Community Forums

Hi from the UK... :)  

  RSS

mouse
(@mouse)
Registered
Joined: 8 months ago
Posts: 4
August 13, 2018 8:13 am  

Hi all,

I'm mouse, and I'm having (loop ileostomy) surgery this week.

It's exciting, because it'll give me more freedom after the healing process is up. It's scary because, well, it's surgery!

At the same time I'll be getting my anal sphincter muscle repaired. This was damaged, in the grand scheme of things, due to crohns disease, hence the need for an ileostomy.

I'm in my 20's, so this is my first actual major surgery I think, I've been under anesthetic a number of times but it was all for fairly simple procedures.

A bit scared would be putting it lightly, anyone have tips for quelling my pre-op nerves?

 


LK liked
Quote
VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 2117
August 13, 2018 8:55 am  

Welcome, Mouse! 

Pre-surgery jitters are totally normal. I found that learning what I could helped to ease my fears and just getting my stuff in order (i.e. Making sure any upcoming bills are paid) also helped to keep me relaxed.

Are you already packed up for the hospital? Do you have anything to keep you comfortable while you're there? Music, books, etc.

Best of luck to you! Let us know how things go :) 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


LK liked
ReplyQuote
Bubbles
(@bubbles)
Registered
Joined: 1 year ago
Posts: 244
August 13, 2018 9:04 am  

Hi Mouse , 

Welcome . I prepared for surgery by looking at YouTube videos . Mainly Vegan Ostomy and The Front Butt YouTuber . Both are a great source of info . Make sure you leave the hospital with enough supplies . I was sent home with 1 changing . It took 2 weeks to get supplies in . So get stocked up with hospital. 


LK and VeganOstomy liked
ReplyQuote
john68
(@john68)
Registered
Joined: 2 years ago
Posts: 1191
August 13, 2018 9:08 am  

Hi Mouse, If any one said they weren't nervous some thing would be wrong, I was 24 when is had my ostomy and from my experience it won,t stop you doing any thing young folk like to do. Support is important no matter where is comes from and never be afraid to ask questions. I am in the UK as well and the NHS has some brilliant folk in it. All the very best and read this site/forum. Its very useful believe me. :-) 

ileostomy 31st August 1994 for Crohns


LK and VeganOstomy liked
ReplyQuote
Dona
 Dona
(@dona)
Registered
Joined: 2 years ago
Posts: 618
August 13, 2018 9:19 am  

Hello Mouse and welcome,

As others have said, its perfectly normal to be frightened of this. BUT know you will get through it to a healthier life. Everyone is scared.  My first thought as I came out of the anesthesia was 'HAPPY" like a shout in my mind. Done!.

And pretty soon, there will be that day when you are just going about your life and you forget you have an ostomy. It will happen.

Be well.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


LK and VeganOstomy liked
ReplyQuote
mouse
(@mouse)
Registered
Joined: 8 months ago
Posts: 4
August 13, 2018 10:17 am  

Thanks for the replies everyone!

I'm currently washing some clothes for the hospital stay, that's as far as I've prepared packing wise for the trip. I've written a list with the help of your guide of what to take to hospital, Eric! Thanks. :)

It's relieving to know it's normal to be a bit scared! I'm currently trying to fill the days up to surgery with positive distractions, it's hard to focus though. Just can't wait til it's done with really... :)

I already have a couple of visitors planned, and a rough schedule of what my stay will look like. I won't actually learn to change my bag til next week, after the surgery at the end of this week. So a weekend recovering and then the learning curve starts.

I'm trying to be optimistic, joking with my friends about my 'exorcism' bowel prep and so on, but I know anesthetic knocks my mood down big time in the days following an operation.

A bit of a ramble. :P


LK and VeganOstomy liked
ReplyQuote
Derek
(@derek)
Registered
Joined: 9 months ago
Posts: 26
August 13, 2018 10:58 am  

Hi mouse.

Im originally from the uk but live in mexico now .

I just had my ostomy done two months ago.yes i was worried and all that goes with it.was supposed to take 3 days in hospital ,cost to me acceptable.turned out to be 10 days in hospital 5 times more expensive then i got sepsis,another 15 days interned and more expensive than the original op!!

The financial cost has changed my life much more than the ostomy.

Here there is no after care support,only tuition i got was from the surgeon who showed me how to put on and take off the appliances and how to clean the stoma and skin.

After that its a quick learning curve and i am still learning.erics videos helped tremendously and subsequent advice recieved here is invaluable but you will soon get into your own way of doing things and adapting to the situation.it is quite easy.

Good luck and dont fret ,prepare for your homecoming.

 


LK and VeganOstomy liked
ReplyQuote
Robert
(@njewell1)
Registered
Joined: 2 years ago
Posts: 669
August 13, 2018 11:07 am  

Hey Mouse like everybody is saying if you weren't nervous something would be wrong . One good part is when you wake up it will all be over but the healing and learning . Also like others are saying do your homework before so you will know more about what to expect afterwards . I wasn't as ready as I probably could have been so there were a few surprises afterward for me but its all part of the learning experience you will get it and you will do just fine . Oh ya I too have an Ileostomy . Also like they say support and being prepared is the key to everything . Anyway Mouse welcome to the group and Best of Luck with your surgery !

