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.  

Sandi6

I’m just home from the emergency room! I’m soooo constipated I haven’t had a normal bowel movement since before my surgery on December 22! They did Xrays and discovered that my bowels are full right up to the top! Doctor said he’s never seen anyone so full! They did an enema which didn’t do much. I’m terrified! How am I going to get this blocked poop out????? I’m taking Restorolax every 4 hours, drinking water 💦 -more than I have been although it’s all I drink…all day long! Has anyone had any experience with this?

melissa

@Sandi6 oh my goodness you must be soo uncomfortable. I'm shocked they sent you home in this condition. While I haven't been in this situation I was prone to severe constipation during chemotherapy. Did the enema help at all? Did they send you home with only restorolax? For me, what always helped move things along quicker were glycerin suppositories one a day for bad constipation in combo with either ducolax or senekot . They should have you on a combination of laxatives not just one. You might need a stimulant laxative like ducolax. 

Sandi6

Thanks so much, Melissa. I’ll try some Ducolex. I was surprised that they didn’t do more for me. Doctor just said it’s going to be very painful 😓 

Strongwoman

@Sandi6 I would not advise taking that. If you are backed up what the senokot or ducolax will do is increase the bowel to try to move it along.  If it isn't coming out, it will be painful.  
  This is from experience I speak from.  Try warm hot water with lemon or teas. Jello, cup of soup, go back to the liquid part of the list I gave you.....it is so frustrating and uncomfortable......I would do this for a few days.  Freebies, Popsicles, Gatorade....anything clear for a few days. Walk around a bit and try to squat a couple of times or in a chair bring your knees up to the chest and down a few times may help.  Heat on the abdomen and back mainly on the left side where it usually gets stuck before coming out. Massaging gently on the left side both front and back of abdominal area...

Strongwoman

@Sandi6  So no action on the enema eh?  It may with a bit of time.
  I do wish this gets resolved for you soon. 

I also want to say, my post before came across pretty harsh in my mind and I apologize for it.  I think it's my fear of my last visit to the hospital and how I was traumatized by it.  I don't want to see anyone go through that themselves.  
Your choices are your choices and you do what you feel will work for you. Please keep us posted on how things work out for you.  I wish you the best.
Take care 💕

Sandi6

@Strongwoman please there’s no need to apologize. I really appreciate your honesty and I’ve been traumatized enough, so I appreciate your support. I had a bit of movement today which I’m grateful for. Following the ER doctors advise. I’m going to have to be patient. Thank you so much ☺️ 

Strongwoman

Thank you @Sandi6 for understanding.  I still should not have projected that on to you.  I do sincerely hope that you get some more movement and things resolve for you soon.  I will be thinking of you....

melissa

@Sandi6 thinking of you, hopefully your issue is resolving.

Strongwoman

@Sandi6  I have been thinking of you and wondering how you are doing?   I am doing okay on my diet/new way of eating.  Struggling emotionally sometimes as my day seems to be focused on ok.....what are my bowels doing? what can I eat today? do I need to have a smooth move tea? back to liquids?  BM? 
It seems all consuming some days and I would truly like to enjoy food again.  I keep telling myself, one day at a time and if this is what I need to do to be a candidate for possible surgery OR to change meds OR to feel good then go with it.  I think my low point this week was following my new way of eating and still struggling with BM's to the point that I was becoming a bit constipated. So took my tea in the morning and by the evening was going to the washroom which was ok but next day better.  
How are you doing with it?  It wears on oneself and totally understand if it is doing the same to you. Take care and update us when you can.  

Sandi6

@Strongwoman thanks so much for reaching out. I’m doing much better with my bowels, finally. The ER doctor had recommended that I take Restorolax every 4 hours, which I’ve been doing. Then I learned that I also need to take Senekot to get my bowels moving, since the Restorolax just brings water to the bowels. This week has been better, and today I’m very happy to have had 3 good BM’s. 

I hear what you’re saying, it sure does take over my life. I’m trying to find joy in every day, but it’s difficult when I’m not feeling well. I’m working on a course to learn how to create a podcast about my experience with ovarian cancer, hoping to help and support others going through this.

i start chemotherapy on Monday, February 5, 2024, and I really don’t know what to expect. They said I will be there all day, and have to bring my own food for the day.

I would love to hear from anyone who has been through chemotherapy. I am open to all advice. 

