Life update...Been gone from here a while.

[CityGardener]

Keep talking. This helps us all. I am learning from you guys and someone else may read our discussion and find it useful.

Ahem...pardon me for chiming in. I am one of those people who find this useful.

I come here to learn, and get info, but also lurk on posts where folks are talking about their difficulties. In the past year I went from being able to manage, and mostly deny that I had incontinence, to near total loss of bladder control. That transition has been harder emotionally than physically for me. Reading a thread like this helps me greatly. While I cannot relate to all of your symptoms, I can understand the struggle, and gain perspective on my own situation.

ThatFLguy: you have my sincerest sympathy for the conditions you find yourself currently in. I hope you get some answers and a good way to help manage all of these symptoms. I also hope it gets easier for you. Please keep sharing if you can. You'll be in my thoughts.

Kind regards,

[ThatFLguy]

Guys, it is obvious that we all are facing more than just a few challenges.

Messing yourself in public can be a real downer.

Just dealing with bowel incontinence can use up so much time during your day, particularly if you have two or more messy accidents in a day.

Then there is the emotional aspect. Wow. It is difficult to maintain a balanced outlook on life.

However, the three of us are coping with what life has thrown at us whereas many others have just given up.

ThatFLguy, ask your GI specialist doctor (not your general practitioner) again about using enemas. Your average primary care doctor just is not informed on this subject. It certainly sounds like you might be a good candidate. And, BTW, they do not cause dependency. Note that I am NOT referring to the chemical Fleets enemas. I have administered over 5,400 enemas and am not enema dependent. I am surprised that your doctor thinks physical therapy will manage everything.

Re diapers and diarrhea, there is no great choice. However, abandon those pull-ups. They absolutely are a bad choice for diarrhea. You need real tabbed (taped) Pampers. The best choices are those plastic-backed diapers with the highest internal standing leak guards, such as NorthShore MegaMax or Rearz Inspire +InControl. These have standing leak guards that are 2" high. Don't go for anything with less than 1 ½" high leak guards. As the diapers may not completely cope with the diarrhea, plastic pants are absolutely essential. Rubber pants (real rubber) seem to be a bit better for odor control.

It can be daunting as so much experimentation is required on our part. Our medical practitioners cannot magically find a perfect solution for our problems. Often one doctor will not agree with another.

We all are experimenting with stool softeners and laxatives. You have to find what works best for you. BTW, Miralax is polyethylene glycol.

Patrick, Lord I understand the need to vent. Most people who do not share at least some of our problems just cannot understand what we are going through. I acknowledge that I have it so much easier than either you or ThatFLguy.

Keep talking. This helps us all. I am learning from you guys and someone else may read our discussion and find it useful.

Best wishes,

--John
(double incontinent)

JDinVirginia,
Thanks for the reply. Enemas are still a no for me. My issue with my puborectalis makes it very difficult to get anything far enough up to keep the upper colon clear. While most people have to do two Fleet enemas before a test like the anal manometry, I have to space them out and sometimes do more than two. I also found that I have to fast before a test because it just depends on that puborectalis and what it is doing. When I went in for Defecography (proctography) I had to take the first fleet enema at 6:15 am and the second at 8:15 am I was not to eat after 6:15 am. I was still passing solids at 9:15 am so I ended up doing another enema then. GI doesn’t want me doing enemas unless it is for tests because of that pesky puborectalis. I have asked about a bowel program with enemas or suppositories but again GI does not feel that they will work.

I am frustrated with my GI doctor because for the longest time she was against me being out of work.
It took my PCP and physical therapist going over everything with her to get the picture of how bad this is. Like my GI did not even look at my charts, CT scans or anything until it was brought up by a PA-C… He looked at everything including what charts came from Florida where I had surgery. He was like “No” you are jacked up and we need to figure this out before you go back to work and rupture your bowel again because you cannot have a bowel movement on your own without medication.
So. Yea This year is all about finding out what can be done and if I am just going to be disabled for the rest of my life due to this.

