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Mikenh and Surgery

Annabelle41415's picture
Annabelle41415
Posts: 6078
Joined: Feb 2009

Just wanted to start a new post for you since you are out of surgery and have many people posting to you and you replying instead of a post on the "Manifest Call" post.  You should have your own post.  I'm glad you are in your room recovering from surgery and that all went well.  It's hard to post when you are fresh out of surgery and not feeling well, but you have done a great job explaining what is happening so far.  Yes, it is important to wait until path comes back with the nodes to see how they are but it sounds like everything went as planned.  When you get back to posting you can tell us more how you are feeling.  Rembember walk, walk, walk.  That will be your best healing medicine as it will get your body moving and getting rid of that gas that will build up.  You might have terrible gas pains that can double you over when you get home, but remember to walk, walk, walk.  Wishing you well and look forward to your updates.

Kim

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

This is a reply to Cindy from the Manifest thread. I likely overdid the exertion and underdid the pain meds so I’m taking more Tylenol and will take something stronger if the Tylenol isn’t enough. The doctors took off the wound seals and the catheter is out. I true to work on getting more rest this morning. The main issue is pain on the left side while standing or walking. I was able to do crane poses before the pain showed up. I understand Jim‘a issue with not getting enough calories. I got about 400 yesterday and it took a long time to eat it and there were a lot of interruptions. I added ten pounds from the vacation in early October so I’m not really worried about weight Loss here. The goal is to walk three times today. I will try to do some range of motion stuff and some flexibility things but I probably can’t do most of my usual stuff.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I started the colonoscopy prep eight hours earlier than expected by stopping eating Saturday night. The trip to Boston would take several hours and I didn't want an accident while driving down or taking the train to Brigham and Women's. Compounding this was the forecast of heavy wind and rain for early Monday morning. So I drove to my mother's home and took the train to a hotel next to Brigham and Women's. The weather was windy and wet Sunday evening. I forgot a lightning cable so I walked about 0.6 miles to Walgreens in the harsh weather and passed by the hospital on the way back. I decided to go in to dry off a little and ask about admitting. I found out where I should go. The lady in Admitting said that there's a huge line of people at 5:30 for 7:30 surgeries. I returned to the hotel room and did the Hibiclens for the day.

One problem with the directions is with the instruction to pour a quarter-size amount onto a washcloth. So I poured out that much as I took it to mean the US monetary coin. It meant a quarter of the bottle which I figured out on the morning of the surgery so I followed the correct directions only once. I kept doing the quarter-sized bits so I got the stuff on me but you're supposed to use a quarter of the bottle in the facecloth and squeeze it into a lather to apply.

I woke up around 3:30 to do the enema (worked very quickly), then the morning Hibiclens, and then drank the ClearFast. It was White Grape flavor and has 200 calories per bottle. Then I walked over. The rain had stopped and the wind had died down. I got there at 5 AM and was asked to sit in the waiting room after they took my name. At 5:15 AM, they opened the doors and a long line of people came in. Many with suitcases. I assume that those folks traveled, perhaps from faraway places. They then called me and I gave them my information and my workout bag. I went back to the waiting room for a few minutes and then they called me and one other person to go to the pre-op area.

They took my clothes and valuables and I was in a bed and getting stuck, poked, checked, etc. I was supposed to start at 7:30 AM but I didn't actually start until 9:45 AM and I believe that some staff didn't make it in on time. The surgeon said hello (her resident gave me most of the information and he had a very good bedside manner) and I was wheeled into the operating room and they put a mask over me and I was out in about a minute. I woke up feeling pretty sore in my back but I was otherwise not feeling any pain.

I had a back injury in my 20s from carrying a weightlifting set up to my apartment and I'm fine if I keep my core strong. The OR table was flat so I think that was the reason for the soreness. I did hit the pain pump three times but there was no improvement for the backache and I learned that some kinds of pain do not respond well to medications used today. It took me a while to figure out that the ache was from my old injury and not the surgery and when I figured it out, I just asked for a towel to place under the curve of my back and that took care of the problem.

Surgery was done at 2 PM and I left recovery around 6 PM. My sister was there with my backpack (computer, charger, and other stuff) and chatted for a while and then went up to the floor as it was ready but they were cleaning the other side of it so I was delayed. I had a ton of stuff attached to me: IV in the left arm, butterfly in the right for blood draws, Foley catheter, Uretal Stents, drainage tube under the stoma, EKG leads and Oxygen. I did not get out of bed until Tuesday morning so I was okay. No real pain as the anesthesia took time to wear off. I didn't have anything to eat on Monday but I had a Ringer's Lactate IV running through.

airborne72's picture
airborne72
Posts: 273
Joined: Sep 2012

Mike:

Keep posting as you progress.  Your messages serve multiple purposes - they communicate with other CRC fellows and they become the core of a personal diary, if you diary.

In my recent spare time I have begun to reread my emails, texts and forum posts regarding my CRC journey.  It is interesting to recall items that I have forgotten (information overload) and to revisit the emotional state during those moments.

I had a consult with my oncologist today.  In all likelihood, I will begin mop-up chemo on 15 November with Folfox.  He was trying to sell 12 sessions but I told him I will do 6 AND that I intend to stop as soon as I begin to exhibit neuropathy in my hands.  That is a quality of life issue for me that is not disputable.  I have arthritic hands plus two additional medical issues - dupytrens contractures and reynauld's syndrome, both of which impede circulation and nerves.  I am reaching my saturation point for "this might do this and this might do that."

This cancer treatment protocol is just like playing a poker hand at Vegas.  The cards are dealt and bets are placed.  Then more cards are dealt and the stakes begin to increase.  Quality of life versus death by cancer.  We all have a seat at the table and can fold anytime we want, but the loss or risk of loss will always be there.

Continue to reap the benefits of your hospitalization and take real good notes when the WOC nurse visits for your tutorial.