Thank you all so much. 😘 

Strongwoman

@Sandi6 I am so very thankful that your bowels are moving for you.  Do you have to keep up the Restoralax daily in order to keep them moving and the Senokot?  Yes, I have written before about the difference between the two and the Restoralax puts the water into or pulls the water into the bowels and the Senokot is what moves it through the bowels.  It is something very important to know esp when dealing with obstructions.  Again, so very thankful you are on the other side of it!
Interesting.....about the podcast....definitely send me the link once you get going. 
Okay for chemotherapy, I will tell you about my experience and others can chime in with theirs.....
I started at the large hospital (Juravinski) and I was there from 8am until 4pm.  One thing I am going to stress, you go to the bathroom a LOT!  I had an accident the first day because I waited too long and would encourage anyone to bring extra just in case it happens to them.  Okay...back on track now.  I was met with a nurse who took me to a large room and got me settled in a chair.  She then explained to me what was going to happen and how.  I was given some pre-meds and then they started the infusion.  While it was going a nutritionist or pharmacist came over to speak with me (the nurse was close by).  As we were talking, this wave of intense heat started coming over me and I started feeling quite ill.  As I didn't want to interrupt the person speaking, I was attempting to make eye contact with the nurse.  She did and immediately asked me what was wrong...I told her and they shut it all down immediately.  I was having a reaction to it.  So, they give you some stuff to flush it out, rest period and then they do what is called re-challenging it at a slower infusion rate to begin with to see if you can tolerate it.  I was probably given more Benadryl etc too but don't recall rn without referring to my notes.  They stayed with me and the infusion started going well. I had trouble getting up out of the chair due to my surgery and why I had an accident the first day.  Then once that infusion is done, they flush and then give the next med, flush and then you are allowed to go home.  I had an hour drive home from the big hospital so my day literally started at 7am and I got home at 5pm.  I was STARVING when I got home.  I couldn't eat enough food.  It was the result of all the steroids they give you.  The next day, I didn't feel so hot and day after that.  The next time I had a chemo session, I was at the local hospital and my day there would start at 8am and I usually finished between 3-4pm.  This is due to them having to slow down the infusion based on my tolerance level of it.  My 2nd chemo and days following was the worst I ever felt on chemo.  After that, the Oncologist and I figured out some post meds from chemo for a couple of days and those feelings went away. So, that was my experience.  The BIG hospital only provided drinks. The little hospital provided a lunch but I usually brought my own light food.  Some don't feel great during treatment and so think lighter and smaller foods the day of.  I did usually fruit, yogurt, water, cheese....things like that.  I think I ate one lunch in my 5 treatments at the little hospital.  I would go in very euphoric and up due to the steroids I took the night before in prep for treatment and would come home very serene and tired.  I do recall napping a lot for a few days after treatment. 
Hope that helps and ask away anything. The ladies that have treatments more often may have more to share......
As for me, taking it one day at a time and getting there. Going to call the nutritionist today and maybe speak to her or will on Monday.  I think I need to add the Restoralax to my daily regime and see if that changes anything.

Sandi6

@Strongwoman you are so amazing! Thank you so much for sharing all of this with me, and our group. I’m grateful to hear about your experience, hoping to feel a bit more prepared for Monday. I’m not eating much these days as it is, and have almost no appetite, so it’s going to be interesting to see how I feel with the steroids, and then the chemotherapy. 

I’ve gone through all of the discussions on here, and taken pages of notes of ideas and experiences other women have had. I feel that the more knowledgeable I am, the better this experience will be. There’s certainly a lot to take in, and this group is wonderful.

Thank you so much! I hope the Restorolax helps you. I’m continually taking a dose every 4 hours or so, and I’m finding that 3 doses of both Restorolax and Senekot every day is helping me maintain regular bowel movements. I’m feeling much, much better! I’m even having friends over tonight, and meeting a few other friends for brunch tomorrow. I want to take advantage of feeling well, as I don’t know how I’ll feel throughout chemotherapy.

take care 😘 

Strongwoman

OMG @Sandi6  it did help!  Finally late this afternoon I was able to have a BM.  It was not easy by any stretch of the imagination and glad it's done.  I, too, started taking the Restoralax every 4 hrs and my Smooth Move Tea. I know that had I not stuck to my diet and reverted back to liquids when I did, I would have been in a very bad spot again.
  I am so happy to hear you have been able to make plans and can enjoy.  Have a great time.
 I feel you will be very prepared for Monday. 🤗

Sandi6

Oh @Strongwoman I’m so happy to hear that! It’s such a relief isn’t it! Wonderful news 😘 

Strongwoman

Almost to the point that you want to sing the little jingle that goes with  "oh, what a relief it is".
Yes, the things we take for granted including our own bodies and how they process food from start to finish.
Let us know how Monday goes and the days after when you are up to it.  

