Six years since my bowel resection: What I wish I knew then

Six years ago, I was shaking like a leaf getting rolled into the operating room for bowel resection surgery. Six years ago, I felt overwhelmed by the thought of my body getting cut into, by the realization of my body having scars, by the fear of the unknown, and feeling as though I had failed myself and those close to me. The first decade I had Crohn’s disease, I always thought of surgery as the last resort. With each flare up and hospitalization, my biggest worry was needing a surgery of some sort. I constantly wondered about becoming one of the 50% of people with Crohn’s who ultimately end up with surgery. August 1, 2015, I became part of that statistic, when I had 18 inches of my small intestine, appendix, ileocecal valve, and Meckel’s Diverticulum removed. Surgery went from being an option to a necessity.

Looking back now—I want you to know if you need surgery, it’s not a reflection of failure on your part as a patient. While it may feel like the world is crashing down around you, you’ll see the pain, the fear, the recovery—it’s all fleeting. Time waits for no one. Before you know it, you’ll be like me. I blinked and it’s been six years. The scars and memories remain, but as more and more time passes, they become less of a big deal.

I’ve had several fellow IBD’ers reach out with questions recently about bowel resection surgery—everything from bleeding to bloating, asking me about my experience, and surprisingly it’s hard for me to remember those details!

I credit bowel resection surgery for removing a decade of disease from my body (not curing me) but giving me a fresh start and ultimately putting me into surgical remission. Remission that has been maintained for six years now. Prior to surgery, the first ten years I had Crohn’s, I was never in remission. Since surgery I was able to get to a place in my disease journey where family planning and pregnancy were possible without any complications or waiting. I’ve been able to bring three babies into the world and haven’t needed to be hospitalized for my Crohn’s since becoming a mom. I went for a walk with my husband and three kids yesterday (August 1, 2021) and found myself reflecting and feeling a great deal of gratitude as I thought about the stark contrast of where I was six years ago in comparison to now.

August 1, 2021. 6 years post-surgery.

Tips for Surgery: Before and After

Take a before photo. The day before my surgery, I took a photo of myself standing in front of the bathroom mirror in my bra and underwear so that I could remember what my body looked like before it had scars. I took the picture for myself and have never shared it. When I look at the picture now, I see a girl with sadness in her eyes and a longing for days without pain. I see a girl who is petrified of what could be and praying for relief. I see a thin, untarnished body on the outside, but one that is very sick on the inside. I highly recommend you take a photo of yourself prior to surgery so you can capture that moment. One day you’ll look back on that time and be able to see how far you’ve come. You won’t think of your scars in a negative way, but rather a reminder of all you’ve overcome. I don’t even notice my scars when I look in the mirror now.

Communicate with your surgeon. If your surgery isn’t an emergency and you have some time to talk with your surgeon, make sure you do. Talk with your care team about what the surgery will entail—how many inches of intestine will be removed, if an ostomy is a possibility, where they will do incisions, etc. This will help you mentally prepare for what’s to come. My surgeon came into my hospital room prior to my bowel resection and asked me where I would want the incisions. We knew I would have the laparoscopic incisions, but we discussed a horizontal vs. vertical incision as well. I said I wanted the incision to be as low as possible—he told me he would do a “c-section incision” …which worked out wonderfully for me. I know of many people who have had a couple inches of intestine removed and have a large vertical scar (I had 18 inches taken) and that type of incision was not necessary.

Once you’ve had surgery push yourself to get up and get moving. Don’t overdo it, but every step, every movement will help you heal. Before you know it, you’ll be able to bend down and tie your shoes, walk a little further, and stand a little taller. After my surgery it was a struggle to walk around my family room, then before I knew it, I was walking outside…each day making it to one house further around the block. Before I knew it, I was able to take long walks. When you’re laughing, coughing, sneezing, or driving, have a small pillow nearby to hold against your incision, this will alleviate a lot of the pain. The first two weeks is the hardest. Once you hit the 2-week mark, you’ll feel a ton better. You’ll be able to drive and get around with minimal pain. Just hold on to that thought those initial days when it’s emotionally and physically pretty brutal. I remember crying my first night at home because I was so overwhelmed by the pain and my inability to get out of my own bed. At the time a family member was battling ALS. Her fight and knowing that her health was deteriorating daily, while mine was improving with each hour that passed, gave me perspective and brought me back to earth.

