It's over 15 months since takedown. Pretty much none of that time has met my expectations for the jpouch and some of it has been spent suffering a lot.
Given my continuing symptoms, about a month ago I went to the pouch expert, Dr. Shen at CC. He looked at a CT I had in the ER 6mo ago and found a sinus (basically a defect in the pouch). He then did a pouchoscopy and also operated on the sinus, trying to fix it.
Pouchitis has gotten worse. There are now even ulcers by the inlet to my pouch. According to Shen, the longer you have the pouch, the greater your risk for de novo Crohn's. I don't want to let that happen.
After the scope/op, I think my pouchitis flared really really hard. I was in bad pain and not eating for a week thereafter, and my weight is still low. A week of cipro/flagyl brought me back to my "normal." I'm now on steroids again (budesonide). I'm definitely feeling better and am able to exercise and travel, but even after all of this treatment my sleep is fragmented and my bathroom visits remain frequent.
In two weeks I will see Shen again. I will tell him that unless he has something really convincing to stop me, I'm ready to rid myself of the jpouch. I payed such a heavy price with my health to "try the jpouch" as my surgeon insisted, but the collateral damage I can suffer from this dysfunctional thing is unacceptable, besides the unhappiness it's causing me. The jpouch was supposed to give me my life back, but I feel like the horse (jpouch) is riding its owner (me).
I've seen multiple surgeons and will see yet more. As I prepare for jpouch removal and permanent ileostomy, I'm trying to see how I can minimize the risks of Jpouch removal (which, as nobody tells you, are very significant).
I'm young, so a permanent ileostomy is frightening; however, I remember my experience with a temporary ileostomy, and it was as the experience of being the rider of an obedient horse (to reuse the simile). I went on 4 hour bike rides without worrying about needing the bathroom. If I played my cards right, I would wake up only once, to vent my ostomy bag and go right back to sleep.
I'm looking for a place to connect with others who have an ileostomy from a young age, and/or removed jpouch, and do a wide range of activites with their ostomy. I know there's the Ostomy board here, I also know of Inspire and the UOAA board. Any other recommendations?
Emotionally, while I'm strong, deep down it hurts. I just turned 23. I told nobody except my GF that it was my birthday, because my life feels like a debacle hardly worth celebrating right now. I haven't celebrated my birthday for three years now, spending my time surviving blood loss or chained to the toilet. A sharp contrast to my friends out drinking and being young. I am far less social as I hate explaining my situation to my friends/acquaintances while I watch them go to graduate school/start careers/get married.
I do still believe strongly that my UC story will have a happy ending, and that that happy ending is coming soon. I have made a big mistake, but God is forgiving, and I pray that permanent ileostomy surgery will go great and that I will rock my ostomy even better than the first time, after which I will go about moving forward with my life's ambitions. I will also turn what is a traumatic experience into a desire to live more fully and more for the benefit of others who hurt.
22 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 w/ temp stoma 4/2015 ileostomy reversal