What do you say when a friend or someone that you love has been diagnosed with cancer? You want to be there for them and comfort them but you also want to make sure that you’re not saying something that’s going to upset them or make them feel even worse than they already do. Well, I am here to help. How do I know? Welcome to Life as a Cancer Survivor. My name is Jelena and at age 34 I was diagnosed with stage 3 rectal cancer. Throughout my time as a survivor, I have immersed myself in the cancer world and made tons of friends within that along the way. Throughout our journeys, we vent or share some of the best and worst things to say to a cancer patient, so I’ve compiled a lot of those together for this video. So let’s get started with the good stuff, things to say.
Things to say to a cancer patient
I love you.
When it’s a loved one that’s telling you their diagnosis it’s always good to start out with and “I love you” as a comforting reminder that they aren’t alone in this.
I’m sorry that you have to go through this.
This acknowledges that you realize that what they’re going through is very difficult. I’m here to listen. Telling them that you’re there to listen shows them that you care for them and that the focus of the conversation will stay on them and not on you when they need to talk. A person goes through tons of emotions when they’re diagnosed with cancer and those emotions can change from one minute to the next so letting them know that you’re there to listen gives them another person that they know that they can turn to if they need to talk.
Can I bring you dinner tomorrow?
Or any specific thing that you want to do to help. It doesn’t have to be tomorrow but give them an exact date. If that date doesn’t work then the patient can offer an alternative right there for you. And it doesn’t have to be dinner either it could be groceries, snacks, tea, coffee, offering to walk the dog, or babysit. They’re overwhelmed with so many things that it’s easier for them to just say yes or offer a quick alternative rather than leaving an open-ended date for something.
Would you like for me to take you to any of your appointments?
Even if they have a significant other, that other person may not be able to take time off of work to accompany them to every single appointment because there’s going to be a ton of them. A lot of information is covered in those appointments so it’s always helpful to have a second person there to help with remembering all that information. Sometimes these appointments can get emotional too and it’s nice to just have another person there with you that can help to comfort you that’s not your doctor.
I’m thinking about you.
This one is good once treatment is started just to let them know that you haven’t forgotten about them.
Would you like to come to. . .?
Don’t assume that they aren’t up for anything social. Keep inviting them to things and let them determine whether or not they feel well enough or have enough energy to accompany you to those things. Not inviting them makes them feel like you’re abandoning them and that you’re not there for them at a time when they really need friends and support.
Now for some things not to say. Don’t fret if you’ve sent any of them because I’m guilty of having said a few of them as well. A lot of these, they’re said with the best of intentions but I’ll explain why they may not be the best things to say to a patient.
What NOT to say to a cancer patient
At least.
It minimizes what they’re experiencing and feeling. You can almost always find someone that has it worse but that doesn’t mean that others that are struggling aren’t having a hard time too.
Let me know if you need anything.
They are so overwhelmed that they have no idea what they need and once they do realize that they’re in need of some stuff they don’t have the time or the energy to try to figure out who could do what for them. Take a note from my “What to say” section and tell them that you’re bringing them dinner on Thursday.
You’ll be fine.
You have no idea what their prognosis is and even if you do every person is different and you have no idea which side of the statistics that this person is going to fall into.
Don’t worry. It’s no big deal. It could be worse.
A cancer diagnosis is a big deal, even if it’s caught early and can easily be treated. They’ll have this cloud of cancer following them around for the rest of their lives. Saying one of these is similar to giving the “At least…” line, which minimizes what they’re feeling and can make them feel even worse for having any kind of emotion about this.
My aunt’s neighbor had the same kind of cancer and they died.
This obviously doesn’t help at all other than to increase their anxiety about their diagnosis. Even if you’re bringing this up to try and compare treatment plans it’s not helpful. Our minds already think the worst when we hear that we’ve been diagnosed with cancer we don’t need to hear about other people that have died from it. Plus, you’re stealing the conversation by focusing everything on you and your story.
Everything happens for a reason.
