File this entry under: Coping/Support
Hey, friends. If you’ve followed my story you know it’s been a frustrating 8 years since the inception of my J-pouch. A post-colectemy, end-ileostomied 22 year old Liz wondered, “Should I do this J-Pouch thing? Do I really need a J-pouch? I don’t mind the ostomy…It works great, I feel better. But, if there’s an internal option, I’ll probably do that.” Because, you know, although I was 22 and dating someone, I knew he wasn’t THE one. And although I could deal with an ostomy, it seemed like a lot to introduce to most college-aged guys. Anything internal seemed more convenient vs. an external bag. So, that’s what I did. I got a J-pouch.
At the time, I had a wonderful surgeon who had a high success rate. A three-step J-pouch procedure was performed in 2005 in May, October, and December, respectively. I felt great after the colectemy. After the J-pouch creation I felt not-so-great. I had a fever and horrible pain in the hospital. It was a pretty brutal surgery. The takedown was a breeze and although I spent the next year dealing with a recurrent stricture and chronic pouchitis, things were so much better than they’d been before the colectemy, I thought I was home free. I wasn’t crapping exclusively blood 30 times a day, writhing around in my bathroom floor praying for relief or death anymore-anything was an improvement!
Then came more mechanical problems including prolapse (the pouch came out of my bottom so much that I had to push it back inside) and a twice-twisted pouch (ouch!), more surgeries, and a Crohn’s diagnosis. Then I started a biologic that scared the hell out of me, but all other drugs had failed, so I succumbed. I took it in combination with 6mp, a chemo drug that I’d taken many times before surgery. I took hand fulls of antibiotics for chronic pouchitis on a daily basis and rotated them when necessary.
Despite worsening problems like photo-sensitivity to any sunlight (turn lobster red from 20 min in the sun and start vomiting), severely swollen joints (I could barely walk and couldn’t bend my knuckles) all my doctors blamed Crohn’s and upped my meds. I got sicker and sicker, then after insisting on a slew of blood work to check for some of those scary-ass biologic side effects, I was diagnosed with drug-induced lupus and stopped the biologic. I considered going to Northwestern to have my body blasted with chemo and rebuilt with stem-cells, but through divine providence a better option presented itself. I got my arse to Cleveland Clinic, the hub of pouches, and in TWO DAYS got a proper diagnosis of IGG4 autoimmune pouchitis and an improperly constructed pouch. After an improved 3 years of trying pouch guru Dr. Bo Shen’s tricks, my pouch finally gave out on me in early 2013. He told me from the inception of our treatment I may have to eventually have a reconstruction of the J-pouch or have a permanent ostomy, though he was not excited about either of those options. But at least I was prepared for it.
By the beginning of 2013, I was miserable. I had constant, more intense pelvic pain, my stomach was so swollen I looked 5 months pregnant. I also had symptoms of a fistula and one showed up on an MRI, so I went back to Cleveland in March 2013 for a fistula surgery with Dr. Remzi, the surgeon recommended to me by Dr. Shen. During that surgery, Remzi examined my pouch and said essentially that my pouch was a hot mess and had to be redone or cut out. He thought it was responsible for 90% of my problems. So, after a few months of deliberation, worsening symptoms, I knew he was right. I scheduled the first surgery to revamp my pouch: a temporary loop ileostomy in June 2013. The ostomy was necessary to give my infected pouch time to rest. After the surgery, with the J-pouch in rest (or limbo) I immediately lost 10 pounds that I never regained after that surgery. (Full of shit anyone?) I felt pretty good through the recovery, and I hoped I could just enjoy my new ostomy and let the J-pouch hang dormant, but no such luck. I developed diversion pouchitis which meant I was passing blood through my pouch, had low-grade fever, arthritis flares, and generally felt awful. Combined with a high-output ileostomy which denied my body of nutrients and hydration, I lost about 16 pounds in two weeks. My body was sick again. After following a strict high-protein diet, coupled with gallons of Pedalyte, handfulls of immodium, and daily enemas for the diversion pouchitis, I saw vast improvement. Still, I had pain and occasional bleeding. Also, I passed a lot through the old pouch (thank you, loop ileo) and it was just too much damn maintenance. The special enemas were expensive, and I just wanted ONE butthole-not too much to ask for, right? So, after months of deliberation, I decided I’d try for the J-pouch redo with Dr. Remzi at Cleveland Clinic.