Big thing for me is that I have a college degree and was working on a masters before all of this hit. (I have a degree in ministry specializing in Church leadership and pastoral duties and was working on a masters in church history to become a teaching pastor) But with covid-19 and this it never got anywhere so.

(Just a reference point this is just the last 18 months)
10-ER visits
10-PCP
9-GI
5-office visits
6-test Blood work, Rectal exam, Defecography (proctography), Anal Manometry, ect.
3-covid-19 tests(1 positive result)
2-urology appointments
and
40+ Physical therapy appointments
Pain is the side she does not want/or has made no effort to deal with. I spend countless hours on my couch in an almost fetal position due to pain.
Tylenol does nothing for my stomach.
As far as full-on diapers go. I gave Betterdry’s a test and will be switching to them for nighttime us soon. I like the high leak guards on them. I keep the last one of them I have in my backpack for just in case as well as some Abena L4 briefs.

Today I am going to get a car bag ready so I can keep it there for as needed.

Truly I needed this space.
I try to talk to my mom and grandmother, but they just do not get it. I spend most days at home because it is so hard to judge when I will have a bad day.

Thanks, you’ll

[JDinVirginia]

CityGardener, welcome. Getting past denial to acceptance of incontinence is a very difficult but very important step. Some of us had more difficulty than others but you will find a lot of support here at ISC. Just be patient and take things one day at a time. You will need to experiment to find what works best for you.

ThatFlGuy, wow, so much of your time has been tied up in medical appointments! Are you comfortable with how your GI doctor is now managing your situation?

A car bag is absolutely essential. I call mine my "disaster kit." I have a small, relatively discreet backpack with essentials for a change, but, in case I have a major messy accident that leaks and soils my clothing, I keep in my car trunk a compete change of clothes in my "disaster kit," along with supplies to change a messy diaper when away from the house. That includes plastic bags not only for the messy diaper but also bags for the soiled clothing, and LOTS of wipes.

--John

[ThatFLguy]

CityGardener, welcome. Getting past denial to acceptance of incontinence is a very difficult but very important step. Some of us had more difficulty than others but you will find a lot of support here at ISC. Just be patient and take things one day at a time. You will need to experiment to find what works best for you.

ThatFlGuy, wow, so much of your time has been tied up in medical appointments! Are you comfortable with how your GI doctor is now managing your situation?

A car bag is absolutely essential. I call mine my "disaster kit." I have a small, relatively discreet backpack with essentials for a change, but, in case I have a major messy accident that leaks and soils my clothing, I keep in my car trunk a compete change of clothes in my "disaster kit," along with supplies to change a messy diaper when away from the house. That includes plastic bags not only for the messy diaper but also bags for the soiled clothing, and LOTS of wipes.

--John

Am I comfortable with how my GI doctor is now managing my situation?

Truly not really.
It took going and seeing one of the PA-C's at GI to even get on the prescription medications that I am on now. One of them, "Dicyclomine" keeps me from having as many spasms as I was. Though it is still quite a few right now.

I have had quite a few issues with this GI doctor. 1) Not being able to get in to see her unless I drive all the way to the hospital to get on her physical schedule (That is an hour each way) 2) She never wants to give my insurance any information when requested. 3) She was not willing to say that I needed to be out of work until this gets figured out. 4) She tried the whole "I have patients that a fare worse than you and they work thing". 5) And it takes 24-48 hours for her to respond to a message I send her or I have to call/go to get test results from tests she ordered.

So no I am not happy. I have a patient care advocate and went so far as to request a different doctor at one point and then the advocate lit a fire under her but and everything changed for a bit so then I was okay. But this year I have no time for games or doctors not doing their jobs.

I have exactly 19 months left of insurance-supported disability by the spring of next year they will begin helping me file an SSD case using all the information they have at hand. So doctors have to be on board and if not they get canned.

I don't want to be where I am but I have no choice in the matter and if the doctors are doing nothing to get me back to where I can be somewhat normal again then I have to know why that is.

So I hope this year things get figured out. Or they are honest with me on what the future looks like.

[Steve M.]

Your Doc said
4) She tried the whole "I have patients that a fare worse than you and they work thing".