A cancer patient doesn’t want to hear that maybe there’s some dark, behind the scenes reason that they got cancer. Just say, “I’m sorry this happened to you,” and move on.
Tomorrow isn’t guaranteed. I could get hit by a bus tomorrow and be dead.
You don’t worry every day that the bus is going to hit you and you’re going to die. You don’t have nightmares about the bus hitting you and killing you. And you don’t go to bed worrying about whether or not that bus is chasing you. Cancer is always looming over our heads. The bus is not.
It’s the “good” kind of cancer.
There is no good kind of cancer. They all suck in their own way. Saying that they have the “good” kind is again like saying, “at least,” don’t say it.
You should. . .
Are you an oncologist? Then you have no business giving them any kind of medical advice. Don’t tell them they should be doing this or they should be feeling this. We’re all different. We all handle treatment a little different, recover different, our emotions are different, so it’s up to us to figure out what’s best for ourselves. Unless we’ve asked you for advice, please don’t give any.
They lost their battle.
When a person dies from cancer, pleasedo not say that they lost their battle. They tried their hardest to beat their cancer and saying that they lost implies that they’re a loser and they gave up. If it was solely up to a person’s will there would be a heck of a lot more people that would be beating cancer but that’s not how it works. Also, the cancer dies with the person so it’s a tie at best.
This is by no means an exhaustive list but hopefully, it gives you a good starting point of some good things to say and to avoid saying. Want a printable version of this list? Click here to download this handy infographic to use and to share.
Let me know down in the comments below if there are any really important ones that I’ve missed. Want to hear what it’s like to be on the receiving end of getting a cancer diagnosis? Click here to read about my diagnosis story. Thanks for watching.
Click here to download a printable version of Talking to a Cancer Patient.
*This video was originally published on January 8, 2021
FOLFOX Chemo Side Effects and Tips to Deal With Them
Hi everyone! In this video, I’m gonna dive deeper into the side effects that I experienced while on the IV chemotherapy FOLFOX and some tips and tricks that I either learned or figured out to help manage them. In case you’re new here, welcome to Life as a Cancer Survivor. My name is Jelena and in May of 2016 I was diagnosed with Stage 3 Rectal Cancer. This channel, I started to show you what life is like as a young Colorectal Cancer survivor and how life is both during and after treatment ends. You can also follow me and my life adventures over on either Instagram or on Twitter the handles are popping up over here but I’ll also have links that will take you directly to my profile so you can follow me down in the description below. So come on over and say, “Hi!”
I received eight rounds of the IV chemotherapy FOLFOX starting on December 13th, 2016. Within the first hour of that infusion, the side effects started kicking in. I had been sipping my water the whole time off and on, but all of a sudden when I took a drink and I swallowed, it felt like I was swallowing glass. It really startled me and I wasn’t sure if I was just going crazy or if that actually happened so I took another sip and the same thing happened so I realized that must be the cold sensitivity that my Physician Assistant or my PA had been talking about when I went to the chemo training class and why they recommend drinking only warm beverages for those first few days at chemo and after receiving chemo.
I would go in for chemo on Tuesdays then usually around Saturday sometimes a day or two later, that cold sensitivity of my throat would go away by then. But in the meantime, it was warm water only for me. I usually just sip water throughout the day so I would have to keep reheating my glass of water over and over in the microwave because even at room temperature it still felt like I was swallowing glass so it had to be warm water that I was drinking. By the second or third round of chemo, the water started tasting like rubbing alcohol to me. So I had to have my husband, John, taste test it to make sure that something weird wasn’t going on with our water at our house. He said it tasted normal so it was just my tastebuds changing and causing that water to taste like rubbing alcohol.
Here are some tips and tricks that I learned or figured out to help with managing that called sensitivity in my throat and that bad water taste without overdosing on sugary drinks:
-Add some apple juice, or your favorite juice to a glass of water. I would do a mixture of about 25% juice 75% water, and that helped with taking that bad taste of the water away. On the days where you’re experiencing cold sensitivity, warm that glass up in the microwave after you’ve mixed the juice and the water together.
