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Ovarian cancer and bowl obstruction
I am 3 years after diagnosis of HG serous 3C, with 1 recurrence March 2022 and second Taxol/Carbo series finished in July 2022.
At present the 5 nodules seen on my last CT scan are stable, although I do get mid back, upper sides pain almost everyday. I had a second opinion at PMH few days ago and was told to watch out for bowl obstruction. Doctor recommended a low fibre diet which I have a hard time getting my mind around. Just doesn’t seem very healthy. The printout I was given recommends Sennekot and Restorlax. So my questions,
Is bowl obstruction the norm for ovarian cancer ? Is it a real threat ? I am getting anxious. Should I drink Restorlax daily ?
Your comments and ideas will be much appreciated.
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@Bojenka
I have been dealing with this since last year and like you have tumours that cause this. I have had multiple occasions where I have experienced both ileus and partial bowel obstructions. I find the Senokot causes too much motility which causes pain for myself. Thing to remember is Restoralax puts moisture in and Senokot moves it through. My diet is low in Fibre. I have plans in place and medications now to help me through both after being hospitalized a few times. Make sure you address it right away should you think you are experiencing it.
For me, the pain is sudden and nothing controls it which is my first warning that I am having one. I am unable to eat or drink anything either. I take Restoralax daily with Veggie Greens to help prevent and also due to the pain meds I am on.
I hope some of this helps. If you have any other questions, I will do my best to answer them.0 -
Thank you @Strongwoman for replying and sharing. It’s very helpful.
I am trying to figure out how much Senokot I can take, observing the patterns in my body.
Last couple of weeks I had constipation and diarrhea sometimes same day. I had a couple of occasions of vomiting and terrible abdominal pain after eating a salad. It’s a roller coaster, considering my disease is stable according to the oncologist.
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Yes, it is hard to navigate for sure. I usually have one meal a day and snack the rest of the day. Mornings for me is usually my veggie greens (powder) with Restoralax and my oral meds. If I am not having lunch with a friend, I stick to dinner as my meal. Some days I eat regular amounts and other days not much at all. Right now we are investigating pain I am having along the left flank area that is pretty debilitating. I have had bloodwork and kidney function is same and not declining so that is good. Gave urine sample last week and no results that I am aware of. I have an ultrasound scheduled for Wed and hoping it gives us answers of some sort.The Senokot is definitely something you have to play around with. I know some ladies on this forum take it daily and it works for them. For me, at this time, it doesn't. Restoralax seems to be it for me.The bowel obstructions can occur as a result of surgical adhesions and/or tumour sites pushing on the bowel. From my reading, partial obstructions can usually be managed and recovered from. Full is another story and depends on your individual case as to what they would recommend.I wish you the best as you navigate through this but know you are not walking it alone.0
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Hi @Bojenka Sorry you're back with us for the reason you are. But always good to hear from you regardless.
From my observations over the past six years of treatment, bowel obstruction does seem to be a primary issue for us. So far I've been lucky but I watch like a hawk for symptoms and stick with my Senekot regimen religiously. Many get their issues cleared with medication though; surgery not necessarily being needed all the time which is always good to hear.
I did see a nutritonist way back when and she confirmed the lower the fibre diet the better we can process food through our systems. But I agree with you; not the most desirable list of foods so she helped me compromise and go to a mix of low and medium fibre and that seems to suit me well. If you haven't I'd suggest you book an appointment with a nutritonist to do a proper assessment of your needs. Most cancer centres have one and I'm sure your care team can facilitate the referral.
As for Senekot it took some time to establish my own patterns and it does change a bit from time to time but I seem to function well on 2 tabs every night. When in treatment the night of I do 3 and usually the night after as well and then when things are normalizing go back my 2. What I did find out when in hospital is that you can take much more if needed ir take Senekot and Restorolax concurrently if things feel really blocked. Chewing gum helps stimulate the bowel too. I can say that the very occasional time I've been constitipated for more than 3 days I've upped my Senekot to as much as 4 pills before bed and it hasn't hurt me but did get some action going next day.
You're definitely wise monitoring your own bodily rythmns and I do suggest you ensure you check in with your care team until you get a program settled for yourself. As for feeling anxious about an episode, i Have noticed the doctors and nurses seem more fixated on warning us to be aware than we get blockages. I expect that's because a block that goes untreated can cause preforation which can be a far more serious issue to contend with.
Good luck gal. i"m sure you'll be just fine. And if you do experience anything that is cause for concern, call your care team and see if you need to be assessed in emerg.
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I thought I would repost this here in case someone was looking for a thread on this topic.
