Swallowing my pride and just asking

[FlowerRose]

Hello again. I have such an icky question but I figured heck, if I can't ask here then where can I? Debulking surgery in 12/19, lots of organs removed, chemo, then avastin/olaparib is my new normal. Ever since surgery, have had a devil of a time with "elimination." Have been on the constipated side all my life (sorry, TMI) but now, I literally cannot "go" without either a self administered enema (ew) or daily suppository (double ew). Like I say, I've battled this most of my life, so every home remedy as well as suggestions of exercise/more water/more fiber/psyllium/colon cleanse pills/strong coffee/prune juice etc. - will have no effect at all. I swear, though cannot prove, that when all my organs resettled after their neighbors were removed, my colon repositioned itself in a way that no longer allows me to eliminate naturally. Docs don't seem concerned, but - hello!?! Does anyone have some wisdom? Hopefully you'd won't all think of this every time you see me post from now on

[Mammi]

🤣Hi FlowerRose never worry about talking icky , my friends, husband in fact anyone that will listen have had to endure that same conversation from me constantly for months 😱shouldn’t worry as same as you I’ve been this way most of my life but I think after surgery & being fitted with a pessary ring for prolapse and having gained a hernia it was stressed that I must avoid constipation!! Easier said than done as you well know.I also have tried everything but almost accept this is how I am.I mention these concern every time I am examined but nobody seems concerned. So sorry no words of wisdom just security knowing your not alone 😂Take care!

[Lyndy]

Hi Flower Rose I do agree that debulking changes your insides. I had a colonoscopy before and then another a few years after and my large colon had ‘sagged’ as they put it!

I got some input from a dietitian which was helpful and I find eating things that increase the good gut bacteria is good for me. Don’t suffer in silence... get help! xx

[FlowerRose in reply to Lyndy]

Ooh! May I ask what kinds of food increase your good gut bacteria?

[Lyndy in reply to FlowerRose]

Live yoghurt, things with cultures in but you can just get a probiotic...dietitian suggested a good basic one was the way to go as you can pay a lot for them xxx

[BeliGolub in reply to Lyndy]

Kefir, kimchi and saurkraut for good bacteria. Kefir is sold now in supermarkets (a yogurt drink).

[Davonian]

Hi, I'm experiencing the same. Also feel, no one is listening. Being told constantly its sluggish bowels. Tried everything, diet change etc. I take Sodium Ducosate, CosmoCol and Senna everyday. Pain is excruciating and up to 5 hours at a time when it starts. Will also be looking out for that wisdom. You're definitely not alone. 🤗

[Madmolly]

You probably have tried the majority. Like yourself I eat prunes. Apple helps and so does popcorn and the sachets lazido. Also rocking back and forth on the pan seems to help. Have you had scan to see if things have settled in right positions. I hope you get help of some sorts as it can be very frustrating

[Permafrost]

Hi Rose, same here, a nurse while I was receiving chemotherapy explained that my bowel now has restricted room therefore my normal high fibre diet makes things worse. She advised low fibre for 4 weeks then gradually introduce more fibre, I struggled with this as it seemed so unhealthy but it did ease my discomfort, always taking one sachet of movical each night. Still have problems but it is a bit better and I’m eating a more normal diet. Such a horrible thing to cope with while trying to remain positive, I hope this is of some help best wishes to all you compromised ladies

[Irisisme in reply to Permafrost]

Yes, Permafrost and FlowerRose, I also had to go on a low fibre diet. It seems counterintuitive but it did help.

So many of us need help and aren’t getting it.

Maybe Ovacome admin could advise here?

Iris

[TarbonNZ]

Hi FlowerRose. I have had problems my whole life also, which became worse with all of this happening. The funny thing here in NZ with my Oncologist is, that I am constantly being asked if there are any problems, also includes passing water. ! Go figure. I appreciate currently it is because he is on the alert for a bowel blockage, and also my kidneys are playing up, but I have always been asked this right from the beginning. Anyway, here is how I have dealt with the bowel issue, and it has been successful ( well most of the time).

1. I no longer take ondansetron while on chemo, and only take 1 steroid tablet prior to the infusion. I use other meds that are less likely to constipate you.

