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

[ThatFLguy]

Hi all.
My last post was a while ago. a lot has happened.

In June of 2019, I came north for my family reunion and never left. I am now a Pennsylvania resident and live in the same town that I was born in.

I got a job working in a distribution warehouse and was doing very well until the end of 2019. In fact, I ended up having a follow-up colonoscopy consultation appointment on the same day that all of this was discovered back in 2018, and a lot of emotions came up and it was hard to learn just how bad that surgery was. That colonoscopy was back on 12/26/2019 and I found out that the issues that brought me back to the doctors here in Pa. were in some part due to surgery.

I ended up on medication for a bit but after getting a PCP we stopped that.

Fast forward to June and I had a consultation phone call with a GI doctor here in Pa. and it was looking like I was heading for bad side effects. The next few days were filled with doctor's visits due to debilitating stomach pain. On June 25 I had another colonoscopy and endoscopy with GI and biopsies were taken.

The next few months were filled with ER. visits.

Then on 8/20/2020, I had an Anal Manometry that found what I am now dealing with.

I went from working from July 2019 to being on disability by September of 2020.

I am dealing with duel incontinence due to chronic constipation even with all the medication that I am on. I go to physical therapy every week and have not seen any improvement. I recently went through a Defecography (proctography) test that only went further to confirm the dyssynergic defecation with chronic hypersensitivity.

At this point, GI can only recommend keeping going to therapy then repeat the anal manometry test again this summer, and if no improvement then set me up with a surgent to talk options.

So yea a lot has gone on... O and I had covid in Jan. and had to stay out of therapy so yep 2021 is going to be a crazy year of tests and maybe another surgery.. O. Joy

[JDinVirginia]

Welcome back! But I'm sorry to read about your troubles.

I'm double incontinent and have had colonoscopy, videodefecography,anal manometry, etc., so I understand somewhat all the fun you have been having (not).

After years of bowel incontinence with doctors not identifying my underlying bowel problems, I have learned that I have chronic severe constipation causing overflow diarrhea (ugh) and neurogenic bowel. Currently I am using the Coloplast Peristeen Irrigation system. That is a fancy enema system that uses an inflated catheter balloon to block the rectum and enable me to retain the water for the enema to be effective.

What is the underlying cause of your issues?

--John

[ThatFLguy]

Welcome back! But I'm sorry to read about your troubles.

I'm double incontinent and have had colonoscopy, videodefecography,anal manometry, etc., so I understand somewhat all the fun you have been having (not).

After years of bowel incontinence with doctors not identifying my underlying bowel problems, I have learned that I have chronic severe constipation causing overflow diarrhea (ugh) and neurogenic bowel. Currently I am using the Coloplast Peristeen Irrigation system. That is a fancy enema system that uses an inflated catheter balloon to block the rectum and enable me to retain the water for the enema to be effective.

What is the underlying cause of your issues?

--John

I was diagnosed with dyssynergic defecation with hypersensitivity type 2, disfunction of the puborectalis, dysfunctions of both internal and external anal sphincters, Lower abs disfunction, and pelvic floor issues. My physical therapist has does not think that there is anything that we can do about in but we are trying because I am in a lot of pain and surgery may not fix this in a way that would give me back some of my quality of life so. Because of the constipation I am on a harsh amount of medication

1 dose of Miralax twice a day
1 docusate sodium 100mg 3 times a day (Stool softeners)
1 dose of Metamucil twice a day
1 dose of omeprazole 20mg
1 dose of dicyclomine 20mg 4 times a day
1 dose of montelukast 10 mg (Singulair for alergies)
1 does of doxazosin 2mg at bedtime
400mg of magnesium per day
And I can only take Tylenol for pain so

[Patrick]