Well @GloHo you do have quite the questions that I will be happy to field the best that I can.
So to answer your first question:
Is there anything you could share with us that would be helpful to know if we have not yet experienced an obstruction? Yes, they are painful. Some can come on suddenly and some are a gradual that reach a crescendo that one can't ignore. They are more common than we think especially due to the surgeries that we end up having due to our Ovarian Cancer. Sometimes it is scar tissue that causes them and other times, it is tumour growth that starts to impede the function of our organs by pressing on them that does it. It is different for everyone. I, unfortunately, have many that impede a lot. I have one in particular that has affected my kidneys for a long time and now my right kidney remains at severe hydroureternephrosis but my left one has changed from mild (months ago) to now being moderate on my latest CT scan. This means that at some point, my kidneys could fail me. I was offered intervention a long time ago but am thankful I have not as I did not want to live with 2 tubes emerging from my back and bags to empty both ureters on a daily basis. I have tumours along my small intestine which sometimes get irritated for whatever reason and causes me to have the ileus (partial obstructions). I have ones along my descending colon and throughout my peritoneal cavity as well which all have an impact on the organs inside. So, long and short, this is possibility for many that have had surgery. I truly wish they had educated us more on diet etc from the onset of recovery from surgery.
Are bowel obstructions different for everyone or are the warning signs similar for everyone? They are typicaly the same for everyone. I would say it usually starts with a sense of fullness or bloating that does not go away. This seems to get worse and one doesn't feel like eating. Sometimes I have been hungry and did eat but have grown to know now to not when I feel like that. There is extreme pain in the abdominal cavity and I can feel the intestines moving trying to move things through. It often feels like spasms but very painful. If this does not pass what usually ends up happening is that one will vomit to rid the body of anything in the stomach. Often there is no flatulence or bowel movements when someone has an obstruction. One becomes very weak and I have to call my nursing team either before I feel I will be sick or after to administer medication and help get me through it. They do this with my SRK kit I have at home that the Palliative Doctor ordered. In it, they have the ability to administer drugs intramuscular with a little port that I usually get them to put in my legs. One leg is one drug and the other leg is the other. I sleep a lot and take tiny sips of water initially as that is all I can do when I am experiencing an obstruction. If the obstruction is a complete one, meaning it is being strangulated it two spots, one can go to the hospital and they will do a CT scan then probably instruct that a NG tube be used or if someone decides not to, there are measures they can do to keep one comfortable until you pass away. Not something anyone wants to think about but it is the truth of the matter.
Are there usually warning signs or can it occur without warning? Yes sometimes (as above) there can be warning signs. Other times, mine can come on suddenly and I gradually feel worse and worse and know it is coming. I think I covered most of this in the question above.
Questions to ask? Do you mean to your team or what do you mean by this? If you explain a little more, I would be happy to answer.
Medications that help? Most of my meds are in my SRK kit which is something a Palliative doctor orders to have in your home. One can always discuss this with their Oncologist, Family doc etc to see if this is something that applies to you or not. In my oral meds, I have Dexamethasone and now a stomach coater one to take with it. I also have my break through pain meds that are short acting that I can take. All of that depends on whether I can ingest and keep down medication and any bit of fluid. I have both an oral and sublingual Odansetron to help with the nausea portion that goes with an obstruction. Again, all ordered by my Palliative doctor so that I am prepared when something like this occurs.
Diet restrictions - should the low residue diet be started immediately or would modifications to diet suffice? I think this is an individual thing and something to be discussed with your surgeon or team at the time. If I had known when I was starting to have these that there was a way I could have monitored my diet earlier, I would have appreciated it. I knew to go to a clear fluid diet after having one but nothing beyond that was explained to me until I had that hospitalization and NG tube earlier this year. If this is something that is known to affect oneself, I would say to start or be aware of the Low Residue Diet (which I have posted before) and follow it as you see it fits your situation. I was told by the nutritionist that one will phase in and out of the 3 phases and for some that they can eventually go back to a regular diet. I know now that I won't be able to do that. I really miss my fresh fruit and veggies. I miss having wraps and salads, eating nuts and popcorn and many other things like whole wheat bread and grained breads. It is what it is to keep me upright and this side of the grass so I deal with it. But I can tell you, normal food smells amazing. I am thankful that I can appreciate the aroma of that food but not feel like I am missing out so much or turned off by it. One thing I can say that I have noticed is my sense of smell has been heightened and will often tell my family they have to remove their plate once done eating or sometimes not be in the same room as them when they eat depending on the aroma.