Jim

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Hey Jim - I have two of those conditions as well. Bizarre to say that the neuropathy I experienced while I was on Oxi and 5FU actually somewhat masked them. Sounds crazy I know. As my neuropathy is going away my arthritis and Reynaud's are coming back with a vengance.  I talked to my oncologist about it and although he didn't say the research supported it he also didn't challenge me on it and included it as a side effect of my chemo in my medical file. That said, the neuropathy is unpleasant and has it's own challenges. Just thought I would share my unique experience with it. Feeling comfortable with your treatment plan and maintaining quality of life issues is such a personal decision and one we all make in deciding how to deal with the cards we are dealt. Gotta love Kenny Rogers, know when to walk away and know when to run... 

Annabelle41415's picture
Annabelle41415
Posts: 6078
Joined: Feb 2009

Glad to see you posting.  Take care of yourself first and everything else will fall into place.  When are you coming home?  It seems they don't keep you long anymore.  Hope your recovery is speedy.  Praying for a fast bounce back to living.

Kim

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Many suggested today for leaving but I had planned for tomorrow so I've been pushing for tomorrow. I told me surgeon, somewhat humously, that I could take the train into Boston and then take another train to Newton, walk 1/2 mile to my mother's house and then drive 75 minutes to get home. And she said, "No.". I have a pain issue but it feels like it is related to bladder pressure. It's the dull ache type of pain which isn't sharp but really annoying because of persistence. It has come and gone and pain medication, outside the Oxy at 5 mg, doesn't feel correlated. The Oxy dulls the pain by about 50%. Sometimes I feel fine and sometimes not. When I'm in bed and not moving, there is no pain. Walking can bring about the pain. I went out to walk 8 times yesterday, in addition to filling up my pitcher from the ice and water dispenser. Sometimes there was pain and sometimes only a little pain. It also took a while for my bladder to wake up and there's a regular amount of blood in my urine. The nurse said that's normal because of the ureter stents and it takes several days for that part of the body to heal.

Perhaps Jim, Beth or Grace could comment on where they felt the pain was after surgery. I was hoping that there would be no pain by the time I left but that doesn't look like it will be the case. What's interesting is that the pain is near one of the small cuts. The big cut in the middle feels fine unless I cough. For those that will have the surgery: they encourage you to drink a lot of water but take the drinking slowly. I was gulping it down last night and some went down the wrong way causing a coughing fit and you don't want to do that after surgery.

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

It's good to get moving after  surgery, but your body needs to rest, too- it has been through a lot and needs time to recover. It sounds as if you were in tip top physical condition before the surgery, so the odds of your body going to pot from lack of exercise as you recover are not very great.  Listen to yu body and if it says it needs to rest, heed it.

As for the pain- I had a different surgery, so most of my pain  was (and still is) from the perineal wound.  I had some discomfort from the abdominal incisions  but nothing major. Or maybe it's relative --  my posterior hurt so much that any abdominal pain was insignificant in comparison.Undecided I didn't have stents but  I did feel quite a bit of pressure on my bladder. That diminished a great deal once the drain tube was removed- I  was discharged with the tube in place;  the surgeon removed it ten days after discharge at my follow-up visit. 

I  didn't have oxycodone, I was on hydrocodone (Norco) I was given a prescription for 30 tablets at discharge, took them for a few days at home and still have 17 left. I find now that if I'm going to be moving around a lot or sitting in the car for a long period (as in  going to dr. appointments)  that   taking a Tylenol about half an hour before I leave makes everything  a little better. Pain is such an individual thing, though- and everyone's body has different tolerance levels.

I hope you continue to recover well- and that you keep listening to your body.

Cheers,

Grace/lizard44

 

Ruthmomto4's picture
Ruthmomto4
Posts: 593
Joined: May 2013

just irritation from the catheter and bladder stents? Maybe the start of a bladder infection? I know they are not common in men but after a catheter and stents it's very possible. Bladder pressure certainly sounds a bit like the start of an infection, or it just could be irritation. Drinking will help, go slow. I hope it resolves itself today!

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I told the doctors this morning and they are aware of it and mentioned the stents. I suspect that I would be in no pain at all if this weren’t an issue. I will continue with water and going to the bathroom. Never had. UTI before so I don’t know what it feels like but it’s over to the left.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I looked up the symptoms of UTIs and bladder infections and some of them are quite graphic or colorful. I don't have any pain from urinating so that's likely not the problem. It seems like urinating or just resting gets rid of it. I may experiment around more with meds. I took pictures of the staples. I had never seen them before. Amazing what tech they use these days.

airborne72's picture
airborne72
Posts: 273
Joined: Sep 2012

Mike:

You need to change your avatar to Superman.  Considering your mental acuteness, physical fitness and self-discipline you fully qualify for the name.  I am impressed.

However, I do want to caution you.  Even the real Superman (Marvel Comics guy) had issues with kryptonite.  Don't worry about it, but do remain very much aware of the fact that your body is being held together by stitches in several internal locations.

My sister got onto me about this a few days after I got discharged and I was looking out the window at my garden.  The temptation was too great so outside I went with a rapidly growing list of things that I NEED to do right now to prepare the garden for winter.  The sun and fresh air were invigorating, so much so that I picked up a garden rake and began to reposition dirt.  I would recommend hard raking for those who want to have a flat stomach, but do not do so 6 days after a major abdominal surgery.  I don't believe that I pulled anything in my torso too much, but I could tell that my insides were not normal.  Sixty-six year old sanity finally prevailed and I went inside to rest.  Later I told my sister in an email what I had done and she scolded and chided me for taking the chance of tearing stitches and staples.  I listened and have not since violated medical restrictions, thanks to my big sister.

My pains did not match your's.  I retained consistent incisional pain in my midsection (largest incision) and even for a few days after discharge.  The larger pain for me just seemed to be broad internal area that would increase or decrease in pain levels for apparent reasons and not for apparent reasons.  This pain could become significant in terms of duration, frequency and strength.  I rated mine at 7 two days after surgery but within a week it was minor.

