HealingWell
Search Close Search
☰

j pouch surgery

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/20/2016 4:33 AM (GMT -5)
My doctor and I have decided to get the surgery because my UC just will not get better. We decided that if I couldn't get into remission by the end of the year,I should get the surgery. I have had numerous people tell me that it was a mistake to wait, that they all would have gotten it sooner if they could have.

I am looking to have it in maybe 4 months from now, instead of waiting till 2017. A couple questions:

-j pouch surgery is the best kind for me correct?
-should I listen to my aunt, who has been an RN in the same hospital for 20+ years? She suggested a surgeon to me that everyone says is great.
-Or should I travel to the Cleveland clinic? I have heard it mentioned a ton, and assume it is one of the best on the country.(I live in Pittsburgh, so it is a very short drive actually).

I have done tons and tons of research on diets, pills, medications,etc For my colitis. I probably know a add much as most doctors lol. But,I haven't done much research on the surgeries yet.

I am willing to tell anything about my symptoms, medications, or whatever is needed to help make a decision. Please ask if it will help you with replys.

Thank you all very much in advance.
Posted 1/20/2016 12:06 PM (GMT -5)
to try and answer some of your questions:

it's your decision whether you would like a j-pouch or opt for an end ileostomy. Definitely discuss it with your surgeon. I am currently healing from my j-pouch surgery waiting for my reversal. My sister had a j-pouch 22 years ago and has been fine since. It was the option I chose to have the most "normal" bowel function.

research your surgeons. Find one that has done NUMEROUS jpouches, you want someone with lots of experience in the area. Don't be afraid to get more than one option.

My decision was made based on my quality of life. no medications would work anymore and I was a prisoner to my home. I couldn't live like I was. Even with my temp ileostomy, it's already given me my life back
Posted 1/20/2016 4:19 PM (GMT -5)
Whatever you do....if you go forward with this....make sure it's a colorectal surgeon who has done many j pouches. Not sure who your aunt knows but stay away from general surgeons. Must be a colorectal surgeon.

If I were as close as you, I would go to the cleaveland clinic, absolutely. Just my opinion. :)

A consult with a surgeon(s) will give you an understanding if you are a good candidate for a j pouch. Then you can make your decision from there. I interviewed 2 different surgeons. Best of luck. I love my j pouch. It's been a God send!
Posted 1/24/2016 10:30 AM (GMT -5)
100% agree with Marianne. Best of luck.
Posted 1/27/2016 9:46 AM (GMT -5)
This is my first post. I was diagnosed with UC 8 years ago. I am a 50 year old male. I have been in an extended flare up since June 2015. I have went through all treatments over the last 7 months. Humira didn't work, I have been on and off large doses of prednisone, Lialda, Valcyte. Two week long stays in the hospital. Now we are going to try Entyvio. They have said that if this doesn't work, surgery is my only other possibility. Never been scared about health issues but this scares me. If the Entyvio doesn't work, the fear of having my entire large intestine removed frightens me. Anyone have any advice or encouragement they could throw my way to not worry so much about the possible outcome of surgery?
Posted 1/27/2016 12:22 PM (GMT -5)

CoachP19 said...
This is my first post. I was diagnosed with UC 8 years ago. I am a 50 year old male. I have been in an extended flare up since June 2015. I have went through all treatments over the last 7 months. Humira didn't work, I have been on and off large doses of prednisone, Lialda, Valcyte. Two week long stays in the hospital. Now we are going to try Entyvio. They have said that if this doesn't work, surgery is my only other possibility. Never been scared about health issues but this scares me. If the Entyvio doesn't work, the fear of having my entire large intestine removed frightens me. Anyone have any advice or encouragement they could throw my way to not worry so much about the possible outcome of surgery?

I'm currently between surgeries now. I had my colon removed last October. While I did have issues following my initial surgery (they are in the UC forums in the thread "Decision Made"), I am recovering wonderfully currently and have my ileostomy reversal scheduled for Feb 10th. My quality of life made my surgical decision for me. I was trapped in my home and my bathroom due to countless bathroom accidents. Just the first surgery alone with my ileostomy gave me my life back. I can't even tell I have no colon, I do know I don't feel sick anymore. I'm still dealing with minor soreness and issues from surgery but they get better every day. If you decide to go that route for surgery, find a colorectal surgeon that has done numerous j pouch procedures. Consult with a few surgeons and see who you feel most comfortable with. Like any surgery, there is no guarantee with the outcome. Some have issues with the j pouch and others (like my sister) have no issues at all. She had hers done 22 years ago and hasn't seen a doctor or taken a med since. I am currently off all prescription medications and for the most part am feeling completely normal. All medications failed for me in the end and my quality of life suffered from that. Nothing was working. It's been a tough road and recovery has been hard but so far it's all been worth it.
Posted 1/27/2016 12:38 PM (GMT -5)

CoachP19 said...
This is my first post. I was diagnosed with UC 8 years ago. I am a 50 year old male. I have been in an extended flare up since June 2015. I have went through all treatments over the last 7 months. Humira didn't work, I have been on and off large doses of prednisone, Lialda, Valcyte. Two week long stays in the hospital. Now we are going to try Entyvio. They have said that if this doesn't work, surgery is my only other possibility. Never been scared about health issues but this scares me. If the Entyvio doesn't work, the fear of having my entire large intestine removed frightens me. Anyone have any advice or encouragement they could throw my way to not worry so much about the possible outcome of surgery?

Hi and welcome. I was scared out of my mind too when I was faced with the realization that I may need surgery. So I know how you feel right now. All I can say is this: The surgeries (I have a j pouch so I had two surgeries) were tough....recovery that is. I won't lie. However, it was such a short blip on the radar map compared to all the years I suffered with UC. And now I'm in the clear...no more UC to creep back up on me when I least expect it. I'm very happy I had the surgery. You will be scared if you have to face it. I wouldn't believe anyone if they said they weren't scared. I did this five years ago when I was 41. Best of luck with the entyvio.
✚ New Topic ✚ Reply