Just Hello

**Clarifier**--I wrote my story. It is long.  Like, I never write this much.  But, maybe it can help someone else here??

 

Hello everyone (who remembers me.)  

I think of you all daily, even the ''newbies'', who I don't know.  Part of me feels as though I should be here regularly, to support those new folks going  through treatment, but the other part of me cannot.  That is, I cannot be a regular presence of support.  I burned out some years ago. That said, I still send prayers up for ''everyone on Blog for a Cure'', on a regular basis.

  I have been controlled by my gut--side effects from cancer treatment if you will, for the past several years.  There are times I wanted to share it with you guys, but didn't, because I am cancer-free while others are in the battle; again. One of these days I will go into detail of my symptoms and the tests/treatment I have undergone in the past year, that helped me, finally, to not live in daily, minute-to-minute fear, of ''an accident.''  I ain't referring to #1, either.

  Fortunately, I have a GI doctor (at the VA no less, so anyone who hears bad things about the VA, please shelve it.  Not true.) Dr. Gavin, who has been wonderful.   Dr. Gavin, and another doctor there, a ''young" man earning his Fellowship in GI, said, after my last colonoscopy (and endo, 'cuase I have really bad reflux  and had GI bleeding last year), which showed strictures, said, ''let's help you.''  ...... TEARS welled up in my eyes!  I had read the report online, before my appt., and thought, 'anal strictures. WhatEVER..deal it it.''   I went to my appointment (follow up)only to tell them to, please removed the comment in previous notes that I was ''non-compliant with'' my Omeprazole.  Quite the contrary!  Without it, I am in agony (had it before CA.. IBS, etc.)  So, joy of joys to have doctors actually want to help me!  (another medical person at the VA, in GI, an NP, that I had had twice previously and was not going to go back because he is in idiot, umm, yeah.  I'm an LPN and smarter.  I think.  I didn't have to see him.  Hallelujah!)

  So, I guess I'll just tell my story.  A hyperactive gut. Regular stool accidents at work--like, monthly.  HORRIBLE!  I kept (and keep) loperamide with me at all times.  Sometimes, though, one "blip" of the gut, and I did not have time to get to a bathroom.  Often, I had no warning nor any SENSATION of having stooled--until I felt the moisture.  This, people, is no way to live. None. Zilch.  I have tried to watch "trigger" foods for years.  I just had no control.  Consequently, I had/have stopped participating in ANY group-type activities.  No long walks (hardly walking period, except for at work; which is a fair amount.)

  I averaged 4-6 stools a day. Some days, as many as ten.  Then, I would feel like I wasn't empty. So, strained, though wanting not to because that affects the bladder control...  Also, anal pain, from all of it.  THANK GOD for TUCKS! (and ibuprofen)

  Back to the past year 2018 to present:  Because I had a long history of IBS, reflux, Giardia (in 2003/2004), and the new dx of anal strictures, these docs wanted to help me.  Apparently, there is research out there (I might have looked up something, but no intense research because, again, after work, I don't open my computer at home. I am going to change that practice. I'd be much more productive) that correlates a hx of giardia with long-term gut troubles---I can't remember the exact facts (I need to read Helen's article on Chemo brain. Honestly, there must be something to it, the LT effects.)  So, last summer, went through a 'Lactulose breath test"-- which frightened me.  Lactulose is given to patients in the hospital, often, to make 'em poop.  One reason is to lower critical Ammonia levels in alcoholics who have Encephalopathy.  Because I was already susceptible to ''accidents'', and I drive 1.5 hours to the clinic, this terrified me.  However, when I arrived, the NP (a different one) assured me that the lactulose is diluted.  Anyway, in the test, you follow a special diet ahead of time, then go to the clinic/hospital.  Over a period of 2-3 hours (thereabouts), every 15 minutes or so, you drink a bit of the lactulose then... well, ya have to wait different intervals: 15, 20, 30, etc., time after ingestion.  It wasn't bad at all.  So, this test measures two different gases in the gut, checking for over-production (OH!  THAT is the tie to giardia!..FYI! )   

  The test results take several days.  One of the gases, in my case, measured moderately high to high.  The preferred method of treatment to regulate it is the antibiotic, RIFAXIMIN.  However, because that med has to have a special authorization, FLAGYL is given first.   I got sick with the Flagyl. Like, really sick. Even though I have taken it in the past w/o any problems.  So, a 10-day course, I paused for 2-3 days, then resumed, because I was desperate for a resolution to my life being controlled by POOP!  The Flagyl may have helped a little, but not much.  Fortunately, the Rifaximin tablets were authorized.  1 tablet 3x/day for 14 days.  I tell you what!  I felt better after that medication, than I had in a long time!  My BLOATING really has gone away.  Pretty much anyway.