Surprisingly, I did not have any issues with the catheter.  Once home and closer to normalcy, I have noticed a persistent higher level of pain during urination.  I believe this to be the result of and recovery from the tissue damage inflicted during the surgery.

Discharge dates come with mixed feelings.  You might ask yourself if you really want to leave this secure place? Or, you may say something to the effect of get me out of here NOW!  I wanted out so when my surgeon offered a date I took it. I just could not tolerate another blood thinner injection into my stomach so I politely asked my surgeon if he would give me three steps toward the door. My surgery was on a Tuesday and I left on Friday.

The recovery period for this surgery is just as important as the preparation phase was.  Therefore, it is extremely important that each of us follow instructions.

Continue to heal Mike.

Jim

Trubrit's picture
Trubrit
Posts: 4717
Joined: Jan 2013

Jim is so right. 

I bet many of us can attest to overdoing it after surgery.  

After my liver surgery I was starting to feel pretty good. About a week out of hospital, I asked the nurse if I could start my regualr walks. She practically shouted down the phone 'Lady, you've just had liver surgery. NO!' 

Well, I felt pretty good, and I wanted to walk my normal five miles. I ended up having to picture/visualize my liver. I had to picture the surgery and what they did INSIDE of me, before I could understad why I was being told what I couldn't do. 

As Jim said; allot went on underneath that abdominal incicion. Don't push it! Bits of you were stitched together. Don't undo it by doing too much. 

But you are definitely on the right track. Keep up the good work but be patient and be good to yourself. 

There endeth my rant. I will now climb down from my soap box and leave you be. 

Tru

abita's picture
abita
Posts: 569
Joined: Dec 2017

Hey Tru, Did you have your liver surgery after you finished 4 infusions? I have known from the beginning that I will have that. I had my sigmoid colon and tumor removed 6 weeks, and am still recovering. My second infusion is Monday. All of a sudden, this week, I have started thinking and worrying about my liver surgery in January. My oncologist said it is easier recovery than the bowel surgery. I don't know, worried my lesions won't shrink enough to remove, worried about surgery itself, recovery, etc. I am generally positive, but I have moments where I break down a little.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

It seems like pain happens and I may never get a good reason as to why. The pain meds really don't too much on a consistent basis so I'm undecided but willing to try again. Thanks for the data points.

The food, roommate, nurses and doctors here are really great so they aren't a reason to take off. Yesterday I have a training session for injecting the blood thinner into myself. Today I do the real thing. Then I get to do it for 28 days at home. Something about active people in bed a lot are susceptible to blood clots. I will post some of my training stuff that I did for the surgery in the fitness thread.

Ruthmomto4's picture
Ruthmomto4
Posts: 593
Joined: May 2013

after all you and everyone here has been through you would think we would all know better then to look things up on the internet loll

its most likely the stents or the catheter that just left you with some irritation. Mainly it would be pain and pressure that feel better when you pee, maybe pain after you pee, and a constant need to go. Although all those can be from the stent/catheter. My husband had horrible back pain from the stent, gone oncevthey took it out. I am sure it will feel better soon. You remind me of my husband who went back to work a week after colon resection and a week and half after the liver surgery. I won't tell you to take it easy because it's not in your make up, so be smart! You are pretty inspirational! 

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Sounds like they might want to kick me out today. I would prefer tomorrow though. I have sharp ears

i logged into work earlier and saw a project that I was going to start but decided against it for now.

There is blood and buts of dried blood with the mostly yellow urine so maybe some knicks and scratches from the stent in the bladder.

 

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Tuesday

It’s pretty hard to sleep in a hospital bed at night as there are folks coming in to take your vitals every few hours, check your IV, take blood, empty your catheter, drain the stoma, drain the drain tube blood along with the noise and lights of the ward. So I did get some sleep but not as much as I should have but that’s the way it goes. I think that risk is pretty high the day after surgery so they want to keep a close eye on you.

I had a lot of chest congestion from 7:00 to 7:30 AM and I attribute that to the irritation from the chest tube. One of the nurses suggested using a cough pillow and that worked out when it was within reach. When it wasn’t, I had to clutch. Coughing was big pain but for a very short time. This took a few days to resolve though my voice was still weaker than usual at discharge.

TMI bucket: You can pass gas from the anus. I thought that it was shut off but it isn’t so stuff can come out there like mucus. They provide mesh underwear and put in pads to catch stuff.

I ordered breakfast but bland stuff was recommended so I ordered white toast, broth, and cranberry juice. It took me about five hours to eat because my body didn’t feel like eating even though my mind was very hungry. It was a little painful to sit and eat.

The major pain was on the left side and I tried to figure out if it was the wound, just general pain or related to the catheter. The catheter bag filled up fast because of the amount of fluids that they were pumping through me. The stoma bag filled up fast as well.

I did get up and walk three times. One round of 1 trip around the ward, one round of 2 trips around and one round of 3 trips around. The anesthesia wore off today so pain was unmasked. The left-side pain comes and goes and maybe urinating relieves it. They want me to crank up the fluids as they removed the ureter stents and the bladder has to wake up. I think that they were worried about infection if I didn’t get more through the bladder. In normal GI operation the body reabsorbs water from the large intestine but this is bypassed with my setup. So I could get dehydrated without enough water. An indication of enough water would be urinating and less in the bag.

One of the Surgeon’s doctors said that I will have to inject Lovenex into my thigh for the next month. I am scared of needles and close my eyes when I am stuck. I asked my wife if she would do it and she volunteered to do so. But I don’t know who will do it. I kind of pushed the unpleasant idea out of my mind.

The surgeon came and told me that things went well and that I might be down-staged depending on the path reports. I don’t know if the post-surgical treatment will be any different.

