First Biofeedback Session – Sun 6/19/16

Biofeedback – the use of electronic monitoring of a normally automatic bodily function in order to train someone to acquire voluntary control of that function.  In my case better known as “potty training” lol.

I’m a little apprehensive about blogging about this topic as well – it’s kind of a “non-talked about” topic – BUT – I think it’s IMPORTANT for these things to be talked about.  That was the entire premise and motivation when I started my blog – my own frustration with how little information I could find on my issues!  So here I am – if pooping isn’t your thing – STOP READING NOW – though I will do my best to present this in a less than disgusting light – it’s still a touchy area!

So a couple months ago I was “finallyyyyyyy” diagnosed with  Dyssynergia Defecation, basically my pooper doesn’t function properly.  Yesterday I found out more specifically that I have 4 unique issues:

1.  The muscles in the bowel area used to moved stool down don’t have the strength they should – (think of the strength in your hand trying to open a jar – if the muscle just isn’t there – it’s not happening).
2. There is a defect in the communication between my brain and my rectum, when having a bowel movement that muscle should open/relax to allow stool to eascape – and mine closes up rather than opens.
3. The other defect is that when my brain says “push” what my body is doing is pushing – but in the wrong direction and lastly…
4. Sensation is an important part of the digestive system – including the bowel, and my level of “sensation” is almost non-existent.  Meaning part of the testing is to see WHEN you feel a slight urge to go, when you feel like oh I gotta go, when you feel like OH LORD where’s the potty.  Mine is about 1/4 of what it should be – meaning if a normal person feel…slight urge at 20 and OH LORD at 80, I feel a slight urge at 80 and the OH LORD for me is off the charts.

So the positive takeaways for me here are – OH WOW there IS a problem – that someone actually IDENTIFIED – only took 4 years – but alas here we are.  The even more positive is that there is a way to potentially HELP these issues and that is with the biofeedback.  I was CAUTIOUSLY optimistic about the ability of this to help me, but after my first appointment on Friday I’m now simply optimistic period!  I learned SO MUCH in my hour and a half with that technician, so much that just blew my mind.

It’s not an overnight cure – basically she showed me where things were going wrong, and taught me some techniques to help correct them.  Now I have to practice those for the next month -and then go back for session #2 to see how I’m progressing.  My point in sharing this blog is IF you have issues in this area – educate yourself and find someone who deals with this.  Although it’s a yucky subject, and the test and stuff is not “pleasant” it’s also not painful or awful AND omg to have HOPE about anything medically is a like a huge gift to me personally.  My suggestion is read up, educate yourself, and keep going until you find a medical provider who LISTENS and who is active is trying to get to the bottom of the problem.  I’ve LITERALLY been telling doctors for four years that I didn’t have an urge to poop and rarely pooped etc., and was met with a constant array of prescriptions and shoulder shrugs….so my message is DON’T GIVE UP – it’s pretty unlikely that you are crazy and though I understand my situation is unique as they all are – this is an area to think about / explore at least.  It’s one little “cog” in the digestive wheel – but it’s an important one and if my sharing my pooping issues gives just ONE person a little hope about their situation then it’s well worth any embarrassment.

I always like to add when talking about medical stuff – I am NOT in any way a medical professional.  My blog is about my personal experience and ANYTHING you do/try etc. needs to be done with your medical professionals  –  just offering this up as food for thought – don’t despair – KEEP ON KEEPING ON!  Hey, thanks for stopping by – as always! ❤

 

Illness is Hectic ~Sun 5/1/16

The last couple of weeks have been absolutely crazy medically speaking – way to much crap going on.  Here’s the updates though:

1.  Yale and the stomach stuff:  I went to Yale on this past Wednesday to see the doctor and get the results of my tests.  The  Anorectal Manometry test showed that I do in fact have Dyssynergic defecation.  So I’m not “happy” to have it BUT I am happy that there is in fact “something wrong” that we can work on.  The very short unmedical explanation of this is that when one attempts to have a bowel movement – the muscles work to EXPEL stool, my muscles instead work in the opposite direction and in essence push it back up through the intestinal tract rather than expel it.  The treatments that we are going to try first are Biofeedback Therapy and Physical Therapy for the pelvic floor.  Honestly I’m not looking forward to either, BUT I’m going to try really hard to make them work because she told me that if those are unsuccessful the next option would be a colostomy bag and yeah, no thanks!  So that will be starting soon and will take 3-6 months to complete to see if the treatment is successful.
2. She also did a small bowel follow through study and the there were just two things of note from that.  First is that my esophagus shows signs of deterioration – even though I don’t have any symptoms on that end, and the doctor doing the test recommends another scope to look at that.  He said it **could be** just deterioration from years of vomiting, BUT what he was seeing could also be polyps so he says a scope is in order.  The only other thing he saw was some adhesions in my bowels that could be causing partial obstructions.  In both cases she said that I can see my regular G.I. doctor to deal with these findings as he is much closer geographically, so she’s sending him the reports and recommendations and I go see him on the 17th to follow up on those parts.  The biofeedback and pelvic floor therapy are very specialized and will be done at Yale.
3. My tube was successfully replaced a couple of weeks ago so that’s one thing off the list and taken care of – YEAH!
4. The female issues are also being dealt with.  I went to the women’s cancer center earlier this week and met with the doctor there.  Anyone local to me who has issues I HIGHLY recommend that place, amazingly through and accommodating and and so very nice, what I though would be a half hour appointment was actually FOUR and a half hours!  End result of THAT is that I’m having a complete hysterectomy on May 18th through the cancer center, and fingers crossed that this completes my dealing with THIS issue.
5. I’m still waiting to hear back from the dermatologist about the biopsies she did on the cysts on my fingers to see whether they indicate an autoimmune condition etc.  Should get those results in the next couple weeks and the fingers are healing.
6. The last thing on the list is the tests that neurologist is doing to determine the cause of the Syncope (light headedness and passing out).  She’s doing a whole battery of tests in the interest of being through – but we’re both leaning towards blood pressure issues where my veins don’t contract properly to return blood to my head & heart regulating blood pressure.  I’m having a Tilt Table test on May 13th at the heart center, so that should really be the test to answer that question.  One of the other things she’s having me do is blood pressure monitoring, this morning we were 78/40 – and that’s not uncommon so my money is really on the blood pressure thing.  The UPSIDE is that she said there is in fact medication to help regulate and correct that so I’m hopeful that this too will become a non-issue in the near future!

Medically life’s been a little challenging so far this year lol, but just hoping these things continue to be dealt with and crossed off the list.  All combined it’s certainly taken it’s toll on how I’ve been feeling overall – so I’m trying really hard to just make it through a day at a time…but boy I’ll be glad when I can get back to just the belly issues lol.  Who would of though I’d be hoping for THAT, ahhhh well life is a funny ride sometimes.  I did a number of links to the specific things that are going on just so that if you have something similar going on or are looking for more information you have an easy place to start.  Thanks for stopping by – here’s hoping a month from now this list will be down to one thing again!  Much love as always!