover. I hate to say it but now you just need to sit back, get good nutrition and oh by the way I'm always hungry too since my ileostomy. No matter what I eat I could still eat more! Weight gain didn't start for me for about 3 months! There are lots of threads about this and it is normal!
finally give your body the time it needs to recover. There is no rush! I know it's depressing to feel like this but you have to see it in the bigger picture. Without this bag, where might you be now? I hated, hate, sometimes like my bag but I only had two options and I will take a bag over a box any day of the week!
When you are up and about, get some ostomy bits in a bag, a bag of wet wipes and your fishing stuff and go the hell fishing and enjoy it. It's exactly what I did and in the times I was too ill to move I looked forward to it so much. I found I would rather be alone fishing because if I had a leak or needed to empty there wasn't anyone around to see what I was doing. It was also a good way of getting away and thinking about stuff to get sorted in your mind!
Also there is a plus point, you can go fishing now safe in the knowledge you won't have to worry about being busting for a crap whilst out lol
Trust me this will improve as you get stronger. The worst part is that it takes no time to get really ill and a hell of a lot longer to recover!
Stay in touch and we are all here waiting to help you if we can!
Hang in there mate, in three months it will be a different story!
Right I must change my god dam bag now before I go to work! Take care and speak soon!
02-06-2014, 05:16 AM   #16
AussieMumma
 
Join Date: Jan 2014
Location: Queensland, Australia
Sorry to hear you're having such a tough time. I got my stoma last week after a resection, but didn't know I would wake up with the stoma so it was a bit of a shock for me too! Is there any way you can find a different nurse who can help you get your bag to stay on better? There are many different products to help you. I haven't had a leak since I got mine, my stoma nurse was great and made sure I had the right products. I really think it would help, confidence wise for you to have a nurse with a bit more knowledge. As for recovery, I have been told reversal is a 'piece of cake' compared to a resection, and I would need to be in the hospital for about 5 days.
02-06-2014, 06:55 AM   #17
UnXmas
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And is it hard to gain weight with stoma? Just wondering because all I do is eat now but I'm not gaining any weight?
I've been wondering about this too. I haven't gained any weight since my surgery, and I lost a lot very quickly when the surgery was done. I'm not able to eat very much though.

What is your stoma output like? If you are emptying the bag many times a day and it is very watery, food may be going through you too quickly.
02-06-2014, 12:17 PM   #18
brad1025
 
Join Date: Dec 2013
Location: canton, Ohio
Thanks everyone for all the support it means a lot to me. I have new nurse coming today. Hopefully we get it fixed. And I have a catscan tomorrow to see how I'm healing. My surgeon said he should be able to give me a better idea on how long until my reversal
02-06-2014, 04:53 PM   #19
grt73
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How was the ct scan Brad?
Did you get any news to lift your spirits at all?
Hope your ok and thinking about gettin the rods out!
What do you prefer sea or freshwater?
02-06-2014, 05:59 PM   #20
AussieMumma
 
Join Date: Jan 2014
Location: Queensland, Australia
Let us know how long you have til your reversal! I too will be counting down the days til mine
02-11-2014, 10:19 PM   #21
brad1025
 
Join Date: Dec 2013
Location: canton, Ohio
Well no cat scan due to me having way to many and been exposed to , to much radiation. So my surgeon said he will chance it on the 27th of this month. If I'm not healed well i have the bag longer. If it looks good I get the bag off. I really wish there was another way. But I will keep my fingers crossed.
02-11-2014, 10:24 PM   #22
brad1025
 
Join Date: Dec 2013
Location: canton, Ohio
And thank you every one for the help I'm really glad I joined this site. I feel like I can say how I'm feeling and every one on here understands how I feel. And what I'm going through. I am really depressed with what's going on but I know there's a end to all this. And I will get to enjoy being Crohn's even if its a short time at least I can get a break from this disease.
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