When treating us for appendix cancer, most doctors prepare us well for the surgery ahead, explaining copious paperwork, requisite hospital stays, recovery expectations, and HIPEC technicalities. They get us through tests, scans, consults, and discussions that ultimately land us in the operating room (OR) for 5 to 15 hours. It’s a lot to take in.
Many physicians don’t want to scare us away from the lifesaving surgery and standard of care that adds years to our lives. Other professionals refuse to burden our thinking (and create worry) with a littany of side effects that may – or may not – happen. Almost all of them underestimate the amount of time it takes for us to return to Life at our New Normal. Yes, there are those standby considerations: “Every patient is different,” and “Recovery is not linear.” But really? Wouldn’t you like to know?
With all that in mind, we compiled 16 “revelations” Pals experienced after CRS/HIPEC procedures. We are not medical experts, so simply note this list, and discuss these topics with your appendix cancer specialist and medical team. Not all side effects happened to every Pal, or even most of us. But they do occur often enough that we thought you should be aware. Because you can’t help but ask “Is this normal?” Most times, yes it is. This way, you can prepare yourself mentally in case it does happen to you and you can pivot. (We compiled this list from personal experiences shared during twice-weekly, PMP Pals HOPE Zoom meetings.)
Hair loss:
After HIPEC treatment, some Pals experienced hair THINNING in the first three months post-HIPEC. All who lost hair experienced regrowth in Months 5-6-7.
Ileus:
Doctors often refer to the ileus as a “sleepy intestine that needs to wake up.” We call it a recipe for vomiting and should be monitored closely. Farts, while good indicators of an awakening gut system, are not “poops.” Be honest about your progress with your medical team. Returning to the hospital after discharge for a still-to-wake-up colon degrades mental recovery momentum. Walking can help, but sometimes Time just has to do its thing.
Shoulder/arm/hand soreness/numbness:
You were just in the OR for many hours, lying down in the same position. We don’t do this when we sleep in our own beds. Pinched nerves are possible but rarely happen…until they do. Talk to your doctor. Some Pals found relief with a gentle chiropractic adjustment; others needed additional expertise to remedy. Still others found the soreness and numbness dissipated with Time.
Difficulty breathing:
Let’s be honest; someone just had their hands (and tools) in your abdomen. It takes time for things to simmer down and find their right place. This may take days, weeks, months. Many people experience difficulty taking in a full, deep breath. There are several reasons for this. First, your surgeon may have removed portions of a diseased diaphragm. Discomfort may also be residual from the inflated abdominal cavity during HIPEC treatment. Lastly, abdominal clamping used to keep the belly open for surgery can cause internal bruising of your rib cage and oblique muscles that you can’t see. Our experience suggests continuing to use your hospital-issued spirometer at home. Experiment with the 4-count Box Breathing Technique. Talk with your specialist or physician’s assistant if the difficulty persists. If at any time you are experiencing pain or have concerns, advocate for yourself immediately and tell your clinician!
Decreased appetite:
The intestine begins healing within an hour of surgery. And it will continue to heal and adjust to its new length and function over time. When you get home, you may want to eat everything in sight or have no urge to eat at all (usually due to fear or exhaustion). Be gracious with yourself, but make every bite count. Include protein-rich and max-calorie shakes and food combinations post-surgery. Protein provides the building blocks for repairing tissues. If you are having trouble with protein, it’s ok to default to what works for you, even if it’s pound cake…as they say: Life is short, eat dessert first!
Inability to eat certain foods:
As your intestine heals, you may go through periods of digestive change where you tolerate one food well but not another. Then a week later, it reverses. Keep a Food Diary to track your progress. You may discover you have a food allergy that was long masked by other symptoms. Or you may need to switch it up and eat smaller, varied, frequent meals throughout the day. Many foods may move from “Definitely Not Eating That Now” to “Maybe I’ll Try That Again Later” timelines.
Weight loss:
So, you stop eating the day before surgery for bowel prep. Then a week or two passes before you are managing solid foods. Pals have lost anywhere from 15 to 80 pounds while in hospital. Once you return home, monitoring your weight is part of your wellness job. Ask for guidance or a food plan to follow. Creating “mass” is hard to do; don’t wait until you are dangerously low on the scale. Weight loss slows healing, forces your body to improvise, and robs you of needed energy to feel well. TPN (total parenteral nutrition) is a medically prescribed approach to halting declines and is overseen by your medical team. Weight gain needs strategy; check this other blog post about protein and caloric add-ins for smoothies and meals.
“What’s up with that?” episodes:
Many Pals experience diarrhea, constipation, and unpredictable elimination. Some are advised to use diarrhea medications (Lomotil, Imodium) to gain control over unexpected bowel movements. Others need medications to address bile imbalances created by gall bladder removal. Still others simply adjust their diets and decrease water consumption when eating to “prolong transit” (the rate of food moving through the intestinal tract between entry and exit). Other Pals have the opposite problem. As we experiment with food, we will eventually find the sweet spot of fiber, yogurt, or a toasted slice of refined wheat bread to stabilize a reactive gut. Keep a “Poop Diary,” noting the foods you eat and what happens, and in what timeframe. Then work with your nurse practitioner, nutritionist, or dietician to uncover an approach that works for you. Remember too, that as your gut heals and improves, so may your tolerance to certain foods and their elimination.