-Flavored sparkling water like La Croix, Bubly, or just your favorite grocery store brand of sparkling water is a good way, a good thing to drink to help keep you hydrated on those
days that you’re not experiencing the cold sensitivity but when water tastes nasty.
-Herbal tea is another beverage that you can drink either hot or cold and also you can sweeten it easily to your liking. My favorite ones are the fruit flavors Celestial Seasonings teas, but any of the fall and winter flavors of their herbal teas are also delicious.
Other cold sensitivity side effects that I experienced were, the first one was when cold wind would blow in my face it would be like a stabbing pain like needles stabbing me in the face. I would try to cover up with a hat and a scarf to hide as much of my face as possible but the wind would still sneak in somehow and I would get that needle stabbing feeling in my face. One other cold sensitivity side effect that I also experienced was I needed to wear oven mitts to grab stuff out of the refrigerator because if I touched cold things with my hands it felt like I was getting electrocuted in my hands as soon as the cold hit my hands so, the oven mitts protected me and kept that feeling of being electrocuted constantly away from my hands.
One major side effect that you’ll experience most likely no matter what chemo that you’re on is fatigue. My Oncologist’s PA mentioned when I asked about the fatigue, she said that it was gonna be more intense than the fatigue that I felt while I was on the oral chemotherapy Xeloda the summer before. So she was definitely right. When I would come home from my infusions at the cancer center I would go straight to bed and take a nap for at least two hours and that was in like the late afternoon. Then I was still exhausted after dinner and I’d be ready for bed at like 8 o’clock in the evening, which is unusual for me because I’m usually a night person. So I would go to bed at like 8pm and I’d fall asleep for two hours or so, but then I’d wake up and I couldn’t fall back asleep and I’d be restless all night and exhausted the next day.
Finally at my third pre-chemo appointment with the PA I mentioned that restlessness and the horrible time I was having sleeping and the PA she was like, “Oh, that’s most likely from the Leucovorin because it’s a kind of steroid that you’re getting in your infusion so let me prescribe you some Ambien to help you with your sleep.” So she told me to just take it for those three or four days at the beginning when I was really having a lot of trouble sleeping so I did and it worked like a charm. And I didn’t get any of the bad side effects like the sleep eating or sleep-driving while I was on it and I didn’t get addicted to it either so for me it was a good solution to help me with those temporary sleep problems.
Even with the Ambien to help me with sleeping at night, I still felt fatigued on many days. The fatigue is just different from feeling tired. Even when I would get a full night’s sleep and would nap I would still feel exhausted. Taking naps or trying to get out for some exercise which usually would perk me up didn’t work at all. There wasn’t really a whole lot that I could do beyond trying to get a full night’s sleep at night to help the fatigue other than to limit the amount of energy that I put out during the day and make sure I wasn’t pushing myself too hard or doing too many things.
So one change that we did make was we moved Maelle from half-day kindergarten to full-day kindergarten so instead of us having to go get her at 11:15am, she would be at school until 3:15pm, which meant that I had a lot more time to get in those naps during the day without her being at home, and we wouldn’t have to her I wouldn’t have to hurry home after chemotherapy to pick her up at 11:15 in the morning she was at school till 3:15pm, so that was stress that was taken off of me as well. Now I just had to keep her entertained for about two hours or so after school instead of from 11:15am to 5:30pm when John came home from work.
Another common side effect for anybody going through chemotherapy is nausea. I was written a prescription for two different anti-nausea meds Zofran and Compazine. The instructions I was given were on the day of chemotherapy I would usually get home early afternoon or so, I was supposed to take my first Zofran that evening and then every 8 hours for the next 2-3 days I was supposed to keep taking the Zofran. The Compazine was there in case I had breakthrough nausea or I got nauseous in between the Zofran doses I could take a dose of the Compazine to help. Well, after my first round of chemotherapy I suffered with nausea for a few days and the Compazine and Zofran didn’t really seem to help at all. I wasn’t throwing up but I didn’t have any kind of appetite and just felt nauseous. So after the second round instead of waiting until the evening to take the Zofran, I took it as soon as I got home from my chemotherapy and that seemed to work. So I just started those right away instead of waiting a few more hours which helped to kind of keep me ahead of the curve of nausea and kind of stop it before it started getting out of control. There are many other options of anti-nausea medications that you can take so if you’re struggling with nausea please talk to your oncologist and see if there are any other solutions that they have that they can that can help you.
