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I am fighting for my life waiting to see if my complete inoperable obstruction will clear or not. I know that when I was diagnosed, I was mostly told to eat what I want. I was doing massive research on my cancer and treatment at the time. It never came up! I adopted healthier eating and complementary harmonic healing into my cancer protocol anyway alongi with their chemo. There one year survival  turned onto four.

I gained 20 pounds on the steroids and tried 0zempic about 2 years ago. Under my oncologist, family Dr and endocrinologist okay. I iost 20 pounds and felt great. When a potential suspected partial bowel blockage showed up on a scan I stopped taking it just in case. Here, i learned of b.b.  And started following a low residue diet.

Last Friday my Endocrinologist glossed over fears of b .b and agreed to prescribe it again for me since the scans after the first potential partial were clear and  no other issues were noted. I had gone to ask about the new generics with lower prices coming out soon. I was thinking if I lost another 20 pounds, it would help deal with some serious blood pressure issues and heart palpitations that had come up. He just said there are risks vs benefits. We didnt discuss percentages of risk or degree of risk for a cancer patient just reviewed my  b.b. history ( none of note). Having what happened to me is very rare.

I injected one dose of Ozempic on Friday and on Tuesday I am fighting to survive. I find out that one dose can precipitate a b.b. in vulnerable patients ( like cancer patients). I am going to make sure my statements are added to my file. The slowing down of bowel digestion by the drug could have allowed a vulnerable area with adhesions to become blocked or kinked. I didn't know about adhesions!

I wish with all my heart my doc had advised against it and I think he should have told me the risks to me were too great and why and suggested its not safe for me. I would have never taken it. Either the warnings were not sufficient on the product or the doc was negligent in his knowledge. I do not know where my common sense was that day!

GPL1 drugs should never be offered to Ovarian cancer patients. Assuming I make it, I intend to follow up and make sure this doesnt happen to anyone else.

I also think more education on b.b. needs to be given so we can minimize our b.b risk from day one of our o.c. diagnosis.

Dumbfounded by everything I have learned over the last week! Urging all of you to never take gpl1 drugs and to seriously adopt  the low residue diet guidelines as best you can on a preventative basis.

Things moving again, but I don't know yet if blockage has cleared itself. Terrifying experience. I don't want it to happen to you!

Symptoms were terrible belly pain getting worse, like childbirth, throwing up everything tasting of bile, couldn't even sip tea. This is a medical emergency go straight to the e.r with ,' suspected b.o.

Thanks for the love during my crisis. I will let you know if I make it. Signs encouraging. I will always be following low residue diet to the letter now.

Donna

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@BellaDonna1959 I'm so sorry to hear you are going through this ordeal. I am no expert when it comes to medical advise or counsel however my oncologist asked (didn't tell but was fairly blunt) that if I were to take any drugs or vitamins or holistic treatments that I check in with her and my medical team first. Ultimately the decision on what I would pursue would be mine however they wanted to ensure they could advise, if they were aware, of any risks. I have followed that advise for the past few years, and it has served me well so far. So I'm sorry that your Endocrinologist wasn't as thorough in his/her advise/counsel. I may have missed it, however did you speak to your oncology team at all for their input? I'm just curious although you would think someone in a specialist capacity either way, would be more forthcoming on advise/counsel given your previous OC experience.

I have experienced a lot of abdominal pain for over a year and to date, after bloodwork and scans, it remains unexplainable. I have never had symptoms of a b.b. however was advised by my oncology team to try a 'low fibre' diet. They said I didn't need to go all the way there however to try and few things and see if they helped minimize my abdominal discomfort. So I cut out eating raw veggies (which I love) as they are tough on the bowels. As well, I minimize the amount of nuts I eat (again, which I love) as hard pieces of things in your bowels can also be troublesome for digestion and things getting stuck. I know PMH offers a workshop on eating a low fibre diet so once you are feeling better that may be an option for you to explore.