I am in awe of what the two of you must endure. And, you moved back to Pennsylvania just in time to experience a typical winter here, not the mild ones we had the previous three years. Loss of bowel control is a bummer. Enemas work for me, in the sense that, afterwards, I can live for the next 36-48 hours secure that my protection will not be overwhelmed by a bowel release. However, I am so clumsy that I must spend the next hour cleaning the bathroom if I want to continue to live in a happy household. I do use most of the same GI medications on your list. But my problem, in addition to loss of control, is that regurgitation can threaten to asphyxiate me; sometimes that regurgitation can include fecal material, which can be disconcerting. Bowel blockages are my nemesis; I'll do anything I can to prevent them. I guess my complaint with the medical establishment, regarding GI problems, is that those who give advice seem blissfully unaware of just how their patients must endure. The websites for gastroparesis stress a diet which amounts to putting their patients on infant food. Even if that were possible, it would give me blockages on top of blockages. It would make my situation even more difficult, not better. Welcome back, to Pennsylvania, if not to GI problems. I look forward to your insights; I'll try anything that you recommend as having worked for you. Again, thank yo, and good luck.

[JDinVirginia]

ThatFLGuy, we share many of the same medications with Patrick.

Are you able to take enemas to help manage your bowel incontinence? Do you know whether you are upper motor neuron or lower motor neuron?

If you are not aware of the Peristeen Rectal Irrigation System, you might Google it. There are plenty of Youtube videos. As Patrick noted, after an effective enema, many folk can go about their lives for the next 24 to 48 hours with very little risk of a bowel accident. However, most physicians are not aware of it.

In my area of North Carolina we only get about three weeks of winter. I think those three weeks are behind us now.

Patrick, your medical situation is so complex that I am amazed at how you have managed it. I completely understand about cleaning up messy bathrooms after an enema, having self-administered over 5,000. However, re the Peristeen irrigation system, I will note that it keeps the bathroom neat as it is designed to be used completely while seated on the toilet. As it was designed with those with SCI injuries, it is fairly simple to use. I have just gone over 110 days without a bowel accident, due to the Peristeen system.

Let's keep the dialogue going, guys.

--John
(double incontinent)

[Patrick]

Keep the dialog going? OK, here goes. My inner ear disease and brain injury and tumor are obvious to all who see me; I could not hide them if I tried. My family understand, and the curious looks of strangers no longer bother me, as they did when I was younger. Double incontinence, however, is a different horse altogether. The management techniques, such as keeping track of the locations of handicapped restrooms when I'm out and about, keeping a well-stocked diaper/gym bag with me at all times, the occasional accidents, and all the other common experiences among us, are not appropriate in polite conversation. Being able to vent here, among folks who fully understand what I must endure, because they endure it too, is priceless. I owe you more than I can ever repay. Thank you, cubed.

[ThatFLguy]

ThatFLGuy, we share many of the same medications with Patrick.

Are you able to take enemas to help manage your bowel incontinence? Do you know whether you are upper motor neuron or lower motor neuron?

If you are not aware of the Peristeen Rectal Irrigation System, you might Google it. There are plenty of Youtube videos. As Patrick noted, after an effective enema, many folk can go about their lives for the next 24 to 48 hours with very little risk of a bowel accident. However, most physicians are not aware of it.

In my area of North Carolina we only get about three weeks of winter. I think those three weeks are behind us now.

Patrick, your medical situation is so complex that I am amazed at how you have managed it. I completely understand about cleaning up messy bathrooms after an enema, having self-administered over 5,000. However, re the Peristeen irrigation system, I will note that it keeps the bathroom neat as it is designed to be used completely while seated on the toilet. As it was designed with those with SCI injuries, it is fairly simple to use. I have just gone over 110 days without a bowel accident, due to the Peristeen system.

Let's keep the dialogue going, guys.

--John
(double incontinent)

So, a lot to expand on here.
First, enema's are a big no.. Right now my GI doctor doesn't want me going that way because of dependency... (Not like I am not already dependent on laxatives already) My issue is that because the damage to the puborectalis is pulling tight and stopping me from emptying, my internal anal sphincter is the only thing stopping me from messing myself at it relaxes when it should not. So then just a few minutes after going I have to literally run back to the bathroom and I never make it. The thing is that the first bowel movement is mush and after that, it is all diarrhea for the rest of the day. So until I have that mush bowel movement I am safe to live life because I can most times feel that one coming. Not that I have not had mush accidents too, because I have.