The next side-effect that I had to deal with were muscle cramps in my hands. This would just happen while I was at chemotherapy and they would just kind of mostly tense up and it would be more difficult to try and move them like normal. I don’t really have any solutions to this but it was comforting to know at least that this was something that was going to happen and it wasn’t anything that was life-threatening just to keep me calm when it would start happening. Once the cramping went away, my hands just kind of in general were feeling weaker and even today three years later I have troubles with unscrewing lids on jars, when I’m typing I make a lot more mistakes, and even when I’m trying to play my violin moving my fingers quickly can be a struggle sometimes.
I also got neuropathy in my feet. It started out as a feeling like when you sit on your foot wrong and it falls asleep, then the feeling that I had was the part when your foot starts waking up. And that would usually only last for like a day or two but then as I moved further and further along through my rounds of chemotherapy it kind of started lasting longer and longer and by my last round of chemo, they decided to leave the Oxaliplatin out completely because that’s what causes it and they didn’t want to cause any further nerve damage.
The tingling then changed to the “my foot just fell asleep” feeling and I would only have that pins and needles tingling occasionally. I didn’t ever completely lose feeling in my feet but the neuropathy did make it harder for me to react quickly on my feet. I never really noticed it too much except like when we would go hiking I would feel a lot clunkier, and if I didn’t have the high-top hiking boots that I always wore there were many times where I would have snapped an ankle because I couldn’t have reacted fast enough on the rocky terrain to straighten myself up. Also when I would exercise or walk for more than a half-hour at a time, my feet would start burning. Wearing some compression socks that went over the calf did help a little bit but it didn’t completely get rid of that burning feeling. And then eventually every night when I would go to bed and lie down in bed that burning feeling would return to my feet. That’s when I decided it was time to try some acupuncture to see if that would help. It definitely wasn’t a quick fix, but I am happy to report that after two years of acupuncture treatment the tingling and burning did finally go away in my feet.
One more side effect was my sense of smell got thrown off sometimes. I noticed this the worst or the most when I would shower. The water coming down on me in the shower it would smell like cooked cabbage. Multiple times I called John and had him come over and smell the water while I was in there to see if it smelled to him, but he thought it smelled like normal so it was just me and my sense of smell was off and somehow the water smelled like cabbage. That also could be partially why like water when I would drink it would smell like rubbing alcohol. It was weird, there’s no solution that I came up with it, but it’s another strange thing to look forward to.
Of all of the side effects that I experienced during chemotherapy, the only ones that I still am experiencing 3 years later are weakness in my hands and fatigue. The fatigue partially could be from the anxiety medication that I’m currently on which causes fatigue as one of the side effects, but I was experiencing this fatigue even before I started those anxiety medications. It’s definitely not as bad as when I was on chemo, but I need 8 hours of sleep every night otherwise I am exhausted the next day and need a nap to make it through. I also get tired a lot more easily after exercising, doing housework, or doing yard work.
Do you have any tips or tricks on surviving through the side-effects of chemotherapy? If so help fellow cancer survivors out and let us know in the comments below.
Please make sure that you’ve clicked on the like button right down here so that YouTube knows you’re enjoying my videos and they’ll show them to more people. Also, make sure you’re subscribed so you never miss any of my latest videos and I hope you all are staying safe and healthy, and thanks for watching.
