Mikenh and Surgery

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.

That is a high BP.  I'm glad they got it down for you. 

As they told my husband, when he had kidney stones 'Drink, drink, drink' (his version ends 'pee, pee, pee, which of course, will happen).

Tru

Mike:

Fortunately, your high level of physical fitness has conditioned your circulatory system to handle such stress but you don't want this to persist.  Hydrate and keep detailed notes of any stressors that might trigger a recurrence.

Hang tough.  This too shall pass.

Jim

airborne72 said:

Time

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

Jim

Yeah, I know. I'm not the most patient person around for life stuff. I was at the grocery store today and felt weak and tired. I did eat breakfast and light lunch. When I got home, I had two bags of chips and felt considerably better. My wife made me a bowl of oatmeal. I think that something's wrong with my hunger senses as I don't feel hungry mentally even though it appears that my body is screaming for food or water.

Cindy225 said:

Yikes!

Mike so scary to have your heart rate get so high!  Good thing you are seeing your cardiologist.  The GI stuff eventually settles down but doesn't go away...  Hope your system settles down soon and becomes more predictable.

Cindy

I suspect that my stomach isn't signalling when I am hungry. Today I went to the grocery store and I was weak, tired and sweating. It might have been the weather but I was worried that I'd have a repeat of yesterday. When I got home, I ate some junk carbs and felt much better. But felt worse afterwards. I had another 1200 calories and feel much better. So there's stuff that really signals besides hunger when things get extreme.

I had a deadline today at work and I was working late on it last night as well but I got it done. So there's some work stress as well.

There was one thing of note with the GI. I did have to go a lot but there was one time when a huge amount came out and it made me happy as I knew that I wouldn't have to go for a long time. The acid irritation and friction from paper results in a lot of pain. It's almost a month so things should be improving.

Output was good this morning though not as good as yesterday but larger ones mean fewer of them which makes a big deal in terms of irritation and time.

The hospital had wipes though they were very thick and only eight to a package but I asked for several packages to help with cleanups. When I got home I then went shopping for diapers and later, wipes. I tried a few different kinds - some basic wet wipes and baby wipes. I actually like both kinds but I found that the baby wipes were available in large quantities. I have a package of 400 from the supermarket and Costco has packages of 1,000 and I may try those next. I often use toilet paper because it costs a lot less and it is more easily available.

I usually carry a small bag with a few diapers, several pads, some small bags for waste, and a package of wipes to the bathroom. But I feel self-conscious. Sometimes I just stick the wipes in one pocket and the pads in the other pocket for the bathroom. Some handicapped bathrooms also have sinks so that I can make wet wipes from toilet paper and water. I sometimes carry around a small water bottle for that purpose.

So I try to be creative with solutions. Wipes are far more comfortable. I just need to keep up my supplies. So next round, maybe a 1,000 Kirkland box.

Trubrit said:

Bidet

Do you have a bidet at home?  It saves a whole bunch of money and environmental waste. I have been using a $26 bidet I purchased from Amazon.com, since 2014. Couldn't live without it. 

Tru

I have looked at a few models at Costco. There are a lot of things that I'd like to get done but this reversal stuff kind of ties me down. The bidet wouldn't provide a solution at work either.

Mikenh said:

I bought a set of 3 Peri

I bought a set of 3 Peri Bottles and these things are great. They work like a Bidet but they're portable. I have another order in for 3 more so that I can have two in each bathroom and two to carry around with me. So my options are the peri bottles, Kirkland wipes, and toilet paper in the bathroom. I use one, two or three depending on what I need to do and what I have in supplies.

I tried the Cavilon Spray as a barrier against irritation from waste and it does work though it is clumsy to apply and it's a rather expensive solution at $8 per ounce. But I have it so I'll use it. I ordered three additional barrier creams which should arrive next week and those should work a lot better than the Cavilon Spray.

I finally tried out the Imodium and it works quite well. It shuts things down for 12 to 16 hours and things resume afterwards. I also have Slippery Elm on order and it's said to clean you out fairly quickly. So I will have methods to slow things down and speed things up. I have received a few other suggestions to speed things up.

Things had been fairly miserable on more days and pretty good on others. The meds and herbs look like they will give me more control. I think that I'll be able to run with the Imodium as I won't need diapers or pads with it engaged.

