Possible ileostomy

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313
Roz

Hi., im new on here so dont know if this is the right place to go.

I have very many bowel blockages and immense pai  due to adhesions caused by other operations. An ileostomy is a possibility due to the fact the suurgeon wouldnt be able to get the bowel attatched again due to the place the adhesions is situated.

Should i go for the ileostomy? 

JustMeRLB

Hi Roz, 

I’m sorry you’re going through this. I honestly think you are the only person who can decide this for you. 
All of us on here have been though our own journey on how we ended with our ostomy. 
Personally, I would look at the risks and benefits. With the pain and blockages it sounds like you have been having a hard time of it. What did your surgeon suggest/recommend? 

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warrior

absolutely.. once u research and hear pros and cons, its yur decision. take notes from eesponding members here.

no doubt pain will be gone tho.

i would suggest if going for the ileo..and no chance for reversal, take everything out.

large colon..anus..rectum. and get a barbie butt.

that's if , if  of course the large intestine is badly diseased.

Axl

Hello Roz

You don't mention any digestive tract disease only adhesions.

I wouldn't recommend such a drastic option until you have completely and utterly exhausted any techniques or home remedies for relieving blockages used by some throughout this site and elsewhere.

An ileostomy is a very serious decision and not to be taken lightly. I hope you can find a way to avoid the ileostomy . Ultimately it is a decision between you and your medical professional and don't neglect to seek other medical opinions.

Good luck

Axl

Bill

Hello Roz.
Thank you for a very pertinent question, which others have already said is a decision that you need to make for yourself.
If I was in this position (which I'm not), I would want to know if the proposed ileostomy would get rid of the pain or simply add more adhesions and more pain.
Scar tissue is a fantastic and necessary part of the healing process after surgery . However, as many on here know, it can create its own problems.
In some (very rare) cases, the scar tissue simply does not stop growing and eventually becomes fatal. My deceased friend suffered from such a condition and there was nothing that could be done for him. His departing had a very profound effect on the way I have viewed these things since.
Best wishes

Bill 

 
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Mysterious Mose

I agree with the consensus here. I cannot see how anyone here can give you definitive advice not knowing the details. An ileostomy is a big time life changing event. If there is no other option to give you a possibly pain free existence, then so be it. I have no experience with what you may be going through, but I do have an ileostomy. For me, there was no other choice. It was the ileostomy or death. Personally, had there been another realistic option, I would have pursued it. But, it boils down to this being your decision. Just be aware, that an ileostomy could have you emptying your bag a good 10-11 times a day unless you take supplements to slow things down. Even with a lower output ileostomy, you are looking at 5-6 times a day. As I said, it is a life changing event and that should be considered in your decision. But, pain can be something that forces decisions...

Daniel

Jayne
Reply to Axl

Ros,

Yes I iterate all that is being said here.

Try to do as much research as you can - and then list it all up - the pros and cons -

THEN ASK YOUR SURGEON / Dr QUESTIONS - and actually get to understand the answers. - anything unclear - ask again!

A second - professional [ unrelated hospital ] opinion is also good.

 

Do not rush in haste

 

AND MOST OF ALL NEVER MAKE AN ASSUMPTION - what you think you know,  may not be based on all the facts - Because Advice is very often focussed - for many reasons and clarity may or may not be directed.

 

NOW, I would like to add something that might seem a little 'oddball' or unnecessary - something once upon a time would never have occured to me to consider: Particulalrly if there is any new treatment or approach being considered:

And its this:

ASK SPECIFICALLY WHAT IS KNOWN ABOUT YOUR CONDITION AND ALSO THE ELEMENTS OF PROPOSED TREATMENT  THAT HAVE NOT BEEN DISCUSED!

This final question - can not be ignored - for your Medical profesionals are honour bound to provide you WITH ALL OF THE INFORMATION THAT THEY KNOW OR IS DOCUMENTED so that you are not in the dark about anything - ie SO YOU CAN COME TP A PROPERLY INFORMED DECISION -

known medically and legally as 'Informed Consent'

 

Good Luck

Jayne

 

Morning glory

Roz agree with the others on their posts. Please do your research.  This is a great site. Make an informed choice and be your own advocate. 

Roz

Hi everyone.,

Thankyou so much for all of your advice,  im going to now do 3 things:

  1. Do my research
  2. Do pros and cons
  3. Ask lot more questions from surgeon or even get a second opinion.

THankyou so much

Roz

Jayne
Reply to Bill

Bill

I was moved and newly informed concerning:

In some (very rare) cases, the scar tissue simply does not stop growing and eventually becomes fatal.

 

'Your' My deceased friend suffered from such a condition and there was nothing that could be done for him. His departing had a very profound effect on the way I have viewed these things since.

 

Family Friends and the surgeons, physcians and care team must have been particulalrly challenged ...

For this must have been a kind of 'active futility' - from the surgical front alone:  The protocol for management for such curcumstance must be continually under review - hopefully, along with so many other rare diseases the r+d is slow but ongoing.  *

 

MY condolences - we learn everyday How fortuneate each of our circumstances are - no matter how we personally endure.

 

  • I was interested to learn witin the medical press recently how the sheer volume of 'trawling the data' is assisted by the machine learning which now allows for an interesting possibility - And that is a specific Project, whereby a medic whom himself had a rare disease and who found - purly by chance - a chemical solution via a drug not purposed for the specific application.  What may raise a 'watch carefully' caveat - is also a possible 'balance' forward in the world of Pharma - for what were non profitable areas for the drug companies r+d focus, within a new project - which would, hitherto, been an impossible undertaking - is now underway:  There is a systematic absolutely thorough reviw of all known licenses meds - with a full cross reference new research focus which is likely to result in many newly purposed focus.  The not so obvious pro to this is the time bench saving for getting the licenses - 10 years as a min bench mark if working from scratch - And whilst one may say this is a Pharma Co dream upscale - the Rare Diseasees that many thousands of folk daily experience may find a window of advancement - Lets hope so.

 

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Take care

Jayne