Poo---who wants to talk about it???

Strongwoman

Okay now THAT should have grabbed some of your attention out there!
We all do it and MUST do it. How many are experiencing issues out there?  How many are confused as to when to use Senokot and when to use Restoralax?  How many have regular bouts of constipation (med induced or otherwise) versus diarrhea or uncontrollable leakage from the anal area? 
I can say yes to all the above and have experienced them all at one time or another including a GI bleed which is how I discovered I had cancer to begin with.
I am currently having a new issue which I will discuss with my nurse when she comes next week. My BM's are taking a long time to initiate (can sit there for 10 mins or longer before anything comes out. No I am not straining, just sitting and waiting patiently), they are formed, sticky and float. The colour when wiping is more yellowish.  I will mention I have had a bowel anastamose and my bowels are definitely much more sluggish than they used to be! I take Restoralax daily as well.  I have read that this new issue can be associated with both weight loss (which I am experiencing) and absorption issues.  Does anyone else have any insight on this and/or experiencing something similar?  
Let's talk gals about the thing we all do and that we all watch like a hawk for signs of change everyday all day long!

HoldingOn

Hello @Strongwoman, thanks for opening up the topic of poop, one that we’re all concerned about and, you’re right, so reluctant to talk about. Since my initial debulking surgery in 2018, I’ve had problems too. Either it’s diarrhea or constipation, and at times incontinence and I can’t claim that I’ve ever found a perfect solution. 

When you mention yellow stools that float, what comes to mind is liver/ bile duct function. The floating is because the bile hasn’t broken down the fats for your body to absorb. 

While Restoralax and sennacot seem to be the 2 most recommended laxatives, I’ve found that the lowly, out-of-favour stool softener docusate (Colace) is more effective and gentle. I take one 100 mg capsule at night if I haven’t had a bm for a few days or feel stool in my lower bowel that’s not moving. 

“Sticky” is a good word for it.  Like you, I had a portion of colon removed during the initial surgery, leaving permanent scar tissue, strictures and fistulas that interfere with smooth passing. Docusate is a surfactant; it coats everything to make it slippery and maybe that’s why it works for me. 

Ask your medical team if it is safe for you to try. I hope you find it helps, one little bit of relief in a long list of big serious problems, anyway. Hugs along the way

Strongwoman

@HoldingOn
  Thank you!  I will inquire about these meds my next visit.
  Thank you also for being open and talking about the subject at hand.
  I, too, have woken and had fecal incontinence. So embarrassing,  you feel terrible (or I did), all the while trying to figure it out. I am fairly certain I have a fistula or two as I have experienced the wiping and thinking "oh no Did I just see that from there?"  Then trying to figure out why and what it is. All very alarming and accepting what is becomes difficult.
  Yes, I did read liver and pancreas could be culprits and then determining what type of malabsorption is occurring is next (fat, carbs etc). So I can ensure I am getting what I need in my body and getting it to stay.  I will be bringing it up and asking for the corresponding bloodwork as well. 
  If you don't mind sharing, how long have you had issues with the fistula or found out about it?

HoldingOn

I really didn’t get a lot of detail about the ongoing problems caused by the bowel anastomosis. At the time I was so happy that the ostomy was reversed, I just accepted that I would likely have chronic gut/bowel problems like pain and constipation. That seemed minor compared to having to manage an ostomy for the rest of my life. Some people take it in their stride; I was horrified, had so many problems with it and honestly, don’t know what I would have done if I woke up after the surgery to be told it was irreversible.  

Strongwoman

@HoldingOn
  OMG!! That was my BIGGEST fear waking up from surgery. Finding out whether I had an ostomy or not, how I would mange it all and recover from surgery on top of that!
Thankfully I didn't require one and feel for anyone that had one post surgery. I would have felt exactly as you stated above if I did have one.
  I imagine I have scar tissue as well. I do know I have another tumour in the area pf the anastamose as well. That adds to everything for sure.

HoldingOn

I woke up post-surgery to the news that yes, the tumour was cancerous, I had an ostomy and had lost the use of my left leg when one of the surgeons accidentally nicked my femoral nerve.
Black days. 

Now my oncologist is telling me that any more chemo will likely do more harm than good and it’s time to transition to palliation and focus on quality rather than quantity of time. I wish I had the grace to accept this. 

My understanding is that one of the biggest problems at the stage you and I are in is tumour growth impeding and ultimately blocking the gut gut, so it could well be contributing to the constipation. Is this even manageable? Maybe a question we need to ask our health care teams. I’ll post you with any information they give me. 

