Manifest Call

Options
airborne72
airborne72 Member Posts: 300 Member

I know we have two members (NHMIKE and DARCHER) scheduled soon for surgery, but I don't know when.  Guys, if you will, what are your scheduled dates and times?

Let us know so we can think about you and pray for you.  Believe me, it makes a difference when you know that others, who have fought and are fighting this fight, are sharing in your challenge.

Good luck my friends.

Jim

«13

Comments

  • Trubrit
    Trubrit Member Posts: 5,800 Member
    Options
    November 3rd

    I have Darcher on my calendar for November 3rd.  

    Tru

  • Mikenh
    Mikenh Member Posts: 777
    edited October 2017 #3
    Options
    I'm scheduled for October 30.

    I'm scheduled for October 30. I will find out the time when I call on October 27. The timing determines the logistics for me as to where I will be on Sunday doing the prep.

  • BRHMichigan
    BRHMichigan Member Posts: 368
    Options
    Thinking of you both!!

    We all can't wait to hear your good outcomes.  Hopeful your pain & suffering will be minimal.  

    Praying for minimal anxiety leading up to your surgeries too.

     

    --Beth

  • darcher
    darcher Member Posts: 304 Member
    Options
    Roger that. I'm scheduled for

    Roger that. I'm scheduled for Nov 3. 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Options
    Prayers

    Praying for you both.  It's the wait that drives you crazy.  You just want to get it over with.  Wishing you both the best outcome.

    Hugs!  Kim

  • Mikenh
    Mikenh Member Posts: 777
    Options
    Less than a week away and I

    Less than a week away and I'll admit that I'm getting anxious. Part of it is that I haven't been working out as much (ran two miles yesterday and today). 4 miles per day and weights has me sleeping pretty soundly. Tomorrow is pre-op day and I just read that I have to bring home Clearfast bottles and that they should be refrigerated which will be a bit of a challenge for me tomorrow. I'm going to bring an Igloo Cooler with an ice pack or two to keep them cool until I can get back from Boston.

  • lizard44
    lizard44 Member Posts: 409 Member
    edited October 2017 #8
    Options
    Best of luck

    To both of you. Mike, I hope your pre op visit goes well tomorrow.

    Grace/lizard 44

  • Mikenh
    Mikenh Member Posts: 777
    edited October 2017 #9
    Options
    I got to the hospital around

    I got to the hospital around 6:30 this morning (left at 5:10). I try to avoid driving into Boston these days but it feels like traffic has gotten heavier since I used to drive in from time to time. Commuters seem to be coming in earlier and earlier to decrease commuting time. I had considered taking commuter rail today but the weather is poor (rain, sometimes heavy) and I'd have a decent amount to carry.

    When I came into the main entrance, I was greeted with three nurses handing out literature on informational picketing. Not the sort of thing that you want to see if you're going to have surgery soon. I checked the local news for the potential of strikes and didn't see anything. I'm sitting in the cafeteria with my laptop and will be working here for a few hours until I have to pick up a kit at the surgeon's office and then go to the pre-op appointment. I do need to figure out where the pre-op stuff is done.

  • airborne72
    airborne72 Member Posts: 300 Member
    edited October 2017 #10
    Options
    City Mouse and Country Mouse

    Mike:

    I remember reading this story to my children decades ago.  Anytime someone describes a situation similar to your's I remember it.

    I am a country mouse.  But you are a city mouse and because of that I have full confidence in your ability to navigate through the maze of Boston and one of its large hospitals.

    On the positive side, today's trial run will enable you to "clear a path" for next week when you are admitted.  Take good notes.

    Jim

  • Mikenh
    Mikenh Member Posts: 777
    Options

    City Mouse and Country Mouse

    Mike:

    I remember reading this story to my children decades ago.  Anytime someone describes a situation similar to your's I remember it.

    I am a country mouse.  But you are a city mouse and because of that I have full confidence in your ability to navigate through the maze of Boston and one of its large hospitals.

    On the positive side, today's trial run will enable you to "clear a path" for next week when you are admitted.  Take good notes.

