Anonymous author and NETs (Neuroendocrine) patient
|A Zebra is a rare disease|
The purpose of this is to provide tips if you are having open abdominal surgery due to a neuroendocrine tumor. In my case, I felt like I was going into surgery with very little knowledge of what to expect. I realize that everyone is different - different age, sex, weight, health issues (high blood pressure, diabetes, etc) and has a different type of NET. In my case, I’m 62, female, in good health and shape with no heart issues or diabetes. I don’t smoke and am within my weight limit. Therefore, I didn’t go into this with any handicaps (except having incurable cancer of course).
These tips are just general guidelines from other ACOR Zebra’s (Association of Cancer Online Resources) based on input from a number of members. Those with NETs refer to themselves as Zebras . In the medical world, a Zebra is a very rare disease and a NET or Carcinoid tumor are very rare. Remember, always follow the advice of your health care professionals. This is a ‘tips’ article, not medical advice. These tips will likely apply to a broad range of abdominal ‘open’ surgery.
I had 6” of distal ileum resected, my gallbladder and appendix removed and 3 small metastases to my liver removed. I was in surgery about 2 ½ hours at a world class facility with a very experienced surgeon and team. My incision was 9 ½”. Most of the tips below came from ACOR Zebra’s with similar surgeries involving a site source, liver metastases (METs), lymph node involvement and removal of the gallbladder.
The tips below are in no particular order.
Things to bring. Clothing that is comfortable like PJ pants, sneakers, house coat, fleece and t-shirts. The facility will provide tread socks while you’re there. You won't be able to wear anything with a waistband for a few weeks. I also brought all my health and beauty aids, some jewelry and other things packed in 5 Vera Bradley bags so they were better organized and my family could more easily bring them to the hospital as I needed them.
Carcinoid crisis. Ask the facility how they handle potential carcinoid crisis. There are differing points of view on this from various ‘experts’.
Eating the night before surgery. Depending on the facility and if they don’t employ a mechanical cleansing procedure (drinking a gallon of Golytely), you can enjoy a normal dinner except leafy green and uncooked vegetables. Research shows avoiding colon cleansing is much less draining on patients and they recover more quickly.
Caregivers. Have at least one caregiver with you, ideally two - so they can take shifts. I had three. My husband and two daughters - one of which is a Physician Asst. and Registered Dietitian. I had someone with me 24/7 for the 5 days I was in the hospital. This was especially helful during the evenning.
Constipation. I was most concerned about constipation so I took extra psyllium fiber and Miralax days prior to my surgery. The clinic said they would manage constipation during my stay which they did. Oral pain meds like narcotic Oxycodone contribute to constipation. Therefore, getting off them when you are comfortable will aid in recovery and improved bowel function.
Pain. The incision is the area that will be the most uncomfortable, not your internal organs. I had Oxycodone (5 mg), Tramadol and Lidocaine pain patches as my pain meds. I was off the Oxy and Tramadol within less than two days of discharge (7 days post op). Within 10 days I was also off Tylenol and Advil for the most part. I had been alternating these every 3 hours - 2 Tylenol 500 mg capsules and 3 Advil 200 mg capsules. Another ACOR Zebra reported the pain from the incision lasting about 10 days and diminishing quite a bit in the second week. Take pain meds in advance of pain (keep the pain under control). That is not to say, over medicate, but don’t let the pain become ‘painful’ and then take pain meds. It takes 30+ minutes to begin kicking in.
Pain med refills in your hometown. As I said, I didn’t need any refills on Oxy or Tramadol, but I did want to get a few more Lidocaine patches. I live in a different state than where my procedure was. In the U.S. even the biggest clinics can’t practice medicine across state lines (that will change I’m sure). I called my family doctor to get a refill (and Lidocaine patches aren’t a narcotic). It took 4 calls and 3 days before I had it. I thought I had made it clear to my F.P. doc that I might need her help upon my return. Make sure you have local medical help lined up in case you are in need.
Pain meds. I had Oxycodone (5 mg) and Tramadol (? mg). As I said above, I was worried about getting them refilled back home (different state), but never needed to. I still have most of the ones I left with. One ACOR Zebra reported being off them within 2 days in the hospital. Don’t be a hero - do what’s right for you. My pain post op and two weeks following discharge was well controlled. The main tip is to head pain off… if you feel it starting, take something. For example, I took an Oxy 30 minutes prior to the 5 hour car ride home (and a Lorazepam).
Prevention of blood clots, compression stockings and blood thinners. In recovery, I had automated leg cuffs on my calfs that would apply pressure to my calf muscles automatically on a timed interval - kind of like a NASA space suit that pumps blood to an astronauts head. If felt like my little 12-pound poodle Stella was jumping on me all the time. This helps prevent blood clots. They also gave me a blood thinner twice daily in the back of the arm.
