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Crohn's Disease Forum » Surgery » Stoma Subforum » Will I ever feel normal again


 
03-06-2013, 06:15 PM   #571
CheerBear12
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Sorry too hear that 2thfairy
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03-06-2013, 08:10 PM   #572
annawato
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Awww - thank you! Yes, putting an end to those abdominal fistulas that were draining all the time was the best thing. Like you, I've been through and am going through some Crohn's doozies. Why do you change your appliance everyday? Is it by choice? I have an ostomy too. I feel for you because its not fun changing daily. You may have said why before but I am new to this forum. I really like this opportunity to share and learn from others.
My output is very liquid and there is lots of it so it tends to seep under the flange and irritates the skin or causes leakages. I've tried everything under the sun to stop this - convex, pastes, different bags etc - but nothing helps. I did get two days out of one bag but other times when I have risked going longer I just wake up in a world of poo! So I've decided its easier to change every day and save my skin, and my bed. It is a bother cos its hard to find a time when my stoma isn't active so I spend a long time catching poo in between cleaning up and applying barrier wipes, paste etc. But I'm getting pretty good at it now so its not too bad.

P.s. sorry to take so long to reply. I haven't been on for a couple of days and somehow missed your post before that.
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you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
temp. ileostomy reversed feb 2011, new ileostomy, nov 2012
4 resections plus removal of adhesions etc, recurrent intestinal abscesses
lyme disease, depression, sacroileitis, chronic pain and......Crohn's..........
03-06-2013, 08:17 PM   #573
annawato
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2thy, what do you mean by stoma juice? I've noticed mucus around my stoma the last coupe of changes and wondered if it was being put out by the intestinal tissue of the stoma? Is this what you mean? and should I be worried by mucus - anyone?

Amy, I eat curry with no problem- I probably don't notice of it makes it more liquid since its liquid anyway. I think you should go for it.
How have you found the coloplast one piece? Its funny how we get used to a particular brand and system. I can empty and clean my welland bags with my eyes closed and half asleep at night - when I use a different brand I run into all sorts of problems and mess.
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03-06-2013, 08:23 PM   #574
2thFairy
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My stoma is drippy even when nothing is coming out of it. It's very wet. I get mucus strands from the inactive side of the intestine that is strandy. It's normal.
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03-06-2013, 08:59 PM   #575
annawato
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Thanks 2thy, I never thought of this occurring but of course it makes sense. The rest of the intestine is putting out liquid and mucus so why not this bit.
03-07-2013, 03:44 AM   #576
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Amy, I got the 'itch' quickly with hollister as well. Sure enough it was seepage.

As for eating a bit of curry spice, this is where you try it and see what happens. We are all a bit like mad scientists with stomas. Everything is an experiment for a while. I can eat curry, etc. (I LOVE mexican food!) You just have to give it a go in moderation and see what happens.
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DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
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03-07-2013, 08:23 AM   #577
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Well I ate a small portion of my curry and I have live to tell the tale! I didn't notice any difference at all really! Yay for still being able to eat one of my favorite foods! On a sad note, my son brought home chocolates to sell for school and I know I can't partake it the chocolate covered almonds.
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03-07-2013, 08:27 AM   #578
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Aww you can eat them but chew chew chew I only have them in small proportions.
03-07-2013, 08:27 AM   #579
maimmie
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Oh and Toothy, I get that stringy mucous too. That's from having a loop ostomy I guess. Though I can't for the life of me see the second hole. I think they must be so close together they look like one. I think my stoma looks like and end. Its a pretty round little button.
Is it weird that I sort of think its cute? I mean for what it is anyway. Its attractive for a stoma I'd say!
03-07-2013, 08:34 AM   #580
2thFairy
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I can't quite see the second hole, but I see stuff come out from time to time. The first time it happened, I thought something was wrong because there was a bunch of mucus that came out all at once. Then I figured out what it was and it was actually really cool.

I love that you have a cute stoma!
03-08-2013, 04:56 AM   #581
annawato
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No its not weird to think your stoma is cute. I'm realising my last nice round stoma was cute too. This one is a bit of an ugly bastard if I do say so myself. Oh for a nice little button.
By the way, is it possible for stomas to get larger with time? I swear mine is growing. And getting uglier as a result.
03-08-2013, 05:36 AM   #582
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Mines an big ugly bastard, with a personality to match! He's loud and proud and tends to have the best timing for embarrassing behaviour around.

Stomas do change sizes Anna, on a periodic basis. They apparently do it all the time. Usually to cause us issues I presume, as that is what Stan does! However, if yours is growing and staying big I would be measuring it daily and check with the IBD or better Stoma nurse. Stan got and stayed larger when I was having a flare.
03-08-2013, 06:49 AM   #583
annawato
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haha, glad I'm not the only one with an ugly bastard!

