Ileostomy reversal soon

[honeybunches]

hi everyone, so I've had a stoma since December 2017 and was originally expected to only have it until the summer of 2018 but my body didn't seem to agree so here I am still hanging with Fiona the stoma.
Anyways I'm finally in remission and have set a date for my take down surgery, August 1st.
Now i'm extremely curious as to how the recovery and life after an ostomy is so if anyone has any advice, insight, or even just their own personal experience with a reversal please feel free to leave a reply.

ALSO I should mention there is a chance I might need a small resection from my ileum including my ileocecal valve which I've heard can end up causing issues so honestly having that resection is a bit more nerve-racking to me than the reversal.

 

[D Bergy]

I had a reversal and lost the ileocecal valve. Yes, even though I have no inflammation or any sign of Crohns, the lack of the valve does have drawbacks.

If you are flared, you will not be able to go anywhere without being in close proximity of a bathroom. You have less control and when you feel like you have to go, you have a few more minutes at most to find a place to do it. And that is even when using cholestyramine.

However, if you are not flaring, the cholestyramine actually does a good job of keeping things manageable. I am a volunteer driver for my county and can get along just fine. I delivered mail for 10 hours a day at times when I was working at the post office. No real problem. You just have to make sure you take your cholestyramine before going about your day.

The problem is going to be when your flared. Nothing on earth will keep you regular when your guts are inflamed.

Good luck.

Dan

 

[honeybunches]

I had a reversal and lost the ileocecal valve. Yes, even though I have no inflammation or any sign of Crohns, the lack of the valve does have drawbacks.

If you are flared, you will not be able to go anywhere without being in close proximity of a bathroom. You have less control and when you feel like you have to go, you have a few more minutes at most to find a place to do it. And that is even when using cholestyramine.

However, if you are not flaring, the cholestyramine actually does a good job of keeping things manageable. I am a volunteer driver for my county and can get along just fine. I delivered mail for 10 hours a day at times when I was working at the post office. No real problem. You just have to make sure you take your cholestyramine before going about your day.

The problem is going to be when your flared. Nothing on earth will keep you regular when your guts are inflamed.

Good luck.

Dan

Thank you Dan, this was actually incredibly helpful.
I'm glad to know you get along just fine. I actually have one quick question if you don't mind, do you find your bathroom visits to be normal when not in a flare or is it always just unformed or loose no matter what? I hope it's not too much intrusion or tmi.

 

[D Bergy]

Pretty much unformed and loose. A lot of that in my case is caused by drinking a lot of coffee though out the day. Since its an irritant it probably accounts for a lot of that. There is no doubt that it will not be as it was.

Dan

 

[DCCrohns]

No advice, but I am hoping I can benefit from yours later. I also had a temp ileo placed a few years ago, anticipating it for six months or so. Fast forward three years and I am still not reconnected but hopefu. Best of luck!

 

[Dyana]

I also had a temp for 6 months and then a reversal- I don't think I lost my ileocecal valve. It went well. no issues other than problems until it healed. stools can occasionally be formed. I am on Remicade since. good luck- It is SOOO nice to have indoor plumbing again!