11 months..and counting

A place for you to keep a record of your healing or surgery.

Return to Diaries




Re: 11 months..and counting

Postby msimon » 26 Nov 2015, 13:03

I am doing okay. Thanks for asking. I still go for pelvic floor physio and injections (when I can get them) and they help some but just don't last. Pooping is still painful a lot of the time but I haven't bled in months. Can't remember when I last did (not to jinx it). My pain now is the cranky muscles that just don't want to be normal again. I am able to do a lot more now though and am still progressing as far as getting my life back.

As for eating, I eat whatever I want now. I even recently stopped eating my wild rice every day for supper...pizza, burgers, halloween candy, cake, you name it...I eat it. I just make sure to take my Peg (laxaday) 3 tiny doses/day and my magnesium 2 times/day and I am usually good to go. It's still soft serve but I have to have it that way because if the cranky muscles feel my BM too much the tighten up and I can't go. Arg. It is how it is, I guess. :dunno:
Dec '13 Fissure from anoscope
3 X internal sphincter botox
'08-'15 Botox for pelvic floor dysfunction
Nov '14 LIS/sentinel tag removal
Feb '15 Deroofing of recurrent infection from LIS
summer '15-healed but still ongoing muscle dysfunction/pain
msimon
Moderator
 
Posts: 1343
Topics: 64
Joined: 08 Aug 2014, 19:38
Has thanked: 76 times
Been thanked: 154 times
Gender: Female

Re: 11 months..and counting

Postby Canadabum » 27 Nov 2015, 16:14

Not sure what is going on with me...I had plateaued a while ago...over the late summer...all was going on as normal which included awareness, some discomfort etc -- then was told I was healed in late Sept.

Since being told i was healed things seem to have unravelled a bit...

The last couple days i have not had any blood...but since i did have some last week my rear side is now feeling pretty sore. When I clench my cheeks together I can feel a rough/scratchy and painful feeling in the lower sphincter area...generally not good.

Wish I knew what was going on and what my next best step is...that is the tough part, there is no clear path here.
User avatar
Canadabum
Moderator
 
Posts: 607
Topics: 19
Joined: 12 Apr 2015, 21:01
Has thanked: 179 times
Been thanked: 123 times
Gender: Male

Re: 11 months..and counting

Postby msimon » 27 Nov 2015, 21:30

I know what you mean. I still feel in limbo too as I don't know if my pain now is my sphincter or my pelvic floor. Until I let my physio there we won't know. And I am just not at the point of being willing to take that risk right now, when I am getting by okay. It's probably both.

I still have an appointment to have anorectal manometry done that I keep pushing the date forward on. Just can't seem to let go of it when things still just aren't right. I have had LIS already so I don't really know what value the test has for me anyway. I wonder if that test may be helpful for you to have. I forget, do you have a CRS?
Dec '13 Fissure from anoscope
3 X internal sphincter botox
'08-'15 Botox for pelvic floor dysfunction
Nov '14 LIS/sentinel tag removal
Feb '15 Deroofing of recurrent infection from LIS
summer '15-healed but still ongoing muscle dysfunction/pain
msimon
Moderator
 
Posts: 1343
Topics: 64
Joined: 08 Aug 2014, 19:38
Has thanked: 76 times
Been thanked: 154 times
Gender: Female

Re: 11 months..and counting

Postby Canadabum » 28 Nov 2015, 11:08

Msimon...you are a treasure trove of info!!

First question...how much miralax and magnesium are you taking. I take a teaspoon in the morning and evening and dropped my magnesium. Perhaps I should add it back.

I have consulted with a very respected general surgeon who does tons of ano rectal work. So not a CRS but pretty close. I have not called his office for feedback only because I figured...what can he really tell me anyways. I know it is a lame excuse and as I write this I am surprised I haven't tried to get some feedback.

I am curious - your physio...is it literally someone sticking their finger up there and massaging the muscle? How did you find your physiotherapist? I wouldn't even know where to look.

Why do you think the test might be helpful to me...what would it tell me?

I had a bit of blood again today just on the tp and not when I went for a second time. This is all so tiring...but, and it is a big but (no pun intended!), I have so much in my life to be thankful for in general...I am choosing to focus there as much as I can.

As always - thank you soooo much for your feedback.
Canadabum
User avatar
Canadabum
Moderator
 
Posts: 607
Topics: 19
Joined: 12 Apr 2015, 21:01
Has thanked: 179 times
Been thanked: 123 times
Gender: Male

Re: 11 months..and counting

Postby Canadabum » 28 Nov 2015, 14:11

....and spasms are back. Ouch
User avatar
Canadabum
Moderator
 
Posts: 607
Topics: 19
Joined: 12 Apr 2015, 21:01
Has thanked: 179 times
Been thanked: 123 times
Gender: Male

Re: 11 months..and counting

Postby msimon » 28 Nov 2015, 14:56

lol! TMI, I know.

Hmmm, I take a 1/2 tsp of restorlax with my first meal, dinner and before bed (so 1.5tsp/day)

I take 200mg magnesium citrate with dinner (any sooner and I have an upset gut for the day) and another 300mg before bed (this gets things moving right when I wake up in the am). Taking all this essentially liquifies things (like soft serve ice cream), which most people probably don't want but is the only way I can function.

