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Ileostomy

Sat Nov 23, 2019 3:45 pm
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Hi, just joined this site, looking to chat to people in the same boat. I had an ileostomy 8weeks ago and feel a little over whelmed by everything at the moment. 65 female, married 3children, 6 grandchildren. Still working full time although I'm off sick at the moment. Love animals have 3 dogs and volunteer for rescues. Anyone who wants a chat ?

 

 

These are the top 5 issues ostomates face:

1. Dating and relationships
2. Concealing the pouch
3. Foods to eat and avoid
4. Losing or gaining weight
5. Pouch ballooning

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Sat Nov 23, 2019 4:45 pm

Hi Jules and welcome to MAO.  Having an ileostomy just 8 weeks in IS overwhelming!  For me it has been 3 plus years with an ileo but I remember the beginning very well like it were yesterday.  Yes there will be frustrations along the way, but it does get better, little by little.  I love animals too and have a fondness for ferrets.  They are a lot of fun and easy to train.

 

Sat Nov 23, 2019 7:29 pm

Welcome to MAO Jules.  I had my ileostomy in 1987. You have come to the right place for information. I love animals too, although I don’t have any at this time.  I have one son and three grandchildren. I am retired .

,Rebecca

Sat Nov 23, 2019 8:53 pm

Welcome ! I stepped away from the group for a while only to come back and reconnect with amazing people ! Hope you resting and feeling well ! Where are you from ? I am from Ontario Canada 

Sat Nov 23, 2019 9:02 pm

Hi Jules,

  Welcome aboard.  Grab a drink, plop on the couch and feel free to chime right in.  My first few weeks is just a blur.  About all I remember is waking up each morning hoping it was all a bad dream and then touching my abdomen and feeling my bag.  I think I finally stopped doing that each morning just a few months ago, and I got my osto-mess in Sep of 2014. 

 

regards,

bob

Sat Nov 23, 2019 10:27 pm

 Welcome aboard as Bob said  feel free to join in and reply to any of the post. 

Sun Nov 24, 2019 12:42 am

Hi Jules....welcome to MAO..I had my ileostomy in 1999 and can still remember how punk and weak I felt..went back to work 8 weeks after because thats the most time insurance would pay for...the weakness was so bad I had to use two hands to use a stapler gun for 1 staple...it gets better each day and eventually the ileo nightmare will end..we learn all the dos and donts and this site will be really helpful for you.

Rev Traci I live in Ontario too...welcome back

Cheers

Angela

Sun Nov 24, 2019 3:10 am

Thank you all for the lovely welcome. I am in London, England. 

Not getting much sleep since my op and shattered every day, did anyone have upper back and chest pains after ? Thought it was due to sleeping on my back but so painful I have to get up several times in the night, seen gp as much use as a chocolate teapot.

 

Sun Nov 24, 2019 3:45 am

Hello Jules23.

Welcome to the MAO site and I am so pleased to see that you have had so many positive and helpful replies to your post.  Of course, having a stoma takes some getting used to and it can seem a bit overwhelming to begin with. However, most people settle into a routine an manage their new set of circumstances to the best of their ability. I'm sure you will be fine once you get the hang of it. 

By the way , I am about 30 miles North of you in the market town of Hitchin.

My wife and I also love animals  and (newyorktorque)have had some wonderful experiences with our ferrets in the distant past. 

Best wiszhes

Bill

Sun Nov 24, 2019 4:19 am
Bill wrote:

Hello Jules23.

Welcome to the MAO site and I am so pleased to see that you have had so many positive and helpful replies to your post.  Of course, having a stoma takes some getting used to and it can seem a bit overwhelming to begin with. However, most people settle into a routine an manage their new set of circumstances to the best of their ability. I'm sure you will be fine once you get the hang of it. 

By the way , I am about 30 miles North of you in the market town of Hitchin.

My wife and I also love animals  and (newyorktorque)have had some wonderful experiences with our ferrets in the distant past. 