I had a long training session with the Stoma Nurse and she went through the making of a pattern, cutting the piece that attaches to the skin, applying the adhesive and putting them on. She went over suppliers as well. They will leave me with 10 bags and a tube of adhesive so I need to order more when I get home. Theoretically, it should be five bags per month but they give you ten of them per month. I’d rather be safe than sorry. I will order some on my own (without insurance) if I have to.

My friend George came down to visit. I wasn’t expecting him and I was a bit surprised that he took the time and expense to come down here. He only stayed for a little while. I would guess that he was scoping out the trip. He thought that I was doing quite well.

I tried Tylenol 650 mg. I couldn’t tell whether or not it helped. Dinner was toast and chicken soup. So about 400 calories for the day. My body wasn’t hungry but my mind was. This hospital has a fantastic menu and choosing from all of the options was challenging. I sent my wife the menu and she said “you have got to be kidding” - it had so many options. My roommate was impressed with the food and he’s a retired doctor.

I managed to empty my stoma bag but I forgot to squeeze out the gas.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Wednesday

I slept more soundly at night because I was tired from all of the activities on Tuesday. I emptied fluids (urine, bag) and had decent pain standing or moving. I took two Tylenol and Oxy 2.5 in the afternoon and 5.0 in the evening. The Oxy made my head feel a little funny and made me sleepy but it took about 50% of the pain off. I couldn’t tell whether or not it was worth it. But I tried very little and then a lot for pain meds and I was undecided.

The doctors came early this morning on rounds and removed the wound seal. There were staples underneath but I didn’t find out about those until I looked later in the day. There was one large horizontal wound in the middle and one small one on the left and two small on the right. I assume that these were for tubes to go in. I didn’t see the two on the right because they are obscured.

The goal for me was three rounds of walks but one of the nurses joked that they should put in eight boxes for walking so I walked the eight and made the boxes myself. The doctors and nurses were also concerned with my urine output. I thought that I was drinking a lot of water but most of it was going into the bag. So they added fiber packets and I ordered more fiber from food. Things only improved a little.

I called the insurance company covering my short-term disability and they confirmed that they got my information from my surgeon. So that’s one less worry to deal with.

I got the injection training and practice on a roll of tape.

Breakfast was a scrambled egg, applesauce and toast and it took me about five hours to finish it with all of the interruptions and with me not really feeling like eating a lot. I added two packets of salt to the food as Had leg and arm cramps last night.

The surgeon came to visit mid-afternoon and asked how I was doing. She thought that I could go home Thursday instead of Friday but I said that it would make my logistics difficult.

My urine output is still too low for the day. I tried to crank it up later in the day and wound up with water going into the wrong pathway and had a coughing fit which was very painful.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Thursday

The left hip pain seems independent of the pain medication but I still took a Tylenol as I was debating ramping up medication for one last try.

Urine output has improved to 250-300 per shot but it’s still blood-tinged and I asked a nurse for a scale and she went to fetch one. They had this huge electronic scale that looked like it cost $2,000 and I weighed about seven pounds less than a week ago and that seemed reasonable to me.

I went to the visitor’s lobby and tried out a number of exercises. I wanted to do a few more but didn’t have the opportunity. I did a squat, crane pose, warrior pose, Neck rolls, Arm circles, Upper Body Twists, Rotator cuff stretches and Tree pose.

The doctors came in for rounds early in the morning (6 AM) and said that I should take Imodium and I was given three or four for the day. The bag material became much less watery and urine output increased. I’m still doing about 275 ml at a time. I think that my body wants me to go at a certain pressure level. Their target is 500-1500 ml in the bag and I was at 1800.

I took a lot of walks today, many to refill my pitcher. It may be that the overall amount of pain is decreasing with whatever is getting pressed healing.

I ordered a big breakfast to experiment: oatmeal, cream of rice, whole wheat toast, scrambled tofu. It was all good and filling. Dietary recommendations are to eat a bunch of small meals. This makes sense given the limited size of the bag.

Someone came in and told me that they were thinking of discharging me today but I said that I didn’t think that I was ready and my ride was scheduled for tomorrow so I didn’t hear anything more on discharge today. I also talked to someone about the discharge time and process and then sent email to my ride to schedule pickup at 12:30 PM on Friday.

The nurse came in for another teaching session on giving myself shots of Lovenex. I applied the alcohol to my leg but I was supposed to apply it to the roll of tape. So she asked me if I wanted to just inject myself or still test on the tape. I decided to just inject myself with her coaching and did it and it burned for about ten minutes and I could still feel it 30 minutes later. But it was done.

I had a look around work and considered starting a small project but decided against it. Things were relatively quiet and I spent time resting and doing some social media.

I ordered glazed salmon, macaroni and cheese and sweet potato for dinner and a chocolate chip cookie for dessert. I had the first three and saved the cookie for Friday. I have had no problems with any of the foods that I’ve tried. Several more walks, pitchers of water and I skipped pain meds for the rest of the evening. Then I wrote up these logs.

I feel like I’m ready to go home tomorrow.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I forgot one thing: I brought a songbook of Psalms and music and America the Beautiful was in it so I played the music and sang the song. My voice was still weak but I didn't want to alarm anyone on the ward with singing so I sang softly.

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

My hospital food & care was amazing.  I did not want to leave until 100% ready.  Glad you are getting the same!  

Not sure what type of ostomy you are dealing with, but I found Coloplast to be far superior to Hollister.  Interestingly, much of my pain was around and under my stoma. A burning pain.  Oxycodone made me feel mentally out of it and didn't help the pain.  I used Norco at home and still use it on occasion to help me sleep.  My incision never hurt much.  Lots of staples!!  But not really sore.  Also I was given choice of belly or thigh for heparin shots.  No pain when administered to thigh.  

I hope to be back at the gym next week.  Need to get my legs back in shape and improve endurance before going back to work on the 13th.

Mike you are a great inspiration.  And, Jim, I love the poker game analogy!  I feel the same.  Quality of life is so important.

