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%20
2013/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. ;)
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
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.
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.
24 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs not successful
Supplements, LDN, antibiotics, SCD probiotic yogurt,SCD/Paleo diet,FMT,
Nothing worked. 12/2014 Jpouch. Jpouch failed due to pouchitis and chronic sepsis. Removed 1/2017; Ostomy revision 3/2017
YOU CAN'T JUST "TRY" THE JPOUCH
Proud, very healthy ostomate who is now living life disease-free
Post Edited (SolomonSeal) : 11/16/2017 6:25:22 AM (GMT-7)