Strongwoman

@HoldingOn Holy!  If an ostomy wasn't a hard enough pill to swallow!  Glad you are at the other end of things.
  Palliation....I have been at that end of things for a year now. It was very difficult to accept and process.  It took me several months and I am still processing.  As you know from my posts, I have been doing a lot of Legacy work to fill my time.  My boys will be 19 and 24 this year and it almost unfathomable to wrap my head around seeing them grow further with life long partners, children, homes etc.  Stuff this disease rips away from oneself.  So, I do my best to focus on things that I can leave for them that will be made from me to them specially. That is what keeps me going. Making things for those I love so dearly and doing whatever will make is easier for them to process and move on. That is me and the caregiver in me. It is also very important to me so that they will always know how much they meant to me. My palliative day program at Hospice has helped a lot.  It is a place I can voice things that I don't dare voice to family especially when a dark day creeps in. The group ebbs and flows and that is the reality of the group and will be forever morphing along with new faces. For me, it is sometimes hard not to get too close but then I accept that is me and it is okay as they were my season friends. I have learned a lot in group and I hope there is one in your area that you might reach out to. One person in group mentioned that before they actually connected with Hospice, they would pick up the phone to call and then decide to put it down.  This apparently went on for weeks until they finally decided to follow through.  Mine was a call full of tears and they were so kind with me and let me spill what I needed to at the time. In my home, I have one child who now knows a timeline for me, another who I won't tell yet due to anxiety issues and my hubby who I believe knows and won't discuss anything but yet plans for our future. It is tough at times and I do wonder how I get through days at all. All in all, I am making my way through it and know my hourglass sand is slowly making its way through. I cherish every relationship I have and do my best to take photos when I am out doing things with each person as one never knows.  
  I am aware that my time may come quickly and without warning due to a complication with bowel etc like you mentioned above.  I feel and notice changes with my body and speak only of them with my health care team. As long as I am reasonably functioning and participating my family doesn't need to know differently, it won't change the outcome.  I am loving coming up with new ideas for my loved ones. Tomorrow I am off to make a windchime from raw clay for my hubby. It will include all the things that are special to us specifically. It is exhausting work as I am using my creative brain and my physical self to create. I have already done one for my parents. I look sometimes at my bedside table and see all my meds for various reasons and think...wow, I never really took meds before this, who is this person?  
  I guess what I am trying to say is be kind to yourself, you will process, you will have good and bad days and I hope you find a way to leave some legacies behind for your beloveds. Memories, memories, memories is what you have to give and share.  And the most important one......don't forget to laugh!  It is good for the soul!  Whether it be dark humour about the state of oneself, comedic movies/tv or laughs with family and friends; it is healing for all.
  I have been informed that surgery for a blockage would only be performed if life threatening in my case. I have instructed them that if I am headed for organ failure they are to let me go. I, personally, don't want to go through it and I don't want my loved ones watching it either.  Those are my choices as well as I want to be in Hospice in the end. I want my family to be able to go and rest (if they can) or take a break and know that I am in good hands. All of those choices has taken time to process. The one thing facing me and I know I have to decide on, when to sign my DNR.  It is that last piece that hangs and will be an emotional day when I do it. 
  I will keep you posted with any updates re: bowel issues and complications as I learn them. I look forward to reading whatever you post as well. 
 Thank you again for being brave, honest and vulnerable knowing you have a safe space to do so with your health. It is always good to know we don't walk this journey alone and have others that walk either beside or very similar journeys as well.
  Have a good night and good day tomorrow.
Take care of yourself. 

Strongwoman

@HoldingOn
  I called into my Oncology office this morning as I had fecal incontinence last night. She asked me to come in and we did bloodwork.  All bloodwork is normal and not indicating any issues with pancreas or liver. We looked back at CT scans and nodules were noted on gall bladder previously. As we were both stumped, she has ordered an ultrasound in order to see if anything can be noted there. In the meantime, she will start me on a low dose pancreatic enzyme as she indicated there can be issues there with no evidence as of yet. As far as bowel issues, it will cause my demise and I am aware of that. There will be a point that I will not recover from one. I hope that is way off in the future.  I will let you know if there is anything of note upon ultrasound results.

HoldingOn

Dear @Strongwoman,
A heartfelt thank you for the kind support. This might not be the right place or time but I do want you to know that your consistent words of encouragement and care are appreciated by the community on this page. I read it in the responses: the relief of being heard and the care you take with your words. 

It sounds like your hospice group is the one place where you can just be yourself without editing. I’m glad you have that outlet for venting and discussion. Your immediate family - in both gender and age with your kids - can’t.  The thought and effort you’re putting in to create a treasure of gifts and memories will keep you with them as the cherished and loving woman you are. 

I have made inquiries about something like your support group here in the lower mainland of BC. Access is limited to the the municipality one lives in. Geographically I’m very close to one that has a such a group but I can’t attend because the funding is municipal. Same with hospice care and public health nurses. Choices are very limited despite all the nearby resources. 

I’m glad to know that your doctor is taking your bowel issues seriously.  You’re right: we’re elite members of a group that will likely die from constipation. Never thought of it that way. Bravo to you for making it a topic of discussion in the group. I don’t see anyone else commenting (yet) but it’s too important to ignore. 

And now I see that it’s 2 am and I need to be up for an early phone appointment. I’m straying into a topic that should be in general discussion so with the hope that the system will let me back there, good night (or maybe good morning). I will continue - soon. 

Rest, create, be with those who love you 

Strongwoman

Thankyou @HoldingOn
You are correct in that many don't talk about this issue despite it being an issue with our treatments.
My latest is that I have been switched from Restorolax and Senokot to Lactulose.  Thoughts are that I may need something stronger (Lactulose) to assist with the bowels.  Not sure if it is working but have not had any anal incontinence which I am happy about.
Regarding my BM being formed, float and yellow (with wiping too) along with serum creatinine drop, they feel that I am not absorbing nutrients from my food.  I also dropped weight.  I have been put on an digestive enzyme called  Creon to see if it helps.  BM have remained unchanged but abdominal discomfort after a meal is not as bad.  
CT scan this month so will be curious to see what is showing compared to previous.
Come on ladies, I know we aren't the only ones with this issue. Anyone else have any similar stories and their solutions?

mjmck21

I'm definitely interested in this conversation as I am experiencing some new symptoms but not sure what I have to add at this point. Will post more as I sort things out but currently on daily Restoralax, 400 Mg Calcium Bisglycinate with alternating constipation and loose stools. Some cramping and bloating with disease progression. 

Strongwoman

@mjmck21 You did share and thank you. This is such a difficult part of many of us gals day to day life. It affects us in many ways. I am unsure if the lactulose is working as effectively or not and feel I may have megacolon (not toxic) which is the culprit and plan on discussing that at my next Oncologist appt along with my CT results.  Whether it be loose stools, anal incontinence or constipation, it affects me physically as well as emotionally and mentally.