Best wishes to all from Beth

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

A trading friend sent me an article on hospitals do the billing with Medicare and insurance companies and it appears that it's often a price per procedure as opposed to per stay night in the past. Given this, if they can get you out earlier, then it helps their profits. The problem is the incentive to discharge early. So Medicare penalized hospitals for readmits. I think that we all have an idea as to when we should go home. For me, it was my anxiety over pain. Once I had a sufficient explanation and sufficient confidence that I'd be fine, I was ready to go.

I think that a readmit is a tough thing because the situation has to be bad enough that you'd travel, and get out of your planned routine to be in the hospital, likely in a lot of pain.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I'll do a writeup for today in the next 48 hours but I'm home now. The 75 minute ride home was uneventful and I'm home with my favorite computer. I have to go to the pharmacy (should I drive?) to get the Lovenex, Imodium, Fiber Packets. No pain in the wheelchair, walking to the car, the ride home or sitting at my desk at home. Not lifting more than 5 pounds for a week is going to be really tough. Also figuring out what to eat. At the moment, I actually feel great. Rather an amazing week. Cheering for Darcher next.

Trubrit's picture
Trubrit
Posts: 4717
Joined: Jan 2013

No, don't drive. Even with an automatic, your foot has to be on and off the gas pedal, and that all ties in with your tummy. 

Just my opinion, and nothing near medical advice. 

Tru

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Son drove and that was a good idea. I felt rather drained in the pharmacy (took forever to get my package of shots). I left the Oxy prescription with them asking if they could hold it. I'll decide next week whether or not I want the stuff. Had a nice home-cooked dinner (chicken porridge - chicken balls with super-boiled rice, soy sauce, ginger and garlic pieces - might be a staple with me with or without the chicken). VNA called and is coming over. Took a few Benefiber packets. My stoma is to watery - I think that I need to take the Imodium as well. I don't think that I need to drive for a while. I do need to sleep and I do need to transcribe all of the stuff from hospital discharge into my phone. I just realized how dependent I am on iCloud Notes and Reminders for getting all my stuff done.

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

So glad to hear your pain is minimal and you're able to eat some decent food.  

Interesting info about length of stay and billing.  I hope your hone care nurse is helpful.  

I agree with the others - don't push yourself too hard.  Driving can wait.  Of course, you are a great example of someone who isn't going to let this disease slow you down much!!

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I overdid it today. Yesterday I walked 1/2 mile. No problems. Today I've walked close to a mile but I tried using a powerwalking approach to alleviate the dull ache. It did alleviate the dull ache but I had blood in my urine afterwards. So no more powerwalking. BTW, powerwalking is a technique - I wasn're really going any faster than before. I'll go back to my regular walking, dial it back down to no more than 1/2 mile a day and then work up from there.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Just looking at some of the lab results and my Glucose indicates that I'm pre-diabetic. What? Then I looked at the history of results. I was fine on 10/24 and it rose on the day of surgery but still within normal levels. Then the day after surgery it really spiked and came down the next two days though still a little above normal. They must have been pumping in D5W into my veins. My sodium and chloride levels were low as well and I noticed that they were declining with my hospital stay despite me adding two packets of sale to meals (I only ate once or twice a day though). So the surgery and hospital stay can really mess with your lab results.

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

I'lll be getting lab results tomorrow.  Nearly forgot that they do pathology and so forth.  Im not too worried since everything else has gone well except hamburgers on the day of surgery.  That wasnt too bright..  There was no mention of home care follow up by anyone yet. Then again, I dont think I need it. I keep being told how great Im doing blah blah but Im sure they do that with everyone. 

im trying to eat 3 meals although Im not really hungry and haven't pooped yet.  Im getting close though with rumbling and gas.  My wife and kids spent the night here last night which was nice for a change.  The room is big enough to hold 20 people.  Im on my 3rd pair of hospital walk around socks. They call them slippers but they are socks.  These are the same type they had me wear for the ultrasound.  I notice they have a lot of signs about preventing falls.  These socks have rubber treads, like a car tire so there must be a connection.  They dont wear out but do get dirty after walking a while.  .

Waiting on dinner to show up. Had salmon for lunch which wasnt too bad although it was a tad dry.  Trying pot roast now along with cheese cake which just arrived.  It tastes quite good.  Not what youd expect for hospital food. 

The pain killer they have me on is an opiode yet I dont feel loopy or anything like that. But since it is that means this is going to hurt like hell when it wears off.  That comes tomorrow too. Oh well, this is what I signed up for.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

It sounds like you're having a great time there. Are you getting a temp ileostomy? You'd already have one now if you were. If not, then I'd guess that the you were reconnected up and will poop the old-fashioned way and you wouln't need any training for that. If you had a temp, then you'd have had training on it already. Did you try the chewing gum thing for waking up the bowels? My room had fall risk information as well. I was probably high-risk on day one and I think that they lowered me to low risk after they saw me meet goals on day two. Beth said that her hospital food was good too - maybe hospital food has a bad rap?

If I were able to walk as well as you are, then I would have put on my running shoes (that's what I wore to the surgery). I put them on the day I was discharged and it was moderately more comfortable than walking in the socks on the floor as the cushioning and stability on those things is really good. I suppose I should have worn them as soon as I was able to get up and walk.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Friday

One of the things that overshadowed my hospital stay was my roommate who had some kind of infection. He had a lot of doctors in his room including a few people from the infectious disease department and he had been on a bunch of different antibiotics. They apparently figured out what he had (might have been more than one thing) and that morning, the doctors and nurses treating him were wearing gowns. There was a notice on the door of the room about contact precautions added. I also overheard them asking him to take precautions because of the possibility of passing something on to me. I had been careful from Wednesday using the public toilet instead of the shared one in the room when it was easy to do. My roommate had immune system issues which is why he caught this thing. A normal immune system shouldn't catch this and should be able to deal with it if it did. I just didn't need to be sick while recovering. I felt like I was in pretty good shape and ready to leave anyways.