Trust in your care team. Once you have surgery, then the priority is to determine how managing your IBD will look moving forward. I, like many, had this false sense of security after surgery that I felt so great, I wouldn’t need to go back on my biologic…or any medicine for that matter. After a lot of tears and discussion, I followed my GI’s recommendation to re-start Humira and add a bunch of vitamins and supplements to the mix (Vitamin D, Calcium, Folic Acid, and a prescription prenatal). I give my GI a lot of credit for being proactive and having a “come to Jesus” talk with me, if you will. She warned me my Crohn’s disease is aggressive and by going med-free, my risk of being back on the operating table 3-5 years down the road would go up exponentially. Six years later, I’m so glad I listened.

Be patient with your healing. I’ve had three C-sections and bowel resection surgery, and the recovery is very different. I try to explain this to women who come to me with questions wondering about the two. With a C-section you have incisional pain/burning, but with an IBD-related surgery you also have to heal from the inside, too. Organs are cut, removed, and reattached. Your digestion needs to recalibrate. It’s a lot more intense of a recovery than a C-section (which I’m going through right now). Be patient with your body. Ease back into normal activities. After my bowel resection surgery, it took me nearly 8 weeks to return to work full-time at my desk job. Prior to returning to the office, I worked half days for two weeks from home because it took time to heal enough to sit upright in a chair. As your digestion re-works itself, it’s not unusual to have an accident or not be able to ‘hold it’ the same as you could prior. For me, this was temporary. But in those initial weeks and months, it’s a good idea to have a change of clothes in your car or packed with you and to be mindful of where the nearest bathroom is. I had one accident during my recovery—luckily, I was home alone (working a half day), it was mortifying, and I was by myself. Don’t try and rush back to normalcy, give yourself time to heal mentally, physically, and emotionally.

3 weeks post-op, laughing through the pain during engagement photos.

If you find out you need surgery—it’s understandable to be upset. But also give yourself a chance to think of all that could be possible. Try and focus on the promise of how surgery could help you get into remission or at least help you in having more “feel good” days. It’s normal to grieve and to be tearful and fearful, but I hope you find comfort in knowing once you wake up from surgery, you will be on the road to a recovery that paves the way for feeling empowered against your illness. And from that point forward you won’t be as scared of future surgeries because you’ll have a better idea of what to expect and a better understanding of how it feels to be well after being in pain for so long.

How it feels to be hospitalized as a mom with Crohn’s

It’s my greatest fear, having to be hospitalized with a Crohn’s flare as a mom of two little ones. It’s something I think about all too often. The thought alone scares me. It’s difficult to imagine the reality of the experience. Since becoming a mom, I’ve been fortunate enough to stay out of the hospital. Unfortunately, for a friend of mine in the IBD community—she’s had to face this reality all too often.

Her son, Beckham is two months older than Reid. Our little guys could pass for brothers. This week—a guest post from Brooke Retherford, a fellow IBD mama from Wisconsin. She shares the raw emotions she’s experienced since her diagnosis at age 13.

IMG_2014I’ve had my fair share of surprises and obstacles with Crohn’s disease. My patient journey includes numerous surgeries, multiple doctor appointments a week, sitting in hospitals getting Remicade infusions, switching up medications to tame a flare and my all-time favorite, hospitalizations for days at a time. Please note the sarcasm in that last sentence.

These instances are not by any means convenient or something I or anyone else with Crohn’s looks forward to. Hospitalizations are such an emotional time for someone fighting this disease. The uncertainty, the physical pain, being absent from work and home and causing those around you the inconvenience of throwing off schedules for a week at a time. But, the absolute worst part is adding an infant to the mix.

When my son was just 4 weeks old my Crohn’s reared its ugly head and sent me and my disease packing to the hospital for a week. IMG_2015When the pain presented, I tried everything I could to avoid the trip. I just wanted to stay home and live my life with a newborn, enjoy the snuggles and oddly enough the 3 am feedings. Then, the time came when I couldn’t even get through a feeding without needing to set him down so I could run to the bathroom. I knew it was time.

It was no walk in the park having to be away from a little one. I cried. I was upset and mad at my situation. I felt like a terrible mom for letting the disease consume my life and take me away from my child. Luckily, I have a great support system that understands the emotions behind a hospitalization. My husband always brings our son Beckham to the hospital. I get to FaceTime my family to say goodnight and get pictures of my son throughout the day. Family (1)

Unfortunately, that wasn’t my last stint in the hospital for Crohn’s. Now that our son is two, I have officially lost count of my time spent away from him. Hospitalizations never get easier. Especially now when he knows I am physically absent from his life and he asks, ‘where did Mommy go?’ It’s heartbreaking and frustrating.

There are always tears involved, mostly mine, but I’ve come to terms with the fact that I am a better mom for realizing that I need to make myself healthy and not let this disease define what type of parent I am.