I also wanted to mention that my husband did some research on scar tissue and adhesion. I had never heard of that term before either. For those who this may be new to, "Abdominal adhesions are bands of scar tissue that form between abdominal tissues and organs. Like the name suggests, the tissue can cause your organs to “adhere,” or stick together. Adhesions commonly form after abdominal surgery. Typically, you don’t need treatment unless they cause a complication, like a small bowel obstruction." I had fairly complex abdominal surgery for my OC so perhaps 'adhesions' are my issue. Sadly, they don't show on CT scans however if you can eliminate other things like obstructions and signs of recurrence, you can consider 'adhesions' as a possible cause of pain.

I wasn't sure if you were in the hospital however I sense you are being treated and in the care of medical folks now. I hope they are providing the help you need. I send my prayers to you that your recovery is on the upswing. Thank you for sharing so that others can be aware when exploring other medicines. Please keep us updated on your progress. 🤞

#Supportandencouragement

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@BellaDonna1959

I am sending big hugs and healing vibes your way. 🥰 I know you are a warrior and you will get through this. You've got this Teal Sister!! 

It is my understanding that bowel obstructions are a common occurrence for OC patients. Either caused by lesions from abdominal surgery or location of tumours. Constipation can also lead to bowel obstruction so be careful on that front too  

You are correct that it is not something that is addressed in a preventative manner unless something shows up on a scan. Unfortunately, your experience shows us how quickly an obstruction can occur and how very serious they are.

A few years ago, I was put on a low residue/fluid diet because one of my tumours was encroaching on my bowel. I was also advised to take Senokot every evening to ensure movement daily. I have had many iterations of tumour shrinkage and progression and the tumour shrunk enough that it was no longer too close to the bowel so I was approved to go back to a normal diet. Although I was ok'd to go back to a normal diet, I have to tell you that I modified my diet from that point forward and continue the Senokot! I cannot believe how attuned I am to my bowel movements 🤣. My bowel movements are a daily discussion point with my husband because I believe he needs to know…just in case.

If you would like to read more about others experiences with bowel obstructions and diet, our beloved 😇Strongwoman😇 was in constant battle with this issue and wrote a lot on this topic.

My advice to all Teal Sisters would be to discuss the potential for bowel obstruction in your situation with your care team at your next visit. Self advocate and get all of your questions answered.

@BellaDonna1959. Sorry to hear about the obstruction.  I hate this disease and all its side effects.  Because of this group and other groups I have learnt about the chances of this happening, I think I'm now bowel obsessed, making sure everyday is normal.  I'm so scared of getting a bowel obstruction.  I hope yours will resolve quickly and you are back on your feet.

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@Meinvan and @GloHo I too continue to be bowel obsessed and yes it is a daily conversation in my household 💩.

I was also told to use Senokot and keep it on hand. I took it every night for the first 8 months following my surgery and then my oncologist had me wean off of it to give my bowels a chance to readjust. Now, if I go a day without pooping, I will take it the next night and it always works for me. It's a product I wish someone had me about years ago. Note that there appear to be two products - one is Senokot and one is Senokot with stool softener. I tend to use the one with stool softener included. Things you learn, right?!

#Healthandwellness

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Wise words as always @GloHo and thanks for the reminder that doing a search on this site in the top search bar can yield a LOT of information from past discussions. As well, a good reminder that "self advocacy" should be at the top of all our lists.

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My son calls them 'mom's poop reports'!  Lol.  With love and humour  of course.  

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@BellaDonna1959 😂😂😂💩

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Hi Donna

I am so sorry you are suffering like this. As I nurse I have cared for many people with bowel obstruction and I wouldn't wish it for my worst enemy. I pray that you are doing better and getting through this horrific complication .

You are in my thoughts and have prompted me to read more about these drugs

Be well

Melissa

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@BellaDonna1959 Thank you for sharing the advice about the GLP1 drugs.  I took my first dose of Wegovy on December 31st, hoping to shed some weight. I am currently NED, and my oncologist said it was fine to take.  But what you're saying about side effects makes perfect sense. 
I've ceased taking it because I have bigger fish to fry currently.  No sign of cancer right now, but a trip to emergency on January 7th for shortness of breath and heart palpitations revealed a hemoglobin of 85. CT scan with dye revealed that my pre-existing hiatal hernia  is now "massive". Iron infusion on January 8th, colonoscopy and endoscopy on January 15th. No evidence of bleeding. Referral to a thoracic surgeon at Kingston General Hospital.  Waiting for an appointment.  In the meantime, my family doctor has ordered bloodwork and urinalysis prior to starting me on a regular iron infusion schedule.  I wondered why I was so darn tired!  
Hoping that your bowel obstruction issues get sorted out. Please keep us posted how you're feeling, and if the low residue diet is helping.

