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02-22-2012, 05:35 PM   #1
giftedbyadoption
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Stoma hernia

How many of you have had one?
I am terrified of getting one I all ready have a lump appearing under my stoma and it use to be flat there. I am praying its just my healing and I didnt notice before??....

I saw pictures and people can not get their pouches to stay on I have enough issues with leaking
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02-25-2012, 07:33 PM   #2
Jennifer
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I've never had a stoma but that would definitely concern me. I'd see/speak with my GI/surgeon right away about it. Infections are killers so be careful. There has to be some way to get that leaking under control better too. What has your doctor said about all of this (assuming it started happening before the weekend)? Keep a close eye on it and if there's any sign of infection (fever, nausea, vomiting, pain, redness etc.) over the weekend then please do not hesitate to go to the ER to have it checked out.

Here's a link on stoma care (sorry that's the best I can do): "Call your surgeonís office if a rash, unusual odor, and/or yellowish-green drainage appears around the stoma." http://www.hopkinsmedicine.org/trach...ing/stoma.html
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02-25-2012, 07:42 PM   #3
giftedbyadoption
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I've never had a stoma but that would definitely concern me. I'd see/speak with my GI/surgeon right away about it. Infections are killers so be careful. There has to be some way to get that leaking under control better too. What has your doctor said about all of this (assuming it started happening before the weekend)? Keep a close eye on it and if there's any sign of infection (fever, nausea, vomiting, pain, redness etc.) over the weekend then please do not hesitate to go to the ER to have it checked out.

Here's a link on stoma care (sorry that's the best I can do): "Call your surgeonís office if a rash, unusual odor, and/or yellowish-green drainage appears around the stoma." http://www.hopkinsmedicine.org/trach...ing/stoma.html
Thanks
pretty much every stoma mate has leaks one time or another its just part of our life I dont have any sign of infection and my nurse was happy with the way my skin looked
Just worried about the hernia's and wondering how many of my stoma friends get them since I read a LOT of people do I am not lifting at all and trying to be real careful not to.
Thanks for replying
02-25-2012, 07:48 PM   #4
Samboi
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I was at the stoma supply outlet on Friday.
One of the signs there indicated that 7 out of 10 people with stomas get a related hernia within 12 months.
They had a thick belt like a girdle type arrangement to assist with minimizing the likelihood of a hernia developing.
I have to say - the stats kinda worried me. I definitely don't want a hernia!!
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02-25-2012, 08:10 PM   #5
PsychoJane
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Geez... 7/10... I do hope this is a fake statistic to sell their product... =/
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02-26-2012, 07:39 AM   #6
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That statistic must be a lie. I just found this which seems more accurate;

'A literature review found that parastomal hernias occurs in 1.8 to 28.3 percent of patients with end ileostomies, 0 to 6.2 percent with loop ileostomies, 4.0 to 48.1 percent with end colostomies, and 0 to 30.8 percent with loop colostomies [15]. The lower rates for loop ostomies are related to the temporary nature of most of these stomas and the short duration of follow-up. Most parastomal hernias occur within the first two years from construction, and studies with longer follow-up have reported higher parastomal hernia rates.'
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02-26-2012, 03:28 PM   #7
giftedbyadoption
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YUCK.... I have a permanent ileostomie so I am at higher risk
The belts are so uncomfortable its a pain enough to wear the stuff we have to wear let alone the belts as well
02-26-2012, 04:17 PM   #8
Misty-Eyed
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I'm planning on starting some abdominal muscle exercises, Lizz as apparently the stronger your stomach muscles are, the less chance you have of getting one.
02-26-2012, 04:35 PM   #9
giftedbyadoption
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I'm planning on starting some abdominal muscle exercises, Lizz as apparently the stronger your stomach muscles are, the less chance you have of getting one.
My stomach muscles are so strong they scared my dr LOL... he couldn't believe I didnt work out.
But I do not, I cant it hurts to bad from my RA pain. I am 8 weeks past treatment and in so much pain working out right now is impossible for me. Hoping to get back to my remicade after I see my surgeon this week??

