Proctocolectomy Question

Hi Jlang! Sorry to hear you are having issues right now.

I had a temporary loop ileostomy almost exactly one year ago. I had a colon resection and the loop to let the resection and my rectum heal. I had that for about 10 weeks and then had a scope that showed everything healed and a small spot of inflammation that they thought was diversion colitis not active Crohns. So I had the ostomy closed.

Unfortunately my disease came back fast and furious. My surgeon gave me the option of going back in the hospital on full bowel rest on TPN or surgery. If we did surgery he said he was taking it all, colon, rectum, anus and sewing me shut. He said at that point he wouldn't operate unless it was the big surgery. I chose the surgery. I had a rectovaginal fistula that wouldn't heal and my rectal inflammation was so bad it was affecting my bladder and vaginal wall. I was in a lot of pain. So for me I was more worried about other damage from the disease than the risk of surgery.

They made it clear about fertility for the female. Not sure on infertility of the male except for the risk of erectile dysfunction. There are several males on the Ostomy board on this site who have had total proctocolectomies and jpouch surgery that have more information about this and are very good about answering questions. You may want to also post over there.

In my situation I adapted well to the loop so that made my decision easier. For me this surgery was a blessing, no more pain, no more medication, my normal energy is back, and my blood work is normal. The surgery is a big one and recovery is tough but it gave me my life back.

I have Crohns Colitis and my disease was always in my lower left colon and rectum so for now I am on no medication. Is your disease confined to the colon? How long do they think you will have the loop?

Wow 2 years! Well good luck with the colonoscopy. They are a breeze while diverted! No prep! I just had to stop eating after midnight. Hopefully the ostomy is helping. Being diverted really helped me heal. Incontinence can be a concern depending on your situation. That was the main reason I went back to the ostomy so quickly. In all my years of being sick I had never had to wear diapers. After surgery I was having accidents all the time, it was a nightmare. I started never leaving the house and would have to wear a diaper to go to dr appointments.

How are you doing with the loop? My loop didn't give me too much trouble, I didn't mind it. But everyone (including my surgeon) who said end ostomies are often easier than a loop were right.

Congratulations that is great you will be a dad soon!

You sound like me when I had my loop I loved how great I felt. And realized the ostomy was really no big deal when I compared my life to before and after. I was so nervous for my ostomy closure and once the disease came back I missed my ostomy!

Perianal disease juat sucks! For my proctocolectomy my surgeon had his partner assist because the inflammation was so bad from the perianal disease. He said he needed to start at one end and his partner the other because the damage from my rectum and fistula was so bad he was afraid I would have been under too long if he did it all himself.

If you go straight to the proctocolectomy healthy the surgery will be easier. And as my surgeon said the less inflammation the less risk of complications, like infertility. My situation was unfortunate because the loop made me so healthy and it would have been an easier surgery if we did it then. In just the time from Dec to March I got so sick again that it made the surgery harder and more risk for complications. I am very lucky I didn't have any.

Sounds like your doctor has a good plan and you have adapted well to ostomy life! I hope all continues to improve for you!