A former surgeon in Oregon who was on the right diagnostic track back in 2010, told me my rectal cuff was way too long and needed to be shortened, but said the surgery had a high failure rate (success less than 10%) and that no surgeon would attempt it, that I’d have to have my pouch amputated and have a permanent ostomy. I was fine with the ostomy option, but less thrilled with the prospect of losing that much of my small intestine. So, when I found out Remzi’s success rate for a J-pouch reconstruction, shortened rectal cuff and all was 85%, and that there was a chance he could salvage the old pouch, I figured I have to try; mostly to save what’s left of my guts. (By the way, thanks to all you guys for the support on that decision! I love my Jpouch.net family!)
I had the reconstruction just over a month ago. Every single doctor from Shen to Remzi to the nurses, told me how horrible this surgery would be. Dr. Shen could barely talk to me about it because he knew what I was about to go through. He would just shake his head, look down and say, “Okay to do.” I believed them all and I dreaded it right up to the moment they put the oxygen mask on me in the operating room. I kept thinking, “It’s not too late…I can jerk the IV out of my arm and bolt out of here. The crazy expensive enemas aren’t so bad. Shitting blood’s not so bad.” But, then I realized, it really was. The pouch hurt so much. It always had, even when it wasn’t officially working. It had to be redone or come out and for the sake of preserving what’s left of my insides, I decided to try the option that might let me keep what’s left. So, I sucked it up, sucked in the oxygen and passed out on the table and let Remzi work his magic.
This was approximately my 15th surgery. (I’ve lost count of some of the “lesser” surgeries like stricture dilations, etc.) and, it was rough. I had my first epidural before the surgery. I always incorrectly assumed an epidural was a single shot that provided hours of blissful numbness from the waist down. Nowadays, they insert something akin to a catheter or an IV into an area by your spine and you get a button (much like a pain pump) to shoot numbing meds and Fentanyl into your back. It worked the first day-so well that one of my legs went numb and I couldn’t move it. So, they backed off the dose. After that, the sucker came out. I knew this because there was blood all over my pillowcase, bedding, gown, etc. and my back felt wet. Despite this, and my multiple complaints, it took 3 days to have it removed. There was a fresh new crop of interns and residents, and as a result, I had to deal with some frustrating situations. I’ve never dealt with pain management before. My doctors have just always given me a pain pump. The end. This was a frustrating game of changing meds around and relying on an epidural that wasn’t working, so the second day I had no pain control in my pelvis-the area that had been cut open for the upteenth time, incision extended into half my “mons pubus” (aka, hello lady parts) and re-worked in the biggest surgery I’d ever had. You couldn’t touch the area where the incision was extended without the area spasming and me jumping and yelping in pain. (I’m not a yelper!) I was miserable. I finally got help from a wonderful ostomy nurse and a shift of new nurses who knew the epidural was not working and hadn’t been for days. Terri and Elana were my angels. They got things done and they listened to patients and worked with them. I’d never before had an experience of not being heard or believed by a doctor. Dr. Remzi and his fellows were fantastic, but some of the new blood on the pain management team were not.
Once I had a pain pump (which has always worked in the past), and developed my usual itchy reaction to the pain meds, a new pain management resident wanted to eliminate it because I was itching. Despite politely telling her that this was normal for me (read my chart) and that I could deal with itching, but not the level of pain I was in before (because the epidural wasn’t working), she ignored me and removed it. Unsurprisingly, the pain was back with a vengeance, and Remzi’s residents were pissed. It finally got fixed, but I’ve never had that level of pain after surgery in my life, and never had it go untreated for so long. I was not happy and spoke with each department head about my concerns. I was angrier from a patient advocate perspective than I was for myself, but I was mostly just shocked because my previous experience had been stellar. I suspect new training, new interns and residents were a big part of the issue.
After this, my incision had to be reopened because of infection, I blew 8-10 IV’s (bent one with my scar tissue ridden veins) and failed 2 midline IV attempts (very rare).
The IV graveyard.
Eventually things improved and I was discharged on day 8. My incision opened up more and I experienced tunneling for the first time. After a follow-up appointment, a wonderful WOCN showed me how to pack it with sterile, antimicrobial ribbon gauze and saline.