My stomach muscles are strong from constipation go figure WTH lol... from never being able to go from pushing and pushing for 42 years crazy huh....I have a 25 inch waist and all muscle pretty much.

I hope you are right but I swear it was all flat around my stoma and now it seems to be forming a lump I am hoping its in my head

I cant believe there are not people on this board who have not got hernia's from what I have read and heard its bad
02-26-2012, 10:43 PM   #10
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Misty had a hernia, but she's the only one on here that I know of that had one. I'm just over 2 years post op and I've not had any problems at all.
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Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

02-27-2012, 08:16 AM   #11
giftedbyadoption
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Misty had a hernia, but she's the only one on here that I know of that had one. I'm just over 2 years post op and I've not had any problems at all.
Thats great Cindy...
Thanks for sharing.... I see you have a colostomy though they say that the chances are less with a colostomy then a ileostomy not sure why?? Seems both would be same risk to me?
02-27-2012, 12:59 PM   #12
Misty-Eyed
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I've only seen that the chances are less with an ileostomy. I'm guessing because a colostomy is larger and so the cut into the muscle to get the stoma through would be larger.

Are you going to get your lump checked out anytime soon to see what's going on? It may pout your mind to rest if anything!
02-27-2012, 02:09 PM   #13
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Hello!! Misty here with the wonking parastomal hernia. His name is Ollie. And he's baaaacckk!

Just my luck. I had surgery to correct it, but it didnt work. My entire abdominal wall is shot though. When they cut me, they did something very wrong. Very, very wrong. I dont know that it can ever be corrected without major surgery. And I WILL have that surgery as I am unable to wear normal clothes or be a normal person tbh. My entire abdominal wall is shot. Hence, parastomal hernia from hell.

Your odds are improved if you dont lift, have good ab muscles, wear a belt to hold everything in. Nothing helped me because the surgery itself ruined me and nothing I did could keep it from happening. Parastomal hernias are unlike 'normal' hernias. So take care of yourself, and remember (as mom used to say) an ounce of prevention is worth a pound of cure!
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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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02-27-2012, 02:27 PM   #14
giftedbyadoption
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Hello!! Misty here with the wonking parastomal hernia. His name is Ollie. And he's baaaacckk!

Just my luck. I had surgery to correct it, but it didnt work. My entire abdominal wall is shot though. When they cut me, they did something very wrong. Very, very wrong. I dont know that it can ever be corrected without major surgery. And I WILL have that surgery as I am unable to wear normal clothes or be a normal person tbh. My entire abdominal wall is shot. Hence, parastomal hernia from hell.

Your odds are improved if you dont lift, have good ab muscles, wear a belt to hold everything in. Nothing helped me because the surgery itself ruined me and nothing I did could keep it from happening. Parastomal hernias are unlike 'normal' hernias. So take care of yourself, and remember (as mom used to say) an ounce of prevention is worth a pound of cure!
I am SO SO sorry Misty.....
I am terrified of them and I will tell you why and PLEASE dont take this wrong because I know its not just the hernia my aunty had colon cancer as well which is another reason I CHOSE to have my WHOLE colon removed to much cancer. My aunt has a hernia and she went to have it repaired and she never came home I held her hand as she took her last breath. They say she died from complications to the hernia surgery but I think it was the colon cancer coming back my self
hernia's give me the creeps big time any little knot on my stomach looks like one to me because I have no stomach lol... all I have are ribs .... my whole 96 lbs
I do not even lift laundry baskets ( hubby will not LET me) so I am doing what I can not to get one..... but I swear I am getting lumping around my stoma but I also never had one and hubby says duh it looks the same to me and you never had one before so it supposed to look that way silly lol.. the nurse never said anything so maybe he is right??

I hope you get it taken care of I heard its hard to wear pouches how do you get them to stay on? ....

Much love to you
02-27-2012, 02:40 PM   #15
Terriernut
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Oh, bless you sweetheart.