  In addition, in trying to correct the anal strictures, which could contribute to my troubles, I was sent to a surgical center (outside of VA), who canceled my appointments THREE TIMES!  I forgive them now, because the NP I was supposed to see, I found out later, was pregnant (probably had some complications) and ended up going on maternity leave early, so I saw a physician.  Like, two months ago.  So, my initial referral was submitted in JULY 2018. Cancel, cancel, cancel... (then, they had the nerve to tell the VA that, ''She --moi--keeps cancelling.  We will agree to ONE MORE appt. slot.  That is it.''......Really?  I called the clinic and fixed that error. 

 I saw the surgeon in FEB 2019.  I liked her.  After getting some history from me and reading notes from my tests at the VA, her offer was to start with a temporary stimulator, which would go in my low back area.  If the temporary stimulator is tolerated, a permanent stimulator is surgically placed. The stimulator, originally,  was invented for people with urinary incontinence, but has shown to have some positive effects for those with GI problems, Crohn's, Colitis, IBS, as well.  Well, I have had multiple back and hip injuries over the years.  One REALLY BAD injury occurred in 2000. Injury to left hip, back (entire spine) up into my neck.  I already had a lot of problems with my neck from car accidents in the 1990's (hit a tree head-on driving home from noc shift. Two blocks from home)  Consequently, I have worked REALLY HARD to keep my NERVES at bay, since that accident.  It took my MANY, MANY years to get over really severe pain and always, feeling as though my sacral-lumbar area was ''plugged into a light socket.'' (mind you, I am proud to say I missed only one day of work after that accident, and it is because I could not move.  Literally.)  So, no, this stimulator to help me not poop on myself and to live in daily fear of such, was not an option for me.  HOWEVER, in the course of her interview with me, the doctor sort of mumbled, ''Maybe you should take lomotil/loperamide more often.''  .....!.....  WHAT?  I never thought of this because, as you anal cancer people know, controlling constipation and diarrhea is a fine art!  I took loperamide ONLY when scared to death loose BMs were imminent.  I was too afraid of the PAIN, if I became constipated.  Can't have that.  Passing out from pain is not an option. I still get regular anal pain, though not as frequently (like, constantly, as in the past. Still, often enough.)   

  Since that appointment, I take loperamide ONCE A WEEK.  Usually, two tablets, though I took only 1 tab, one week.  I think the two tabs is better, because a week ago or so, -- I was running to the bathroom a lot, at work.  Can't have that.  I feel, for the first time in eight years, that I am more in control of my body.  I don't feel  as though I want to cry all of the time, and go live in the wilderness so I won't get embarrassed; again.   I wrote to Dr. Gavin and let him know, and to thank he and the other doc, and their team.  He wrote back and said loperamide is a safe medication to take, long-term.  BONUS! ... I need to write to the surgeon and let her know.  My referral is still active.  I had told them to  not cancel it, at my appt., so I could ''think about it''--the stimulator.  I told Dr. Gavin, however, that I ''cannot fathom, with all I've dealt with in past, with my overly-active nerves, to volunatarily stimulate them.''  Nein!   Oh!  What a great feeling!  I am not perfect, but better. :).............If anyone is still reading.   Moral of story:  keep your doctor appointments, even if you are a nurse and can read the results online. ;0

xoxo,

Carol P.

  

 

Thomas sent you a prayer.
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Wow! You’ve been through a lot for sure.
Yeah, but I bounce back (though the bouncing has gotten OLD!😉)... And,as we know, I am blessed to be where I'm at; albeit whiny at times. 🙏💪😁
I was told about the stimulator also. I haven’t been healed enough to try it. But I didn’t think it sounded like a great idea to begin with! Thanks for the share. I get horrible pain in the sacral area. I don’t want to have more pain.
Carol likes this comment
I realize that my reply is SO very late. Nevertheless, Allseitz, I recommend, once you have healed enough, to keep Loperamide on hand and to take it 2-3× per month, to try it. I haven't yet read your profile, so don't know how far out you are?? Three months has passed since my blog, but healing after chemo rad takes quite a while (for BMs to not hurt like hell.) Tread cautiously. Give me some details on where you're at. Maybe I can help. Blessings and prayers!!
Carol P.
Allseitz likes this comment
My two year is coming up on September 13th.
I don't have pain but I sure have poop accidents
Lori,
Try Loperamide prophylactically! 1-2 tabs every week-- or, every-other-week I recommend weekly though, because the couple times I didn't recently, I paid for it!! Dammit!
Lori likes this comment
Hugs!!
Lori likes this comment
Hi Carol - Thanks for posting. Good to hear from you.
Carol likes this comment
JANA!!!!! My "cancer sister"!! I think of you often! How are you?? So good to hear from you too. (I'm "veclempt!"😍) BIG cyber HUG!!
Carol, after all you've been dealing with I'm so glad you have finally found the thing that is helping you! This is great news and I'm glad you shared it all. My bowels are all over the place. If I went to the doctor every time they act up, I would be there one week for diarrhea and the next week for constipation. I hope that you continue to have good results with the medication. Big hugs to you, my friend!
Carol likes this comment
Martha,
Yeppers!! "All over the place" sums it up.
I hope you don't think I went to the doctor frequently? No. More times thi past 16 months, to get those tests in, and follow up. I was so depressed all of the time and nervous!! Here, Martha, YOU have been one of my shining lights, with your zeal and running after cancer tx!! Thank you!! You have been a part of my list of folks who inspire me to keep trying. How is your mom by-the-way??
Hugs!!
Carol
Smurf likes this comment
Hi Carol! Awwwww, you are so very sweet! Thank you so much for your sweet comments! As for my mom, thank you for asking. She continues to go downhill regarding her memory, sleeps a lot of the time, and doesn't get around very well anymore, but she's still hanging in there.

