Mikenh and Surgery

Mikenh

airborne72 said:

Good for You!

Mike:

So glad to hear some good news.  Improvement will occur quickly, but not fast enough, at least that was my situation.  I did not have to do the wound packing regimen, thank goodness, but my bowels did not move for at least 48 hours so I was confined to the hospital while we all waited.  I was reversed midday Monday and discharged early Friday morning. 

I was so motivated to leave that I refused the traditional (and mandatory) wheel chair ride to the front door.  I grabbed my small bag and did the left-right, left-right to the closest exit.  Hospital stays have a way of motivating departures!

Now you have more adjustment to your newest new normal.  Regardless, I know that you are glad to have it over.

Jim

Hello Jim,

Hello Jim,

The hospital was packed - I saw people being wheeled in and out of the recovery/pre-op room a lot. It's not an ideal place compared to a room as it's busier and the area is small. It's basaically an area against a wall with curtains and equipment and a bed. There were no windows as it was in the basement so you didn't have a natural sense of time. The nurses aren't ward or floor nurses so what they're used to is different.

There are some areas in the GI documentation that my doctor gave me that could use improvement. The hospital has the stuff to make things manageable but nobody tells you about them. The recovery room had pads (small and large), and wipes but you had to open the cabinet to find them. The hospital has mesh underwear as well but you have to ask for them. In this case, they had two kinds - one with webbing and another that was more like regular thin underwear. I learned about the former the previous time and you see it mentioned on the board here from time to time. A document explaining what how to deal with the lack of control can greatly reduce the amount of work that the nurses would have to do if a patient went all over the bed or the floor or bathroom.

At any rate, thanks for your descriptions earlier. I've seen many descriptions but you don't really know what it's like until you get into it. I think that a lot of the cancer journey is like that. It helps to have some preparation or a theoretical idea of the challenges.

Cindy225

Details

Wow Mike!  I'm having flashbacks reading the details of your first few days in the hospital and at home.  I remember how frequent and raw the bathroom trips were and I thought it would never get better.  I wore ladies depends, pads and disposable underwear. Used tons of desitin and disposable wet wipes.  Sigh... I kept wondering if I made the right decision. Fast forward to now and I'm glad I did...  

Cindy

Mikenh

Last night I slept and only

Last night I slept and only had gas and a lot of gurgling. This morning I felt the need to go, went to the bathroom and went. It felt like a poop of old. What came out was granular and clumpy - certainly not firm. But there was enough water extracted so that I had control. And I had it for 10-15 seconds. I had to go a number of times but all were under control. Of course that's at home. I did feel the need to go this afternoon and sat for about two minutes and then went - and that really adds to confidence. It may be that it doesn't work on a long drive but it means that I might only have to use 2 pads/underwear instead of 12. So things went from really hard, to moderately hard to a lot better in the space of three days. If the large intestine continues to improve linearly, then things should be a lot better tomorrow.

So the bigger problem is just dealing with the wound and abdominal weakness. I dealt with those before in the resection so it won't seem as foreign. It's rough stuff but the doctors promised that things would get better in two to six weeks. Of course you don't necessarily believe them because they haven't gone through it but I guess I'm a believer now.

Trubrit

Mikenh said:

Last night I slept and only

Last night I slept and only had gas and a lot of gurgling. This morning I felt the need to go, went to the bathroom and went. It felt like a poop of old. What came out was granular and clumpy - certainly not firm. But there was enough water extracted so that I had control. And I had it for 10-15 seconds. I had to go a number of times but all were under control. Of course that's at home. I did feel the need to go this afternoon and sat for about two minutes and then went - and that really adds to confidence. It may be that it doesn't work on a long drive but it means that I might only have to use 2 pads/underwear instead of 12. So things went from really hard, to moderately hard to a lot better in the space of three days. If the large intestine continues to improve linearly, then things should be a lot better tomorrow.

So the bigger problem is just dealing with the wound and abdominal weakness. I dealt with those before in the resection so it won't seem as foreign. It's rough stuff but the doctors promised that things would get better in two to six weeks. Of course you don't necessarily believe them because they haven't gone through it but I guess I'm a believer now.

Doing well

I am happy to hear that you are doing so well. You're a real trouper. 

I had a wound infection once, and ended up having to pack it myself. It was most odd, poking what looked like shoelaces into my body. I hope your wound heal and heals well. 

