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ChrisandBagpus
(@chrisandbagpus)
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Joined: 9 months ago
Posts: 145
February 26, 2020 9:12 am  

Hi

This is Chris and his new (friend) Bagpus joining the forum

I had a loop colostomy 5 weeks ago with the idea of a reversal in the future all depend on how the rectal cancer treatment goes.

Eric's info has been a fantastic resource for me stumbling in the dark after emergency stoma surgery and the first 6 bags all leaked despite being fitted by the hospital staff. I didn't know about balloning and pancaking and they were to busy to consider. Anyway I'm here and I hope to contribute back to the forum

Subject I have ideas are templates and bag tweeks hope to post soon

help I might need is what the fail to tell you about Wind, Pain, discomfort and tiredness and the causes and solutions?

Thank you Eric so much for what you do!!!

Chris

 

Colostomy Jan 2020


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LLNorth
(@llholiday)
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Posts: 250
February 26, 2020 11:00 am  

Welcome, Chris!

I have come to think that the reason health professionals don’t tell us everything about living with a new stoma is 1) so we don’t get overwhelmed with new information and 2) we might not experience them. How to anticipate things I don’t know - I did at first call  the stoma nurse and her department a few times to ask “is this normal?” (Whatever normal means!). I am a rectal cancer patient, also - best wishes to you and your little buddy.

LL

Colostomy 4/30/18
I love the smell of coffee in the morning. It smells like .... victory.


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john68
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February 26, 2020 12:03 pm  

Hi Chris, You are very welcome to the forum. LL has just hit the nail on the head. Take it one step and one day at a time. Did ya really ever look at the instruction manual for a car! Well it would fry yer head. Just start driving carefully and keep the speed down. Before you know it you will be on the journey 

ileostomy 31st August 1994 for Crohns


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Dona
 Dona
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Posts: 816
February 26, 2020 12:23 pm  

welcome Chris,

You will get the hang of this. It is overwhelming at first ( and sometimes at second too). But it does work. Just get your health back. At least you still have your sense of humor. That goes a long way.

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


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SqueakyandLiza
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Posts: 640
February 26, 2020 12:25 pm  

Welcome Chris and Bagpus,

Squeaky and I were in a similar situation, being thrown together after an emergency surgery. We were lucky to have home health care after coming home from the hospital. I have only recently learned that not everyone who gets a stoma is “gutted like a fish” (my doctor’s words).  Even with the nurse changing out my ostomy when she came to do my wound vacuum pump dressing, I still had lots of leaks. 

Just keep trying things. Don’t be afraid to ask for samples from the ostomy companies. You will eventually find what works for you. Definitely see a stoma nurse. They know so much more about stomas than the nurses in the hospital.

Good Luck to the two of you. Please ask any questions. Most likely there will be someone here who has experienced the same thing. 

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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Jattzl
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Posts: 81
February 27, 2020 12:11 am  

Hi Chris 

I’m sorry for what brought you here but am glad you found Eric hope the forum can help.  I do not have the same emergency aspect as you. I am often in awe of what that would have been like. Mine was one of many years of sickness and fighting an ostomy.

I did share the same feeling of not getting as much information at the hospital as I needed. Everyone is different with the level of details that they need. I need a lot!  I was also lucky enough to have visits from nurse at home for while which helped tons.  There was much more trial and error and more involved than I prepared for. I don’t want to worry you but it was a good year before I’d say I was comfortable or confident I guess I should say.

Be gentle with yourself. It does get better.  

51 years Type 1 Diabetes, insulin pump, CGM, neurological complications, retinopathy, and autoimmune CIDP. Nerve damage led to ileostomy in 1/2015.


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ChrisandBagpus
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February 27, 2020 3:32 am  

Hi New friends

Thanks for all the warm welcomes.

When you get thrown in the deep end in life its always a big challenge and sometimes hard to "Look on the bright side of life"

I think when Bagpus was born the stoma nurses were more scared of him more that me possibly  You see he was rather big,fat and swollen also not well sited it took them several weeks until they knew my sense of humor that "It was my fault to come in as an emergency on the weekend" I can't wear a belt as Bagpus sit just there also right on the above the hip bone.

I've learnt a lot tried around 8 different supplies and now seem to have some success with the Mio 2 click drainable very practical and adaptable

Thanks to Eric's info I now feel as I have told the nurses I've done the degree course in ostomy's I just haven't done the practical yet!!

 

By the way Bagpus is a 1970 children's program a Magical cloth cat.

 

Colostomy Jan 2020


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LLNorth
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February 27, 2020 12:03 pm  

Love this! Magical Bagpus!

Colostomy 4/30/18
I love the smell of coffee in the morning. It smells like .... victory.


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john68
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Posts: 1636
February 27, 2020 12:24 pm  
  1. Ah Chris that’s bringing back a lot of memories, Sunday morning eating cereal in my PJ,s watching bagpuss 😃 by any chance are you in the UK! And if so where ya a Wombles fan.

ileostomy 31st August 1994 for Crohns


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ChrisandBagpus
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February 28, 2020 4:31 am  

John68

Yes in South west near Cheddar-strawberries and cheese :lol: 

Will never forget Uncle Bulgaria

question are they still living on the common?