*This video was originally published on June 5, 2020
Today I’m going to cover my most requested topic: my ileostomy reversal surgery. So be prepared there’s going to be a lot of poop talk. My name is Jelena and at age 34 I was diagnosed with stage 3 rectal cancer. I had an ileostomy for over 7 months after my lower anterior resection, or LAR, surgery. The LAR surgery it’s where part of your colon and rectum are removed and the new ends they’re sewn together and you get a temporary ileostomy while that resected site heals. An ileostomy is where the end of your small intestine is run out of your abdominal wall to create a stoma and your waste exits your body through there. My ileostomy was reversed on June 4th, 2017 and this is my story on how that went how recovery was and a little bit about how things are today. I’ll also give you some tips on how to survive those first few days post-reversal.
The first step in getting ready for surgery is going in for a Flex Sig, which is short for a flexible sigmoidoscopy. They do this procedure to check and see visually how that resected site where your colon and rectum were sewn together to see how that’s healed. It’s different from a colonoscopy in that the camera – it only goes part of the way up your colon so it just goes up to the site where the colon and rectum were sewn together it doesn’t go through your entire large intestine. My procedure was done at the hospital by my surgeon and the prep for it was easy. All I had to do: I wasn’t allowed to eat after midnight, no drinking after 3:45 a.m., check-in was at 7:30 a.m., and the procedure was at 9:00 a.m. I was knocked out for it and when I woke up I was told that everything looked good and this test was passed. So this test, this procedure, was done five weeks before my ileostomy reversal surgery was scheduled.
Next up was a gastrografin enema test. Gastrografin is a water-soluble clear liquid that shows up on x-ray pictures and this test is done to make sure that there are no leaks at that resected site where your colon and rectum are sewn together. There was no prep for this procedure because they’re only looking in your large intestine and since I had the ileostomy there was no stool in my large intestine and you’re awake for this procedure. First I had to remove all my clothing from the waist down and put on a hospital gown, and while I did that, the tech prepared the gastrografin solution. You lie on your side on a table for this procedure and the first thing that the tech did was insert what was basically a deflated balloon with a tube running through it up my butt just past my sphincter muscles and then inflated that balloon so that the tube wouldn’t come out during the procedure. So that was not very comfortable. Then came the gastrografin so there’s over one liter of this fluid that gets pumped into you slowly into your large intestine. As it’s getting pumped in it gets more and more uncomfortable the more liquid’s in there and I kind of started cramping a little bit because of all that liquid being pumped in. Once the over one liter of fluid is in then you have to hold it inside of you and then the tech proceeds to take a bunch of x-ray pictures of you laying on your side, turning to the other side, on your back, with like your butt up in the air on your back in like a bridge position. It was, um, not comfortable.
When she had finished there was a bathroom connected right to that room and I pretty much just had to walk like six feet to get into that bathroom. So she said that the liquid shouldn’t come out before I get to the bathroom. Well . . . she lied. As soon as I stood up and took my first two steps I could feel some of that liquid dripping down my leg. I mean, my sphincter muscles haven’t been used in months, and even if they had been it’s really hard to hold liquid in, so I just rushed as quickly as I could to the toilet, sat down and a bunch of that fluid came out. I stayed on the toilet for about 10 minutes because I still felt like there was more in there that needed to come out, so there was another like round of the liquid coming out. But then nothing else was coming out, so I assumed all was okay so I got dressed and went home. But once I got home there was one more round of the liquid gushing out of me and then I was okay for the rest of the day. Thank goodness I passed the test and there were no leaks, so that meant I had the full go-ahead to get my reversal surgery.
This time I did a little bit of research ahead of time before going in for my surgery to learn a little bit more about what I should expect and what I should bring to the hospital with me. I only brought one pair of clothes because I knew from my previous hospital visits I wasn’t changing out that hospital gown until it was time for me to go home. I did bring a few pairs of underwear with me, though. I bought some adult diapers to bring with me and some diaper rash cream. I also learned that the usual criteria for letting a person go home after their reversal surgery is they first have to pass gas and then they have to pass a bowel movement. So since I knew I wanted to spend as little time as possible in the hospital, my goal was to take as few pain medications as possible, because those pain medications, they constipate you. So if I was constipated that means that would delay when my first bowel movement would happen.
