Participant Observer, loose bowel syndrome, unexpected and unprepared.

I thought I had given my last participant observer report, but just so others who may go through the same protocol as I did, here is another report on the loose bowel syndrome. The lesson here is, always be prepared, and keep a supply of Depends at hand. Trust me, you will be glad you are forewarned. 

Even as I have gained strength and am recovering quite nicely, I still have that out of control gastro problem and had to go in and change all my clothes, including my socks and shoes. It came as a total surprise while I was in the garden. I am now of that classification known as the Depends Generation. I feel fine. Just can't go very far with assurance I won't embarrass myself and always wear the diaper/Depends when I go out in public. Oh yes, settling into that regression stage of development very nicely.  

I like the frequent naps part. 

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........Along with coconut oil & corn starch for the diaper rash or yeast......

Oh thanks Paricia, I didn't know that. I have coconut oil for cooking and It is solid and I store it in the frig. Is that the kind of coconut oil you mean? I do know about corn starch, and yes, it works. Thanks, loyal and trustworthy guide. 

Yes Joan, I keep a jar of coconut oil in the bathroom at room temp to use twice or three times a day on the whole genital area. Since chemo & femara gave me so many dry skin problems, & I've always been prone to yeast, the colitis & the resulting diaper rash has been quite stubborn. The traditional medical ointments just weren't working, but the coconut oil seems to be good with daily use.   

When I first was diagnosed, a nurse taught me things that would help or hurt my recovery. coconut oil was one of the products she told me to keep on hand. I don't remember her saying anything about using it for my skin, but I was pretty overwhelmed at that point and lost a lot of information. Laura went to my appointments with me and she took notes on her computer, then mailed me the notes for reference. I will go back and reread those nurse's instruction. 

Patricia, if has been so nice to have you as a guide for me on this challenge. Thank you.

 

I'll gladly blab Joan, if it helps in any way at all.

I am also taking a med called Lomotil to ''slow things down'' so I can get out of the house for a couple of hours & without relying on the diaper.

I take it when the flare up is bad, or only on days when I want to go out if it's not too bad.

The diapers are causing me too many skin issues to wear all the time, & I can't risk more public embarrassment or risk ruining our new carpets.

I also don't want to clean up sh*t !!!!

Oh Patricia, I thought I was the only one who had these explosive episodes and I want to warn others to be prepared. I have no clue they are coming, not even a twitch!

I have the same problem with Depends causing moisture to build up and skin rashes develop. So I don't wear them until and unless I am going out to a doctor's appointment or grocery shopping. 

Staying home close to facilities doesn't bother me because I enjoy not going anywhere. The only regret is that I don't go to other's homes, however, they come visit me. In the case of one of my cousins, she is a dynamic gourmet cook and I really miss her treats. I told her why I wasn't accepting her invitations so she brings them to me. We are trying to find a mutually good time for both of us now. She is a non-believer, married to a fundamentalist, and we have wonderful times talking about science and recent research showing so many things, i.e. brain studies, and now we have Cosmos to share. 

The colitis is explosive, sudden, & no warning, & I still maintain the chemo caused it.

I developed it about 6 months after chemo was done, & I asked the dr if it could have been the cause. He said it could very well be, & I also had irritable bowel syndrome for years beforehand so feel it was inevitable. This has been going on now for nearly 8 years, & when in remission, life is much nicer, but the sudden onset of coming out of remission never lets me relax. I think about it almost every waking minute, & afraid to make any plan involving more than 2 or 3 hours.

We want to go to Prince George on April 25th to visit our son but I can medicate enough to get through the 3 hour bus trip.

Having my life run by a bowel issue really is NOT a thrill.....but in Daniel's words......it is what it is.

Exactly! It is what it is. Like you, I seek all the information I can get, ask questions of everyone, I am willing to try anything that people suggest. If, when all is said and done, if I have no control over the condition and cannot predict when they will occur, the worst thing I can do is feel helpless and hopeless. That only leads to depression and anxiety. 

Therefore, it is what it is; now, how do I live a rich, fulfilling life, full of things I like to do, with people I like and who like me as I am, and get on with life.? The challenges are not over. So what? I am not defined by my challenges. I take pride in being resilient. 

The feeling is always there, kind of like the sword of that Greek god that I can never remember. There is a sword hanging, over which we have no control and cannot predict. It is what it is.  

I don't know the Greek gods, but I've heard the phrase "Sword of Damocles".  I can imagine it feels like that to some extent.

Hope you don't get too depressed Joan.

Spud, I think you are correct! I don't think depression will be a problem for me. I did have that bout at the beginning of chemo and the therapist had me out of it within an hour. If I do begin to go into one, I know some strategies to get out of it, and if they don't work I know the best cancer therapist I have ever seen or worked with. 

I felt like a free bird in the garden today and had no problems at all. So, go figure. 

Glad to hear it Joan.

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