I relied on Depend underwear for a long time. You've heard me say it before 'Depends are my freinds'. Now I can say 'were' becasue its past tense.  I've known people refuse to wear them, and suffer through all the unpleasantness of cleanup. I am glad that you are doing well with them.  It sounds like yours are pads. I used the underware type and they were surprisingly comfortable, for the most part. 

Do not overdo it.  I'm sure you're wise enough to have talked exercise with your Surgeon. I would be careful with the Yoga. 

It makes me happy to read your progress. You're on the up and up. 

Tru

Mikenh

Trubrit said:

Doing well

I am happy to hear that you are doing so well. You're a real trouper. 

I had a wound infection once, and ended up having to pack it myself. It was most odd, poking what looked like shoelaces into my body. I hope your wound heal and heals well. 

I relied on Depend underwear for a long time. You've heard me say it before 'Depends are my freinds'. Now I can say 'were' becasue its past tense.  I've known people refuse to wear them, and suffer through all the unpleasantness of cleanup. I am glad that you are doing well with them.  It sounds like yours are pads. I used the underware type and they were surprisingly comfortable, for the most part. 

Do not overdo it.  I'm sure you're wise enough to have talked exercise with your Surgeon. I would be careful with the Yoga. 

It makes me happy to read your progress. You're on the up and up. 

Tru

I have pads from my daughter

I have pads from my daughter (she bought them from Costco and didn't like them), a few pads from the hospital and a product like Depends in full underwear from CVS. I noticed that my supermarket has unwear for far less and may try a package of them. The problem with the pads is that they are attached with an adhesive strip and that's not enough to provide stability. It's also easier to toss the whole underwear rather than peel the pad off your underwear and then toss it as you can soil your underwear in the process. So I'm using full underwear now and we'll see how long I will need to wear it before I get comfortable without it.

I walked for an hour at Planet Fitness this afternoon with my wife on the treadmills. We were both walking pretty slowly, around 1.8 - 2.0 MPH. She because she has a strained ankle which I taped up this morning, and me because of the wound. It was nice to get a workout today - it was in the 90s here and a bit hot for us walking in the afternoon.

Mikenh

I'm a bit over a week outside

I'm a bit over a week outside of reversal and it's been quite tough. I suspect that I have a stomach bug, which, combined with the reversal, keeps me in the bathroom a lot. I am trying to adapt as best I can as challenges arise. Part of that is limiting eating but there are limitation as to how long I can do that.

Trubrit

Mikenh said:

I'm a bit over a week outside

I'm a bit over a week outside of reversal and it's been quite tough. I suspect that I have a stomach bug, which, combined with the reversal, keeps me in the bathroom a lot. I am trying to adapt as best I can as challenges arise. Part of that is limiting eating but there are limitation as to how long I can do that.

Sorry to read this

I hope that the bug goes away and you can start eating properly again.  You're in my thoughts and prayers. 

Tru

Mikenh

Last night was horrible as I

Last night was horrible as I was in the bathroom for four hours and I was in rough shape. It was brought on by a big dinner.

Today I went into the office and worked the whole day with no problems - bowels were under control, BMs felt normal - they weren't fully formed but firm enough for me to control. So it's highs and lows right now.

Mikenh

Mikenh said:

Last night was horrible as I

Last night was horrible as I was in the bathroom for four hours and I was in rough shape. It was brought on by a big dinner.

Today I went into the office and worked the whole day with no problems - bowels were under control, BMs felt normal - they weren't fully formed but firm enough for me to control. So it's highs and lows right now.

Nothing came out overnight

Nothing came out overnight nor this morning and I got into the office at 7:00 AM so still feeling great. We'll see how things go. I think that I would have been at this place this past weekend had I not had the stomach issue.

Cindy225

Every Day Gets A Little Bit Better

Sounds like your making progress Mike!  That's great news.  There will always be highs and lows.  I splurged the other night by eating a greek salad as a main meal which I know better but I really enjoyed eating every mouthful.  What a mistake as numerous bathroom events and terrible cramps but it was so good.  Everything in moderation including greek salads!  

Cindy

Mikenh

Oncologist said that I was

Oncologist said that I was cured in the meeting today. He offered surveillance but would be fine if I went to Boston as well.

CEA was 2.8 (3.8 and below is normal). It does appear now that for me, CEA is a poor indicator of cancer but a good indicator of my physical activity level.