I had a very good sleep last night as they didn't do vitals every few hours on us and they didn't need to come and change his medications. The pain thing was still an issue and I took some Tylenol. Additional rest cleared it up. Also peeing helped. I'm pretty sure that it's a bladder pressure issue.

6:20 AM Doctors' Rounds: they looked at the wounds and I described the pain situation and he said that it's probably a muscular thing and that it was a good sign. I indicated that maybe I was doing too much. I did squats, tree pose, warrior pose and a bunch of other stretches and range of motion exercises yesterday. He wants to dial back the Imodium to one or two and make it algorithmic instead of fixed. He wants me to keep up with the fiber packets as well.

I asked about removing the staples and that could be done at the post-op appointment. I also asked about driving and he said anytime, as long as not on medication.

I really wanted to take a shower but I was afraid to use the bathroom so I did I washed up with a towel as best I could. I also changed underwear and pads. I saw the mucous that leaked out and it didn't smell or anything. Just black-colored. Some had got on the bed protector too.

8:00 AM Ordered scrambled egg and whole wheat toast. I did not want to eat much before the long ride home so that I wouldn't have to change the bag along the way.

8:53 AM The IV Nurse took out one of th elines and redressed the other one. I had an Imodium, Tylenol, Ibuprofin and fiber packet. The Nurse went to assemble a team for discharge. I kept my ride informed via email. One note: flat pushups, fist pushups and dips are good exercises for working the arms and shoulders for getting out of bed when you can't use your abs.

9:30 AM Got out clothes for trip home and packed up.

11:00 AM An intern came in and removed the tubular loop that held the stoma outside the body. The intern had to push the bag back onto the body attachment and asked me to brace myself. I just tightened my abs and there were no problems.

11:15 AM Stoma   change education. It's in another note (the description) but it took quite some time because my stoma was so active. The nurse was very patient. I think that I will do this first thing in the morning in the future so that I won't have to deal with stuff coming out while I'm changing the bag.

Discharge stuff was next. A list of documentation and directions and a form to sign. Then injecting myself with Lovenox. I got an ETA from my ride and the nurse called for a wheelchair and brought me to the valet area where I was picked up.

The trip home was uneventful. Zero pain on the ride home.

My son drove me to the pharmacy to pick up the first box of injections. I left the Oxy prescription with them but didn't get it filled. I'll decide on the Oxy next week.

I was weak and revenous and asked my wife for toast but she gave me a large bowl of chicken balls, rice porridge and soy sauce instead. Very good stuff.

I contacted the Visiting Nurse service and set up an appointment for a visit.

11:00 PM Had three packets of Benefiber and emptied the bag and the consistency was thick. It's more comfortable changing the bag at home where then enviroment is controlled.

Total walking for the day was about 1/2 mile.

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Great transition to home!  I must say, I was on a post-op floor in the hospital where everyone had a private room.  I askked about it, and they said the surgeons all required it for their patients.  Was heaven.  You were ar a more sought after hospital, so maybe they have to double up?  

I cannot believe how wonderfully active you are.  I see my surgeon today for second followup.  Can't wait to get the ok to go back to the gym.  My incision is finally healed.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

The general standard of care is determined mainly by the insurance companies. I had the option for going for a private room for $375/night extra and I considered it but the benefits of the private room would mostly be lost on me (gourmet food, hotel-style room, furniture for guests to sleep over and other amenities). I couldn't really eat much of anything for a few days. The hospital was very crowded. I think that the administrators were trying to get me out early as they had more patients to bring in.

I think that you'll love the gym. Remember, start out slowly. I actually do this myself when I start out from a break on a particular exercise as it is very easy to injure yourself using barbells, dumbbells and weight machines. My postop is only 8 days away and I look forward to getting the staples out, and driving. I could likely drive right now but there's no need to try.

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Cindy225
Posts: 172
Joined: Feb 2017

My surgeon and oncologist have been very supportive of walking and running (did 5 mile run today!) but cautioning against abdominal or core activities for fear of getting a hernia which can be very complicated to fix.  I had my reversal July 28 and they are still saying no abdominal or core training until January.  It's been almost a year since my LAR.  Do find that my gut has not been the same since all these surgeries.  Kind of like a beach ball.  Looks like I have 3 belly buttons too; real one plus two surgical ones.  Hard to tell them a part.  TMI! Anyway, good luck getting stamina back and daily lives in order to those on the surgery recovery roster.... 

Cindy 

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Thank-you  for the data point. I don’t expect to play tennis for six months out as it is a high stressor of abs. I may spend some time to see if there’s a sports specialist at Dana Farmer as this is a big part of my life.

BRHMichigan's picture
BRHMichigan
Posts: 368
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Thanks, Cindy & Mike.  I mentioned in another post that I visited my surgeon today.  Although my incision is healed, no swimmimg for 3 months!  Walking and stationery bike only.  He fears hernia could result from too strenuous of activities.  I am so disappointed.  Can't use resistance equipment either.  Welp, I am certainly learning patience.

Mikenh's picture
Mikenh
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Joined: Oct 2017

I can feel daily improvement but it’s slow. Walked 1.5 miles today and that’s the most since surgery. My rear end gets sore sitting for a while. Maybe related to all of the cutting down there. Good excuse to go for a walk. We get freez temps soon so I need five pounds of clothes to go out.

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Ruthmomto4
Posts: 593
Joined: May 2013

even colder the rest of the week so bundle up. I know different surgery but with my husband's liver resection surgery he got an enormous hernia, you could see it no matter what he wore because he went way too fast. So be careful! 

BRHMichigan's picture
BRHMichigan
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Mike, I think a mile and a half is amazing!  I pushed myself to do a lot of activity today and feel much better for it.  Need to spend our days LIVING.  I go back to work Monday and am really looking forward to concentrating on work rather than cancer!