The good news is, the surgery went well and Dr. Remzi was very happy. He mentioned what a difficult surgery it was on multiple occasions, but he was able to do the following: Shorten my too long rectal cuff, remove the recurrent stricture at the anastamosis site, clean out 8 years worth of inflammation in the pouch, and make it symmetrical and mechanically correct. He had to give me a new ostomy (farewell, Stella!) in order for the pouch to reach my rectal cuff without stretching it and putting stress on the pouch, so the new ostomy (hello, Stella 2.0!) is about a foot higher which means it’s even higher output. So, until takedown, I have to be extra super-duper careful about nutrition and hydration.
So, a lot of people asked me, “Why didn’t you just go for a permanent ostomy?” The reason is, I cannot afford to lose any more intestine, especially because I have historically high-output ostomies. There was at least a chance with the J-pouch redo that he could salvage the old pouch (ie, no loss of intestine) and he was able to do that because Dr. Remzi is the bomb.com It also gave me more options. There’s a 15% chance this won’t work, and if that happens, I can go to a permanent ostomy then, but IF, just if, this works, maybe I will be able to preserve the precious few guts I have left.
I should note that since the surgery I’ve had obnoxious incontinence. I used to experience that occasionally, mostly at night, but I always knew it was happening because there was an obvious sensation “down there.” Now, there’s nothing. The mucus just runs out at its own desire and I’m alerted by the disturbing warm feeling. I have hopes this will improve. He just did a LOT of intense work down there, so it makes sense that things are all a twitter.
Hindsight being 20/20, and this being my 15th surgery in 15 years with this damn disease, I have to say, I kind of wish I’d stopped with the end ostomy after my colectemy. But, I didn’t. I tried and I failed. A lot. I really hope this time works for me because in addition to getting older, I’m getting really, really tired. I’m ready for something to work. I would love to have just a few years of semi-decent health. For anyone considering a J-pouch, I urge you to think long and hard about your options. I also want to emphasize, that for MOST people, the J-pouch surgery is successful. I am by no means a good example of the norm, but there are plenty of people out there like me. It may shock you to know that the J-pouch surgery is not, yet, a board-certified procedure. Dr. Remzi spends about 2/3 of his practice fixing other people’s work-either reconstructing a poorly made pouch or amputating it and giving someone a permanent ostomy. Because of that, he’s trying to make it a board-certified procedure. I say this not to scare you, but to inform you.
Surgeries are risky business, especially surgeries that create a neo-organ. Knowing how I felt as a 22 year old single girl and knowing the perspectives of the hundreds of women and girls I’ve counseled about these surgeries and diseases, as a patient advocate and through my work with Girls with Guts, I know the only reason people want a J-pouch is because they don’t want an ostomy. They don’t want an ostomy because of the stigma. So, instead of stopping at one surgery, we put ourselves through one or two more…or 14 more, in my case. Frankly, that pisses me off. I’m proud to do the work we do at Girls with Guts and on this blog to help raise awareness and erase the stigma of IBD, ostomies, and pouches, but through this work, I have seen how significantly the stigma affects patient’s care and health and that infuriates me. I think of the time I could have had-the 8 years of good health I likely would have had if I had chosen the “gold standard” and stayed with the ostomy and part of me longs for that, but let me be clear: I don’t regret my choices because they’ve lead me down beautiful paths. I love my life. I am passionate about what I do and what I do keeps me going. How many people can say that?
The bad experiences have put me through hell, but as a result of surviving that, I’ve been able to meet all sorts of incredible, strong patients, and just maybe help them because of those hellish learning experiences. I’ve made friendships with people who are now family, but I do regret the suffering I’ve endured because of vanity.
The reconstruction was brutal. It was absolutely brutal. As much pain as I’ve endured in my life, and as high as my pain tolerance is, my body felt like it had been destroyed after this surgery. I’m starting to feel better, the giant incision is starting to heal, and the pain is beginning to abate. I pray this works for me, but more so, I pray that patients considering this, or any surgery, will do their due diligence and seek the best care possible. I pray they will make decisions based on their health and what option will give them the best quality of life vs. which option will make you look better in a bikini. (Check out the Girls with Guts Facebook page to see how hot our ostomy girls look in their bikinis!)
Lastly, I am so grateful to the amazing staff at Cleveland Clinic’s Digestive Disease Institute who have devoted their lives and work to patients like us. For pouch issues, there is no better place in the world to go, and I feel truly blessed to be able to seek their counsel.