2. I take laxol tablets, taking three at night prior to dinner.

3. I have a cup of senna tea prior to going to bed. I buy the senna teabags from iherb.

4. I eat very little bread now, as I have found this is an issue for me. It does not matter if it is white or brown.

5. From time to time whenever there is a problem, I drink Kiwicrush. Not sure if that is available your way. They are small packets of frozen kiwifruit pulp, which you defrost and drink. It is a recommended treatment for constipation here.

6. I also do intermittent fasting, not eating after 7.30 at night, through to any time from 12.30pm to 3pm the next day. I only eat two meals a day.

I see you have tried most things, but it is really a case of trial and error to find what works for you. Cheers Therese

[Hidden]

I have suffered horrendous constipation since my debulking op nearly 3 years ago. like you I have tried everything, I have realised over time that I don't cope with too much fibre and there is a delicate balance, I also discovered you also need soluble fibre to keep you regular and I now take a supplement, I also take a pre-biotic to keep the bacteria in my gut happy. I do drink lots of water and also orange juice with bits in. I take a stool softener twice a day and try to eat a balanced diet little and often rather than 3 large meals, so far so good.

Good luck x

[Kkaren]

Oh my goodness I think I am your twin! I have always suffered from constipation even before all of this. In fact it was a family joke that when folk were buying medication incase they got the runs on holiday I was in the queue buying medication for constipation. I think I may have helped my bowels over the years by sitting on the toilet for five mins and if nothing happened then I was out of there so my bowels never got into a regular routine. Normal for me was once a week which is fine if that’s normal for me. After my hysterectomy it was horrendous as I had no muscle tone down there to even try and push anything out. I’ve not been much better since. I don’t take anything on a regular basis which I should. I was really constipated at the weekend and it took two days to get any relief having taken dulcolax. Each time I say to my husband I’m not letting things get to that stage again but somehow I always do. Prunes are my go to and I also read someone else saying dried apricots. I like liquorice and read also someone mentioning werthers sugar free sweets. I googled it and there is something in them that can cause that thing that I can’t spell!! This lady just had one of them a day. I’m not sure about others but I think I now have a psychological barrier to going as I expect nothing to happen and that makes things worse. I hope you find a solution x

[Riverflo]

Hi FlowerRose, yes I agree it's a really significant issue as it affects how you feel throughout the day. I never had constipation until after surgery when it was awful for months! I was also advised to eat a bland, low fibre diet. Now, I eat normally but started making my own sauerkraut, water kefir and yoghurt, all of which help to maintain a healthy gut and the constipation has gone. I can't guarantee that those foods are the cause of the change but they have certainly helped.I hope you find a solution that works for you. xx

[Ruebacelle]

Never worry about ick you are among friends and we all have issues. Here in france they wd be concerned as they pooh pooh diarhea but get frowny if constipated. I have the opposite problem tend to go several times a day. I do eat a lot of fiber nuts berries carrots broccoli multi grain breads etc. Maybe try reiki and or osteopathy. Sorry not very helpful hugs from france

[Kayadiana]

Agree with everyone here - and I’ve been thinking the same thing about re-positioning. I also notice that my back muscles get tight when I haven’t ‘been’.A number of things help a bit. During chemo I declined Ondansetron, additional steroids etc. Now I try to have a high fibre diet with extras eg I’ll mix my own muesli with extra fruit, nuts and chia seeds (seems to provide extra bulk) and have it with coconut water (to avoid as much dairy as possible). Lunch might be salad but is more likely to be dhal with veg, extra herbs cooked in it (Spice Tailor make a good one). I also add Chuckling Goat kefir - there’s a tv programme where they measured the effects of yogurt vs this kefir and this ‘won’ in terms of increasing diversity etc. It’s a bit of an acquired taste, but I find it ok on savoury foods.

I’ve now read a lot of books on the gut - some of the tips are helpful -

raising your feet on a stool so that your position is closer to squatting - see Squatty Potty, which gives you the idea

- rocking backwards and forwards while you’re on the loo

I’ve also found that doing a few basic Pilates warm up exercises eg hip rolls first helps,

And one thing I haven’t seen mentioned anywhere - I find that deliberately sucking my teeth, making extra saliva etc seems to remind the other end to start to work.

I’ve also found that a session with a cranial osteopath really helps. My guts had gone into a sort of spasm after the op, probably form the shock, and just one treatment really, really helped.

Sorry if I’ve burdened you with too much information. I just know how rotten constipation makes me feel, so really sympathise with everyone else who has this problem.