Mikenh's picture
Mikenh
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The distance is the total for the day and is broken up into many short walks throughout the day. The limiting factor is the dwindling amount of daylight. I am walking about 3 MPH which is quite a bit faster than the 2 MPH from last week. My top walking speed is 4.5 MPH and top running speed is about 12 MPH.

The ache on on the left side is gone. It’s been replaced by a little aches to the right and in the middle. Both are likely due to increased activity. I’m monitoring both. Getting out of bed still takes a moderate amount of effort and care to avoid using abs musckes. And I have no desire to use any painkillers. There may be a little soreness due to sleeping with the bag. There was quite a bit of material in the bag this morning. I tend to let it fill up more than the recommended 1/3rd. I've been experimenting with the amount of fiber. The prescribed amount was 9 grams per day but I was doing 12 for a few days and went up to 15 yesterday because the bag contents were too watery. The discharge directions recommended four Imodium tablets but I'm trying to avoid them and use fiber to control thickness and absorbtion. The directions said that it may take a week or two for things to firm up so I'm just adjusting with the fiber. I'm getting about 12 grams of fiber in my regular diet as well. Typical is more like 30 grams but I don't want to crank it up to something like that all at once.

im debating my return to work date. Recovery has been slower than I expected but I was overly optimistic about this. My Short-Term Disability company suggested a return to work date of November 15. This is based on me getting approval for that on November 14 when I meet with the Surgeon. I'm also debating driving. I have the feeling that those that returned to driving, say within a week of surgery, may have not had the open surgery that I had. So a week after surgery was unrealistic for me. We're at 9 days now and I still don't think that I should drive. I will reassess every day though. If I'm not ready by Tuesday, then this complicates things as I won't be able to pick up my other car at my mother's house when I planned to. It would mean getting to my mother's house (I'd take a cab if I wasn't up to walking two miles, and taking two trains to get there), and then at least a one hour drive, likely with some traffic, on the first-ring highway. I could use the self-driving mode in the car - I just haven't used it enough to trust it completely.

Mikenh's picture
Mikenh
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First bag change took me an hour. One screwup cost me a wafer and redo. I’m going to have to get much better at this.

airborne72's picture
airborne72
Posts: 273
Joined: Sep 2012

Changing the wafer is my greatest challenge and dread.  I am tempted to just coordinate and pay for a home health care nurse to do it for me, but that is escapism and silly.  I can do this - not well, but I can do this.

I finally had some minor leakage and a small area of my skin became irritated.  Obviously, I need to change more often and do a better job of it.

I can identify with your concern over wasting a wafer.  Insurance will only pay for 20 per month and the turn around time for resupply is slow and out of my control.  I do not like that situation, so I have located local outlets where I can pay out of pocket for additional supplies.

If I could have one do-over, it would be to have the WOC nurse conduct another tutorial AND have me do it all while she observed and critiqued my performance.

Jim

Mikenh's picture
Mikenh
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Joined: Oct 2017

Thanks, Jim. Nice to know that it is challenging, especially the first time on my own. I considered paying for a service as well.

The thing is the nurse at the hospital had similar problems. My problem is that I have a very active stoma. I didn't eat for about 10 hours before trying the change but I did drink Benefiber and water and maybe that was a mistake.

My other main problems is that I tried to do this from my notes. Notes are great to have but they are far more useful when turned into directions. And that's what I need to do. Today. Notes are rough, aren't always in sequence and don't have a list of supplies that you need and what you need for each step. I thought that I was reasonably prepared for supplies, and I was, but I removed the wafer seal before putting the bag on and I wasn't able to recover. The active stoma was a problem but indecision and wasted time on steps allowed it to keep erupting and I had to keep cleaning it.

I read in the Ostomy directions that it's not a good idea to stockpile Ostomy supplies. I'm getting supplies through the VNA company and they said that I should get them today but I don't know if that will happen. If they can get them to me in a timely manner, then I won't worry so much as I won't be using anywhere near 20 a month and I should be able to build up a stockpile. Hey, if I've learned to empty my bag, give myself an injection a day, I should be able to learn how to change a bag, right?

I still have to clean up a bunch of things in the bathroom. Also plugged the toilet and generated a lot of paper waste. And need to rinse out facecloths, buy a gallon of liquid bleach and do the laundry. Though doing the laundry will mean directing the doing of the laundry.

One last thing: how do you get the barrier paste off your fingers?

airborne72's picture
airborne72
Posts: 273
Joined: Sep 2012

That was one of my mistakes as well.  I put too much paste around the opening in the wafer and then tried to even it out with my gloved finger.  What a mess.  So, I decided to use less paste and if I need to spread it then I use a Q-tip instead of my finger.

My stoma is inactive early in the morning but that is quite a wake-up call.  Quick, get up and change your wafer and bag because your involuntary muscles in your intestines are resting.  Who's in charge here after all?  Your stoma!!

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Gloves? I washed my hands for sure and watched a video and the person didn't use gloves. Were those in your directions? That would make it a bit harder I think.

The nurse that changed it on Friday held the tube perpendicular to the wafer and squeezed it out and used the top of the cap to keep the layer flat and thin. My change apparently worked as I haven't detected any leaks and I don't feel any pain. I think that I used excess paste though. I should probably spend some time in the Ostomy forums. I need to call the VNA folks. The lady that came Saturday said that she'd place the order Monday for delivery today. I suspect that she was supposed to tell someone else to do it as she's on vacation this week. The nurse that came Tuesday didn't know anything about it.

How's your calories stuff going? Are you getting enough these days?

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Mike and Jim you are both a riot with the ileostomy arts and crafts project changing the bag! Smile  I so get it! You should ask your home wound care nurse to do a step by step change with you and write it down. Even take pictures! Have lots of paper towels on the floor and put  tissues on the stoma when changing it. Over the next month the stoma should be what it will be and you can order pre-cut wafers which saves so much time. Do not touch the paste! Use the tip of the scissors to manipulate the paste. A bit of extra paste helps protect the skin against irritation.  I also used a portable stand up mirror on the sink to eyeball everything before applying the wafer with the paste. It gets better but every three days comes up quickly so mark it on your calendar. 

