Beth+3

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, 

These are the things I learned firsthand having just recently come out of a total proctocolectomy.  Remember, I’m not a doctor.  :-)

Preparing for Surgery:

1. Don’t be surprised if you’re an anxious mess--your emotions will likely be all over the place.  You will second guess your decision to have surgery multiple times a day.  You will allow your mind to go to those worst-case scenarios.  It is normal, and I found that the more I tried to fight these emotions, the worse they got.  If you are having a difficult time coping, let your medical team know--they can’t help you if they aren’t aware of what you’re dealing with.  

2. Therapy is amazing.  I highly recommend it.  I am lucky to have a gastroenterologist whose office staffs a therapist that treats IBD patients.  Ask your gastroenterologist if his/her office also staffs a therapist--you may be surprised to find out that they do.  If not, there are other therapists out there that can help, or perhaps even a pastor/priest.  It is nice to vent to family & friends, but having a professional to help you work through your emotions is super helpful.  

3. Be patient with yourself.  You are about to embark on a surgical journey that will alter your body.  It is normal to want to do a lot of research, but be careful that you aren’t making the mistake I did & researching every single thing that could possibly go wrong.  I do recommend researching what a stoma looks like & how to empty & change an ostomy bag, however.  I am glad that I looked these things up so that I had a general idea of what to expect.  Also, it helps to do a little research on what things you should & shouldn’t eat after surgery while your stoma is still healing & changing in size.  

4. If you are working, preparing for a leave adds an extra layer of stress.  Just roll with the punches on this one--I stressed myself to the max regarding my leave & for no reason, as I was notified that my leave was finally approved one day after my surgery.  You will feel guilt about leaving your job duties behind while you’re gone, but you can’t let that rule you.  If your co-workers were in the same boat, they would likely elect to put their health first, too.  

5. Rally the troops.  I mean it.  ASK FOR HELP.  If you have friends & family nearby, allow them to help you.  Often times they want to help, but don’t know how, so kindly ask for whatever it is that you feel you will  most need help with while you’re in the hospital recovering--housework, errands, caring for kiddos or pets, etc.  I promise, you will be super surprised at the amount of support you will get if you just ask for it.  If there are people that would like to provide you with meals, there is an awesome website called MealTrain.  

6. If you smoke, stop as soon as you can.  Smokers are at higher risk for blood clots.  Full disclosure: before my surgery, I was a smoker.  Smoking was a terrible habit that I used as a stress reliever.  Trying to quit during such a stressful time was very difficult, but I managed to finally do it eight days before my surgery.  My co-worker was also quitting with me, and he bought me a bag of Dum Dum lollipops.  Every time I craved a cigarette I instead ate a Dum Dum.  Sounds silly, but it worked.  I also met with an ostomy nurse before my surgery & she gave me something called an Airlife Volumetric Incentive Spirometer to begin practicing breathing with.  If you aren’t able to meet with a doctor or nurse before surgery to obtain one of these, you can purchase them online & they are rather inexpensive.  It also helps to know how to use it, as they will push you to utilize one several times a day while you are recovering in the hospital post-surgery.

7. Pack well for the hospital.  Bring lots of things to entertain yourself with while you’re recovering, such as books, magazines, puzzle books (crosswords, sudoku, etc.).  I also brought my laptop & DVDs that I could watch on it, as my hospital room didn’t have many TV channels.  I don’t recommend bringing a lot of clothing--just some comfy socks, an outfit to go home in, and if you want to bring PJs, I recommend forgoing two piece PJ sets & instead bringing a few nightgowns--make sure they are nightgowns you don’t mind parting with if you get anything on them.  I also brought my toothbrush & toothpaste, my own shampoo & conditioner & my cell phone charger, as well as a pillow from home just for comfort.  

I didn’t edit this picture in any way, shape or form--I want to give a real idea of what it looks like to come out of a total proctocolectomy.  This was taken the same day I had my life-altering surgery.  Going into surgery, I had a ridiculous amount of anxiety due to the millions of “what if’s?” running through my mind.  

The anxiety was so bad that I had a difficult time functioning in my day-to-day life before the surgery & was put on Ativan the week beforehand.  I had to continue the Ativan during my hospital stay post-surgery because my anxiety continued to flare, making it difficult for me to get much sleep.

I often think that mental health & Crohn’s disease go hand-in-hand, though it’s more a chicken or the egg debate--is the anxiety caused by the uncertainty of your day-to-day health with Crohn’s, or is it anxiety exacerbating the intensity of your Crohn’s?  We may never know.

I had the surgery June 10th & had to be at the hospital at 5:30 in the morning.  I was incredibly lucky, as my mom & stepdad, dad & stepmom, two aunts & pastor all came downtown to be with me & my husband that morning.  My pastor came into the room while they were prepping me for surgery & prayed with me & my husband, which brought me an unbelievable amount of peace.  My family stayed in the waiting room during my surgery, which ended up lasting about six hours.