Keepcalmandbreath

Hello ladies - just wanted to share this document in regards to a bowel routine for preventing a constipation. I hope it helps.

Strongwoman

Thank you @Keepcalmandbreath for that.  I will say this to add to it. 
There is no mention of using Restoralax which like Lactulose pulls via osmosis the water into the bowels to soften the stools. The Restoralax is found in most pharmacies and grocery stores.  Lactulose is usually prescribed by a physician.  
I would also recommend discussing a bowel routine with your team before beginning one and figuring out what is "right" for you.  
Senokot looks like it is both in pill and liquid form, although I am not familiar myself with the liquid. There is also a tea called Smooth Move Tea by Traditional Medicines which has senna (active ingredient in Senokot) and some other nice tasting things like (cinnamon bark, licorice, orange) which is a nice tasting tea as well.  For me, I have found that the tea I can take in the morning after eating or after my lunch with no cramping. When I took it at night, I found I had cramping.  I am finding that taking a Senokot at night is easy on me as well and produces no cramping.  
For very a simplified version of the info:
Restoralax/Lacutulose---puts/pulls the water into the bowels to create softer stools
Senokot/Smooth Move Tea----moves/pushes or activates more bowel movement to push the stool through
Hope this helps someone. 

HorseGirl

@Sandi6 I’d like to share my experience with chemotherapy.  I had six rounds of chemo every 21 days that began 1 month after my debulking surgery on August 2/23.  Due to the meds prescribed, I experienced no nausea/vomiting. The day before, they did bloodwork and discussed the results with me (platelets, WBC count, magnesium, etc.).  Before I started chemo, I had my hair cut short.  Approximately 2 weeks after my first chemotherapy treatment, my hair started falling out, so I had my head shaved.  Chemo took all day (Day 1).  On Day 2 I was still flying high from the dexamethasone so I could function alright.  By Day 3, I started crashing by becoming unsteady and weak. Zits!  I got chemo acne, and my face broke out in these nasty whiteheads! Ugh!  Days 4-7 were rough.  I was so weak that I basically stayed in bed or in my recliner.  If I went outside I actually used a walker to stay steady.  I had zero interest in reading or television.  I could barely make myself a snack! Just getting a shower, and getting dressed(back into fresh pyjamas) was a monumental task that left me breathless!  Sometimes my heart was pounding hard from a short walk!  I took my temperature and checked my BP, pulse and oxygen levels 3x daily.  By day 7 I started to improve, and was feeling better by day 10.  As soon as I felt better, I was on the move!  I would get pretty light-headed from walking, but I could drive, and drive I did!  It felt NORMAL to drive around the countryside.  Once I had an idea of what to expect, I would plan activities accordingly.  Usually the week prior to the next chemo was the feel best time for me.After rounds 5 and 6, I did not bounce back in my usual way.  I was finished treatment on December 13th, but instead of feeling elated I felt scared about my upcoming CT.  What if nothing worked? I started to have some PTSD.  I felt utterly exhausted, weak, and was becoming super crusty about it all.  Since a large tumour was found at the end of June, plus debulking in August, it had been months of treatment, and I was grumpy and tired of being tired. But now…I’m feeling pretty good and am planning to get back on a horse soon.  I have a big stretchy belly band that helps support my core (surgery left me with a handful of small hernias) and I can actually do stuff now. I am very grateful for that! 

I keep easy snacks in my fridge…individual servings are recommended.  Activia yogurt, unsweetened applesauce, KozyShack rice puddings or tapioca.  Bananas!  Water, water, water…drink lots.  It helps flush the chemo and is helpful for your kidney function. Magnesium levels will drop, so ask your doctor about a supplement. Have pre-made easy meals ready in advance.  You may not feel like cooking. Farm out the housework, or do it 2-3 days before your next treatment.  

HorseGirl

Pooping! @Sandi6 I definitely was constipated by chemotherapy, so I started on Restoralax the day before chemo, and took it every single day for 8-10 days.  Then started to wean off by taking every other day, until I didn’t take it at all.  I’m on immunotherapy (Avastin), so I take Restoralax for a few days after that.