I found some fecal incontinence pads which should be easier to use than diapers which have various issues.

So I'm working on making liberal use of technology to make life bearable. I'm hoping that things work well. The things that I've tried have provided incremental but noticable improvements. My approach is to do experiments to see how things work.

I met with the cardiologist yesterday and he said that bloodwork indicated dehydration. He said that I could discontinue the Lopressor and suggested bloodwork and an ultrasound to check on the heart shape. He said that I do enough exercise to skip the stress test.

I had the heart problems on capecitabine, and there are some remnants of it even a year after stopping, but not to a severe degree.  

https://www.ncbi.nlm.nih.gov/pubmed/28286287

We observed capecitabine-related cardiotoxicity in 5.9% of patients, and severe cardiotoxicity in 2.3% of patients. Combination treatment with capecitabine, oxaliplatin and bevacizumab was associated with the highest risk of cardiotoxicity.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5073470/

22 of 452 patients (4.9%) (95% CI 2.9% to 6.9%) had symptoms of cardiotoxicity (chest pain: n=13, dyspnoea: n=9, palpitations: n=2). 11 patients had changes on ECG (atrial fibrillation: n=5, ST deviations: n=3, T-wave abnormalities: n=2 and QTc prolongation: n=1). 2 patients (0.4%) sustained acute myocardial infarction. 1 patient (0.2%) developed cardiac arrest with lethal outcome. 4 of 6 patients (66%) retreated with capecitabine had recurrent symptoms at retreatment. Cardiac comorbidity (p=0.001), hypercholesterolaemia (p=0.005) and current smoking (p=0.023) were risk factors for cardiotoxicity in univariate analyses and remained significant when adjusted for age. Patients with cardiac comorbidity were 5.5 times (95% CI 2.0 to 14.8) more likely to develop cardiotoxicity. In the subgroup of patients with apparently no cardiac comorbidity, the incidence of cardiotoxicity was lower (3.7%) and hypercholesterolaemia (p=0.035) and current smoking (p=0.020) were risk factors of cardiotoxicity.

Mikenh said:

Almost 24 hours since taking

Almost 24 hours since taking Imodium and I feel that control is pretty good. I took off the diaper and just put a pad in my shorts about five hours ago and things have been decent. The Imodium can help train the body to work on control as it weakens the mechanism to make you go. I got 8 hours of sleep last night too - a rarity since surgery.

A few good nights sleep will make the world of difference.  I'm pleased that this is working well for you. May it continue. 

Tru

Mikenh said:

Just an update on where I am.

Just an update on where I am. I generally post on ColonTalk these days which is a similar forum.

I had Small Bowel obstructions about five months after the reversal and those were due to scar tissue. One of the times I was in the hospital overnight. I have to do various things to avoid these but it still happens a few times a year. I am going to talk to my surgeon about removing them but there's no guarantee that they won't grow back.

I still have clustering problems from time to time.

My job went away last August. I could have taken another position as there were a lot of openings but I decided to take a break from work (I've been working for 47 years. They gave me a generous severance and I went on COBRA and I haven't had to touch savings and investments. I will likely think about what I want to do in August or September of this year.

I'm generally working on my fitness, doing maintenance on the house and taking care of my mother. She's an hour away and I'm the closest of four kids (two are on the opposite coast) so I run errands for her and provide her with groceries. My sisters from the west coast are coming out this week after not being here for a year though they have a lot of things to do here related to their kids.

We've all had at least one vaccine. I've had my second along with my wife and extended family likely has had one or two. So it should be safe getting back together though I'm sure everyone will still wear masks. My mother has only gone outside her house about three times in the past year.

 

I had one co-worker who died because his hospital was closed last spring and he couldn't get treated so I'm sure that the pandemic has been rough on cancer patients for a lot of reasons.

 

I'm generally getting by.

What a treat to see you posting with an update.  Often times, we get a little worried - sometimes allot worried, when our freinds take a break, so thank you for popping back in. 

Darn those pesky bowel obstructions; they can be a real pain - literally. 

I think many of us, like you, can say 'I'm generally getting by'.  

Good luck in the future. May COVID & Cancer be a thing of the past.