I don’t remember much after the prep room, as they gave me Versed.  I do have this vision in my head...I say “vision” because I’m not sure if it’s something I actually remember, or a dream...but I believe I recall asking the surgeons & nurses to pray with me, and then I was so shocked that they agreed & so out of it, that my mind went blank & I just remember reciting the “Our Father”.  Again, not sure if this actually happened, as Versed is quite the drug...  ;-)

The next thing I remember is the recovery room, where I moaned in absolute agony, while the nurse was literally right by my shoulder doing paperwork & talking to me in the most upbeat voice.  I don’t know how to describe the way I felt...when I think of a “10″ on the pain scale, I think of when I had my youngest daughter with no epidural, and this pain was right up there.  The thing with childbirth is that the brunt of the pain leaves your body once the baby does, but with this surgery it is a constant, throbbing pain.  

Before surgery, I wasn’t sure how I would feel about having a stoma.  I wasn’t sure if I would resent having an ostomy bag attached to me for the rest of my life.  I thought I would come out hating & resenting my body, but surprisingly, I have adjusted super well to my stoma.  I love it because it has saved me.  I have named my stoma “Stewie”, as the stoma is awfully noisy.  It literally sounds like my digestive system is attempting to have a conversation with me.

They tell you that after you have this surgery, you need to get up & walk as soon (and as often) as you can, not only to help you heal & to wake up your digestive system after anesthesia, but also to help avoid blood clots.  I MADE myself walk the same day I had surgery.  A lot of my medical team told me that many patients don’t walk the same day of surgery, so I was incredibly proud of myself for managing to do it.  I am glad I did because it also helped my stoma begin working that same evening, which meant that I was able to start eating sooner.

The first two days my nurses & techs had to empty my ostomy bag for me, as the WOC nurses at my hospital don’t work on weekends & weren’t there to begin teaching me everything, so that was frustrating for me, as I wanted to be super active in learning to care for myself.  They finally came on Monday & showed me how to empty my ostomy bag, as well as change it.  On Tuesday I changed my bag by myself for the first time while my WOC nurse oversaw me, and I was so proud of myself.  

For those wondering, an ostomy bag doesn’t smell if you empty it often throughout the day.  I empty mine a lot, as it’s annoying to me when it fills up, as it becomes heavier & begins to tug at my skin.  I am still swollen & healing, so anything tugging at my stomach just adds to my overall soreness.  I can’t yet tuck my ostomy bag into my pants due to soreness, so when I go out, I am constantly making sure I am wearing a longer shirt & that the bag isn’t hanging out for all the world to see, although at this point, if anyone sees it I just don’t care--this surgery has saved me.

I say it has saved me because I am no longer in constant agony.  My Crohn’s disease was constant pain...my colon had become so diseased that I hurt whether I ate the right (or the wrong) thing.  I hurt no matter what I was (or wasn’t) doing.  I had a lot of resentment in me...I looked at the world & everyone seemed so happy & healthy & I hated that I couldn’t be like everyone else.  The constant pain made me grumpy & angry & just miserable to be around.  I used to be so happy & positive & I just HATED what Crohn’s did to my body (and my outlook).  I was just DONE.  I failed five medications & wound up with a demyelinating lesion on my cerebellum from one of them--Humira.  That lesion took away a huge portion of the summer of 2015.  I could hardly walk due to a collapsing leg, I wasn’t able to drive, and I was in physical therapy twice a week to regain function.  

When my colonoscopy in April of this year showed that Entyvio wasn’t working, and I was presented with the option of trying Stelara or Tysabri vs. just getting the total proctocolectomy, I decided it was just time to do the surgery.  The thought of surgery used to terrify me, but that was before I dealt with the lesion on my brain.  To me, that lesion was more terrifying than any surgery.  You only get one brain.

My surgeon was amazing.  Due to my anxiety, he put me in a private room (as you generally have to share a room at the hospital I was in), and he wrote on my script that I had to have a family member stay with me every night, so my husband & my mom took turns staying with me, while the other stayed at home with my kiddos.  As I said, even though I was on Ativan, and it did help, my anxiety was still out of control & I stayed up many nights reading or watching movies on my laptop.  My surgeon said that my colon looked & felt very diseased, so I made the right decision in doing the surgery.  I feel very lucky that after they studied my colon, there wasn’t anything terrible going on, such as cancer--just very active Crohn’s.  

It is bizarre to me to when I really stop & think that my colon is gone--that they literally pulled five feet of colon out of me & now there is this empty space inside of me where it once was.  Some days I cry at the drop of a hat.  I think it is normal to mourn that you lost an organ.  Does that sound weird?  It may if you’ve never lost an organ or a part of your body.  I am incredibly emotional & moody right now & quite literally driving my husband & mom nuts, but I am so thankful that they are here with me & helping me get through this recovery.  

I am also thankful to my church for organizing a meal train for us.  I am grateful to everyone that came to visit me in the hospital.  I am thankful to everyone that sent flowers, movies, magazines, etc.  I just thank God that I had this support system rally around me.  If I did not have this, I don’t believe that my recovery would be going as well as it has been.

