Considering an Ileostomy: Seeking Advice

Hi, I'm new here so I don't know if this is the right place to go.

I have many bowel blockages and immense pain due to adhesions caused by other operations. An ileostomy is a possibility due to the fact the surgeon wouldn't be able to get the bowel attached again due to the place the adhesions are situated.

Should I go for the ileostomy?

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 through 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? 

Absolutely.. once you research and hear pros and cons, it's your decision. Take notes from responding members here.

No doubt pain will be gone though.

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, of course, the large intestine is badly diseased.

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

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 

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

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 focused - 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 that once upon a time would never have occurred to me to consider: Particularly if there is any new treatment or approach being considered:

And it's this:

Ask specifically what is known about your condition and also the elements of proposed treatment that have not been discussed!

This final question cannot be ignored - for your medical professionals are honor-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 - i.e., so you can come to a properly informed decision -

Known medically and legally as 'Informed Consent.'

 

Good luck,

Jayne

 

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

Hi everyone,

Thank you so much for all of your advice. I'm going to now do 3 things:

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

Thank you so much,

Roz

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, physicians, and care team must have been particularly challenged ...

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

 

My condolences - we learn every day how fortunate each of our circumstances are - no matter how we personally endure.

 

• I was interested to learn within 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 who himself had a rare disease and who found - purely 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 review of all known licensed meds - with a full cross-reference new research focus which is likely to result in many newly purposed focuses. The not so obvious pro to this is the time bench saving for getting the licenses - 10 years as a minimum benchmark if working from scratch - and whilst one may say this is a Pharma Co dream upscale - the rare diseases that many thousands of folk daily experience may find a window of advancement - let's hope so.

 

•  

 

Take care

Jayne