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Hi @HorseGirl so glad to hear you remain NED and so nice to see you again! I am however sorry to hear about the issues with the Hiatal Hernia. I had to read up on that to understand what it was and of course it sounds awful. I'm glad you are under doctor care and there is forward motion. Hopefully you'll be able to get into the thoracic surgeon quickly. 🤞

Please keep us posted. Sending positive vibes your way.

#Supportandencouragement

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@HorseGirl I hope you are able to find out the reason for your low hgb.  I have a hiatus hernia too, so uncomfortable sometimes.  Good luck with the surgeon.🤞🩵

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Sending much love and positive energy.  Yo/u got this Donna.

 I know how painful and uncomfortable bowel  obstructions can be.. 

I had one  shorty after by surgery and hav to be hospitalized fr 10 days…. Gastrointestinal tube and pic line for nutrition   

It was even more painful than my surgery  have the doctors confirmed it was caused by by the Ozempic

🩵

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Angie
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I am going to report it to Health Canada. There is a reporting process for critical reactions. There is a class action lawsuit on Ozempic. I am going to see if my case qualifies. I will get the word out to my doctors to never give this to any kind of bowel compromised patient. Take it from there.

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@BellaDonna1959 checking in to see how you are doing? Please let us know. I know there are a lot of worried Teal Sisters out there sending positivity your way.🩵

#Supportandencouragement

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Thanks. I am home and on full fluids. Things are moving well. Fingers crossed it continues and doesn't reblock.  I am following the diet to the letter. Feeling good, grateful. Facing possibility of death was like a light bulb going off. The rest of my time here will be spent on rebuilding my health, joy ,family and peace. Letting all the clutter and noise go. I was already in this zone somewhat but now I am 100% committed. I have learned so much about how critical digestion is to our health and healing. I am not feeling deprived at all. I am hoping that my oncologist will switch me to Elahere. Hopefully that will keep the cancer under control while Avastin has to be withheld to heal the small bowel. Thanks for all the love and support.

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@BellaDonna1959 I'm certainly glad you are home and things are progressing well. I definitely have my fingers crossed for you that you remain 'unblocked'. 🤞

#Supportandencouragement

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Thank you for posting this, because I am going through something similar.  It feels good to be able to chat with someone who understands, doesn't it?  I really hope everything works out for you.

My problem is a partial obstruction which my gyne oncologist tells me is caused by scar tissue that developed after my most recent recurrence last winter.  The tumour was near one of the bowel resections of 2021.  It created a fistula through the wall of the small intestine, which healed as chemo destroyed the tumour.  However, the scar tissue is now causing a blockage.  Meanwhile, during the treatments, I developed gastritis from the steroids and have been on Pentoprazole ever since.  My recovery from chemo seemed to plateau in November, but I just blamed it on other things -- gastritis, what I was eating, the magnesium supplements I was taking for my low readings.  Finally, at the beginning of December, I decided I'd go to a naturopath to 'reset' my bowels.  Her recommendations were to increase fibre.  With the wisdom of hindsight, that was one of the worst decisions I could have made.  The spasms of pain took my breath away.  I gave up following her protocol, but I didn't fully recover.

I managed to get through December, with my checkup with my gyne oncologist coming up on Jan 7th.  She admitted me from the cancer clinic, NG tube, ice chips for 4 days, liquid diet ...  I'm sure you can relate.  I told her about seeing the naturopath and said I'd checked with my GP before I did.  She was not pleased.  She told me to never do anything like that again without checking with her.  She's the one who knows my history and the state of my digestive system.  With the X-rays and CT scans, while I was in hospital, one of the doctors told me that my intestines were a mess of adhesions and scar tissue (I've had two other abdominal surgeries -- 2006 for a benign ovarian cyst and 2019 debulking after the first awful diagnosis).