Abdominus Recti (aka hernia):
Don’t worry, your guts won’t spill out on the floor like a B-movie horror flick. Abdominus recti – the separation of your interior suture line generally between the abdominus rectus muscles at your belly’s midline – is common. Hernias can pose issues for bowel obstruction as the intestine loops out of the abdominal cavity to a space just under the skin and then loops back in. Monitor this closely with your physician. Be smart. To avoid hernia in the first place, heed post-op instructions to minimize lifting of anything over 5 pounds for Weeks 1-8. Gradually increase core activity and impact over time. Wear the abdominal binder. And seriously, no lifting grandchildren, grocery bags, laundry baskets, or ladders in the early months of recovery.
Bumpy suture line:
Some patients note an uneveness between the two sides of their belly, left and right of the suture line. Upon closure in the OR, your surgeon cannot match your ab muscles up like they were before. But they will do their best. In many cases, the peritoneal lining has been removed on one side and not the other. And in the absence of removed organs, what’s left will settle into their new spaces within your roomier interior. When advised by your physician, try easy elongating massage with a scar cream to smoothing out a bumpy suture line.
Belly buttons:
Moved, missing, or relocated – have this belly button conversation BEFORE surgery! Living without a navel removes mindless gazing, but you certainly want to be prepared for that visual when the dressing comes off. Sometimes, your surgeon can fix a wonky belly button and you come out ahead after surgery. Lint catchers – you have been forewarned.
Tubes – everywhere:
Tubes can be a good thing, even in places where you don’t think they should be. Tubes help you heal quicker. They also give you progress milestones. Tube removal – catheter, epidural, NG (nasogastric tube), drainage, IVs, etc. – are signs of healing and getting a step closer to the hospital exit door.
Weepy suture sites:
Serous, or serousal, fluid is a natural by-product of inflammation and a healing gut. Generally, this fluid is absorbed internally by your body. Sometimes, this fluid seeks the easiest way out, usually an incision site. Keep your dressings clean and monitor for redness, warmth, or hardness which are early indicators of possible issues like cellulitis or infection. Eventually, swelling and weepiness subside. Unsure how to change your dressing at home? Ask your nurse or wound-care specialist to show you how, while you are still at the hospital.
Lack of energy:
Your body is healing inside AND out. So while your abdominal scar staples are removed in two weeks, and that midline scar is healing nicely during weeks 3-4, the inside of you still has a long way to go. This healing requires ENERGY. Give your body what it needs. Eat small frequent meals, chew your food, and focus on easily digestible, high-protein food selections when possible. Nap frequently. Minimize long visits from old friends. If you think a task will take you 10 minutes to do, double it. And be gracious with yourself. Many Pals saw their energy level return in Months 4-8.
Longer recovery time:
We see progress at different rates because we had different procedures done. And we’re different people, at different physical ages and fitness. Pals undergoing longer surgeries involving extensive organ involvement tend to take longer to heal. Most Pals see energy return around Month 4 and “normalness” around Month 8. The Pals majority began feeling like themselves a year post-op. Be patient. Set small milestones for yourself like sitting up in bed without groaning, walking upright (no shuffling) to the bathroom on your own, or heading down stairs unassisted. Push yourself gently but don’t badger yourself. Work within your limitations and take baby steps forward to a long, slow, and consistent recovery.
@&$% happens.
Surgery is a body trauma. Some Pals experience delayed recovery due to complications, predictable or not. Recovery is also a mental marathon. You don’t need to anticipate a setback but understand it’s possible, and that’s ok. On the other hand, seamless recoveries are possible! Be optimistic about your recovery timeline and set realistic expectations.
Mind you, NONE of this may happen to you. We put these items in the “I Wish I Had Known Beforehand” category. The mental game is a huge part of positive recovery scenarios. If we wrap our heads around the surgery and what to expect physically ahead of time, we can divert more mental energy to driving through the long game to LIVING Life Well.
Good luck with your procedure. Know that you are not alone and we have HOPE for you! Let us know how you are doing on Facebook or at a HOPE Zoom meeting.
Have something to add? Send us an email and we’ll start a companion list to the one above for future sharing.
PMP Pals does not provide medical opinions or advice. Please consult your appendix cancer specialist for guidance on these issues and others you may be experiencing. Advocate for yourself by asking questions and getting to know your medical team.
On a recent HOPE Zoom call, Pals around the world shared how they wrapped their heads around heading into CRS & HIPEC. This starter list is part of a Pals Tips Series: what to do before surgery, surgery prep, in hospital, going home, and long-term recovery. We broke it down to smaller, more manageable phases of transitioning through this Gold Standard of Treatment – cytoreductive surgery and hyperthermic intraperitoneal chemotherapy – for appendix cancer. We will revisit this series from time to time as Pals experience lends more insight on this life-saving procedure.