I have to figure out who I will get Colonoscopies from. Locally would be more convenient if I can schedule it.  My GI guy became Chief Medical Officer of a regional hospital late last year but he's still doing clinical work half-time.

Dealing with the reversal is still very challenging.

abita

Mikenh said:

Oncologist said that I was

Oncologist said that I was cured in the meeting today. He offered surveillance but would be fine if I went to Boston as well.

CEA was 2.8 (3.8 and below is normal). It does appear now that for me, CEA is a poor indicator of cancer but a good indicator of my physical activity level.

I have to figure out who I will get Colonoscopies from. Locally would be more convenient if I can schedule it.  My GI guy became Chief Medical Officer of a regional hospital late last year but he's still doing clinical work half-time.

Dealing with the reversal is still very challenging.

Congratulations on being

Congratulations on being cured! What is survellance?

SandiaBuddy

Mikenh said:

Oncologist said that I was

Oncologist said that I was cured in the meeting today. He offered surveillance but would be fine if I went to Boston as well.

CEA was 2.8 (3.8 and below is normal). It does appear now that for me, CEA is a poor indicator of cancer but a good indicator of my physical activity level.

I have to figure out who I will get Colonoscopies from. Locally would be more convenient if I can schedule it.  My GI guy became Chief Medical Officer of a regional hospital late last year but he's still doing clinical work half-time.

Dealing with the reversal is still very challenging.

Congratulations

Cured.  That is a great word to hear.  Congratulations on your success and best wishes for ongoing health.

Mikenh

abita said:

Congratulations on being

Congratulations on being cured! What is survellance?

Surveillance is the 5-year

Surveillance is the 5-year monitoring post treatment.

Mikenh

As expected, I have some very

As expected, I have some very good days and some very bad days. The good days mean that I have okay control. The bad days, I spend these four hour periods of time going to the bathroom, cleaning and repeat over and over and over again for four hours.

The wound is healing up very nicely and it hurts very little now when I cough. I am comfortable at 2.7 to 3.3 MPH when walking. I was at 1.8 to 2.3 MPH before and my normal walking pace ranges from 3.5 to 4.2 MPH. I've felt like breaking into a run several times but I probably shouldn't do that just yet.

Visit to the surgeon for two-week post op. Overall I'd say the reversal stuff has been very challenging.

airborne72

Time

Give it time Mike.  There are several biological, physical, mental and even emotional factors in play.

Jim

Mikenh

Spent 12 hours going to the

Spent 12 hours going to the bathroom Wednesday night to Thursday. That was awful. Thursday during the day was fine outside of being tired. Today I feel great.

Stools are firming up and control is improving. I've worked on keeping supplies in the office, car and home and an emergency bag.

darcher

Congrats

  This is probably the longest running thread on the forum.    Keep it moving (Pun intended) 

Mikenh

Trip to the ER today. Fast

Trip to the ER today. Fast heartbeat. Bloods were fine - so maybe it was dehydration - not enough water. They gave me IV fluids (my arms look like hell as it's hard to get a line in when you are dehydrated). This didn't get my heartrate down. They used a drug that resets the heartrate and that got it down from 215 to 95 and it's in the 80s at home. I have a prescription for Lopressor to lower my heartrate and I see a cardiologist in a month.

I recall this feeling quite some time ago while taking Xeloda. It might have been hydration or Xeloda or stress/anxiety.

The GI stuff is still awful.

BRHMichigan

Mikenh said:

Trip to the ER today. Fast

Trip to the ER today. Fast heartbeat. Bloods were fine - so maybe it was dehydration - not enough water. They gave me IV fluids (my arms look like hell as it's hard to get a line in when you are dehydrated). This didn't get my heartrate down. They used a drug that resets the heartrate and that got it down from 215 to 95 and it's in the 80s at home. I have a prescription for Lopressor to lower my heartrate and I see a cardiologist in a month.

I recall this feeling quite some time ago while taking Xeloda. It might have been hydration or Xeloda or stress/anxiety.

The GI stuff is still awful.

Caught up

Wow, Mike. 

This is just an awesome account of your ileostomy reversal. I am sorry you're still encpuntering some very bad days; but your strength and determination sure got you through so far. 

Prayers that you can get the rapid heartbeat under control. Someone with your level of fitness should never expect that!