FAQs
Q: What is a total proctocolectomy?
A: It is a surgery that removes the colon, rectum & anus. I have what is called a ”permanent end ileostomy.” This means that the end of my small intestine (called the ileum) was pulled through an incision on my stomach. Because they removed my entire colon, my ileostomy is considered permanent & I cannot have it reversed.
After the surgeon removes the anus/rectum, he/she sews the area shut. Your butt is no longer an out for anything. It sounds a lot more shocking than it really is, especially if you suffer from Crohn’s or ulcerative colitis. When you have these diseases, you go through so many horrific tests/procedures. Every doctor has seen your butt in great detail. It’s whatever by the time you have arrived at the point where surgery is warranted.
You know how women say after you have a baby you lose all dignity? It’s like that. If you don’t try to keep a sense of humor about it, you’ll just spend the rest of your life crying in the fetal position.
Q: Why did you have this surgery?
A: I have Crohn’s disease. I first got sick in late 2006 & wasn’t officially diagnosed until late 2010, which allowed the disease to really fester, as it was left untreated.
Crohn’s Disease Infographic
When I was finally diagnosed I was put on many rounds of a very nasty drug called Prednisone. This drug makes you a very mean, angry, hungry human being & it does a lot of damage to your body, which is why many doctors try not to use it as a long-term solution.
Prednisone gave me a cataract in one of my eyes & has literally destroyed my once pretty teeth. Prednisone also caused a lot of weight fluctuation & what I like to call “chipmunk cheeks.”
I failed other medications, as well....Lialda, Imuran, Humira & Entyvio.
Humira gave me a rare side effect on my brain (on the cerebellum) called a “demyelinating lesion.” Because of this lesion I was unable to drive for a while & had to be in physical therapy twice a week to learn how to walk normally again. I am happy to say that the lesion has healed since going off of Humira.
Entyvio was my last resort. The drug itself was fine; I went twice a month for infusions & had no side effects. It just didn’t work. I had what is called a fistula that my surgeon was unable to surgically repair. I was eighty-six pounds, in constant agony & literally felt like the weakest link. My gastroenterologist suggested trying Stelara or Tysabri as last-ditch efforts, but both of those medications present the risk of a brain infection known as PML. PML can kill you if left untreated. Because of my history with the demyelinating lesion, the doctors (including my neurologist) couldn’t say with certainty whether or not I was at higher risk for PML. To me, that wasn’t a risk I wanted to take. I was done.
I prayed about it & my gut (literally & figuratively) told me it was time for surgery. I wanted to make the decision while it was mine to make, instead of waiting until my colon was so diseased that I was in an emergency, life-or-death situation.
I went for consultations with two different surgeons & they both recommended surgery. I went with the surgeon that tried to repair my fistula, as I knew him well, he had a great reputation & I trusted & felt comfortable with him.
Q: Do you miss going to the bathroom ”the old way?”
A: I honestly don’t think about it. I still pee like anyone else, but everything else goes into an ostomy bag. I just empty the ostomy bag every few hours into the toilet & go on my merry way. I change the bag itself every three days, usually first thing in the morning when my stoma is pretty inactive.
Q: What is it like to have an ostomy?
A: I wear wraps that hide the bag under my clothes. You cannot even tell that it’s there. I wear wraps made by a company owned by Convatec called Ostomy Secrets. The wraps have pockets that the bag is tucked into. I love these wraps because I tuck my cell phone into the left pocket while I am working out so I can listen to Spotify on my phone.
For the most part I have completely accepted my “new” body, but I would be lying if I said I don’t have days where I miss the way my stomach used to look. I have four scars from my surgery stab wounds, but they are very small since my surgery was done laparoscopically. I made the diagram below in Illustrator using a stock photo to try to put into perspective where my scars are & just how small they are in the grand scheme of things.
I sometimes get self-conscious, but I try to stay positive. I try to be open when people ask me questions & not get offended by dumb, ignorant comments. This surgery saved my life--some people will just never get that. I also try to be open because I remember how terrified I was about having this surgery, and there is such a lack of information out there for patients who are about to go through the same thing. No one likes to talk about poop, even though we all do it. Yours comes out of your butt, mine comes out of a stoma & into a bag. Either way, it is the same darn thing.
Q: What about sex?
A: This is also why I love the ostomy wraps--they keep the bag out of your way. I dare say my sex life is better than it’s been in years because I no longer feel so sick & weak all the time.
My husband is very supportive. He is glad I had the surgery because it gave him back his happy, upbeat wife.
If you are dating, be open about the fact that you have an ostomy. Any person that can’t handle it isn’t someone you’d want as a partner, anyway.
This isn’t an issue for me since I do not want any more kids, but they do say that women with an ostomy have a more difficult time getting pregnant & are at higher risk for complications if/when they do get pregnant.
Q: Is there anything you can’t do anymore?
A: Not really. I still exercise, although I try to be careful what I do because you can get a hernia or cause the stoma to prolapse if you do anything too strenuous. I usually just walk, lift light weights or do ten minutes on our rowing machine.
They say to be careful with fresh fruits & vegetables, but I haven’t had any issues--I just try to make sure I chew my food really well. However, I do avoid popcorn/nuts/seeds, as those are most likely to cause blockages.
Also, I can’t get constipated like most people can, as constipation is something that happens in the colon.
I dare say since my surgery I am living my life more fully than I have in years.
Q: What is the best thing about having this surgery?
A: It gave me my life back. I am no longer on any medications for my Crohn’s disease. Now that I am off the Prednisone my dentists are beginning the work to restore my teeth, which I cannot WAIT for.
I love that I can enjoy food again. I love that I no longer have to go for colonoscopies every six months.
Unfortunately, my Crohn’s disease can never be ”cured” & can return to other areas of my digestive system, but I try not to think about this. I try to just enjoy the present.
Xoxo,
Beth