My surgery was scheduled for 9 am on June 5th, 2017. My surgeon was also going to betaking my port out at the same time during the surgery because I was done with treatment and I was declared that I had no evidence of the disease so my oncologist said to go on ahead and get my port removed as well. The mood was definitely a lot different for this surgery versus my LAR surgery. I was excited to go in for this surgery because I couldn’t wait to get that ileostomy reversed. The couple of weeks leading up to this surgery, the skinaround my stoma was starting to get really red and irritated and I just didn’t really put a whole lot of effort into trying to figure out how to fix it because I knew that the ileostomy was going to be reversed. So I just got a prescription powder to put on the redness and sucked it up while I waited for that reversal surgery.
Surgery itself took about two hours and then I was taken to the post-anesthesia care unit, also known as the PACU, to wake up before I got sent to my hospital room. It took me longer to get out of the fog of anesthesia and it was making me anxious and apparently, I started freaking out because I was really disoriented, but I don’t remember any of this at all. They didn’t give John specific details as to what I was doing or saying they just told them that they were going to hold me in the PACU for a little bit longer while they made sure that I was calm before bringing me up to my room.
I was immediately allowed to start on the clear liquids diet once I was up, so that meant it was time to start on the jello and vegetable broth diet. I was being given Tylenol to manage my pain, but the pain was much more tolerable than with my LAR surgery. It was only like a two or three on the pain scale. Maybe because they just had to sew the hole in my small intestine up and basically just shove it back inside of me, and then take my port out. The hole where they put the stoma back into me, they didn’t even sew that shut they just packed it with gauze and then loosely covered it with a bandage. the port scar is pretty gnarly looking as you can see from this picture I thought it looked like I had lips on my chest and, even to this day, the scar is still pretty big and noticeable. Let me show you. Here’s what it looks like.
I was able to move around in my bed and even get up and walk on that first afternoon in the evening. I was really pleased with how much easier this surgery was and hoped that that meant that I was going to be able to get home much faster. The next morning around 5 am I passed my first fart out of my butt in months. Passing gas is that first step in showing that your bowels are waking up and working, so I was upgraded to the full liquids diet forbreakfast, and then got moved up to the soft foods diet for lunch. I spent the day just walking the halls because walking is supposed to wake your bowels up faster than just lying in bed. Plus, since I wasn’t really in a whole lot of pain, I didn’t want to just lay in bed anyway since there wasn’t anything else to do other than watch tv or walk. I also started having some mucus leak out of me and got a spot or two on the chucks pad on my bed and messed up one of my pairs of underwear. So then I switched over to wearing the adult diapers.
Right after gauze removal
Wednesday morning I had my first bowel movement and it seemed normal. But in anticipation of the rest not being very normal coming very soon, I made sure to put some diaper rash cream on my butt to protect it. Having a bowel movement meant that I could be discharged, so I was super excited about that. To prep me for going home, first they took the gauze out of my stoma hole wound at about 7:30 a.m then by 9 a.m it was completelyclosed up already. It was really weird. Here’s the picture progression. I believe they leave it open and let it close itself up because if there’s any little traces of bacteria they want it open so that as it closes up it kind of pushes that out instead of having it sealed or having
90 minutes after gauze removal
it sewn shut and the bacteria is trapped inside. My surgeon’s directions for eating once I got home was to just eat like normal, no diet restrictions at all. My follow-up appointment with him was scheduled for two weeks from that discharge date and he said that he wanted to give my bowels time to adjust and regulate to being normal again and didn’t want me taking any kind of medications to regulate them for at least a month.
Once I got home though, that’s when the literal poop storm began and all hell broke loose. Anytime I stood up, it felt like all the waste inside of me just rushed down immediately and I had to hurry as fast as I could to get to the bathroom to let it out.
Once I was on the toilet though, not a whole lot came out. It felt like more needed to come out but nothing ever did. Every bowel movement was a six on the Bristol scale. If you’re unfamiliar with the Bristol scale, it’s a chart that rates your bowel movements. Let me show you the chart. A four is the normal that you want to strive for. One and two on the scale mean that you’re constipated, a six or a seven are considered diarrhea.
