In the morning I was visited by many doctors, and we discussed my options. The fact that I had a c.diff infection had the potential to change things... it was possible that this latest downturn was all due to that. AND, having a recurrent c.diff infection is the only thing that currently makes poop transplants (fecal microbiota transplant, or FMT) legal in this country, something I was very interested in trying if my colon could handle it. It was arranged that the FMT specialist would come see me the next morning (Monday). In the mean time I had some abdominal x-rays to make sure I hadn't ruptured, but things still looked pretty awful and the general consensus was that surgery was going to be necessary - the damage was too great to get under control with medicines that had failed me so far, and the risk of my colon literally breaking open was pretty high. So, I spent a day very hungry, waiting for my chance to see a few more doctors on Monday, preparing myself mentally for what would very likely be surgery on Tuesday or Wednesday.
Monday morning the poop transplant specialist came by, and he seems like a great guy!! He was so enthusiastic... but said that based on my scans it was just too risky, he was very worried that they would make me sicker instead of better. They currently only do poop transplants via colonoscopy, and they didn't think my colon could handle the poking or even just the being inflated with air for the procedure. Too bad the timing didn't work out for me, but at least I can say I had the conversation!
In summary...
medication: fail.
SCD diet: fail and/or out of time.
poop transplant: too risky.
do nothing: risky, and what kind of mother would I be? I've been too sick to be the best mom I can be for 3 years now... time for this diseased organ to come out so I can have my life back, and my kids and husband and family and friends can have their Liz back!
medication: fail.
SCD diet: fail and/or out of time.
poop transplant: too risky.
do nothing: risky, and what kind of mother would I be? I've been too sick to be the best mom I can be for 3 years now... time for this diseased organ to come out so I can have my life back, and my kids and husband and family and friends can have their Liz back!
Onto the surgery - a total colectomy and "J" Pouch reversal (we hope) - how does it work? Its a doozy.
I am very lucky in the fact that I did not get initiated into the world of Ulcerative Colitis (UC) and the treatment options in one fell swoop of shock - my mother blazed that trail for me. She also had this surgery in 2002, with the same surgeon. For most people who have their colon removed, the surgery is conducted in stages over the course of 6 months or so.
First, they take out your large intestine and make a little hole near your belly button that they sew the inverted end of your small intestine to, called a stoma, or an ileostomy. This stoma is now where the poop leaves your body. To avoid pooping all over yourself, you tape a complicated plastic bag contraption to your skin around the stoma, called an ostomy bag, which you can empty into a toilet whenever is convenient. The surgeons were pleasantly surprised to be able to remove my colon laproscopically, so my recovery time from this first stage of surgery should only be a month or so, whereas my mom had full open abdominal surgery and took several months to heal. For the time being I still have a rectum, but it's useless. It will be taken out later, whether I decide to have to reversal surgery or keep the illeostomy forever.
In a few months, when I'm feeling great and no longer on any medications, I will have the option for a "reversal" surgery. At this point they go in through an incision like a c-section, create a little "pounch" out of a portion of your small intestine, and connect it to your anus. You continue pooping out of a new temporary stoma while this new pouch heals, and then in a 3rd surgery they go in and reconnect everything officially so that you have a stomach full of scars but no longer need the plastic bag. You poop out the back like everyone else, but more often and always liquid, since you have no colon to pull out the moisture. Some people decide to keep the ostomy forever, but most seem to go for the "j pouch" these days. Pouches have their risks and inconveniences (and sometimes even colitis symptoms) but they're a little more normal life and it's nice to not have a bag of poop on your stomach. At this point I plan to have the reversal surgery, but lets do this one step at a time.
I had some very reputable surgeons, and felt that I was in good hands. I was not nervous about the surgery itself, only the fact that there was no going back... a part of me would be missing forever! I had the surgery Tuesday morning and obviously don't remember the surgery itself. Lots of morphine and extra steroid doses since I'm steroid dependent at this point meant that I basically slept for the first 24 hours. After that I tried not to use much morphine because it made me very nauseous. As did the sight of my stoma... its like a little red penis coming out of my belly! Again, I had less shock than most since I had seen my mother's temporary stoma years ago, but it is still pretty difficult to accept the reality of pooping out a tiny red penis into a bag taped to your belly. I just keep reminding myself that it's worth it to not have colitis anymore!
The wonderful doctors who have helped me so far:
Dr. Thomas Ullman, Gastroenterology - very kind and caring man. Busy, but great bedside manner and gave me his cell phone number after my emails started going into his spam folder. Texted with me all day on a Saturday while I was in the emergency room and was in constant communication with the ER doctors before eventually arranging a transfer to his hospital.
Dr. Randy Steinhagen, Colorectal Surgery - so gentle. Renowned for his expert surgical abilities and leadership, but very kind and makes you feel like he cares. Also seems sleepy quite often... but that could be because he goes out of his way to visit patients at all hours of the day, he was in the ER with me at midnight on a Saturday. He also gave me his cell phone number when I was discharged from the hospital and worried about things going wrong. I think he visited me every single day I was in the hospital, except for the very last day when I was discharged for the 2nd time (day 15 or 16).
Dr. Patricia Sylla, Colorectal Surgery, laparoscopy specialist - very nice lady. Youngish, fast talker but good bedside manner, genuinely felt like she cared about my condition.
Dr. Joseph Bornstein, Surgical Fellow - young, but a great communicator. Wonderful bedside manner, gentle, and explains things very well. Most of the time when doctors leave you think of lots of questions, but he explained things so well (with very little prompting) that this didn't happen.
Dr. Ari Grinspan, Gastroenterology with a focus in FMT (poop transplants)- young, very enthusiastic, easy to talk to, made me smile.
Dr. Ari Grinspan, Gastroenterology with a focus in FMT (poop transplants)- young, very enthusiastic, easy to talk to, made me smile.
Up next... recovery, going home, and then more emergency room fun!
THANK GOD your colon didn't rupture!! Wow. What a scary possibility. I'm so glad you were in great hands - and like you say, at least you knew what to expect with all of this because of your mom. Not that you'd want anyone else to go through it but sharing the experience with someone so close no doubt made it a little easier to understand/ absorb in such a short amount of time.
ReplyDeleteIt's a shame you couldn't try FMT - I've read some great things about it, and they're doing it in England for Crohn's etc, not just c diff....half tempted to take N over there and try it before all of these scary meds!