Catheterization. The catheter was removed within 24-hours. There was no pain or discomfort upon removal. I started walking about 18 hours post op using a walker I could grab onto -- with the help of two nurses. After a day or two, I didn't need the nurses.
Oxygen. I had oxygen on Day 1 because my blood pressure was off. This was normal I was told.
Blood work. Daily blood draws to check my progress. Sadly mine were drawn in the middle of the night. They need the results for the Doctors when they make their rounds early in the morning.
Doctor visits. My surgeon and his team (Interns) visited me in the morning (6:30 to 9:00 am) and again in the late afternoon. The surgeon only attended two of the ‘rounds’. He had a very qualified team however. The day I left, my husband and I were walking the halls and bumped into him. We thanked him for his skill. We were surprised that 5 days later he could recall the entire procedure (and he did 3 on that day alone).
Nursing staff. During my 5 day stay, there were about 15 nursing shift changes. During the shift change, both nurses would come in my room to discuss the ‘hand off process’ so I could also hear it and comment if something wasn’t accurate.
Current meds. I brought all my current meds with as well as a few copies of my list of meds and allergies. That proved to be useful.
Discharge. In my case, I never felt like I was being ‘kicked out’. On day 5 in the early morning, an intern from the surgical team suggested to me that staying in the hospital was more dangerous than a hotel room (due to infection). He said if you stay in town for a day or two, we are just a phone call away. That convinced me and so I took a shower and was gone by noon (saved a day's room charge).
Consider staying in a local hotel upon discharge especially if you have a longer drive or flight home. You don’t want something going wrong on the drive home and have to be admitted to the ER of a small hospital. When booking a hotel room if you plan to stay by the hospital for a day or more, book a handicapped room. The bathrooms will be more conducive. One Zebra reported staying with family nearby for two weeks.
I was told by the discharge nurse to buy Tylenol (500 mg) and Advil (200 mg) and alternate every 3 hours or as needed (Tylenol - 2 capsules; Advil - 3). Upon discharge, we had to drive to a Walgreens to pick these up as the hospital pharmacy did not have a store (which we thought was odd). You may want to come prepared with some or ask what your clinic recommends. This is why it's good to know where a drugstore (and grocery store) are nearby.
Driving home. My drive home which would have normally been 4 hours, was 5 because my husband made frequent stops so I could walk around for a few minutes. I wore very comfortable clothes and had a soft pillow and comforter in the seat with me. I held the seat belt a few inches away from my incision. I slept/rested a good deal on the drive home. Some reported that bumps in the road really bothered them, but I was fine. I took 5mg of Oxy and 5mg of Lorazepam before beginning the trek.
Incision care. The staff will tell you the do’s and don’t with your incision. My incision used dissolvable stitches. Keep the incision clean - you can shower within 48 hours. Most likely you’ll be given some antibacterial liquid soap to use on the incision (which is uncovered). No swimming or tub until the scar is entirely healed.
Stitches and scarring. Your stitches may or may not be dissolvable - mine were. Perhaps they all are these days. I don’t know. You can use a scar cream after a couple of weeks. One to recommend is TriDerma Scar Block, available at Amazon, etc.) for about $15. Apply it and then stick an ultra thin feminine care pad to your clothing and it will help prevent staining.
One Zebra said after 8-months she couldn’t do a situp if her life depended on it while another went back to doing ironmans. Again, we’re all different and in a different life stage.
Grocery/Drug store. Identify a grocery and drugstore nearby in case you want something, your caregiver knows where to go. We had to find a Walgreens to pick up Advil and Tylenol upon discharge.
Driving. You can drive when you're off the narcotics and feel ‘in-control’. It's been 3-weeks for me as of this writing and I’m not yet comfortable driving on my own. I’m ‘only ‘ 62.
Stairs. You can climb stairs as soon as you feel comfortable. I was walking up and down 13 stairs two weeks post op - no pain or issues.
Rest. My family referred to me as the energizer bunny. I’m 62 and never nap. I clearly get tuckered out just showering, blow drying my hair and getting ready for the day (3 weeks post op). So while I don’t sleep, I have been sitting quietly playing games on my phone or tablet. Some Zebra’s reported napping quite a bit -- again we’re all different.
Flowers. Respectfully ask people not to send flowers. You probably aren't going to want the fragrance in your room and years from now you don't want to associate the smell of flowers with surgery. You may not have room for them. Also... how are you going to get them all home? Many flowers I saw were sitting out at the nurses station. Its much better to have some homecooked meals delivered when you get home.
Using your bed at home. Our box spring and mattress at home are pretty high and we considered removing the box spring. As it turned out, we didn’t need to as my wife could easily get in and out of bed.
Toileting. One person recommended buying a toilet seat riser which we did. As it turned out, I didn’t need it so it got returned. While we have ‘comfort height’ toilets at home, most hotel room have the low ones.