    Jim

    Hello Jim,

    Hello Jim,

    I typed in the Surgeon's procedures and instructions into iCloud Notes yesterday and last week so that I have it on my computer and phone. It's also a good exercise as you actually read the directions while typing them in and it helps you to plan because there's a ton of stuff to take care of. I've arranged my ride from the hospital for next Friday to get back home. I need to arrange a dropoff of my stuff after surgery with my sister.

    I'm actually a suburban mouse - I don't really like a lot of things about living in a city though I could for short periods of time. Unfortunately, a lot of suburbs become cities due to growth and that's what has happened to our area. It was pretty quiet and then development took over.

    Now that you're two weeks out - I have a question for you: can you drive now? If so, which day after surgery could you drive? Same question for Beth and Grace if they want to answer.

    thanks,

    mike

     

  • lizard44
    lizard44 Member Posts: 409 Member
    Options
    Mikenh said:

    Hello Jim,

    Hello Jim,

    I typed in the Surgeon's procedures and instructions into iCloud Notes yesterday and last week so that I have it on my computer and phone. It's also a good exercise as you actually read the directions while typing them in and it helps you to plan because there's a ton of stuff to take care of. I've arranged my ride from the hospital for next Friday to get back home. I need to arrange a dropoff of my stuff after surgery with my sister.

    I'm actually a suburban mouse - I don't really like a lot of things about living in a city though I could for short periods of time. Unfortunately, a lot of suburbs become cities due to growth and that's what has happened to our area. It was pretty quiet and then development took over.

    Now that you're two weeks out - I have a question for you: can you drive now? If so, which day after surgery could you drive? Same question for Beth and Grace if they want to answer.

    thanks,

    mike

     

    Not sure I'm the best one to comment

    Since my apr surgery involved removing my rectum, anus, and sphincter, it left me with a very sore seat. I can't sit long enough to eat, let alone drive. I may end up eating Thanksgiving dinner standing up :-(

    My first post-op visit to the surgeon is this afternoon so I should get an idea of how long the discomfort might last. I am taking a nice, soft cushion with me. :-D

    Grace/lizard44

     

  • airborne72
    airborne72 Member Posts: 300 Member
    Options
    Mikenh said:

    Hello Jim,

    Hello Jim,

    I typed in the Surgeon's procedures and instructions into iCloud Notes yesterday and last week so that I have it on my computer and phone. It's also a good exercise as you actually read the directions while typing them in and it helps you to plan because there's a ton of stuff to take care of. I've arranged my ride from the hospital for next Friday to get back home. I need to arrange a dropoff of my stuff after surgery with my sister.

    I'm actually a suburban mouse - I don't really like a lot of things about living in a city though I could for short periods of time. Unfortunately, a lot of suburbs become cities due to growth and that's what has happened to our area. It was pretty quiet and then development took over.

    Now that you're two weeks out - I have a question for you: can you drive now? If so, which day after surgery could you drive? Same question for Beth and Grace if they want to answer.

    thanks,

    mike

     

    Driving

    Mike:

    Upon discharge the only restriction regarding driving was to not do so while I was taking pain medication.  I was not prescribed any pain medication so it was a mute point.

    I let my physical capability be my judge.  My motivation was to return to normalcy, and to get a book at the library that I had been anxiously awaiting for someone else to return to the files.  My surgery was on 10 October.  I was discharged on 13 October.  On 17 October I climbed up into my F-150 4X4 and headed to town!  Since then I have made three other short trips around town.

    I have not experienced any reduction in my ability to safely control the vehicle (raising legs to apply brakes, vision, or even cognitive awareness).  Entering and exiting the vehicle is a slow event.  I would suspect that a protracted trip would begin to result in cumulative fatigue, but that could be alleviated with frequent pit stops, known referred to as bag stops.

    Jim

  • Mikenh
    Mikenh Member Posts: 777
    Options

    Driving

    Mike:

    Upon discharge the only restriction regarding driving was to not do so while I was taking pain medication.  I was not prescribed any pain medication so it was a mute point.

    I let my physical capability be my judge.  My motivation was to return to normalcy, and to get a book at the library that I had been anxiously awaiting for someone else to return to the files.  My surgery was on 10 October.  I was discharged on 13 October.  On 17 October I climbed up into my F-150 4X4 and headed to town!  Since then I have made three other short trips around town.