So, basically, that's what I wanted to tell you that I learned.  Always check with someone who actually knows the ins and outs of your medical history.  Take care everyone.

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@GGail thank your for sharing and I'm so sorry for what you've gone through. We always think we are doing the right things especially when we put trust in those that are 'experts'. My oncologist was very clear at the beginning of my journey to please review things with her and her team before I undertook something whether it be adding or changing supplements, taking 'OTC' drugs, changing my diet etc. She was clear that everything I choose to do is ultimately up to me however the team likes to at least weigh in with pros and cons (if necessary) and bring their 'expertise' to the table. 

I have had a LOT of lower left abdominal pain over the past few months. It's like pinching and twisting with a bit of heaviness. Most uncomfortable. My oncology team has repeatedly said that it's likely scar tissue forming due to the extent of my prior OC abdominal surgery. During my routine colonoscopy last May, the doctor said my sigmoid colon had narrowed likely due to surgical scar tissue. I have not had a blockage and pray I never do however I'm on guard. A recent CT scan didn't reveal anything. You mentioned that your 'adhesions and scar tissue' were identified via a CT and/or X-rays. I had read that the only way to identify them was via a 'laparoscopy' procedure so I'm glad to hear that they CAN be seen through other approaches.

Out of curiosity, are you on any diet modifications now? I have done some modifications, based on my oncology teams suggestions, to loosely follow a low-fibre diet. Specifically I've cut out nuts, raw veggies and don't use any 'high fibre' products. I'm not sure that's really doing anything but maybe it's not making things worse. I'm a good daily pooper and if I miss a day, a Senokot typically helps. I do have this topic on my list to discuss with my onc team at my mid-February appointment.

I appreciate any insights you and others have from your journey. 

#Healthandwellness

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@Alwayslearning

I am actually waiting for surgery next Tuesday, the 3rd, so the answer to your question is yes, I am on diet modifications.  It's because my digestive system is still recovering from the recent flare-ups and I am being very careful not to have another one before Tuesday.   Mostly liquid, low fibre, small portions.  I guess I'll know more after I've had the surgery.  There is, of course, the possibility of an ostomy, which would change everything.
Good luck with discovering the cause of your pain.  It does sound like a lot of the various twinges, etc., that I've had over the last few years. 

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@GGail I do hope the surgery goes well and that they can resolve without an ostomy. Is the surgery to look for adhesions or is it to try to locate and eliminate the blockage source?

Thanks for the update and stay strong. I appreciate all of your sharing. It's how we learn isn't it. The information we share in these forums just isn't in a text book or on some webpage or even at times in pamphlets and things our doctors share. It's available because of our lived experiences! Will be thinking of you next Tuesday and putting out lots of positive vibes 🩵

#Supportandencouragement

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It’s so true what you say about lived experience. I just wish I could learn not to try to explain away symptoms and accept that there might be something wrong. I spent 2019 thinking I must have a UTI because of the pressure in my groin—it was a 17-cm tumour; then last fall, I was blaming my discomfort on gastritis—it’s a partial bowel blockage.
The surgery will be another resection to get rid of the blockage. The problem is all the adhesions and scar tissue from previous surgeries, which may limit how much she has to work with, hence the possibility of an ostomy.
On a positive note, my CA 125 is normal and no cancer cells can be detected. A general surgeon will assist, so they’re trying their best.

Sent from my iPad

@GGail so glad that the CA 125 and cells are all good. That is positive. Thanks for the clarity on the surgery. Will check in later next week to see how your surgery went. Sending you hugs (gentle ones). ❤️

#Supportandencouragement

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@Ggail I would also like to know how they 'saw' the adhesions.  I asked my surgery consult and she said there isn't a way to see them on film and they can only be seen through going in. I was shocked that in this day and age they cannot get better pictures of scar tissue and adhesions without causing MORE through going in with a knife or other incision. Could you try to find out how they saw them?  If it is accurate I would like to be aware and ask for the testing because I'd like to know - how many and where? Where there is one, there is usually more.   Thanks. 