You gotta be kidding. It should be a be an easy step for your doc to write a work excuse for you. When I had a surgery, my doctor was mostly concerned about whether I felt well enough to go back to work. It was a personal patient choice. It had nothing to do with how sick or injured any other patient was. Sounds like your doctor is working for an insurance company covering a third party's liability and not in your corner. Just saying.
Good luck with our greed driven and government managed medical system.....rant..rant..rant.
My prayers are with you.

[ThatFLguy]

Your Doc said
4) She tried the whole "I have patients that a fare worse than you and they work thing".

You gotta be kidding. It should be a be an easy step for your doc to write a work excuse for you. When I had a surgery, my doctor was mostly concerned about whether I felt well enough to go back to work. It was a personal patient choice. It had nothing to do with how sick or injured any other patient was. Sounds like your doctor is working for an insurance company covering a third party's liability and not in your corner. Just saying.
Good luck with our greed driven and government managed medical system.....rant..rant..rant.
My prayers are with you.

Nope, not kidding. Wait it gets worse.

My mother went with me to one appointment with her because I was too broke to drive and she wanted to keep my questions on task.

So I needed paperwork filled out both for work and for "what was then short term disability." She did not want to fill out anything. My mom went so far as to threaten to get me a l lawyer.
At that point, she agreed to fill out the paperwork. But how she filled it out was a problem. She listed not restrictions, no accommodations needed. (And by she I mean her assistant after the 10th message asking why it was not filled out yet) So I had to drive all the way back to get it amended by her.

"Not that I have not had issues with other doctors doing the same thing."

But yea, she was never on board with me being on disability until my PCP and physical therapist stepped in. They literally saved me. I was so depressed over all of this because of paperwork issues.

side note. When I was still trying to go to work was when I had back-to-back ER visits. And my Gi Doctor was not taking that into account. I had to go through security and have my bag checked every time. So, like five plus times a work shift. It was so embarrassing. One security guard wanted to take everything out of my bag and wanted me to explain why I needed what was in it, and what they were. So a lot of that time was anxiety and I never made it through a full shift so work wanted answers from doctors and It was very hard to get.

Now I don't have to worry about it, Just deal with doctors getting insurance the information that they need.

[CityGardener]

side note. When I was still trying to go to work was when I had back-to-back ER visits. And my Gi Doctor was not taking that into account. I had to go through security and have my bag checked every time. So, like five plus times a work shift. It was so embarrassing. One security guard wanted to take everything out of my bag and wanted me to explain why I needed what was in it, and what they were.

That seems so unreasonably cruel, and sadistic. I'm sorry you had to be put through that. I wouldn't want to deal with that either. Did you ever consider reporting that as harassment to your HR department? I would think that it'd be pretty obvious why someone would need their incontinence supplies. Are you really going to subject this person to the humiliation of telling you what they are out loud? c'mon!

[ThatFLguy]

side note. When I was still trying to go to work was when I had back-to-back ER visits. And my Gi Doctor was not taking that into account. I had to go through security and have my bag checked every time. So, like five plus times a work shift. It was so embarrassing. One security guard wanted to take everything out of my bag and wanted me to explain why I needed what was in it, and what they were.

That seems so unreasonably cruel, and sadistic. I'm sorry you had to be put through that. I wouldn't want to deal with that either. Did you ever consider reporting that as harassment to your HR department? I would think that it'd be pretty obvious why someone would need their incontinence supplies. Are you really going to subject this person to the humiliation of telling you what they are out loud? c'mon!

The security guard that I had an issue with was moved out of where I was working and then let go.
He did not work for the company I was with, He was an outsourced employee.
He was actually trying to empty my bag himself and I had to get my manager involved to stop him.
That was one of the last few days that I was there.
As far as GI goes. I had to make the scheduler put me in for more than a 15-minute appointment so I can make her review everything. I even showed her what the PA-C that I saw with GI said about my test results as well informed her that he 1) did a full physical 2) reviewed everything in my file and
3) Personally called to get me Into physical therapy when my now current therapist was delayed back for my care.

Truly That PA-C has done more for my care with the exception of the actual tests I have had done than anyone I have seen.