Best wiszhes

Bill

 


Hi Bill. Thanks for your reply, I am not too far from you Barnet, its still a London borough but also has the herts in address . I must admit I don't know much about ferrets, we only have dogs at the moment. Growing up (we lived with my grandad) we had a menagerie, chickens, rabbits, rats, mice, cats and dogs all got along great.

I miss those days, I must admit my dogs give me a reason to get up in the morning and I would be lost without them. 

I will now be looking up ferrets, ha ha although couldn't have any here as my 3 are terriers. Nice to hear from someone local.

Take care. Jules

Sun Nov 24, 2019 5:39 am
britathrt60 wrote:

Hi Jules....welcome to MAO..I had my ileostomy in 1999 and can still remember how punk and weak I felt..went back to work 8 weeks after because thats the most time insurance would pay for...the weakness was so bad I had to use two hands to use a stapler gun for 1 staple...it gets better each day and eventually the ileo nightmare will end..we learn all the dos and donts and this site will be really helpful for you.

Rev Traci I live in Ontario too...welcome back

Cheers

Angela


Thanks Angela, it was a bit of a shock I went in to have a colostomy and woke up to an ileo. Things worse than they thought. Just got to get on with it, funny thing is the first 3 weeks were a doddle, now have other stuff going wrong, keep thinking I will wake up and its all been a bad dream.

Had 15 years of agony and just want my life back, been so long since I have been able to join in with stuff.

Family, sisters although were sympathetic at times got quite abrasive after a few years, was told pull yourself together, take some more painkillers etc as I missed a few Xmas, birthday celebrations. They had no idea what it was like..I am determined to see this through and get back to normal, whatever normal is.

People in the same boat know, and it helps to know I am not on my own, it has felt like it some days.

Thank you again

Jules



Last edited by Jules23 on Sun Nov 24, 2019 6:07 am; edited 1 time in total
Sun Nov 24, 2019 6:05 am
Morning glory wrote:

Welcome to MAO Jules.  I had my ileostomy in 1987. You have come to the right place for information. I love animals too, although I don’t have any at this time.  I have one son and three grandchildren. I am retired .

,Rebecca


Thanks, just need to believe things will get better, not feeling so good at the moment.

J

Sun Nov 24, 2019 8:15 am

Hello, welcome to site!

Sun Nov 24, 2019 8:40 am
honestabe wrote:

Hello, welcome to site!

 

    Thank you.

Sun Nov 24, 2019 9:58 am

Hi Jules i,ve had my ileo. for 34yrs. it wasnt a suprise for me as i was very sick from crohns/colitis and needed surgery, but after being released from hospital and having to do the first change of apparatus my self was daunting being weak, tired, it was really a challenge, but like my surgeon said to accept the challenge and take control and make the best of it. Good luck and ask any questions someone will have an answer.  

Sun Nov 24, 2019 10:23 am
ron in mich wrote:

Hi Jules i,ve had my ileo. for 34yrs. it wasnt a suprise for me as i was very sick from crohns/colitis and needed surgery, but after being released from hospital and having to do the first change of apparatus my self was daunting being weak, tired, it was really a challenge, but like my surgeon said to accept the challenge and take control and make the best of it. Good luck and ask any questions someone will have an answer.  


Wow 34 years, I'm just a virgin then. Eating is a bit of a problem at the moment, everything very bland, not allowed fruit or veg yet. High out put is a nightmare but they said it would settle.

I hate that I am so tired all the time, my dogs are wondering where their long walks have gone as can only manage short ones at the moment. How did you manage your diet ? Can you remember, not saying you have a memory problem but yours was quite a while ago.

Me, I cannot remember what I had for lunch,  I get what we call senior moments.

Sun Nov 24, 2019 11:48 am

Welcome jules,

I hope you find comfort here as we are all stuck in the same boat.   having a stoma is the basic denominator here. 