I hope this helps some or many of you and these are my experiences due to the frequency I have been experiencing them. Everyone can present a little differently. If anyone has anything to add, please do so.
Thanks again for asking such valuable questions that may help someone and possibly prevent some of what I have gone through.
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Thank you @Strongwoman for the information. I found that in my case, i am not getting a lot of guidance from the hospital staff on the diet i have to follow, couldn’t see a dietician as of yet, so i have to search it for myself and all the information I find on this site helps a lot.
I did find a good document on “Low-fibre Diet for Vegetarians and Vegans” for patients with cancer who have been told to follow a low fibre diet, from Sunnybrook Odette Cancer Centre. I am a vegan so my low fibre diet makes it challenging to get enough protein. I did find a vegan protein powder made principally of pea proteins, no soy. I take it with rice milk, warm or cold and it tastes good. The brand is Botanica perfect protein, organic, vanilla. It has 3g of fibre per scoop (39g), I use 1/2 a scoop only which gives me 10g of protein.
I’ve only had 2 episodes of bowel obstruction so far, and the reason for me is a mixe of adhesions, cancer progression and the radiation i had in April (maybe). The CT scan couldn’t tell for sure what was the cause. I was doing so well prior to that, it is a hard pill to swallow.
Again, reading and sharing with the ladies on this site really helps. I guess i am not good with the unknown, I like to be in the know. Not knowing when it will happen again makes me feel trapped, like i think twice about doing things i enjoy “in case”. I would love to go canoeing, but what if? Should I drive 25kms to go to a farmer’s market? Do i have enough energy? Then I take a deep breath and remember to live in the now, and appreciate what I have….
♥️
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Yes it does take time. Time and patience. Not knowing is so hard to sit in. I do things as I feel I can and sometimes even when I don't feel up to doing them, @Sylviequebecbc the hardest part is not knowing when one will hit. I figure that in the time it takes to call the team and I get home from wherever it will all work out in the end. Currently I sit with 2 ports in as a preventative and I am headed to my parents this week coming so it will give me peace of mind knowing I am ok should something happen. When I get back we are going to switch me over to the oral meds and see how I do with that. I am hoping good as I would like my body back again. Forever grateful that they have come up with something to help me along the way. Like tomorrow I go see a play and I know I will be ok because I have the ports in and the meds will be administered accordingly too.
So, do your best to live your life the best you can and see what happens. You now know your team is a phone call away as opposed to hospital instead. That must give you tremendous peace of mind. I know it does for me knowing I don't have to go to the ER and wait etc. This way the team comes to you and all is good.
Hope you are doing well. Take care my friend.
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Thanks @Strongwoman I try to live one day at a time! So far so good, I am doing all I can to enjoy my life. I did go on a short holiday with my husband to visit our daughter in Bowen Island, we had a nice time. My meds follow me wherever I go! My diet is limited, but I try not to dwell on it. I even went on a one night canoe camping with friends close to home, it was so nice! Tired today though, resting day.
My new oncologist is trying to get me In an experimental treatment called onco-genetic, she said I should qualify. It would happen in Vancouver, I am waiting to hear when I will have a biopsy to see if I would benefit from this. I am hopeful!
The longer a go without an episode of bowel obstruction, the more confident i get to try and do different things, but like you said, it is always on my mind how it can happen at any moment…
I hope you had a nice visit with your parents, enjoy life as much as possible! That's what we should all do.
Take care my friend!
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So true @Sylviequebecbc that the bowel obstructions are always on our minds. What we eat is always forefront on our minds as we process what that will look like in the long run. Thank goodness for the awareness and guides to help us along the way too. It has been super helpful. My Palliative Doc and I talked yesterday and I was having terrible abdominal pains. They were constant with episodes of acuteness that would have me almost doubling over. Terrible for sure. I had enough so we chatted and she upped my dose of Dexamethasone daily and then gave me Lorezepam at night for sleeping to counteract the Dex uppness end of things so I can sleep at night. Yesterday was day one and it helped. The pains are pretty much gone or non existent which is good. I had a good day today. Only caveat is that it makes for very loose bowels like uncontrollable so thank Goodness for Depends because I can foresee some accidents headed this way when one can't feel it happening. Another way to make sure I am getting cleaned out too. So two ways to look at it.
How are things with you these days? Doing well? Any appts etc up and coming?
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@Strongwoman you are really a strong women! I am waiting for a CT scan result, will have a virtual meeting with my medical oncologist on the August 7th.