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


LK and VeganOstomy liked
ReplyQuote
john68
(@john68)
Registered
Joined: 2 years ago
Posts: 1191
August 13, 2018 1:50 pm  

Hi Mouse, A point I meant to add to my post is getting a good spot on your tummy for the stoma. The surgeon will probably do this with you and what I mean by good spot is a site where the wafer will not be in a crease and the wafer will not sit over your belly button

ileostomy 31st August 1994 for Crohns


Dona and LK liked
ReplyQuote
sjlovestosing
(@sjlovestosing)
Registered
Joined: 12 months ago
Posts: 163
August 15, 2018 7:47 am  

Hello Mouse and Welcome,

I recently had surgery and was scared as you are now. Eric is so right in saying to educate yourself as much as possible. Knowing what you are going into alleviates some of  your concerns.  This site is a gold mine of information and will be of great help to you as it has been to me. Also, the advice of all the other ostomates who wrote before me are invaluable.

After surgery and healing, it will continue to be a learning experience. I know that I am still researching and learning! Also, you will gain confidence as you find the routine that is best for you. Be patient with yourself and your healing - it does take a while before you'll be in that feel good place. 

Wishing you God's blessing and healing in all this.

Stella


Dona and LK liked
ReplyQuote
mouse
(@mouse)
Registered
Joined: 8 months ago
Posts: 4
August 15, 2018 8:49 am  

Thank you all! It means a lot to me to know there are so many supportive ostomates out there! :)


LK, Dona and VeganOstomy liked
ReplyQuote
mouse
(@mouse)
Registered
Joined: 8 months ago
Posts: 4
April 9, 2019 10:22 am  

Hi folks!

An update... I still haven't had my surgery. When I went for it back in August, it was realised that I had some heart trouble and it wouldn't be safe to proceed. I have since been prescribed heart medication, cleared for surgery by the anesthetists, and been seen by cardiology - so my surgery can go ahead. It's just a question of when...

It's been a horribly frustrating 8 months so far. I rarely leave the house (due in part to my incontinence).

I'm not sure when my surgery will happen. Last time I inquired I was told "months" so I'm basically hanging around in pain and distress. It's frustrating to say the least.


Dona and LK liked
ReplyQuote
john68
(@john68)
Registered
Joined: 2 years ago
Posts: 1191
April 9, 2019 11:07 am  

Hi Mouse, that’s frustrating to be left waiting but on the other hand good to have found out about the heart problem so it could be medicated. I am in the UK also and while we enjoy free health care we know too well how long waiting lists are. I can suggest contacting your GP to write a letter explaining the discomfort and problems the delay is having. It’s something that may help moving surgery along. It’s also worth bearing in mind when giving approximate dates the NHS is always giving the very worst case. But please check 

ileostomy 31st August 1994 for Crohns


Dona and LK liked
ReplyQuote
Dona
 Dona
(@dona)
Registered
Joined: 2 years ago
Posts: 618
April 9, 2019 5:34 pm  

Hello Mouse,

So sorry to hear you are dealing with the heart issue too. When you are ready for surgery , it will come as a great relief. We all remember living our lives on the run from the bed to the toilet.

Also be sure to tell people who schedule these things that this is a real quality of life issue. As you say, pain, distress and just plane wearying. I was loosing several pounds a week before I got my illiostomy.

Best of luck in getting all this sorted.

Keep in touch here and keep asking questions.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


LK liked
ReplyQuote
sjlovestosing
(@sjlovestosing)
Registered
Joined: 12 months ago
Posts: 163
April 10, 2019 9:02 am  

Hello Mouse,

I am very sorry to hear about your predicament. I don't know what it is like to have to wait for so long for much needed surgery. Hopefully, it will be soon. I will say a prayer that things will speed along. Take care and God bless.

Stella


LK and Dona liked
ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 2117
April 12, 2019 9:57 am  

Mouse, thank you for the update. 

Waiting, especially under those circumstances, must be frustrating. I am glad that your heart trouble is being addressed and that it was caught before the surgery. You'll be in better health going into it, and that's always a good thing. 

I know what it's like to live with incontinence, so I completely empathize and hope that surgery happens soon.  

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


LK and Dona liked
ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 348
April 12, 2019 7:37 pm  

Mouse...I hope you are as well as can be. I too have dealt with incontinence. The first time I was walking my dogs. Teenagers behind me, so you can imagine the rip roaring tie they had! I joked that I believe in karma. I brought forth the quality of life thing to my surgeon and asked if he would let his wife run around with that issue. Surgery went from a long waiting list to 4 days away. My necessary ileostomy is so appreciated. Try not to to be too patient with your symptoms, quality of life is bigger then most realize and something I found doctors take very seriously. If your not in front of them they may think you are doing just fine with few events or problems. The severity of your situation can only be old by you to the surgeon. I would certainly let them know I am getting fed up, this is too long of a wait. As far as patients go,  they will always take life and death seriously first, but if things increase in severity, you are the only one who can tell them so. Be encouraged to go back and update them. all the best Mouse. Be well ASAP.

Linda


ReplyQuote
Share:

  
Working

Please Login or Register