I sailed thru my first parastomal hernia surgery...if you dont believe me ask Michelle! (apparently I mananged to look glamorous?!) I said then, I'll say now, it was a piece of piss compared to the colostomy surgery! I am going to guess that there was something else going on with your aunt. And I'm sooo sorry that happened. I can certainly understand your fear! But you are more than welcome to contact me by pm anytime if the fear gets to you too much.

How do I keep from having probs? I use the sensura flex system. No leaks. It's larger and very flexible, the actual appliance, and I have no issue (or rarely) with leaks...shazaam!!

If you are worried, and honey, I can see that you are...wear a belt. And have it checked by a stoma nurse. They've seen it all and they'll let you know if it's a hernia coming up.
Big Hugs!
02-27-2012, 02:43 PM   #16
Terriernut
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I would also say, if you want to take a picture and pm me with it...I can give a damn good estimate if it's one starting. They start slowly and get bigger. Please do have a stoma nurse or Dr look at it. xxxxxxxxxxxxxxxxxxxx
02-27-2012, 04:00 PM   #17
giftedbyadoption
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I would also say, if you want to take a picture and pm me with it...I can give a damn good estimate if it's one starting. They start slowly and get bigger. Please do have a stoma nurse or Dr look at it. xxxxxxxxxxxxxxxxxxxx
THANKS sweetie... I may send you a picture I dont see a stoma nurse right now they say I only have to go to the wound care if I am having skin issues.
And of course I should go if I think a hernia is starting. I did order a few belts and plan on wearing them and I know my hubby will never let me lift again

I am not use to depending on people so much thats for sure but I guess I will get use to it??
02-27-2012, 04:09 PM   #18
Terriernut
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No, you wont get used to someone lifting for you, you will carry on. You cannot live your life in fear. You can be careful, but you must be able to live a normal life! Your fear musnt get in the way of that! Do not go around lifting 50lbs, be cautious. But you can certainly live life!! And yes, that means picking up your kids, lifting the laundry and being a normal mom!
02-27-2012, 04:11 PM   #19
giftedbyadoption
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I would also say, if you want to take a picture and pm me with it...I can give a damn good estimate if it's one starting. They start slowly and get bigger. Please do have a stoma nurse or Dr look at it. xxxxxxxxxxxxxxxxxxxx
Is that system... a 2 piece you use??...
02-27-2012, 04:18 PM   #20
Terriernut
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I use the Coloplast Sensura Flex two piece system. Works a treat for me with 'Ollie'.
02-27-2012, 04:40 PM   #21
giftedbyadoption
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I use the Coloplast Sensura Flex two piece system. Works a treat for me with 'Ollie'.
My doctor told me not to lift over 10lbs of course laundry is not 10lbs I am just not totally healed yet is why he is lifting that
As far as kids go.... mine are 21 years and 9 no lifting them my 9 year old is 60lbs and I am 97lbs lol...

I am using coloplast systems now as well havent tried the 2 piece ones as of ye though....
As for lifting I was the type of women to move a sofa bed couch on my OWN before my surgery so thats what I mean about getting use to having people do things for me I HATE not being able to just move the whole house around on my own lol...
02-27-2012, 04:44 PM   #22
Terriernut
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I LOVE the two piece systems!!! My life is soo much easier with them. As for moving the house around...ahem. Time to have some help with that yes! I'm a Leo/Virgo...so I have Minions to do these things for me now. May I suggest minions? You will enjoy this, trust me.

Sadly, I have to PAY my minions, but you have men around the house, this is much better for you! You can now officially become....A GODDESS. Enjoy this new life!!!!!!!!!
02-27-2012, 04:49 PM   #23
giftedbyadoption
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I LOVE the two piece systems!!! My life is soo much easier with them. As for moving the house around...ahem. Time to have some help with that yes! I'm a Leo/Virgo...so I have Minions to do these things for me now. May I suggest minions? You will enjoy this, trust me.