Now, about you! I hope you are still doing well and the job is going well too. I have often thought about you, hoping that things are greatly improved. I'm telling you, this post-treatment stuff can be challenging! I was recently on a nearly 4000-mile road trip and my #1 concern was, yup, how my bowels would act. Fortunately, I had no problems, taking care to avoid trigger foods. I think we all learn as we go!

Take good care, my friend, and I wish you all the very best. Please check in once in awhile and let us know how you are. Hugs!
Hi Carol, I've thought about you and wondered how you were doing. I can so relate because I am having the same issues as you. I can't go two weeks without an accident. I've just been lucky 90% of the time they happen in the morning as I'm getting ready for work, but even that 10% of the time has been rough. It's happened when I'm walking, shopping, at work, etc. Like you, no warning, and then you realize it happened.
I hope things get better for you and thank you for the information on the stimulator. I'd never heard of that.
Carol likes this comment
Mari,
I think about you too. I read updates I get, but am bad about logging in.
Mari, try taking Loperamide once a week whether you feel you need it or not. Before that surgeon mumbled it, during my appointment (because I was averaging 5-6 bms a day, ALL shapes, sizes, and volumes (TMI... I know!!) My fear of pain if I got constipated, since my inital surgery (for the anal fissure) , then the whole cancer thing.... Yeah. Never considered taking it except for acute emergencies. It has made a difference--except if I think I can "skate", miss a week...BAD accident 4 days ago, AT WORK!!
Also, Mari, if you don't have a lot of low back/back/hip/sacral pain,especially, hyperactive nerve activity back there, you can look into the stimulator. I will try to find the exact procedure and post it for you.. Try loperamide first though, chickadee. Hugs!
Good to hear from you. ❤🙏
Carol
So glad u posted. Although we survived treatment, living with long term effects is very tough. We are all at different stages of healing so your post is very helpful to me knowing what to expect long term can make all the difference in my journey. U have been through so much so I am happy u have some relief.
Carol likes this comment
Inshock,
Haha!! What an appropriate User name!!
Thank you. Yes,everyone's experiences certainly can be helpful!! Trial and error , good friends who have gone through what you are going through, and good doctors, who actually give a shit about your quality of life!! (Sorry for cussing, but some medical Providers aggravate me and ...VEX me!)
Keep the faith, take one day, one MOMENT, at a time, and you will persevere.
Hugs & prayers, and thank you for your comment.🙏💪🌈
Happy birthday week!
Carol likes this comment
Thank you, Lori!!
Happy birthday Carol!
Carol likes this comment
Thank you, Lucky!!
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Vital Info

Posts

February 24, 2011

Sierra Vista, Arizona

July 20, 1962

Cancer Info

Anal Cancer

squamous cell carcinoma of the anus

February 23, 2011

Stage 2

2.1 - 3.0 cm

Negative

Negative

No

No

Difficulty going to the bathroom; telling my kids. Worrying about how to pay for tx. Seeing all the young people here. Chronic stool incontinence..which keeps me from participating in certain exercises and, definately, avoiding group outings.

REALLY be a support for others/fight for my kids

Prayer, listen, feedback.

Orange Juice! (I craved it); steak; homemade vanilla pudding.

Patience, an ear, chocolate . . .

Western Washington Oncology 2011-2012. Switched to VA in 2013, to save $$.

If you have a choice, get a port. Exercise through treatment, if possible. It helps.

Take every day head on. Prayer, whatever, too.

May 19, 2011

October, 2011

No, as of 09/24/2017. However, a sigmoid polyp--1st one, was discovered and removed 06/2015.

Chronological order: Blood-tinged drainage for months, then heavy bleeding with BMs-which I "hoped", for months, would go away. A hard skin tag, change in stool appearance, increased difficulty defecating. PAIN!

I give to various charities: St. Jude's Children's Hospital and Ronald McDonald house,cancer charities; multiple fund-raisers. I am too tired and lazy to organize a fund-raiser. Mostly, my emotions are shot. Gone. Just...gone.

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