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Tony
 Tony
(@ileostony)
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January 20, 2020 7:40 am  

Hi all,

 

The scar tissue from my surgery is still really tight, such that I can't lie flat for a prolonged period. I have to sleep at an incline bent at the waist a bit. I was hoping this would get better on its own, but it hasn't, and I can no longer afford to see a doctor about it. I was hoping someone here has some advice on dealing with this problem, as I would really like to be able to sleep in a "normal" position. I only lie flat for a minute or two for bag changes. Anyone?Bueller?

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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john68
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January 20, 2020 8:23 am  

Hi Tony, Do you have any swelling or unusual colouring around the scar. While the scar from any surgery will never completely disappear I would have some medical advice on this. Even from a stoma nurse if not a doctor.

ileostomy 31st August 1994 for Crohns


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Tony
 Tony
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January 20, 2020 8:57 am  

Hi John,

 

Thank you for replying so quickly. Everything looks normal, no swelling or discoloration except that the incision line is a little bit red. This hasn't changed at all since surgery. The skin is normal, with normal hair growth, and there's no pain. If I lie flat for too long, the tightness becomes uncomfortable and makes it hard to take deep breaths.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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SqueakyandLiza
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January 20, 2020 9:13 am  

Hi Tony, 

Do you have the same discomfort while standing up straight?  It seems like your skin would be stretched as much while standing up, so if the pain is just while laying down, maybe something else other than just the scar tissue is affecting it. 

I have a ton of scar tissue already, and I’m sure there will be more by the time my wound actually heals, so I’ll let you know if I experience something similar when I am actually healed up. 🙂

-Liza
“May your day be bright and your bag be light.”


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Tony
 Tony
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January 20, 2020 9:32 am  

Hi Liza,

 

When I lie flat, gravity pulls down on my belly directly, so it's not the same level of tightness as when I stand up straight, so it feels different. It is less than it was when I first arrived home from the hospital, so I'm hoping that eventually things will be sufficiently stretched, but at this point I'm admittedly growing a bit impatient about it.  I would certainly be grateful for any experience about this you would wish to share, and thank you for replying so soon.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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VeganOstomy
(@veganostomy)
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January 20, 2020 10:53 am  

@ileostony

I'd also love to know if there are any proven ways to stretch scar tissue after surgery. Most of what I see online are from non-medical websites and the few studies I've found about mechanical stretching of scars seem to yield no positive results for various techniques, although I am certain that something can be done to help. 

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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glenn.giroir
(@glenn-giroir)
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January 20, 2020 12:43 pm  

Hey Tony.  That does not sound comfortable, and I hope you find some relief from it.  I wish I had some words of wisdom.  My main pain is the healing of the closure of the pelvic floor.  Getting there, but it is a bit stiff also.  Such a weird place to heal a wound... I hope you find a good solution, and thanks for sharing.  

Ulcerative Colitis (1995)
Permanent Ileostomy (2019)

Doing what it takes to enjoy life to its fullest.


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Tony
 Tony
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January 20, 2020 12:47 pm  

Glenn, thank you. I'm gathering from the responses so far that this is not a problem unique to me. Not that I want others to experience my discomfort, but it does help me understand that at least I'm not doing something wrong or showing signs of some serious/urgent problem and that at least I can let pain be my guide as far as immediacy of investigation is concerned.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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LLNorth
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January 20, 2020 1:20 pm  

I hope this loosens up and you become comfortable soon, Tony - goodness, the things to deal with! LL

I love the smell of coffee in the morning. It smells like .... victory.


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SqueakyandLiza
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January 20, 2020 5:44 pm  

Tony, I wonder if there is some sort of essential oil that will help with this. I know there are oils that will help reduce scarring. Not sure if something along those lines would help loosen scar tissue that is already there, but it might be worth checking into. 😀

-Liza
“May your day be bright and your bag be light.”


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john68
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January 20, 2020 5:56 pm  

That’s a very good point/idea Liza, there’s a product called “Bio oil” we have over here. It’s for scars and stretch marks. Am sure it’s available on Amazon if not available in your shops. 

ileostomy 31st August 1994 for Crohns


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SqueakyandLiza
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January 20, 2020 5:58 pm  

Hi Tony,

I googled essential oils for scars.  Maybe take a look at this.  Not sure if treating the scar will loosen the tissues, but it might??  Looks like maybe emu oil or jojoba may restore elasticity, which might help you??

I can't imagine how annoying it would be to not be able to comfortably lie on your back.  Since my surgery, after so many months with the wound pump, and still having the unhealed wound, that is mostly how I have to sleep.  It is hard since I have always been a side sleeper, but I always seem to run into problems with either my wound or my ostomy now if I sleep on my side.  Partly because they are so close to each other, maybe?

-Liza
“May your day be bright and your bag be light.”


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Tony
 Tony
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January 20, 2020 6:48 pm  

Hey, never thought of essential oils. I have some Blue Emu already that I can try. Hopefully I can avoid getting it under the wafer, but this is encouraging. I'm still open to other ideas, but this feels like it could be just the ticket. I'll also have a look for the bio oil, John. I'm willing to give it a shot, as nothing seems to be happening on its own.

