Moving forward with J-Pouch

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RunJerRun
Regular Member


Date Joined Oct 2017
Total Posts : 44
   Posted 6/12/2018 9:15 AM (GMT -6)   
The proctitis in my rectal stump (there has to be a better name for it) has encouraged me to make the decision on whether or not to move forward with the j pouch. I was originally planning on having a long break and then deciding. But, as we all know, UC doesnt care about our plans. So, I’m all scheduled up for round two on July 17th and then hopefully the final stop on the surgery tour sometime in September.

I’m hearing mixed reviews on how difficult the second surgery is compared to the second. Would you say this is due to being more traumatic to your body, or because we may still be recovering from the first surgery and we are getting kicked when we are down.

All I know is that the first step recovery was a dream compared to my recovery from my partial kidney removal last November. Right after that surgery is when my UC decided to progress to Pancolitis and introduce me to the flare from hell. Trying to recover from a major operation while needing to get to the toilet 20 times a day was absolutely the worst!
42 year old male
Sept 2017 -DX UC Symptoms since Jan 2016
Nov 2017 - DX Kidney Cancer, Partial Nephrectomy Surgery.
Failed meds, diets, - UC progressed to sever Pancolitis
Feb 2018 - Surgery, Step 1 - Subtotal Colectomy, Ileostomy
Med Free - Pred Free!

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5090
   Posted 6/12/2018 10:25 AM (GMT -6)   
The surgery is about twice as long as the time it takes for step-1.

Are you having surgery at a university hospital? I had mine at the end of June and they had just brought in their new class of residences, they were woefully unprepared to treatment. thankfully the CR nurses took over in a way that they hadn't during my previous two CR surgeries.

The other thing is that we run into a dehydration issue with step-2/loops. Be very careful during the summer months.

Are treatments for the rectal stump not working?
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

U.C.Me?
New Member


Date Joined Jun 2018
Total Posts : 18
   Posted 6/12/2018 10:42 AM (GMT -6)   
Wishing the best for you! Hope everything goes really well.
Currently: Dairy-free SCD, Probiotics, Digestive Enzymes, Multi-vitamin.
Mom of two

"The real things haven't changed. It is still best to be honest and truthful, to make the most of what we have; to be happy with simple pleasures, and to have courage when things go wrong." ~ Laura Ingalls Wilder

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4201
   Posted 6/12/2018 3:53 PM (GMT -6)   
Best wishes to you. Keep us posted.
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: mild-to-moderate chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018.
Current meds: Delzicol, 6, 2xday; Rowasa nightly; singular and Allegra for allergies; Xanax.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16284
   Posted 6/12/2018 9:52 PM (GMT -6)   
Good for you! I think you will be happy when all is said and done, but unfortunately I can't say anything good about the loop. On the other hand, I felt like my recovery from step 2 was much easier than step 1. I don't know why, maybe because I was healthier going into it, or maybe because I was more aware of what to expect, maybe because I knew I needed anti-nausea and anti-allergy meds around the clock to help with the opiate intolerance... it was much easier for me personally. Others say the opposite. It's pretty independent.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

RunJerRun
Regular Member


Date Joined Oct 2017
Total Posts : 44
   Posted 6/13/2018 10:35 AM (GMT -6)   
NSSG - Yes, kinda of dreading the loop. My end illeostomy has been a piece of cake. I haven’t had any leaks (except the night I forgot to click the bag closed and woke up to mess. Whoops!). I’m also hoping to avoid the pain killers as I don’t react to them well (They give me crazy nightmares, like a big slimey monster was trying to cuddle with me on the couch. Ahhh! No thank you). THe first step, I got by okay with Tylenol after the first week. I hoping to do the same. I’m way healthier this time going in (and no longer on pred). Hopefully that will make recovery better We shall see...

KSL - I am having the surgery at a major regional hospital. It isn’t a University hospital, so I’m hoping to avoid an rookie treatment. I’ve made the mistake of letting a nursing student try and draw blood from me in the past. After his 6th failed attempt, I told him we should probably let someone else have a try...
Also, I’m not currently using any meds to treat the proctitis. I didn’t have any luck with rectal meds when I was battling UC. Maybe now it would be different. I have a Dr’s appointment in a couple weeks. I’m not sure if he will want me to try something or have me wait it out.
43 year old male
Sept 2017 -DX UC Symptoms since Jan 2016
Nov 2017 - DX Kidney Cancer, Partial Nephrectomy Surgery.
Failed meds, diets, - UC progressed to sever Pancolitis
Feb 2018 - Surgery, Step 1 - Subtotal Colectomy, Ileostomy
Med Free - Pred Free!
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