Best

[bamboo89]

You're on a drug or two - 99% of drugs are constipating, including the more run of the mill drugs like paracetamol (tylenol), especially if you are normally a person who tends towards constipation. I struggled on and off with constipation for years, nothing helped (not prunes, fruits, vegetables, psyllium husk or any of the usual stuff). and I've always drunk a lot of fluid in a day, usually loads of tea, so increasing fluid intake was hardly possible. And then I started eating rolled, whole jumbo oats (not things like Oats So Simple or finely ground oatmeal, actual whole rolled large oats), as part of my morning routine in an attempt to lower my cholesterol, and it had an almost magical side effect - it completely cured my constipation problem. I never had a problem again, even after debulking surgery and being left with the largest incisional hernia in the world - until I had to go on cancer drugs. I should say the way I eat the oats might make a difference - I loathe and detest cooked oats in the form of porridge, so what I do is put a handful or two of oats in a bowl, pour over enough boiling water to cover, then go away and do something else for about 10-20 minutes. These days I add other stuff like other whole grains, nuts, seeds (especially milled flax seeds), berries or other fruit, add some cold milk, stir it around a bit and eat it like that. But now I am on Niraparib (another PARP inhibitor like Olaparib) I do have to take at least one sachet of Movicol (laxido) at night, and often need two of those in a day as well.

I find Niraparib seems to make my bowel lazy, as if its too tired or maybe too bored to process things properly, it just can't be bothered, so although things move readily every day, its not very much. I am currently off Niraparib temporarily because of blood pressure problems, and every time I come off it for a week or so,, within 4 days I am going to the loo more normally and I can feel the bowel actually working, so its definitely the drug making things worse. I've had to stop Niraparib twice before because of BP problems, but I'm beginning to think its worth coming off it for a few days every few weeks just to let the bowel clear properly and get some proper sleep, then restarting it...though I doubt very much this course of action would in any way be approved by the oncologist!

I'll just add that if I don't eat the oats mix for a couple of days, things become set in stone, so to speak.... but do make sure you are drinking enough too. If you try it, I hope it helps...and please remember, NOTHING is off limits as a subject for discussion on here, we all suffer these things and worse...🙄🤭🤗

Good luck...

Miriam

[FlowerRose in reply to bamboo89]

I love the idea of one's bowels being bored. That just cracked me up for some reason. Like they're sitting there with a cigarette, looking out the window, with their chin in their hands sighing with ennui.

[bamboo89 in reply to FlowerRose]

Yea, I know what you mean, but that's kind of how it feels, its like it goes, grudgingly, oh here's a bit, I really can't be bothered to do any more just yet... I have often found myself saying out loud, is that it?... that and shouting at the tv or radio probably means I'm going a bit nuts🤔🤗

[Tillymint61]

The only thing that I don't see anywhere in the replies is 'gagging' I too have been in your position and would try anything. It's to do with reactivating the vagus nerve that sends messages to the gut/ bowel. Two or three times a day I press a desert spoon on the back of my tongue causing my gag reflex to kick in. Also pre treatment for 2 days I go low fibre and up the laxatives to at least start treatment with as emptied a bowel as I can. My treatment is three weekly at the moment. Going low fibre goes against everything we know to be right but it is not advised when you are constipated as high fibre absorbs all the moisture from the gut. Good luck. Hope you find something that can work for you. Keep an eye on what if any pain relief you are on as some of them make it worse. X

[Irisisme]

Hello FlowerRose,

Constipation is common on this forum! So if you had it before OC it’s an even bigger problem.

I’ve had two hospitalisations due to partial bowel blockages so it’s no joke. I’m now taking 4 docusate sodium capsules a day and a Laxido sachet morning and night.

Don’t be fobbed off about this, get your health professionals to do more for you. You shouldn’t have to suffer like you are.

Good Luck,

Iris x

[mizpurple]

Lots of good ideas here. I will add, having a cold-water bidet attachment on my toilet was very helpful. Something about having a stream of cold water sort of massaging that area stimulates action, plus cleaning off whatever does emerge (sorry!) Cheap and easy to install by someone with minimal handy skills.

[Tabor]

Hi Flower Rose, that would be concerning to me. You would think the doctor would want to rule out something blocking your colon. Maybe think about a colonoscopy to check for blockage. Just a thought. Praying you find relief. God Bless ❤️

[Leniko]

Activia, kefir helped me w this. Nothing to be embarrassed about. Try to do some squats if you can