Yes, my physio sticks her fingers in my woohoo and works the pelvic floor muscles and some rectal muscles through the vaginal wall. It can be very painful but seems to help. This physio is at a pelvic pain clinic in my city that I waited 2 years to get into. It is only for women. I don't know if any of the pelvic pain clinics ever accept men. I used to go to a private clinic in my city that does accept men but the cost is the patient's. I don't remember how I found out about all this it's been so long. I believe each province has a site for physios and they should list their specialties. Your GP would be a good place to start asking about a pelvic pain clinic.

anorectal manometry assesses the resting and contracting pressures of the sphincter muscles. The most valuable part of this test is to find if the resting pressure of your internal anal sphincter is too high. The surgeon you consulted would be able to refer you, i would think, if he/she thought it would offer some insight.

So sorry to hear you still have the bleeding and dreaded spasms. I think if I were you I would do some investigation with this surgeon. Just seems like it's going on so long with you and to not really understand the ups and downs and inconsistent information you have gotten must be so frustrating.

Very glad to hear that you are able to keep perspective on things though and have so many other great things going on in your life. Things like this sure make one hold on harder to those, don't they?
Dec '13 Fissure from anoscope
3 X internal sphincter botox
'08-'15 Botox for pelvic floor dysfunction
Nov '14 LIS/sentinel tag removal
Feb '15 Deroofing of recurrent infection from LIS
summer '15-healed but still ongoing muscle dysfunction/pain
msimon
Moderator
 
Posts: 1343
Topics: 64
Joined: 08 Aug 2014, 19:38
Has thanked: 76 times
Been thanked: 154 times
Gender: Female

Re: 11 months..and counting

Postby owmybum » 29 Nov 2015, 11:12

Hold on to those things that are positive in your life canadabum.......

I wonder if you have got the spasms back because you are stressing about the blood? Our anxieties often start a chain reaction of tensing up... And I know the first place on my body that tenses up is my butt! Try to do some relaxation if you get the time. Slow breathing, chill out music... Even 15 mins of this is beneficial.

OMB x
fissure after hem banding and tag removal feb 11
Pelvic floor therapy
Diltiazem
Botox June 13
Nitro
Internal flap July 14
EUA and polyps removed Nov 14
Diagnosed with neuropathy Jan 15
Diagnosed with HS EDS type 3 (causes poor wound healing )
User avatar
owmybum
Moderator
 
Posts: 2826
Topics: 42
Joined: 16 Sep 2012, 16:00
Location: UK
Has thanked: 205 times
Been thanked: 154 times
Gender: Female
Mood: UGH !

Re: 11 months..and counting

Postby Canadabum » 29 Nov 2015, 16:00

Msimon and OMB...you two are amazing. Thank you.

I will call the surgeon and try to get some sort of consult or feedback...will let you know. In the meantime I booked an appointment with my GP...who knows, maybe he will be helpful?

Msimon...I am surprised that you only take 1.5 tsp of miralax a day and only 200mg of mag citrate (I assume in powder form and not capsule) and it is so effective. I take 2tsp a day and it helps keep things soft but no where near Dairy Queen consistency...lol.

OMB....I think you are wise for suggesting I take 15 mins to breathe each day...I think you may be spot on...the blood has really stressed me out and I certainly clench. In fact...now that I think about it a lot of my emotional reactions can be traced back to my butt. When I look over a ledge from a serious height I get tingling feeling in my butt...when many others feel this in their stomach or elsewhere. Hmmm.

Some minor pains today...no blood but am not out of the woods yet. Things don't feel great down there.

I'm off for a swim and some water related meditations on healing.

Hope all are well (as can be!!!!)

Canadabum
User avatar
Canadabum
Moderator
 
Posts: 607
Topics: 19
Joined: 12 Apr 2015, 21:01
Has thanked: 179 times
Been thanked: 123 times
Gender: Male

Re: 11 months..and counting

Postby msimon » 29 Nov 2015, 18:48

Did you miss the additional 300mg I take before bed? So 500mg magnesium citrate/day?

I do also have IBS and it doesn't take much for things to get me going ;)
Dec '13 Fissure from anoscope
3 X internal sphincter botox
'08-'15 Botox for pelvic floor dysfunction
Nov '14 LIS/sentinel tag removal
Feb '15 Deroofing of recurrent infection from LIS
summer '15-healed but still ongoing muscle dysfunction/pain
msimon
Moderator
 
Posts: 1343
Topics: 64
Joined: 08 Aug 2014, 19:38
Has thanked: 76 times
Been thanked: 154 times
Gender: Female

Re: 11 months..and counting

Postby Canadabum » 29 Nov 2015, 20:19

Totally missed that...thanks. The fog of the fissure!
User avatar
Canadabum
Moderator
 
Posts: 607
Topics: 19
Joined: 12 Apr 2015, 21:01
Has thanked: 179 times
Been thanked: 123 times
Gender: Male


  • Similar Topics
    Replies
    Views
    Last post

Return to Diaries



Who is online

Users browsing this forum: No registered users and 0 guests