The first few days were spent just lying around on the couch because anytime I stood up I had that feeling that everything in me was rushing out and I would have to go to the bathroom. Even when I was lying on the couch though all day I still had almost a constant feeling that I needed to go and pass a bowel movement. I tried to hold it for as long as I could before going to the bathroom in an attempt to try and retrain my bowels so that they weren’t sending me those signals that I needed to go constantly. This wasn’t anything that a doctor told me it was just something that in my head I thought maybe would help. Instead of wearing an adult diaper I switched to wearing pads and just positioned them to the back end of my underwear to catch any leaks. I never had any like full out accidents so the pads were plenty good enough to just catch the little bit that would leak out occasionally. I didn’t count how many times I was going to the bathroom those first couple of days.
But by Saturday I was going so much I decided that I needed to track this so that I had actual data to give my doctor when I went in for my follow-up appointment rather than just saying “I’m going all the time,” I would have an exact number to tell him “I went this many times on these days.” I downloaded the My Symptoms tracker onto my phone and in that,you can keep track of your food, medications that you take, uh you can also track your bowel movements, where they fell on the Bristol scale, and also even track how urgent those movements are on a scale from zero to ten. Before I go through that tracker with you let me quickly tell you that before cancer I would usually have one bowel movement a day, it would be a four on that Bristol scale and I’d be in and out of the bathroom within five minutes.
So here’s what Saturday looked like. I had a total of nine bowel movements but I’m almost positive that I didn’t start tracking them until after lunch so I’m sure there was at least one or two before that very first one right before lunchtime. As you can see, the urgency was pretty high all afternoon and into the evening. The bathroom visits did not let up overnight on Saturday night so as you can see I didn’t really get a whole lot of sleep that night. You know how much your butt hurts after just like one or two episodes of diarrhea? Well imagine that, but going like 10+ times a day. That’s basically what I was experiencing.
My butt was getting really raw and it was burning every time that I was going even though I was putting diaper rash cream on after every visit to the bathroom. I felt like I basically lived on the toilet on Sunday with a total of 17 visits, and almost all of them were urgent but it did let up for Sunday night so that I could get some sleep. Sunday was also the first day that I saw my first fives on the Bristol scale, so we had moved from a six to a five so there was a little bit of good news there. Monday I had 12 bowel movements that were pretty much looking like peas and marbles, and my butt was so raw the diaper rash cream wasn’t helping at all anymore. I used some Dermoplast on my butt to try and cool it off a little bit but since I was going to the bathroom basically like every hour it wasn’t really working for very long.
Tuesday I started the day with two bowel movements before breakfast, another four before lunch, and my butt just couldn’t take anymore, so I turned to the internet to see if I could get any ideas of anything that I could do at home that didn’t involve medication to help me. The overall consensus was that my surgeon was crazy for telling me to just eat a normal diet and that most other people had been told to eat a low-residue diet when they came home from their ileostomy reversal surgery. So what exactly is the low-residue diet? It basically limits the amount of high fiber foods that you eat such as like whole-grain cereals, whole-grain breads, nuts, seeds, raw fruits, raw veggies with the goal of you having fewer bowel movements and smaller bowel movements. What you want to do is look for foods that have one gram of fiber or less per serving. This diet is only meant to be followed temporarily because it’s really hard to meet all your dietary needs on it.
So what foods can you eat? White bread, white pasta, refined cereals, canned fruits andvegetables, milk and foods made from milk like cheese and yogurt, tender meats, eggs, tofu, butter, margarine, and dressings without seeds. You want to make sure that the foods that you cook they’re soft and they’re tender. And you also want to make sure that you drink plenty of water so that you don’t get constipated. I sent my parents to the grocery store Tuesday afternoon with a list of all of the stuff on the low-residue diet so that they could buy me stuff and I could get started with this diet ASAP. It did help some because Wednesday and Thursday I only had eight trips to the bathroom on each day and I was brave enough to go outside and walk up and down my street so that I was still close by in case I did get an urgent feeling to go I was close enough to a toilet.