Also, I have work up in the morning, rolled over to get out of bed, and had everything relax and messed myself. In just the past month I have had more bowel accidents than I can count. The worst ones are when I am out shopping. Lucky for me I tend to only have issues later in the day so If I get up and go in the early afternoon it is less likely to happen but still has.

My biggest issue right now Is I keep getting bound up. Or I will pass corn that I ate just a few hours before on the same day. (Like I ate at my grandmother's around 6:30 pm and passed the peas and corn I had by 9 pm)

There are days where I just sit on the couch in pain because my guts hurt so bad.

And all I can take for it is Tylenol. No tums or Pepto. No noting else.

And, my GI thinks all this will be solved by physical therapy... And, we have not even addressed the bladder issues.

I don't make it to the bathroom for bladder more times than I do. I always have a bit of leakage no matter what. Like I can go... Then start washing my dishes and I will leak enough to have to change an Abena L3 pul-up

Now... In June of 2019, I came up here to PA. Starting working a very physical job and by Nov. had my first hospital visit. In Dec. I had a colonoscopy with General surgery to assess the surgery I had done in FL. The doctor told me that they took a lot out....Like almost two feet as he could see the suture scars. He worried that there was not enough left for my colon to process things right without intervention so that is why I go put on with GI. Then Covid hit in the spring of 2020 and it took some time to figure out that I was not okay. In May I had the worst issue I ever had... and that is when everything went to heck. I was very bound up and could not go. I ended up so bad that I was leaking pee but still could not go #2.

I came home from work and took enough Miralax to do the first part of a cleanout and then called my doctor the second their office opened ( I worked nights so) I was seen that day, given an x-ray, and found to be extremely bound up. (I left work by 11 pm, was home, and took Miralax by 12 am) So was told to take another 7 doses of Miralax and see what that does.

Here is the issue. The day after all of that I had to prep for my colonoscopy with GI so by then I was good and cleaned out..


GI is going to do a full re-assessment on me in May and see where I am at and decide if other doctors need to be brought in.

I have been with the same physical therapist since September of last year and she feels like we are not progressing because the muscles can not be fixed. She has even talked with some other therapist who says that if all the muscles I have not working right are that bad then they may not be anything that can be done from a therapist so we will see in May what they say.

They are going to repet some tests and see where I am at so.

[Patrick]

GI issues are no walk in the park. For different reasons, I too have difficulty with blockages. However, I have been told not to use Miralax. Instead, I use stool softener and polyethylene glycol. I like the polyethylene because it is granular, like salt or white sugar, so I can increase or reduce the dosage as I think appropriate. This flexibility can be a life saver. But GI blockages can be terrible; prevent them by any means if you can. Good luck with your current physicians and keep us informed about your test results and your physicians' advice about your future.

[ThatFLguy]

GI issues are no walk in the park. For different reasons, I too have difficulty with blockages. However, I have been told not to use Miralax. Instead, I use stool softener and polyethylene glycol. I like the polyethylene because it is granular, like salt or white sugar, so I can increase or reduce the dosage as I think appropriate. This flexibility can be a life saver. But GI blockages can be terrible; prevent them by any means if you can. Good luck with your current physicians and keep us informed about your test results and your physicians' advice about your future.

I am trying. The thing for me is that after my first bowel movement everything else is diarrhea, but that first bowel movement is painful but not firm. It makes me have spasms and by the time I am done even my bladder hurts. I have tried the generic brand of Miralax and it does work but something in it makes my stomach upset more than normally. Truly day to day is hell as my guts hurt all the time and there is nothing I can do about it. Tylenol takes the edge off but does nothing for the cramps and spasms.

I feel like right now my GI and therapist are out of ideas and in May I might be back at square one with this. The big thing is that I am on insurance-supported disability and not SSD so the Insurence has to keep tabs on my care and make sure that things don't change. That insurance will cover this for two years and then help me get SSD but I am only six months in so.

Question, I have been using the Abena L3 pul-ups, they work for most of my issues but I have had so many real blowouts. I know there are better things out there as I use Dry24/7 at night but my issue is that nothing seems to absorb diarrhea at all. Is there something out there that would work better for that type of accident?

[JDinVirginia]

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)