Cindy  

airborne72's picture
airborne72
Posts: 273
Joined: Sep 2012

Cindy:

There is both an art and science to managing an ileostomy and I have yet to master either.  Some things I can do naturally but this is just not one.  Because I am all thumbs with this task, I soon make a mess and get frustrated.  

On Friday I have another follow-up appointment with my surgeon (30 days post surgery).  He will remove stitches (?) I believe but also remove the small, rubber tube that functions as a bridge in my ileostomy.  Once that is extracted it will be easier to place a wafer over my ostomy.  However, doing so will need to be done at his office and either I will have to do it or a nurse will do so.  Sure hope WE don't make a mess.  How embarassing that could be.

Mike:

I realized that I did not answer your question regarding my weight, BMI and calorie intake.  Thanks to Marinol my appetite is gaining intensity, but mostly for sweets.  I was successful in eliminating soda's and sweets from my diet decades ago but now I am allowing them back in to stop this weight loss.  It's not that bad anyway because the volume of my intake is minimal.

Another good eating habit that I must change is consuming smaller quantities more frequently through the day.  I never ate any breakfast other than juice and coffee and I never ate between meals.  I am in the process of changing that frequency to accomodate the amount of nutrition my digestive system can obtain with this ileostomy.

Prior to this situation, 50% of my daily diet was a fresh, green salad.  My favorite vegetable (fruit?) is tomatoes but now they can only be eaten with great care.  No celery or raw carrots, etc.  It's enough to make a grown man cry.  I have had to delete my favorite, and most healthy, meal because of my ileostomy. 

Also, I previously ate supper around 8 p.m.  Now I have learned that is too late with an ileostomy, unless you want to get up through the night burping the bag and emptying it.  This ileostomy is forcing me to change my lifestyle immediately.  I have no choice.

My low point on weight was 131 pounds (sorry Tru, I can't convert that to stones) on 23 October.  It is now back up to 134 thanks to a chocolate milk shake from Sonic each evening and a bottle of Ensure each afternoon.  Before I got involved with rectal cancer my normal weight was approximately 145.

I am scheduled to begin my initial infusion of FOLFOX6 next Wednesday.  We'll see what happens to my appetite and BMI when that stressor is applied.

Jim

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Hello Jim,

I’m getting my staples removed 14 days after surgery and the stitches in my rear end are self-dissolving after eight weeks. So maybe you’re having staples removed? Or your surgeon used more traditional stitches over staples. Did you have open surgery or Laparascopic-only? I’m still amazed at how slow recovery is with open.

The purpose of that small, rubber tube, at least in my case, was to hold the stoma outside the body. The nurse that changed my bag on my discharge day was waiting for it to be removed before changing my bag and said that it would be a lot harder to change the bag with that tube wrapped around the stoma.

As to the mess? I was on a bed pad lying down and she had towels, and a lot of facecloths and she needed them. But we didn’t have to deal with stuff dripping down my stomach and onto the legs as I did yesterday when I was vertical. One of the videos that I watched yesterday had a lady with a towel tucked into the front of her shorts and that might be something that works but it’s still a decent amount of laundry to do afterwards.

The nurse took it all in stride - I suspect this stuff is pretty routine for the experienced ones.

Thanks for the update on your calories and weight. I’m glad that you’ve stabilized but I understand the frustration on having to go with calorie-dense foods. I have the same issue with still doing fewer, larger meals as that’s what my wife is used to. I also have the problem with letting the bag get more full than I should so that I don’t have to change as often but the size and weight then becomes a problem.

I’ve not had a salad since surgery and I’m taking it easy on vegetables. Broccoli, Butternut Squash and Sweet Potato do work for me but there are some foods that basically don’t get digested and no sense in eating if I don’t get the nutritional value from them.

It’s a bit funny that I was reading your post as I was walking downstairs to go to change my bag at 3:15 in the morning. Yes, eating after 8 PM means that the bag will likely need to be changed in the wee hours.

Best of luck in expanding your diet with stuff that you want to eat as opposed to what you have to eat. At some point, things should get back to normal. I would like a scale as I haven’t measured myself since the hospital.

mike

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I took a walk at 8:00 AM and the temperature outside was 27 degrees. I had on a tech tee, tech long-sleeve and a PowerStretch Hoodie with Balacava, and a down coat over those. I wore the Balacava over a running beanie. Long underwear and a warmup and wool socks and Marmot snow gloves completed the outfit and I was warm everywhere except for my hands. I think that fleece gloves with running glove liners would have been a better choice. 0.6 miles on the walk and I took it really slow. I’m starting to feel that I might be able to drive by the weekend and that the staples are okay to come out next week.

One thing that I've wanted to do for the last ten years is read through Campbell's Biology. This is a first-year university text and also a common Advanced Placement text and we have two copies because our son studied it in AP and in college. The main problem is that the textbooks weigh more than I'm supposed to lift or carry. Same with the Genetics book that's somewhere in our home library. I could get a Kindle version but I think that it's $140 and I have a hard time buying a third copy of the same book (though it would be a newer edition). I suppose I could get someone else to set it up at a desk so that I only have to turn the pages. This is kind of what I mean by there's so much I want to do and so little time to do it. Well, I do have some time now.

 

 

Trubrit's picture
Trubrit
Posts: 4717
Joined: Jan 2013

have someone set up your book on a little table with a chair, and go read every now and again.  

With the whole bag changing. If you do get a nurse to come out, why not have someone you love, take a video as the nurse changes the bag. Make sure she/he narrates exactly what she is doing and why. Or, better still, she could tell you what to do as you are doing it. Just an idea. 

I take vidoes all over the place, or tape recordings, because since chemo, my brain is crap. 

Bundle up, and keep warm. 

Tru

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