Opinions on ileostomy reversal with Crohn's?

Looking for opinions on ileostomy reversal... My surgeon has told me I can, in fact, get this reversed as soon as next month. I'm wanting to be sure this is the thing to do. Just looking for others' opinions or what they would do in the same position. Being still new to this, there may be things I have no clue to think about before making this big decision. I also have Crohn's to factor in as well. Your thoughts?

If you have the chance, get it done. You're one of the lucky ones. A lot of us don't have that option.

I never had the option myself, but as I see it, if you don't have a reversal in 10 years' time, will you be thinking, "I wish I had that reversal, I'm sure it would have worked for me?" It's not an easy choice to make, and also possible in the future, you may need more surgery. Could you say to Dr. you need more time to think about it? I'm sure they would understand and not try to rush you into making a decision.

Hi Juniper, it sounds like something that most of us would jump at if we had the option, but it is surgery after all and not to be taken lightly. Could you get a second opinion? Is there a chance that if they reverse it, you might end up back where you started, in the situation that required the ileostomy in the first place? You might want to take some time to research it a bit more before you make a decision. Good luck.

All the best,

Terry

Hi Juniper.  I'm not a health care professional and I don't have an Ileostomy.  I'm an old guy with a colostomy.  So why am I writing to you?  I think you need to ask yourself some questions and evaluate the answers.   How did the ileostomy affect the Crohns?  Is your colon in good health?  If the reconnection bypasses the colon will you expect to spend a lot of time in the bathroom?  How're you doing with your ileo?  When we have parts of us taken away the time for our stuff to travel through is shortened and that should be anticipated.  Some folks think about a reversal as the greatest thing in the world.  I don't think an ostomy is the worst thing in the world. 

Keep asking questions and you'll make the right decision.  Don't rush it.

These are just my opinions.

Respectfully,

Mike

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hi Juniper,

I have had my ileostomy for many, MANY years due to ulcerative colitis. I can honestly say, the first year, I would have jumped at the option to have a reversal, despite having "backwash colitis" that extended into my small intestine. Both Crohn's and colitis are autoimmune diseases. It can recur and decide it's time to create some havoc again. I am not trying to be a downer at all... having the option of a reversal is wonderful. Just pointing out some things to consider. I would ask yourself if it didn't work and you end up having an ileostomy again, this time permanently, are you going to be able to accept that? How would you feel if you had to live through the effects of major Crohn's issues again? What are the odds, according to your doctors, of that happening?

I would likely take that into consideration as well.

For me, it's very clear-cut, even if presented the opportunity, I wouldn't. For me, too many years have passed, I would likely have to be potty trained again... lol, and I am not prepared to risk the possibility of having to go through it all again to arrive right back here. I am good as I am and quite comfortable with my ostomy and have been for a very long time. In other words, I have no regrets. At the end of the day, I think that may be the key. Would you have regrets, or be left wondering if you didn't take this opportunity? Whatever decision you make, be sure to be as informed as you can be. Ask LOTS of questions. Gather all the information you can from your medical professionals.

Personal experience stories are good too, but they are just that - personal and not consistent for everyone.

All the best, whatever you decide!

Sondra

Hi everyone,

Still working on the first operation even after three months. So having another operation is not happening yet. I understand reversal is apparently a lot simpler procedure though, so maybe not so daunting.

Also had an emergency ileostomy and I may or may not be able to get a so-called reversal. Reversal is not the right word to use. Our conditions remain. Nothing is reversed. Insides become outsides and outsides become insides again. Now you see it. Now you don't.

I hope I can have my ileostomy inside outed. Getting checked out again in the new year for any signs of UC or C. We have been altered permanently so function differently. It seems a long time to get the rhythm and the action back to our guts once it has been touched. I propose even years for the natural bowel movements to ever return to their unaltered frequency. Nothing is reversed. It's the wrong term to use. So much can have changed for different people. So much has changed anyway this year for millions of people.

Think before you change again. It could be hard all over again. Have our bits messed with again. Get your rhythm back... again!

I propose, reengineered instead of reversed. It's all different, we are all different, whichever way you look at it.

I am thinking of becoming an astronaut since I am now fully equipped for clean, clutter-free, non-normal bathroom equipment. Just plug my tubes in at either end and I can now board the HMS Enterprise 'Get Me Out Of Here' Ship... errr...no...boat.

If I can't get my inside outed then ok... we will see.

...I spend Christmas pondering your question also.

You will make the right choice...

At least Santa gave you a choice.

Kind regards.

Hi Morgan,   Clever but very thoughtful advice.

All the best,

Terry

Hello Ileo Girl! Juniper

My surgery was in 1997, my ileostomy was the best decision for my own set of circumstances. That being said, there are a lot of problems that can happen with both a resection and a reconnect of the small intestines, including but not limited to short bowel disease, which most of us most likely have from our first surgery. Also, I would highly recommend that you seek out a rheumatologist prior to your decision since chronic ulcerative colitis and Crohn's disease are both autoimmune conditions and the rheumatologist can help you tremendously. My Crohn's disease has now started to attack my body on the inside and is attacking me in all areas. Who knew it could do that? I now have several debilitating autoimmune conditions, all from chronic ulcerative colitis and Crohn's and my dysplasia. Good luck on whatever choice you make. Second and third options matter.

Your friendly

Little Baggy Guy!

Gordon.