I have a feeling my cancer is getting worse, so I hope she has an idea when I can start this experimental treatment. Taking it one day at a time, but it is hard to stay optimistic when the nausea sets in. I can only eat small portions at a time, took a omeprazole last night which helps with the acid reflux. Not too much pain yet which is a blessing.
Take care and big hug to you!
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@Sylviequebecbc A little update for you now that I have been on this new med regime for a bit. It has been helping and the very loose bowel movements have changed back to being normal. That was a bit of relief to have that calm down for sure. I can say that the Dex has been allowing me to be and feel hungry and that I have been eating more than I was. This makes my family very happy when they see me either eating more or more often. I know for my hubby it makes him more at peace with what I am going through and doesn't worry as much. It is that old addage that they feel they need to be feeding us and if we aren't eating they are failing us or something is wrong. Goes along with food is such a big part of what we do in every day life that for them, they can't imagine not eating only what it means or can mean when we don't. Tonight I think I will be eating some ramen noodles and staying safe with what I eat today. Best way to be and hope it passes sooner rather than later. Hoping I don't have to take any nausea meds today and can combat this myself.
Seems to be the way. I am going good and everyone is happy and I start making plans with people to do things like lunches and BLAM it hits and my body says "no you are not, what are you thinking". Silly body. Silly silly thing it is. So, like you I will be gentle with myself today and pray tomorrow is another day. One day at a time and that the symptoms don't worsen at all.
I will take care! You too and here is a big hug for you too! 🤗
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@Strongwoman my doctor is putting me back on Dex today, been very bloated upper left abdomen...funny how things can change so fast! I had a CT scan on August 2nd that showed minimal changes since 6 months ago, but yet things have changes for over the past 7 days, as I told you about.
On a happier note, I should have my biopsy next month, so my journey with the experimental treatment should start soon!
Other good news: my eldest daughter will be home tonight for a visit, and a couple of good friends are coming tomorrow for a visit, I love having people around! The fire situation is stable so far, nothing too close to home. No smoke these days and we did get some rain, lowers the stress!
Have a wonderful day! ❤️
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@Sylviequebecbc Yes, it is funny how things can change so fast! Day by day it can be a new day. For me today, it is what I call an "iffy" day and had to take an extra Dex at lunch because of it. I am on 4mg daily now for the Dex. What did yours end up doing with you? Although I haven't had a CT scan in awhile, I know the CA 125 levels continue to climb which means progression and growth. Despite not seeing it, I feel the changes inside due to what I can eat, drink etc on a daily basis. The abdominal pain is real when one is bloated and the Dex will help to keep things as open as they can be for us to reduce the effects inside we can't see and hopefully ward off any obstructions. I wish you well on your new daily dose. You can ask for something to help you sleep if the effects of the Dex are messing with your sleep at night. That is a wait and see thing. I now take Lorazepam and Zoplicone at night for sleeping and it has helped. I have some rough nights but just get up and watch tv, I don't fight it. I will sleep eventually. Generally those are sporadic episodes which is nice.
Remind me again, you are having a biopsy of what and what experimental treatment did you qualify for? I am out of options so am curious to see what they have up their sleeve for you. I wish you well whatever it is and that it works well in reducing any growth or progression for you.
Sounds great having some people around for visiting. It is good for our souls and helps to fill in the day(s) that is for sure. My nephew dropped off some exercise equipment at my house for an experimental trial he is in for a congenital disease he has. This means he will be coming and going to do his exercises at my house due to the lack of space where he is living currently. It will be nice that I will get to see him more often even if it is briefly. I gave him a key to the house so that he can come and go as he pleases and doesn't have to wait for me to be home to fit this into his day. Just knowing he will be around more warms my heart. I am thankful that the fire situation is not close to home for you and is staying away. I bet the rain coming down brought some calmness to the situation and lowered the stress that it may come closer to you as well.
Thanks for your update. Let me know how the daily Dex is going for you and how everything else is too. We will chat soon enough esp as our stories continue to be similar in many ways. Take care of you and enjoy that family that will be around. 💖
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@Strongwoman the biopsy I will have is to participate in a "personalized onco genomic study" where they analyze the cancer DNA and if they find an anomaly in my cancer DNA, they put the info in their system to see if a drug exists that can fight my cancer, and it could be any drug that is already around, a diabetic drug, a chemo one, a seizure preventing one, etc could be anything. The study has been around for a few years, still experimental. Gives me a little hope!
So far the dex is giving me some pep! I am on 4 mg per day for now, then titrating down for a duration of 2 weeks.
Have a wonderful weekend, let's keep in touch!
BBig hug,
Sylvie
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