Appetite. One Zebra reported not having an appetite for about a 5 weeks. Then it slowly came back yet I kept using the stool softeners until I could eat more roughage around week 6.
Bowel function. Most people report diarrhea or loose stools - and gas. I also did a good deal of burping which I hadn’t expected. I experience loose stools which is not a lot different than prior to surgery. Also, it's only been 3 weeks. I’m not even sure what ‘normal’ is. Constipation was not reported as an issue. Drink plenty of fluids to keep yourself hydrated. You can also take any OTC product to help if necessary like Senokot. I was very nervous about becoming constipated because who wants to have to ‘push’ just after surgery. The medical team doesn’t want you doing that. Expect diarrhea and gas. Everyone is different but most have "short gut syndrome" if even a tiny bit of the gut is lost to resection. One Zebra uses freeze dried black raspberry powder daily when things get bad. See berrihealth.com.
Another Zebra reported that pancreatic enzymes, soy, whey, pro-biotics, cholestyramine, Metamucil to "bulk up" loose or watery stool never worked for her. We’re all different.
Bile absorption. One Zebra suggested asking the surgeon about effect of resection on bile absorption. You may need a bile sequestrant to avoid problems with that. Some get along fine with cholestyramine. I have had no issues post op -- but again, we are all different.
Recovery. I was told 6 to 8 weeks. Others reported 8 weeks to get back to 100%. One improved to 125% (age 50). One took 10 weeks to get to 100% and has been there for 14 years! As I said, I had three family members with me in the hospital. When I got home a week later, all three of my children were at my home with two living with us for just under a week. That was very nice!
My two biggest issues - (also reported by other Zebras) were:
- A period of cramping, bloating and abdominal distension which for me seemed to occur in the mid afternoon. I reported it to my clinic and they said that can be normal. Two weeks home, it seems to be going away. I started taking GasX or other OTC meds to ward it off.
- Sleeping - I had a hard time in bed only being able to lay on my back. At first you may not have the strength (courage) to roll over. I would get out of bed, wander a bit and sleep in a chair in my bedroom or hearth room. That lasted less than 3 weeks post op. Now I’m almost back to normal.
One Zebra reported walking 2 hours straight after 8 weeks. Again we’re all different and at different stages. Within a week home, I was walking ¾ mile and was over 1 mile in two weeks. One Zebra reported doing a lot of walking on his treadmill prior to surgery to get his strength up. Don’t over do it. Do what you can and keep in mind that you’ll be walking more slowly initially.
Work. I have my own business and luckily have a great team and can do most work from my phone or tablet if need be. My office is a few miles from home so I go in occasionally for an hour or so. After 3-weeks, I certainly couldn’t spend 6 or 8 hours at the office.
Sando LAR. One Zebra said to stay on Sando LAR. I don’t need it now post op according to my surgeon and Oncology team. I’m guessing your doctor will advise you about that.
Diet. You’ll adjust to a new normal. One suggested a probiotic (which I think is good). Warm, cool, easily digestible foods. No raw vegetables. Yogurt, applesauce, etc. I’ve enjoyed hamburgers within the first 10 days. Its really what sounds good and tastes good. My taste and smell are way off. I love wine (red and white), but not now. The taste does not agree with me. However, a brandy old fashioned tastes good. One of the Zebra’s mentioned that the anesthesia can mess us your palate for awhile. Mine certainly is. So is my sense of smell - everyone I’m around seems to have bad breath!
One Zebra said she struggled in the hospital with vomiting and some diarrhea, then she struggled to know what to eat. There are some diets online that show what to eat after a bowel resection. Two Zebra’s said they ate too much too quickly. Eat many small meals - no uncooked vegetables - soft foods are better. Where I stayed, you ordered off a menu - anything you wanted at anytime. They even made half portions. So I ordered a few things and ate what tasted good. On Day 3 I had a slice of cheese pizza. They next day I struggled to eat a yogurt. So… eat small amounts and eat what appeals.
One Zebra said she experienced nausea, vomiting, constipation, diarrhea on and off the first week. She said they will also be watching for bowel obstruction as she begins to eat again.
Lifting. Don’t lift anything heavier than a milk jug for 6 weeks. No pushing or pulling (like vacuuming).
Carcinoid syndrome post op. I had some mild syndrome - flushing, heat flash, runny stools 2 to 3 times daily. I also sneezed - a lot and when I did, I would sneeze 5 to 10 times over a period of a minute or so. Everyone commented on it. I mentioned it to my local Oncologist and she blew it off saying everyone sneezes differently. After 3-weeks post op those symptoms no longer exist.
In summary, having never had surgery before, I didn't know what to expect. It wasn't as bad as I might have imagined. The nursing staff was awesome. I researched the hospital on U.S. News and World Report.
If you have other tips, please email me at firstname.lastname@example.org and I'll add them. Thank you.