Is Reconnection Worth the Side Effects?

I am trying to decide if reconnection is worth the side effects. I was told that I could have runny stools up to 8 a day, and they would be uncontrollable.

Any insight would greatly help!

Tiffany

Hi Tiff.. I was just looking over your profile. Having an ileo is one thing.. but unless I read something wrong, being wheelchair-bound is another..

We have had a few members ask this same question: reconnecting.

I also saw where you asked about j-pouch possibility.

I'm thinking you chose not to have that.

Are you able to stand to empty? Sit on the loo without difficulty? I think it's called transferring.. from one position to another.

I too have an ileo. It's difficult to imagine being wheelchair-bound and trying to empty.

So think about the reconnect.. from what I have read here, you are right. Increased bowel frequency and some accidents.. most were able to manage it though. No regrets I'm told.. just another adjustment. And life goes on..

It will require some research whether it's right for you or not. Folks will chime in. Be patient.

Wish you the best. Keep us posted.

I can stand but not balance or walk.

I am pretty busy (9 grandchildren), always on the go. So the prospect of more difficulties scares me.

Thanks for replying - Tiffany

Vertigo... I get that with hearing loss... but... jumping jelly 🫘 beans... all those grandkids! You have better things to do than pooping yourself with a reconnect... those kids will give you a workout... enjoy that rather than the alternative. You got this.

Hi Tiffany, The biggest factor in a successful reconnection is whether you have your colon or not. Your bio doesn't say, but with an ileostomy, I'm thinking you probably don't. Frequent bowel movements is one thing (being tied to your bathroom) is how I've heard it described. The other factor is the nature of the output from an ileostomy. It's very caustic and hard on your skin, as you probably know. One complaint I've heard is constant irritation and skin breakdown around the anus from the caustic output. I was given the choice of having a reversal, and these are the main reasons I decided against it. Good luck with your decision-making!

Terry

How to Get Back to Activity after Ostomy Surgery with Kimberly | Hollister

You're right, I don't have a colon.

I have heard the same horror stories; I'm not jumping into this decision.

Thanks! Tiffany

Hi Tiff,

Quite an interesting dilemma you've got there.........to reconnect or not to reconnect. In some ways, I'm glad I have no choice but to stay an ostomate.....I really can't make a bad decision! I'd say you need to have a candid discussion with your gastroenterologist about this..........and then get a second opinion as well. As said above, having a colon makes a world of difference........even if it's just a part of a colon. But 'ileo' is a pretty broad term. How much small bowel do you have left? Is your ileocecal valve still intact? Was any of your rectum involved previously? Can you control your output now with your diet and hydration protocol? These are all things that will (or should) factor into your opinion. And unless you know all those details about everyone else you've read about who has reconnected.........you need to take their situation with a big grain of salt, as they're not you.

I know for me when I think back to life before my ostomy it was all about knowing where every bathroom was wherever I went........which now doesn't seem like it was all that terrible........but I'm fooling myself.........it was. While having an ostomy does suck for sure..........it has allowed me to get more of my life back than had I stayed a bathroom hunter. Both choices have pros and cons, as you know. Find out exactly what your condition is from your gastroenterologist..........ask those questions.........and the best choice should be obvious. Oh..........also talk to a surgeon or two to make sure they won't have to remove any more bowel when they reconnect. Depending on what you have left.......losing a few more inches or so may or may not make that much of a difference.

Decisions......decisions!!

;O)

G-Day tmn68,

If you weren't in a wheelchair, you could have a chance of a reversal working. I had a j-pouch for many, many years, and my butt was like raw liver. It's like acid and burns.

The fact that you are in a wheelchair makes me think you are better with an ileostomy bag.

This is just my thoughts; it's all up to you. Good luck, and I hope it all works out for you. Sending good vibes your way.

Regards, IGGIE

Hello Tiff

Someone asked the same thing not so long ago. I don't know all your circumstances; however, in short, I see wheelchair and urgency as a very undesirable combination.

I have been getting a lot of great advice, and I am really leaning towards keeping the ostomy. I cannot tell you how much I hate this bag! But it might be the better of the two evils.

I am thinking that you are right. Ugh!

Tiffany

The lesser of two evils. 😁..

And you aren't the only one who hates their bag. But then, considering the alternative?

I'd rather be above ground than below it. 👍

I'd say if you are going to have 8 uncontrollable runny stools a day, then it's not worth it. Do you want to have to wear Depends and be changing them all the time?

I would not reconnect to the jpouch. I had it for 21 years and had a lot of problems with it: chronic pouchitis, incomplete emptying, severe butt burn, and toward the end, Crohn's disease with fistulas developed. It became a nightmare. I now have an ileostomy, and it is so much better now. All of the symptoms are gone.