Colostomy Jan 2020


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john68
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February 28, 2020 6:23 am  

I think with the rise of recycling they have done pretty well for themselves and have moved to the coast 😂

ileostomy 31st August 1994 for Crohns


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danbh
(@danbh)
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Posts: 89
February 28, 2020 8:14 pm  

Hi Chris,

Don't ask the nurses in the hospital anything about Ostomy. I was about to be released from the hospital, after rectal cancer surgery (where they closed my butt out). My bag was a baloon, ready to explode, so I asked the nurse at the station if anyone can show me how to release the air out, all I got from her was " a visiting nurse will show you at home in the next few days". None of them wants anything to do with Ostomy, and will not touch it with a ten foot pole.

See an Ostomy nurse, they are not afraid of the smell, nor what they find in the bag, for them it is normal, and they will show you everything.

Wish you & bagpus all the best

Dan

 


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ChrisandBagpus
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February 29, 2020 3:27 am  

@danbh

HeHe It reminds me of when I was in the hospital the first time the stoma nurses came to change the bag because of a leak and its was like a barrage balloon Bagpus was trying to lift me of the bed! When they peeled the bag off even the nearly dead in the ward tried to find their walking stick an leave, fair to say the stench was quite high!!

The nurse exclaimed "what have you been eating to produce all this output" when the screen were pulled back it was a picture to see the other patients faces and the nurses rushing to open windows -Bagpus never fails to entertain :lol: 

Yes the nurses on the ward either have some experience or run a mile, to be honest they were quite good with me with the odd exception. Whilst I was in hospital the longest serving bag more than 24 hours was put on by me and a male nurse who has Parkinson (Yes that's right Richard is an amazing male nurse still working with Parkinson ) it would of been quite funny to see as we were both shaking trying to cut the template and stick it down.

I'm learning that we have a lot to find out for ourselves. that's why I'm so grateful for this forum and want to offer something back.

When you've had emergency surgery its a huge shock to deal with afterward  the stoma, the future radio and chemo and more surgery. Dan I to have rectal cancer and its not a particularly easy one apparently.

Wish you all the best as well

Chris

 

Colostomy Jan 2020


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LK
 LK
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February 29, 2020 5:40 am  

@chrisandbagpus....welcome to VO! You have  found my  haven of peace of mind. Eric has  done a great service here.

Emergency surgery is a tough one to deal with. I welcomed my appreciated ostomy with open arms after a good 50 years of...well, it's a very long story!!!  I think the exhaustion and fatigue level is pretty much the norm. I  take a good easy digestible Vitamin B12 Complex, to help with this. It can give a more  yellow colour in urine,  no big deal. Drinking your fluids is very important to wash out the hangover affect of medications from surgery and pain killers. Get the rest your body tells you it needs and if you can, go for a walk everyday. Baby steps. 

Your in the right place. It can be slow on weekends for responses sometimes, but you will get them. No dumb questions here. You matter! All the best, be well!

Linda

 

Linda


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LLNorth
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Posts: 250
February 29, 2020 10:50 am  

@chrisandbagpus

Hello, Chris, I have been through a course of treatment that sounds similar to yours, and I want to tell you it was much easier than I might have expected. I had surgery first, then chemo, then radiation, then chemo again - and finished all this just a year ago. My latest checkup was this week and I am doing very well. It is a different way of life for sure, both managing the ostomy and getting onto the schedule of ongoing checkups and labs (I will admit I struggle a little with the latter) - and it is do-able, and a good thing. 

Your hospital story - goodness, when the nurse was showing me how to change my bag we were in a tiny bathroom, such close quarters, and the smell was so awful she actually went rushing to the nurses’ station  for room freshener! She spritzed it about five times, very quickly, and said, “That smells kind of nice, doesn’t it!” - talk about a positive attitude. 
LL

 

Colostomy 4/30/18
I love the smell of coffee in the morning. It smells like .... victory.


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ArchieB
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Posts: 31
February 29, 2020 1:03 pm  

@chrisandbagpus

Hi Chris,

I'm a newbie as well and I have/had rectal cancer as well, I had APR surgery recently (2 weeks ago) to remove the tumor so none of the plumbing for me is reversible. I have to wait for final pathology from the surgery to see if its more treatment or watch and wait. This site by far has some of the most comprehensive information you'll find in one space. Talking to others who actually have experience living with an Ostomy or going through similar treatments etc has been a huge boost for my moral going through this....welcome.  


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ChrisandBagpus
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Posts: 145
March 1, 2020 5:47 am  

Thank you all for your replies to my introduction.

It helps a great deal after surgery and the massive change in ability to do things. I was before a very active person building walls, constructing and fixing things. now drilling a hole in a wall is a big job. the inactivity is big mind screw without all the other associated pain, discomfort and endless wind.

The post have all be appreciated and helps to feel less isolated in a fog of the above.

Its help to feel your not alone and I sympathize with all the heartache and pain all you have suffered on your journey I hope I can contribute back to such an amazing community its just a shame we are all so far away from each other in miles

Love Light and Magic to you all

Chris

Colostomy Jan 2020


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john68
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Posts: 1636
March 1, 2020 6:33 am  

At the start it really feels like life will never return and normal will never be the same again. While some things never will you will be very surprised with what time and healing can do. Plus we all get Der at different speeds. 

ileostomy 31st August 1994 for Crohns


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VeganOstomy
(@veganostomy)
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March 2, 2020 2:38 pm  

Welcome aboard @chrisandbagpus! Thanks for joining us! 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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