    I have not experienced any reduction in my ability to safely control the vehicle (raising legs to apply brakes, vision, or even cognitive awareness).  Entering and exiting the vehicle is a slow event.  I would suspect that a protracted trip would begin to result in cumulative fatigue, but that could be alleviated with frequent pit stops, known referred to as bag stops.

    Jim

    Thanks. That's a great data

    Thanks. That's a great data point. So does your F-150 have those huge wheels on it?

  • Mikenh
    Mikenh Member Posts: 777
    edited October 2017 #15
    Options
    Pre-Op appointment.

    Pre-Op appointment.

    I went to the Surgeon's office for the bowel prep kit. The assistant looked through a container of bags with names on it and didn't find one for me. She called around and said that it was waiting for me at the Pharmacy. I went to the Pharmacy with my Igloo cooler and ice pack and they gave me a bag and I put it in the cooler. It turns out that I didn't need to bring the cooler.

    Then I went to the Pre-Op area. I filled out some forms and someone came out to say that there would be delays because a lot of people were late. The weather and traffic were awful this morning (and this at 5AM - 6AM when I came in) so they were pushing appointments out by 60-90 minutes. I had my laptop so I could work so that wasn't too much of a problem but I missed an event at the office that I had wanted to attend.

    They took my vitals and sent me back to the waiting room. Then the Clinical Trial people (they want me to try VNX-149 which is a non-opioid painkiller) spoke to me and I gave them my questions. While in the meeting, the doctor called me over so I had a short examination and she talked about Clearfast and chewing gum. She gave me two bottles of Clearfast which is a carbohydrate drink that you take at 2 and 3 hours before surgery. They found that having carbs in your digestive system gets the bowels working or something and that this can cut days to weeks off a hospital stay for this stuff. I think that you guys already know about chewing gum though I'll have to supply it myself.

    The IV nurse (that's the term 30 years ago) came and took 10 tubes of blood. 6 for the surgery, 4 for the clinical trial. I was a little worried that I wouldn't be able to walk out of there but it was drawn with a minimum of pain and discomfort.

    Then I spoke to the Ostomy Nurse and this took the longest and she went over the bag, how it's attached, when it's changed, insurance coverage, ileostomy vs colostomy, vendors for the products, the visiting nurse stuff, diet, exercise, activity, intimate relations (not really an issue while I'm on chemo which will be for a while), clothes, air travel, cleaning, etc. Then she marked two spots on my abdomen for the surgeon and covered these with clear tape. She gave me spares in case the tape came off and some of the ink washed off. She gave me a rather large packet with suppliers for ostomy products. BTW, I asked what they cost and she said $200-$300 for a month's supply for ileostomy. More for Colostomy as you need more product.

    She also gave me a bottle of some stuff that I'm supposed to shower with for the three days leading up to the surgery. This is supposed to help prevent stuff during surgery including MRSA. So it's kind of like antibiotics for your skin. It's supposed to be applied with a face cloth or small towel.

    It looks like the day before the surgery will be quite busy doing the surgeon's prep (colonoscopy-style), Clearfast (called ERAS process), and the stuff for cleaning the skin. So I have the narrative version of what you guys are going through right now. I've kind of noticed that there aren't a lot of details about the ostomy products discussed here but it may be that it's discussed in far more detail at Ostomy forums, which the Ostomy nurse mentioned.

    So I need to set up a timeline to do all of this stuff or just put it in my electronic calendar. I've been typing all of the pre-surgery documents into iCloud Notes so that I have it on my PC and phone and so that I can send it to my wife so that she knows what I'm facing. I didn't get a chance to ask them about personal items so I'm going to call admitting to ask them. Hopefully they know or can point me to who knows. What would be cool is if there were lockers in the lobby.

  • airborne72
    airborne72 Member Posts: 300 Member
    Options
    Big tires, chewing gum and ostomies

    Mike:

    My truck does not have big tires on it, but all pickup trucks now have 17 inch rims and that makes it a high step for me on a good day.  I had developed a simple hop to get my right butt cheek on the seat, but that can't currently be performed so I slide in like an OLD person.

    I am clueless about your chewing gum comment.  Please elaborate.

    You are correct in that there appears to be minimal discussion of ostomies on this forum.  Probably lots of reasons but I will speculate about two.  Adjusting to one requires time, energy, and patience.  In addition, it is really personal.  Therefore, my guess is that we (me for sure) would rather talk about anything else in the world.  Other sites are specifically targeted for ostomy discussions.