So far I am doing great.  The only scare I have had was Sunday morning when I woke up with a fever & diarrhea.  I called my surgeon & was terrified that he was going to make me go back to the hospital, but luckily he just put me on Immodium & fluids & I was able to fight off whatever it was that was going on.

I have a home healthcare nurse that comes twice a week to monitor how I am doing & she is so great--so easy to talk to & laidback, and I feel lucky to have her.  

The one thing I really hate are the Lovenox shots.  They are to prevent blood clots & have to be done for thirty days.  Because I have no stinkin’ body fat right now, they have caused huge bruises all over my legs where they’ve been administered, so some days it hurts to walk.  I cannot WAIT until I am done with these.  I mostly hate shots because they remind me of having to do the Humira injections, which obviously bring back bad, scary memories of the lesion.  

An up: The demyelination on my brain caused by the Humira has healed.  A few weeks ago I received the best news ever--a normal brain MRI.

A down: This past Tuesday I had a colonoscopy to check on the progress the doctor hoped Entyvio was making.  Unfortunately, the medication isn’t working.  I have been put back on Prednisone & am once again at a crossroads.

I guess I am just tired of the roller coaster I am on.  When I start a new medication & it seems to be working, I am at the apex--I feel like I am on top of the world!  And then if it stops working (or doesn’t work at all), it is a painful, stomach-churning ride back down to the bottom.  I don’t want to be on this ride anymore.  I am tired of it.  

I cannot try Remicade because of the reaction I had to Humira.  I have two medications left as options--Stelara & Tysabri.  Both carry the risk of PML, and while I know the risk is small, it isn’t one I want to take after seeing what demyelination alone is capable of doing.

I have decided to go the surgery route.  I will have an ileostomy for the rest of my life.  Should I try these last two medications & they do not work, I would end up in surgery anyhow, and likely in an emergency, life-or-death situation.  I want to face the surgery on my own terms.  I want to give myself ample time to prepare for the recovery.  If I can plan this out, I can have the support system in place & ready to go while I am healing.  

I have Googled images of a stoma & at first I didn’t want to face that my body will look similar, but the more research I do & the more I force myself to face the reality of this disease, the easier it is beginning to come to terms with it.

Last summer--the first time my leg gave out & I fell in a parking lot--it wasn’t just a literal fall; it was metaphorical.  Emotionally, mentally, physically I was on the ground.  Lowest of the low.

Since my diagnosis with Crohn’s disease in 2010 I put my blinders on.  I didn’t want to see it, feel it, deal with it.  I didn’t want to try scary medications or change my diet.  I wanted my colonoscopies to be a buy three, get the fourth free.  

The summer of 2015 was the smack in the face--my disease would not be ignored.  It was not havin’ it.  There were days that I really wondered if I was dying & I would tell God that if He was going to take me, I just needed Him to get it over with already.

My kids had to watch their mother wither down to eighty-eight pounds.  My husband had to do everything because I wasn’t strong enough to lift a basket of laundry or even push a vacuum.  I spent the majority of my summer on the couch feeling sorry for myself & crying; but also terrified.  Humira had taken my brain & f*cked it up.  

Quite honestly, I don’t know how I got through it.  I look back on it & I cannot even believe that I did it.  I am not, by nature, a particularly strong & brave person.  I don’t go outside of my comfort zone.  I don’t take risks.  I don’t “do” the hard stuff.  But I did this!

I learned how to ask for help.  I learned that it is okay if other people see you fall apart--it’s how they know you’re human.  We are not built to be a species that does it alone.  I had a village behind me once I got the nerve to say, “Hey, I need help.  I am not okay.”

I found a new doctor that I trust and appreciate.  I started an infusion medication--something I never thought I could do.  I go to my infusions alone now, and I don’t think twice about it.  I took myself to the hospital for my weekly blood tests & made friends with Frank in the lab.  I made it through an exam under anesthesia.  I took my kids to physical therapy appointments with me twice a week and they got to witness their mama re-gaining her strength.  

I have started going to a therapist that specializes in treating patients with IBD. I am hopeful that she will help me recover from the traumatic things that happened, as I am only fooling myself if I say that they did not have a profound effect on my emotional well-being.  I want to stand on my own two feet again, figuratively speaking.  

I do not want to allow this disease to define me; however, I do want to make the fact that I have this disease mean something.  I want to do my part to raise awareness and to contribute to research.  I have signed up to participate in a study of patients with IBD & I will continue doing CCFA’s Take Steps walk every year.  I would like to start a support group for children with parents suffering from autoimmune diseases.  We all talk about the patient, but no one talks about the families of the patient--they suffer too, and in profound ways that are often ignored.  No amount of physical pain can compare to the emotional pain I felt when my children cried and worried I was going to die.  

My husband has been my rock through all of this.  It’s easy to promise “in sickness and health” when times are good, but he kept his promise to me & I can never express in words how grateful I am to him for keeping it all together while I was falling apart.  I don’t know what I did to deserve him, but every day I thank my lucky stars.