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@BellaDonna1959  I will certainly ask how the doctors could see the adhesions.  I've been told for years that the strange twinges and/or cramps are likely from adhesions and scar tissue.  Also, all the reports on my scans and x-rays have references to clips -- this is from the report of the x-ray from the 23rd: "Numerous abdominopelvic surgical clips are stable."  Also, this from a CT scan earlier in January: "Pelvis: Prior hysterectomy and bilateral salpingo-oophorectomy, multiple surgical clips related to the same."  I'm not sure if that's the same as adhesions and scars.

It could also just be that my intestines are so bulged and looped with air right now that doctors can tell by looking that some things are attached or thickened where they aren't supposed to be.  Anyway, I will try to remember to ask over the next week or so while I'm in hospital.  

Right now, I have two X's on my belly from the pre-op appointment with the stoma nurse yesterday -- one for small bowel, one for large bowel.  At this point, my doctor can't tell what she'll find and what she'll be able to repair.  I'm just looking forward to having it behind me.  Whatever happens, all we ever have is the here and the now, isn't it?

p.s.  I'm currently reading a book 'The Happiness Advantage' and decided to buy a variety of candies to offer to any of the nurses, doctors, staff who come to my room.  Maybe I can make a bright spot in their day, and, so, in mine. 😊

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@GGail sending lots of positive thoughts and prayers your way for your surgery. I have a good friend who is a very seasoned radiologist. I'm going to ask him for some perspective on how scar tissue and adhesions are typically "seen". From everything I've read, they can only really see them "laparoscopically" which kind of defeats the purpose since they have to go into the abdomen, which with the adhesions is already angry. I will share back my learnings.

Thank you for the book reco. I'll add that to my ever growing list. Also, how nice of you to think of the medical team. So very thoughtful when you clearly have so much more on your mind. ❤️

#Supportandencouragement

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Hi I'm sorry to hear this. And the bad advice - so discouraging.  I told my Oncologist I would be seeing a Naturopath and double checking her advice with his input. Mine is specializing in cancer- related care because she lost her dad to cancer. She researches everything and then I double check her research and recommendations online with PubMed for science studies.  For example, she suggested hi dose IV vitamin C.  I never got Covid.  She suggested Mistletoe injections to help the body cope with chemo and my blood work has been exceptional until the last 4 months (protein in urine).  She gives me suggestions for just a few supplements and then I double check on 'chemo treatment plus 'supplement' and check for any contraindications.  I did tell my Oncologist that I was going to do EVERYTHING safe and advisable to fight that 6-12 months prognosis. But that if I had any questions or concerns I would review with him.  When I first got sick, I used THC/CBD suppositories. I didn't tell him about that.  I also used Mbendezole to clear out parasites, fungus etc.  But it all brought my CA 125 down from stuck in the 300's to the 132's. I did all my own research on that one.  All the dietary changes I made and things I tried - I credit them partially with my still being here in combination with my chemo.  The decision I made to take the Ozempic was a wrong one and the counselling I received inadequate.  I never should have taken it - I should have been counselled that the risks were too great. I find that you have to do your own research because my oncologist admitted he was not 'allowed' to approve of non -protocol treatments (fear of lawsuits I'm sure). They just don't have the time or training to keep up with the advances being made in holistic practices and even dietary ones. In Europe, cancer care is integrated far more with healing modalities.  Here and in the USA it's all about the drugs and the money making machine.  I see in the USA some hospitals are starting to integrate more as studies come out that support some of these products.   How to Starve Cancer was one of the first books I consulted and Jane overcame horrible odds by looking deep into cancer cell blocking pathways and I've used a lot of her advice from the get-go.  My doc says I'm his outlier patient with cancer not behaving 'normally' and I always feel like saying, 'Don't you want to know why?'  LOL

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@BellaDonna1959 thanks for the information on the various things you've tried. Also, for the book reco "How to Starve Cancer". That's a new one to me. I'll have to look it up. I'm with you in that it would be great for doctors and I guess researchers to be able to truly study the outliers to see if there is some connections on why/how they do well. Not enough time/research money I'm guessing which is sad in and of itself.

I hope you will continue to do well. Please let us know if you get approved for Elahere. I believe there are a few women in the forum who are also exploring this. Stay strong 🩵

#Treatmentandsideeffects #Supportandencouragement

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