    Jim

     

     

  • Mikenh
    Mikenh Member Posts: 777
    Options

    Big tires, chewing gum and ostomies

    Mike:

    My truck does not have big tires on it, but all pickup trucks now have 17 inch rims and that makes it a high step for me on a good day.  I had developed a simple hop to get my right butt cheek on the seat, but that can't currently be performed so I slide in like an OLD person.

    I am clueless about your chewing gum comment.  Please elaborate.

    You are correct in that there appears to be minimal discussion of ostomies on this forum.  Probably lots of reasons but I will speculate about two.  Adjusting to one requires time, energy, and patience.  In addition, it is really personal.  Therefore, my guess is that we (me for sure) would rather talk about anything else in the world.  Other sites are specifically targeted for ostomy discussions.

    Jim

     

     

    Chewing gum helps to get the

    Chewing gum helps to get the digestive process going again after surgery. I've seen a couple of posts where a nurse recommended it or someone on the forum recommended it to get things flowing after surgery.

    I agree that this stuff is pretty personal and that one of the big reasons why Ostomy nurses are generally well regarded as they deal with a very personal and difficult subject with a fair amount of grace and matter-of-factness.

     

  • airborne72
    airborne72 Member Posts: 300 Member
    Options
    Mikenh said:

    Chewing gum helps to get the

    Chewing gum helps to get the digestive process going again after surgery. I've seen a couple of posts where a nurse recommended it or someone on the forum recommended it to get things flowing after surgery.

    I agree that this stuff is pretty personal and that one of the big reasons why Ostomy nurses are generally well regarded as they deal with a very personal and difficult subject with a fair amount of grace and matter-of-factness.

     

    Do this; don't do that...

    Mike:

    No one mentioned to me anything about chewing gum immediately after surgery.  First I have heard of that trick.  I'll remember that when I have my reversal surgery.  Perhaps even share it with my surgeon.  Ha!

    The primary reason I was asking about the chewing gum was because I have read in more than one ileostomy instruction sheet that both chewing gum and sucking through a straw increases the amount of air we swallow, thus impacting the bag.  I am beginning to take everything with a grain of salt when it comes to do this and don't do that ileostomy guidance.

    On a different note, I will be interested in your experience with the experimental non opioid pain medication.  Last resort, you can always just chew on a nail, but remember to spit out your gum first.

    Jim

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Options
    Mikenh said:

    Chewing gum helps to get the

    Chewing gum helps to get the digestive process going again after surgery. I've seen a couple of posts where a nurse recommended it or someone on the forum recommended it to get things flowing after surgery.

    I agree that this stuff is pretty personal and that one of the big reasons why Ostomy nurses are generally well regarded as they deal with a very personal and difficult subject with a fair amount of grace and matter-of-factness.

     

    Nope

    Not a good idea at first.  It can really mess up the process of the digestive system and you don't want to do that.  Wait until they give you the go ahead.  Right away is not good.  They wouldn't let me do it for at least 4 days.  I'd ask after a couple days but not right after.  Be careful but do know that it did help.

    Kim

  • Hope4LRC
    Hope4LRC Member Posts: 9
    Options
    Best of luck to both of you.

    Best of luck to both of you. Hoping for speedy recovery and home to your families soon. 

  • Mikenh
    Mikenh Member Posts: 777
    Options
    Jim asaked about the clinical

    Jim asaked about the clinical trial for the non-opiod pain med that I will be on. The pain med is VVN-149 which was developed by a South Korean company with a US doctor. The government has provided funding for them along with a South Korean incubator. The drug works by decreasing Glycin and Seratonin signals along the spine - basically decreasing pain neurotransmitters. They did Phase I on volunteers and Phase II on either GI or CRC patients post surgery and this trial is during surgery. They've already had 48 patients in the current phase and the trials are being done at Mass General and Brigham and Women's. I talked to the doctor running the trial and he provided far more information than the clinician. He mentioned that they were considering making an oral form of the drug in two years. There is obviously a lot of demand for these kinds of drugs and I think that there are about 5-7 of them in trials. I do not know if this drug would be suitable for regular pain management or not and they might not know yet either.