I was worried that maybe it was prolapsing, but so far its actually a benefit cos it doesn't retract as much as before. I'll keep an eye on it though. Measuring is a hassle but I guess if I strip naked and wash the bathroom afterwards.........
03-08-2013, 07:03 AM   #584
2thFairy
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Measuring is a hassle but I guess if I strip naked and wash the bathroom afterwards.........
Aren't we all just sexy beasts with our stoma rituals and requirements! Hahaha!!
03-14-2013, 06:37 PM   #585
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I've mentioned it on another forum, but my (loop ileostomy) stoma has definitely increased in size since having it about seven months ago (was cutting the pouch base adhesive to 38mm in hospital, increased to 50mm at present and stoma nurse this week advised a further increase to 55mm!). The stoma nurse said this was not uncommon - according to her they often get smaller but can (as in my case) get bigger.
03-15-2013, 10:30 AM   #586
maimmie
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Wow. Its crazy to me how much they vary in size. Mine is only 18mm. Its shrunk from 33mm when I got out of the hospital. I think it sticks out a bit more then it did originally though. I thought it was done shrinking because it was 20mm for the longest time then last week it was smaller again. I hope its done now. I liked when it was 20mm because there is a line to cut on the back of the flange. Now I have to mark it.
My stoma is like a delicate little girl with a foul mouth. Hehe. My nurse calls them all he but I correct her on mine. Its definitely a girl.
Ugh I feel like my posts always get a bit wierd. Oh well. Lol
03-15-2013, 08:39 PM   #587
annawato
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I think all our posts are a bit weird but theres nothing wrong with that. I always ramble on for ages and think everyone must get sick of the length of my posts.
18mm! How lovely. My last was 32 and i thought that was small. This one is, I think, 48 * 25. So like I said, an ugly bastard.
03-16-2013, 06:55 AM   #588
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Mine has been at 25 for the longest time now. I forget to measure it, but I am sure I would notice the hole was too big if it had shrunk.

My back has been giving me grief for the past few days, really sore, I'm just hoping it is not the good old psoas infection again. I have my in/outlaws visiting at the moment. Joy of joy, it is definitely not a stress free time. Anyway today my back just got too much and I had to go to bed with a heat pack. Lord knows what they think about that. Oh well it is just a fact of life for us, and the main thing is my husband and kids are great and very understanding.
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03-16-2013, 11:56 PM   #589
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Bugger what the outlaws think! You are sick, you are dealing with an awful illness, You are dealing with a difficult situation. If they can't have a bit of empathy and understanding then that is their problem not yours. As you said, your husband and children are supportive and understanding and that is all that matters!
Sorry for being so angry but I had a M-I-L who really undermined me, complaining to my husband about what I did and didn't do around the house. I swear she added to the depression and stress I suffered over the years. Looking back i think how dare she but at the time I just felt really guilty and like a bad mother and wife.
The most important thing for you and your husband and children is for you to be as healthy and happy as you can be with this illness and if that means things don't get done around the house because you need to rest then that is fine.
I love your term outlaws!
How is your back today? Is psoas psoriasis?
anna
03-18-2013, 05:28 AM   #590
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Thanks Anna,
My back is still giving me hell. I'm finding a heat pack really soothing.

It's in my psoas muscle that I have had the ongoing abscess problem. It just doesn't heal. In the next week or so my butt wound will explode, leak blood and pus, and the back pain will go. It's just getting there, then the butt will not heal for ages. It's a vicious cycle.

My MIL sounds like yours. Good thing is they live in Perth and rarely bother us. When they come over she expects to be waited on hand and foot. Needless to say we are all over it!
Only here for one more week. I can survive that!
12-18-2013, 10:44 AM   #591
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I just thought I'd visit my old thread here for a minute to announce that its my one year stomaversary! Happy Birthday Audrey! Oh how far we have come together this year. There have been some bumps in the road but over all I'd say my little stoma Audrey has made this a good year.
I take none of the health I've been given this year for granted. I'm so looking forward to chirstmas with my family and friends this year! Since I spent last year in the hospital recovering from my surgery.
Can't wait to eat drink and be merry!
12-18-2013, 10:51 AM   #592
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Merry Christmas and good health to you!

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12-18-2013, 03:36 PM   #593
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My stomaversary is tomorrow!! Oscar will be 4
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Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

12-18-2013, 06:32 PM   #594
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Yea!! Happy Stomaversary, Audrey and Maimmie!!
12-19-2013, 01:56 AM   #595
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Happy Stomaversary!!

And a healthy happy and safe Christmas to you all.
12-19-2013, 04:48 AM   #596
2thFairy
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Happy Stomaversary to you, Nyx and Oscar!
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