Sadly, I have to PAY my minions, but you have men around the house, this is much better for you! You can now officially become....A GODDESS. Enjoy this new life!!!!!!!!!
lol... you are funny, yes I have 3 men well TWO men and one little man headed up
02-27-2012, 05:28 PM   #24
giftedbyadoption
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I LOVE the two piece systems!!! My life is soo much easier with them. As for moving the house around...ahem. Time to have some help with that yes! I'm a Leo/Virgo...so I have Minions to do these things for me now. May I suggest minions? You will enjoy this, trust me.

Sadly, I have to PAY my minions, but you have men around the house, this is much better for you! You can now officially become....A GODDESS. Enjoy this new life!!!!!!!!!
Misty ...
How do you know which coupling to pick with the 2 piece system it has color codes small/medium/large does that mean your body size or your stoma like the red says
3/8-2 "
02-28-2012, 01:35 AM   #25
Terriernut
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For the base plate, it means your stoma size.
02-28-2012, 05:04 PM   #26
giftedbyadoption
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For the base plate, it means your stoma size.
But I cut my to size ??
Are these real big on the body I cant tell by the pictures I am so petite I ordered a sample though today
02-29-2012, 01:52 PM   #27
GeminiTwin
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Well, I'm new here but I saw this topic and thought I would add my .02 cents. I have had two parastomal hernias. My original ileostomy was placed on the left side (as a loop, intended to be reconnected at some point). I later was forced to have it relocated to the right side, where I then developed a parastomal hernia. Not more than 3 or 4 years later, I had another hernia which cause me to have the stoma again relocated to the left side. Of course, the stoma is permanent at this point. I'm 44 years old, and had my first surgery for CD after a perforation caused me to have the emergency "temp" stoma when I was 19 years old.

I just found this site and I'm mostly here to look up joint involvement. I've been in remission with the exception of all the extraintestinal problems such as erythema nodosum, gallstone pancreatitis, and now this excruciating joint pain.

Thanks for listening..

GeminiTwin
02-29-2012, 01:58 PM   #28
Terriernut
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But I cut my to size ??
Are these real big on the body I cant tell by the pictures I am so petite I ordered a sample though today
I would definetley order samples of everything you can. Tell them your body type, and what you would like and they can recommend things for you. If all else fails, call your stoma nurse. They can be a godsend!
02-29-2012, 02:00 PM   #29
Terriernut
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Well, I'm new here but I saw this topic and thought I would add my .02 cents. I have had two parastomal hernias. My original ileostomy was placed on the left side (as a loop, intended to be reconnected at some point). I later was forced to have it relocated to the right side, where I then developed a parastomal hernia. Not more than 3 or 4 years later, I had another hernia which cause me to have the stoma again relocated to the left side. Of course, the stoma is permanent at this point. I'm 44 years old, and had my first surgery for CD after a perforation caused me to have the emergency "temp" stoma when I was 19 years old.

I just found this site and I'm mostly here to look up joint involvement. I've been in remission with the exception of all the extraintestinal problems such as erythema nodosum, gallstone pancreatitis, and now this excruciating joint pain.

Thanks for listening..

GeminiTwin
Welcome GeminiTwin! Sorry you have problems right now, this Crohns is just not a great thing! My stoma may be reversed some day, and I'm asking for a tummy tuck at the same time. If they stitch the muscles all together, I'm hoping it works! First hernia op...abject failure.
02-29-2012, 07:39 PM   #30
giftedbyadoption
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Welcome GeminiTwin! Sorry you have problems right now, this Crohns is just not a great thing! My stoma may be reversed some day, and I'm asking for a tummy tuck at the same time. If they stitch the muscles all together, I'm hoping it works! First hernia op...abject failure.


Welcome Geminitwin
I am assuming you are born in or around May?? I am also a Gemini and will be 43 so we are close in birth and birth dates
Sorry you went through so much thats awful .
I saw my surgeon yesterday and all though he says any stoma mate can get a hernia he swears if its done right when you have surgery 85% of the patients do not and also weight is a big part of it he says the heavy you are and if you gain weight quick you will get one?? I am not sure what to think I am just going to go with the flow and hope I dont get one??...

I hope I dont get one but not much I can do but live and hope I guess .... you will enjoy this group great gals here
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