 

Liza, perhaps sleeping on your side makes the wound and all sort of scrunch together or otherwise be constricted by the repositioning of your viscera.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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LK
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January 20, 2020 9:22 pm  

Hey Tony...I'll tell you sir! Your words sure keep my Google dictionary hopping!  This is not a complaint as I like learning new words, but now that I know I have been mostly eviscerated, I may never look at myself the same way again!!!  lol!!!   so, is this scar tissue you are talking about in the skin or is it deeper, like inside of you?  I have been told that if I needed a surgery again that there would be so much work to do to just get to my intestines because of the amount of scare tissue that has built up inside me.  I was in bed for about 11 weeks straight while my guts healed from the inside out with the incision area a good four inches wide open and long,  from the V in my rids to the top of my pubic bone. Peritonitis is not fun by any means.  It took a long time to heal and because of that I still sleep on my back all night long too.  I started sleeping on a slant because it helped the output go to the bottom of the bag, otherwise I could feel it making its way to the outer edge of my pouch ready to also  eat my uncovered skin alive! After I started sleeping a bit raised I have had very little leaks at night.  Back to the scar tissue thing.  My scar tissue is ofcourse not just the scar itself but also inside of me and wrapped around my intestines securing them in place and to my  abdominal wall.  If this is what is going on, my advice would be to confirm it if you have not already,  and to get moving in a helpful sort of way  that you can manage with out pain or further damage to try and keep it from forming any more then it may have already.  This type of scar tissue is not something you can prevent, it just happens and it happens to everyone.   I found by doing light exercise early on is what kept my ability to keep my muscles moving and bending without to much trouble.  A surgery on the top of my left hand left me with "scar tissue" that secured the skin to the muscle, this had to be separated,  and was, but, it was another surgery later.  I learned a few fancy words that day.  Extensor Digitorum Brevis Manis, and I can still spell it! lol!  

Anyways, I hope you can figure this out soon Tony, really, anyone dealing with this kind of discomfort and pain.   It is not fun when you are limited to affording something for your health.  I would suggest that If you can somehow talk to a Massage Therapist they are very good at working with skin and deeper tissue and will be able to tell you most of what you are up against and they "might" be able to break down the tissue if it is surface.  Maybe one or two sessions and it would be something your wife may be able to help you with.  I see on TV all the time about people dealing with deep scar tissue in a joint or even a Vagina, which go thru a ton of trauma during childbirth, ... commercials they show these nifty little machines that help break it down thru using sound waves or ???  So maybe a Physical Therapist is needed.   It might  be worth looking into it.  You can learn so much on the computer these days.  All the best!  

Linda

Linda


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dogtalkerer
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January 23, 2020 3:14 pm  

linda, i was thinking along the same lines.  stretches is boring though and probably would require more than 10minutes a day.    then I thought of a rowing machine, good stretching and maybe not as boring as just stretching exercises.   but even better than rowing would be a K1 kayak trainer.   like rowing but you add torso twisting too.

I've felt tightness around the incision on occasion, but can't remember the circumstances. 


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Tony
 Tony
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January 24, 2020 7:34 am  

Hi all,

 

I'd like to clarify something. I'm not in pain. I only become uncomfortable if I lie flat for too long, so that pretty much means no sleeping at night lying flat. It is better than it used to be; at first I was not able to lie flat even for a bag change without significant discomfort. I was hoping for some info and tips because the way I have to sleep now causes a measure of personal inconvenience that I want to try and eliminate.

 

Linda, the scar tissue seems to run deep. I had a number of CT scans while still in the hospital to monitor my need for Jackson-Pratt drains I had. No one remarked on the scar tissue, so I'm thinking it either didn't show up well on those scans or it was nothing out of the ordinary. I was far too weak for a long time even to sit up in bed for more than a few minutes. Standing up was herculean, and walking across the room using a wheeled walker was a torment like no other, so I think I have missed the window in which my scar tissue was pliable enough for me to take advantage and ensure better range of motion. It's a shame, but there it is.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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dogtalkerer
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January 25, 2020 4:46 pm  

so you have complete unencumbered flexibility since pre-surgery? just can't lie flat on your back?     the less you move, the less you'll move.


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SqueakyandLiza
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January 27, 2020 3:27 am  
Posted by: @ileostony

I'd like to clarify something. I'm not in pain. I only become uncomfortable if I lie flat for too long, so that pretty much means no sleeping at night lying flat. It is better than it used to be; at first I was not able to lie flat even for a bag change without significant discomfort. I was hoping for some info and tips because the way I have to sleep now causes a measure of personal inconvenience that I want to try and eliminate.

Hi Tony, 

I’m happy to hear you are not in pain. As far as sleeping, have you tried propping your upper body up a bit, so your stomach area isn’t stretched out quite as much?  Or maybe putting a pillow under your knees? When I had my MRI the other day, they put a pillow under my knees and it made lying on my back on the table thing much more tolerable. 

I hope you figure something out. It is hard when you can’t sleep in the position you want to. I have been struggling with that too, only I have trouble sleeping on my side, which is where I always slept before. 

-Liza
“May your day be bright and your bag be light.”


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