Hi All,
This is my first post on the forum, although I've been tuning in and benefiting for a few years now. I just became a member this morning, and wanted to introduce myself and share a bit of my story and what's currently working for me. Hopefully the "General Discussion" section is an appropriate place for that.
First off, the biggest lifesaver for me right now (that I learned about here, by the way) is my bidet. I ordered through COCO and asked them for their top model. It was the 9500R, and was on sale for less than $500. They also gave a discount when I mentioned j-pouch.org... Wow, wow, wow. My only regret is that I didn't get one of these immediately after my take-down surgery. I also recently spent $15 on Amazon to get a portable squirt bottle bidet type thing that's allowed me to travel comfortably as well. I'm planning to get one for work too... Basically, I spent the first year and a half after my take-down with pretty regular butt-burn, and just a lot of irritation of the anus. I would often limp around or need to lie down after stooling. Sometimes I would end up in the bathtub for a couple of hours to reduce irritation, and occasionally end up taking extra strength Tylenol or even my old dilaudid. I teach high school, and actually missed seeing my students graduate last summer because of a bad and sudden case of butt burn. Pretty miserable, but I figured it was my new normal. I began using baby wipes instead of toilet paper pretty immediately after take-down, and this helped. After installing my COCO bidet several months ago, I'm a new man. Life is 100% different. I don't have to worry that I'll need to get a last minute sub teacher for my classes, or that I will have to cancel weekend plans on short notice. Not only is stooling no longer a misery, but my anus has been able to heal up to a point where I can track other things better like diet and pouchitis. When I was so irritated it was hard to figure out what was causing what.
The second gem of advice that came from j-pouch.org and also was reinforced by my GI guy, was to get on the VSL3 probiotics. They've increased to span of time between pouchitis flares. Spendy, but powerful.
Aside from what's working, I just wanted to introduce myself. I'm not sure how regularly I'll be contributing to the forum, but as least while on summer break I think that I'll try to join in some. I'm partly joining and contributing as a way of healing from the surgeries. The physical healing has progressed well, but I feel like there's some mental and spiritual healing that still needs to happen. Things got pretty dicey at numerous times prior to my final take-down surgery, and I still feel a bit fragile and out of sorts at times. I've read some of the other stories on the site, and it's amazing the lows that we hit with UC and other illnesses that lead to the j-pouch.
Here's my story in a nutshell: I developed UC in my early 20s. It was inconvenient but somewhat manageable. At age 35, shortly after our kiddo Ellington was born, I had a flare that didn't seem to respond to anything and then spun out into a cascade of other problems. I was hospitalized nine times for about 70 days in total over a one year period, and was unable to work for over a year. The first trip was for pancreatitis. Then there were trips for the UC. At one point I was spending about 20 hours a day in bed, and three hours on the toilet. I was projectile vomiting from the pain while stooling. I was on high doses of prednisone (which gave me the moon face and camel back for a while) and then Remicade. I needed blood transfusions. Then, I started having cramping in my right foot, that they couldn't seem to diagnose. One night my foot was cold and turning blue. My wife rushed me to the ER where they woke surgeons up at home and had them come in to operate on my arterial bloodclot. They couldn't give me the clot-busting drugs because I might bleed to death from the UC, so they used the "roto-rooter" and then cut open about a six inch portion of my leg. When finished, they told my wife and parents that the surgery had been successful and accomplished everything they'd hoped, but unfortunately there were no pulses in my foot. They anticipated that my foot would be blue in two days, black in three, and need to be amputated by the fourth day. I'm happy to say that I still have my foot. My primary care doctor still calls it my "miracle foot." After the surgery I had "profusion," which is the returning of blood flow to a limb that has lost flow. My nurses told me that profusion is one of the most painful things that they'd seen anyone go through. I was no exception. I had a pain pump, oral medication, fentanyl patches on my back, and a lidocaine patch on my foot. None of it cut through the pain. Sometimes the doses were so high that I would forget to breath. That's a pretty strange sensation. One night, a very nice nurse sat and held my hand for hours while I writhed in pain. She was one of many angels who helped me on my journey.
Over the coming months of PT I moved from wheelchair, to walker, to crutches, to cane, to walking again (yay!). Unfortunately, with the prednisone and Remicaid shutting down my immune system, I got pneumocystis carinii pneumonia about ten days after being released from the hospital for the clot. It's supposed to be one of the worst pneumonias... Wow. Ten days on high flow oxygen. Sheer terror. Unable to even get to a commode. Brushing teeth and shaving were big events each day. Bathing was epic.
Anyhow, skipping along, there came a point where it seemed like I was going to have a colectomy or risk further health problems. I chose to lose my diseased colon. They did it in three steps. First the colectomy, then the j-pouch, and lastly the take down. I had an ostomy bag for six months, during which time was super ill with short-gut syndrome, needed multiple stent procedures, had kidney stones removed, had galls stones and my gall bladder removed, had my car totaled when someone ran a red light, and lost about 30 pounds. Yikes... As my mom has often said, it seemed like if it could go wrong, it would go wrong.
Today, I'm about two years out from my take-down. Life is different, but getting more and more manageable. As I said above, I'm implementing more and more strategies gleaned from this website, from doctors, and from trial and error. Next steps for me are to try to increase the time between pouchitis episodes, work with my diet to increase nutrition and find out what seems to make my pouch happiest, and to continue the emotional recovery from my year of misery.
Writing this first post is part of that journey of emotional recovery. I still feel shell-shocked and fearful at times. I still feel cautious and like I'm holding something back or waiting for the next tragedy. I have no doubt that these are fairly normal reactions to a fairly abnormal state of bad health. I also believe that there are actions that people take to heal from trauma. I want to be taking those actions, even if some days it feels like I'm just "suiting up and showing up" and "faking it until I make it."
Thanks everyone for listening and for being a part of this wonderful website that has helped me to not feel alone and to troubleshoot the issues that can be a part of life with a j-pouch.
By the way, after recovery from my take-down I held a celebration and house concert at our house, and wore my "No colon and still rollin'" t-shirt while playing some live music. =)
James
Original Post