I just joined this august 2019. and found a wealth of comfort and information..  you are just months or so old with a stoma.  I recall the mess dealing with leaks and various products out there.  you find emotional  and educational support here and possibly will  make besties here for a long time.  there are veternas here with  a stoma and newbies like us.   its a learning process for us newbies.  you just hang in there. I wish I knew about this site 2 years ago. would of been in a better place for sure.. good luck and keep up on the replies and posts.  

What I nomrally do before I reply to a post is check out the postee's profile.  to get an idea what their story is. then reply. The people without profiles? I don't usually bother with them.  its a share and share alike deal the way I see it. if you dont show me yours, I am stuck. I showed you mind  ha ha. 

Keep in mind some folks on here are looking to meet, and greet and even date. but more improtantly, some are here to give and get support. you may even learn a few tricks to keeping those leaks at bay. for example. 

as for family? some suck and some dont suck as much.  thats why we are here. we dont suck..  its a disgusting, embarrassing jouney where here you will find your way.  and no one cares you poop in a bag.  we all do.

 

good luck and welcome again.--Warrior

Sun Nov 24, 2019 12:22 pm

Thank you for the tips on profiles, didn't cross my mind. I did notice though that many are in america and Canada.. That's too far to meet for a coffee, well I say coffee because that's the norm,

I hate coffee mine would be a tea ha ha

Sun Nov 24, 2019 12:39 pm
britathrt60 wrote:

Hi Jules....welcome to MAO..I had my ileostomy in 1999 and can still remember how punk and weak I felt..went back to work 8 weeks after because thats the most time insurance would pay for...the weakness was so bad I had to use two hands to use a stapler gun for 1 staple...it gets better each day and eventually the ileo nightmare will end..we learn all the dos and donts and this site will be really helpful for you.

Rev Traci I live in Ontario too...welcome back

Cheers

Angela

Angela..........I don't think using a stapler to keep your barrier on is such a good idea.  If you peel the paper off on the backside of the barrier it has adhesive on it to make it stick to your skin.  Staples are very messy, make you bleed, hurt like heck and can give you tetanus if they're not made of stainless steel.  C'mon girl.......get with it!

;O)

 

Sorry...........couldn't resist!

bob

Sun Nov 24, 2019 1:11 pm
w30bob wrote:

Angela..........I don't think using a stapler to keep your barrier on is such a good idea.  If you peel the paper off on the backside of the barrier it has adhesive on it to make it stick to your skin.  Staples are very messy, make you bleed, hurt like heck and can give you tetanus if they're not made of stainless steel.  C'mon girl.......get with it!

;O)

 

Sorry...........couldn't resist!

bob



Sun Nov 24, 2019 1:16 pm
w30bob wrote:

Angela..........I don't think using a stapler to keep your barrier on is such a good idea.  If you peel the paper off on the backside of the barrier it has adhesive on it to make it stick to your skin.  Staples are very messy, make you bleed, hurt like heck and can give you tetanus if they're not made of stainless steel.  C'mon girl.......get with it!

;O)

 

Sorry...........couldn't resist!

bob

Bob, you have way too much time on your hands.  but cute. 

Sun Nov 24, 2019 1:18 pm
warrior wrote:

Bob, you have way too much time on your hands.  but cute. 

Ha ha love it !



Sun Nov 24, 2019 1:24 pm
Jules23 jwrote:

Thank you for the tips on profiles, didn't cross my mind. I did notice though that many are in america and Canada.. That's too far to meet for a coffee, well I say coffee because that's the norm,

I hate coffee mine would be a tea ha ha

Jules, a cup of Tea , decafe, works for me.  never liked coffee.  as for USA vs. Canada and UK people... hmm well I find there's a bunch of people scattered all over. I feel there are more UK osties, than American.  just my expereince.. but who can tell.  if you find some locals, and you should, that would be great. awhile back I asked some NJ osties about a get together... and  someone from pennsylvania replied.. saying she visits her home town in NJ... for holidays... which happens to be 15 mins. from me.  go figure.. but none of the  osties in NJ I asked even replied to the idea.  so am thinking it might be too soon to ask.  whatever.. you be patient  enough, they will come around. :)  

Sun Nov 24, 2019 1:28 pm
Jules23 wrote:





Sun Nov 24, 2019 8:21 pm

Hi Jules.  The next time you walk into a room and totally forgot why you were going in there once you arrived, thats not a senior moment.  Thats natures way of telling you you need more exercise.