Then Thursday I started having poop that was a number four on the Bristol scale. Friday the urgency of my visits started going down by a lot too. There were still some that were urgent but I felt like I was finally making some progress. Saturday the number of visits went back up to 16, but they were pretty much all a number four on the Bristol scale, and I believe part of the reason I went so many times was because when I was in the bathroom just to urinate I would also just pass a little bit of stool also.
Then on Monday, I started to get nervous about having to go to my surgeon the next day for my follow-up appointment. The drive to his office was about 20 minutes and I was really nervous about making it to and from his office without pooping myself. Then Tuesday came and I surprised myself and made it to and from the office without an accident. During the appointment, my surgeon looked at the ileostomy wound site and said everything looked like it was healing just fine. Then he asked how my bathroom visits were. I told him it was really bad and painful and that I started a low-residue diet the week before to try and slow things down and to let my burning butt heal. He got mad at me for restricting my dietand said he would start me on some medications so that I could get back to eating a normal diet. He said that I could take Metamucil to bulk up my stools and I could take one Imodium daily to slow them down. But he didn’t tell me to avoid taking them at the same time.
After a few weeks of taking both of them, I found out that you’re not supposed to take any medications within two hours of taking the Metamucil because the Metamucil can reduce the efficacy of those medications. I took them both together that afternoon for the first time and I saw an immediate improvement in the urgency of my bathroom visits. I was still going a lot but by the next day I no longer had diarrhea and all of my bowel movements were fours or fives and I even had a three in there.
Wednesday night my sister and her husband flew into town to visit and by Thursday I was out on the town taking them around to all the touristy spots. I had nine bowel movements that day, but they looked normal and the urgency didn’t disrupt any of our activities that day. Then Sunday I was able to ride in the car for over an hour to take our daughter, Maelle to an overnight camp and I survived the ride back home without feeling like I needed to go urgently and without having an accident. Exactly three weeks from my surgery day I felt like I had improved enough that I no longer needed to track my bowel movements. I wasn’t completely back to my pre-cancer normal but my butt was healing, it wasn’t burning anymore, and I was confident enough to leave the house without being afraid of having an accident.
Exactly eight weeks after my reversal surgery I participated in Fight Colorectal Cancer’s Climb for a Cure and hiked for over eight hours on a mountain and only pooped once during that entire hike. That was a HUGE victory for me only having gone to the bathroom one time in eight hours. There would still be bad days but I wasn’t confined to a couch anymore and I felt like I had more control over when I actually needed to go.
Have more questions about how the reversal recovery process goes? Catch me live on YouTube on Thursday, September 17th at 12 p.m. Mountain Time. I’ll be on for about an hour answering all the questions that you have about the ileostomy reversal process and how things are going now. Make sure that you’ve clicked on the subscribe button and the notifications you’re getting all of them so you’ll be notified when I do go live and when all my future videos are posted. I hope to see a bunch of you on Thursday when I go live. Thank you for watching.
*This video was originally published on September 11, 2020
tolerable than with my LAR surgery. It was only like a two or three on the pain scale. Maybe because they just had to sew the hole in my small intestine up and basically just shove it back inside of me, and then take my port out. The hole where they put the stoma back into me, they didn’t even sew that shut they just packed it with gauze and then loosely covered it with a bandage. the port scar is pretty gnarly looking as you can see from this picture I thought it looked like I had lips on my chest and, even to this day, the scar is still pretty big and noticeable. Let me show you. Here’s what it looks like.
was putting diaper rash cream on after every visit to the bathroom. I felt like I basically lived on the toilet on Sunday with a total of 17 visits, and almost all of them were urgent but it did let up for Sunday night so that I could get some sleep. Sunday was also the first day that I saw my first fives on the Bristol scale, so we had moved from a six to a five so there was a little bit of good news there. Monday I had 12 bowel movements that were pretty much looking like peas and marbles, and my butt was so raw the diaper rash cream wasn’t
