FAQs
Q: What is a total proctocolectomy?
A: It is a surgery that removes the colon, rectum & anus. Â I have what is called a âpermanent end ileostomy.â Â This means that the end of my small intestine (called the ileum) was pulled through an incision on my stomach. Â Because they removed my entire colon, my ileostomy is considered permanent & I cannot have it reversed. Â
After the surgeon removes the anus/rectum, he/she sews the area shut. Â Your butt is no longer an out for anything. It sounds a lot more shocking than it really is, especially if you suffer from Crohnâs or ulcerative colitis. Â When you have these diseases, you go through so many horrific tests/procedures. Â Every doctor has seen your butt in great detail. Â Itâs whatever by the time you have arrived at the point where surgery is warranted. Â
You know how women say after you have a baby you lose all dignity? Â Itâs like that. Â If you donât try to keep a sense of humor about it, youâll just spend the rest of your life crying in the fetal position.
Q: Why did you have this surgery?
A: I have Crohnâs disease. Â I first got sick in late 2006 & wasnât officially diagnosed until late 2010, which allowed the disease to really fester, as it was left untreated. Â
                     Crohnâs Disease Infographic
When I was finally diagnosed I was put on many rounds of a very nasty drug called Prednisone. Â 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.Â
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 âchipmunk cheeks.â
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 âdemyelinating lesion.â  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.  Â
Entyvio was my last resort. Â The drug itself was fine; I went twice a month for infusions & had no side effects. Â It just didnât work. Â I had what is called a fistula that my surgeon was unable to surgically repair. Â I was eighty-six pounds, in constant agony & literally felt like the weakest link. Â 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. Â PML can kill you if left untreated. Â Because of my history with the demyelinating lesion, the doctors (including my neurologist) couldnât say with certainty whether or not I was at higher risk for PML. Â To me, that wasnât a risk I wanted to take. Â I was done. Â
I prayed about it & my gut (literally & figuratively) told me it was time for surgery. Â 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. Â
I went for consultations with two different surgeons & they both recommended surgery. Â 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 âthe old way?â
A: I honestly donât think about it. Â I still pee like anyone else, but everything else goes into an ostomy bag. Â I just empty the ostomy bag every few hours into the toilet & go on my merry way. Â I change the bag itself every three days, usually first thing in the morning when my stoma is pretty inactive. Â Â
Q: What is it like to have an ostomy?
A: I wear wraps that hide the bag under my clothes. Â You cannot even tell that itâs there. Â I wear wraps made by a company owned by Convatec called Ostomy Secrets. The wraps have pockets that the bag is tucked into. Â 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. Â
For the most part I have completely accepted my ânewâ body, but I would be lying if I said I donât 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. Â I try to be open when people ask me questions & not get offended by dumb, ignorant comments. Â This surgery saved my life--some people will just never get that. Â 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. Â No one likes to talk about poop, even though we all do it. Â Yours comes out of your butt, mine comes out of a stoma & into a bag. Â Either way, it is the same darn thing. Â
Q: What about sex?
A: This is also why I love the ostomy wraps--they keep the bag out of your way. Â I dare say my sex life is better than itâs been in years because I no longer feel so sick & weak all the time. Â
My husband is very supportive. Â He is glad I had the surgery because it gave him back his happy, upbeat wife. Â
If you are dating, be open about the fact that you have an ostomy. Â Any person that canât handle it isnât someone youâd want as a partner, anyway. Â
This isnât 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. Â
Q: Is there anything you canât do anymore?
A: Not really. Â 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. Â I usually just walk, lift light weights or do ten minutes on our rowing machine. Â
They say to be careful with fresh fruits & vegetables, but I havenât had any issues--I just try to make sure I chew my food really well. Â However, I do avoid popcorn/nuts/seeds, as those are most likely to cause blockages. Â
Also, I canât get constipated like most people can, as constipation is something that happens in the colon.Â
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. Â I am no longer on any medications for my Crohnâs disease. Â Now that I am off the Prednisone my dentists are beginning the work to restore my teeth, which I cannot WAIT for. Â
I love that I can enjoy food again. Â I love that I no longer have to go for colonoscopies every six months. Â Â
Unfortunately, my Crohnâs disease can never be âcuredâ & can return to other areas of my digestive system, but I try not to think about this. Â I try to just enjoy the present.
Xoxo,Â
Beth