Mon Nov 25, 2019 12:46 am
warrior wrote:

Bob, you have way too much time on your hands.  but cute. 


Bob  you are way too funny!  I'm still laughing out loud...could be a good blonde joke too and I am one so seriously thanks for making me laugh...I really believe laughter is the best medicine..

Cheers Matey

Angela

 

Mon Nov 25, 2019 1:38 am
Jules23 wrote:


Thanks Angela, it was a bit of a shock I went in to have a colostomy and woke up to an ileo. Things worse than they thought. Just got to get on with it, funny thing is the first 3 weeks were a doddle, now have other stuff going wrong, keep thinking I will wake up and its all been a bad dream.

Had 15 years of agony and just want my life back, been so long since I have been able to join in with stuff.

Family, sisters although were sympathetic at times got quite abrasive after a few years, was told pull yourself together, take some more painkillers etc as I missed a few Xmas, birthday celebrations. They had no idea what it was like..I am determined to see this through and get back to normal, whatever normal is.

People in the same boat know, and it helps to know I am not on my own, it has felt like it some days.

Thank you again

Jules

Hi Jules..I know what you mean about missing out on family stuff etc. I had many painful years before my ileo too and people who dont have what we do dont understand...I remember trying so hard not to limp because of the pain and constantly apologizing for not being able to do stuff...we are in the same boat and you are on your way to a much better life.....given time this journey will be a better one for you and this site is so helpful...if you want a good laugh keep reading notifications Bob is hilarious and has me laughing out loud at some of the stuff he comes up with..laughter is good too..there are a lot of wonderful, funny, compassionate people here.

Take care of yourself

Angela

Mon Nov 25, 2019 4:08 am

Thanks Angela, we all need a Bob in our lives. Have looked at some of his posts ha ha.getting there but can't see a light at the end of the tunnel yet. Have other stuff going wrong now.

I Will get there !

Jules

Mon Nov 25, 2019 10:23 am
Jules23 wrote:


Wow 34 years, I'm just a virgin then. Eating is a bit of a problem at the moment, everything very bland, not allowed fruit or veg yet. High out put is a nightmare but they said it would settle.

I hate that I am so tired all the time, my dogs are wondering where their long walks have gone as can only manage short ones at the moment. How did you manage your diet ? Can you remember, not saying you have a memory problem but yours was quite a while ago.

Me, I cannot remember what I had for lunch,  I get what we call senior moments.


Hi Jules when i first got my ileo. i ate small meals, soups, yogurt, pasta, toast with peanut butter, scrambled eggs, i had resection surgery last year due to crohns and my stoma was moved from right side to left and it was like starting all over again, small meals no gassy food or hard to digest like raw fruits or veggies. i also got a small blender and started making fruit smoothies.  

Mon Nov 25, 2019 2:01 pm

I had horrible back and shoulder pain after surgery! I slept with no less than probably 6 pillows for weeks afterward! I found it really helpful to be propped up and have pillows wedged under both sides of me. My abdominal muscles were so weak after surgery that I couldn’t even stand up straight to walk so my back muscles were trying to compensate. I tried to move as much as I could and I got stronger every day. All that pain is now just a “happy” memory. You’ll get there!

Jules23 wrote:

Thank you all for the lovely welcome. I am in London, England. 

Not getting much sleep since my op and shattered every day, did anyone have upper back and chest pains after ? Thought it was due to sleeping on my back but so painful I have to get up several times in the night, seen gp as much use as a chocolate teapot.

 



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