Surgery here I come (Updated over years, from UC to Jpouch to Healthy Ostomate)

After more than a year of constant struggle with no sustained remission, I have exhausted treatment options and am accepting the surgical option.

I'm scared of what's about to happen, but my conscience is so clean about this that I have no problem moving forward.

The truth is that this experience with UC has traumatized me. I want to get a j-pouch, but I'm concerned about obstructions, chronic pouchitis, and above all, a risk of "Crohn's like changes." I came across this article (http://library.tasmc.org.il/Staff_Publications/publications%202013/dotan.pdf), and if I understand correctly, the only NOD2 risk factor I have is the one in question in this paper.I am considering a permanent ileostomy, but truly value my surgeon's input and want to know his thoughts on the matter.

Colon, I have done everything that one could do for you. I'm sorry for you, truly, but this is goodbye. ;)

EDIT 4/2016:
Below is my status one year after jpouch surgery and its takedown. Browse through the thread to see events in between. I will continue to update this thread as things develop.
ONE YEAR UPDATE:

One year ago, I had takedown. The bottom line is that I do regret jpouch and to a much lesser extent surgery on the whole. My colon's chances of survival I think were objectively pretty low, even if I had gone back on pred, taken new biologics, and recommitted to fighting for remission.

That said, my quality of life with the temp loop (!) ostomy was better than my jpouch life, and there's almost not a day that passes where I don't think about that while in the bathroom or clutching my belly.

As it is best understood, I have been diagnosed with chronic pouchitis, which amazingly responded to cipro/flagyl a few months ago in the hospital (even though the same failed several months before that). Prior to that, I spent about 9 months feeling like I still had UC. Following that hospital stay and getting a medical cannabis license, I have been able to function much better, and might be able to consider this an acceptable, if regrettable, quality of life.

I would say that I have 10 BM's/24hr, waking up at night 0-2x sometimes due to pain or needing to go to the bathroom. I do have occasional incontinence. I do have daily pain, both above my anus and at my former stoma site when the pressure in the pouch builds up. The pain is bearable, unless I have to wait several hours for BM. When I'm at home, sometimes I lie down and pass gas, which helps a lot. I sleep pretty well, actually. I empty my pouch effectively when I have a "pouch spasm." My diet is not limited at all, which is good. Overall, I would say that I'm functional, but I and most people around me know that I have issues (really ironic, if this jpouch was meant to improve my social function due to not being self conscious about a bag...).

In June I return home from a year abroad and will visit Bo Shen and my surgeon at CC. I will get a scope and hopefully better understand why I have issues. I intend to inform myself about the option of returning to ileo and pouch removal, but right now don't see that as a likely choice for me. While I hope that some change will come out of these discussions, it seems possible to me that I'm just going to have to live with this quality of life indefinitely and be grateful for my life.

EDIT 11/2017

The J-pouch was probably the greatest mistake that I have ever made. I wish that I had never heard of it, and more relevantly, I wish that I had not accepted my surgeon's reassurances about it despite my concerns. The only reason that the J-pouch was created was because people did not want to have stoma. The J-pouch was a place for IBD to return and a chance for complications to occur for nothing but a cosmetic or logistical benefit. If you can accept yourself as an ostomate (primarily emotionally), you will be safer.

It gives me pleasure to tell you that after about three years of significant suffering, I am healthy. I was sick between ages 20-24. The pouch which was constructed for me was in fact dead-on-arrival, and despite being told that I had pouchitis that needed treatment, the pouch itself was septic and causing the pouchitis which was seen. Dr. Shen led us down a diagnostic course that resulted in my decision to end the pouch once and forever in 1/2017. I had a very hard surgery, and the fascial defect for my stoma was not large enough when it was created, so I had to return two months later for reoperation. Since then, I am disease and symptom free. My last ileoscopy was 100% clean, and if I get two more of these year after year I can be called "cured." I feel blessed with a second chance.

You have fought the good fight and I commend you for it. I hope the surgery goes well and you have no complications. For what it's worth, I have a friend with Crohn's who got her colon removed and was terrified of an obstruction, but as long as she chewed well and avoided super high fiber, she was totally fine and has never had an obstruction.

Wish you the best of luck Solomon, and keep us updated on how it goes.

That's a very brave decision, here's hoping it'll get you your life back.

Good luck.
My son had to make the same decision when he was 21,colectomy after med failures.
My advice get into high gear and learn about the procedure and complications as much as possible.
Also make sure you have a patient advocate,that can speak for you, preferably someone who also
is educated as much as possible with the procedures and complications.
Trust your doc's, but someone needs to really stay on top of your care,until you are up and running again.
Old Mike

Katmom said...
Living with a non functioning colon is no life for anyone, much less a young person. I don't think we realized how sick she was until the girl she used to be came back. Nurished, smiling,energy, optimistic...all were buried under the UC cloud.

One of my fondest memories of this past year (since my surgery) is when my mother said "I haven't seen you smile and laugh like this in years, it's nice to see you happy again". You don't realize the toll that "severe UC" is taking out of you on a daily basis until you have surgery and the UC/colon monster is gone.

Fingers crossed for you and Kat today, please keep us updated. My 2nd step was a long procedure and it took me almost 24 hours before I could even try to walk and I felt pretty good by day 3.

did you try 6MP and the biologics?

Good luck! I love my J pouch......I loved my healthy colon better but hey, that wasn't in the cards for me! If you have any questions, feel free to ask away. I am really grateful that this procedure even exists for us!

all the best to you !!!

I love my permanent ileostomy! I can't believe how wonderful my life is without UC. My only regret is that I suffered for so long and did everything I could to prevent having the surgery. I wish I had done it sooner. What a waste of my time.
I now LOVE my life.
Wishing you the same!

You are an inspiration, your strength and courage are beyond moving. I applaud you and your decision to go through with this surgery. Living with this disease ad infinitum is simply not an option, and you have exhausted every other avenue. May the surgery go over smoothly, and may you live a wonderful colitis-free life after the fact.

Dr-A said...
Congrats, would love to go back and do this in beginning,

Dr-A,

Me too.

SS,

get up and walk around as soon as you can after your surgery, it help your digestive tract wake up. Head over to the ostomy forum and read up on Ostomies and ask questions, there are lots of helpful people over there who have all ready gone through this and can help you with any questions that you have.

Best of luck and quick healing!!!!!!

good luck on your surgery mr Solomon. hope you have a speedy recovery.