Bowel obstruction

[Barmycharm]

Hi ladies hope everyone is keeping sane as possible with our double twilight world of disease plus lockdown?!!

Having got myself as fit and healthy as I could following surgery and chemo last year and shielding as per NHS advice, I ended up in hospital anyway with bowel obstruction. Three weeks of a pretty horrendous time, emergency op to untwist and de tangle the bowel from the scar tissue and a week in HDU. Awful not having my husband with me or able to visit me and then added complications of infection because they didn’t take the central line out from my neck soon enough. Home now still in shock, as with the cancer you seem to get yourself through the treatment somehow and then the brain goes into shock thinking what you’ve actually been through?!

I’ve been told to stick to a soft diet which is completely against everything I’ve been eating to be healthy with the cancer, white breads and pastas, high carbs, low fibre so I’m finding it very bland.

Quite worried about what to eat ongoing now as my oncologist has said that it’s best not to eat a lot of high fibre diet ongoing because it puts strain on the bowel?! I had dieticians come to see me in hospital but can’t say they were much help for the long term advice.

Also very worried about this happening again, I know it’s common after surgery. When I asked the surgeon what I could do to avoid it happening again he said pray to god ?!! So now I feel the shadow of the cancer reoccurring and the bowel getting stuck in the scar tissue again, both of which came like a bolt out of the blue whilst I was feeling fit and healthy.

So I’m just looking really for any dietary advice or reassurance as I know some of you ladies have been through this more than once.

I’m sure I will get some positivity back and start moving forward again when I’m fully recovered and able to at least get out for a little walk each day but atm I feel stuck with the mental strife and the exhaustion from the past three weeks again.

Love and hugs to all of you out there suffering and feeling low and thanks in advance for any help or advice

Claire xx

[Everhope]

Oh Claire, I am so sorry to hear all this - exactly the same happened to me & I ended up having emergency surgery to clear the blockage - also got infection in hospital so ended up in isolation. As I live alone, I went from hospital Covid free nursing home a week ago & am trying to build up my strength to get home.

I have asked so many times for help on what to eat & what to avoid & have been told to eat a “normal” diet! I must say that I found the Hospital dietician useless. I was also told by the hospital to “keep on top” of constipation & take a laxative like Cosmocol if necessary!!

I suspect part of my problem was surgeon had no idea about ovarian cancer, which sadly is quite common I fear, & looked on it as bowel cancer, which of course it’s not.

The only thing I find helpful since my discharge a week ago is walking around, which should also help my wound heal. I also eat smaller portions.

I would love to get some proper advice on diet, it seems to be an ongoing problem for everyone.

It is 4 weeks since I left home & my poor leg muscles really need strengthening, so for the moment I am concentrating on that!

Let’s try & feel hopeful & regain our strength.

Love

Cx

[Barmycharm in reply to Everhope]

Hi how strange we’ve been through exactly the same thing at exactly the same time?! You weren’t in Queens were you by any chance?!!

It’s ridiculous isn’t it that they have dieticians to supposedly help you but all they can advise is little and often, when diet could play such a major role in keeping patients out of these repeat operations.

I have had bad leg pain since too and am trying to walk around the house and garden as much as possible.

I really wish you better very soon and hoping neither of us ends up back there again!! Also hoping you will be home again soon it’s always so comforting but only when you’re ready and able to look after yourself properly.

Take care xxx

[Everhope in reply to Barmycharm]

One last word of advice, learnt through experience! When you feel better take care not to lift anything even vaguely heavy as you could well end up with a hernia! This happened to me after my initial debulking surgery. Difficult to avoid when you feel good & particularly as I live alone.

Best of luck with your recovery

Keep in touch

Cx

[Barmycharm in reply to Everhope]

I know what you mean, when you start to feel better you just want to get on with everything don’t you?! My husband is very good, he does nag me don’t do this don’t do that but I’m a bit sneaky with trying to do stuff when he’s not looking. However I certainly don’t want to ever be in hospital again if I can do anything to avoid it so I will heed that advice!

Many thanks for your speedy reply it’s helped to share it.

Thinking of you xx

[27-359]

Hi. I too hadan op for a bowel blockage, but wasn't given any dietary advice. I certainly didn't see a dietician.

I am vegetarian (main!y) so very high fibre and have so far not had any issues. I would hate to have to adopt the bland, white diet that is sometimes recommended.

Jenny

[Barmycharm in reply to 27-359]

Hi Jenny

That was me too, I chose to go mainly veggie after my diagnosis last year although I do eat fish.

But was eating lots of chickpeas lentils vegs and fruit thinking it was all best to keep my body healthy.

It’s all so confusing. Hoping you are recovered and feeling well now

Claire x

[WoodyB]

Hello Claire, so sorry to hear what you have been through.

My wife Suzanne has had bowel obstructions twice (in 2015 and 2017) but she is now doing very well on olaparib (her "magic" pills) following 3rd line chemo in 2017.

It seems counter-intuitive to avoid fibre, which is supposed to be so good for you. I agree that hospital dieticians (also many junior doctors) are often not very clued up on bowel obstructions.

You are right that you must eat a bland, soft diet for a few weeks to give your bowel a chance to recover. If you google "low residue diet" you will find many useful tips. In time you can then start to introduce a bit of fibre, little by little, and see whether it causes you any problems.

If you get constipated you must not take senna or fybogel, as they contain high doses of fibre. A stool softener such as docusate is the best way to keep the poo soft and "gentle".

Drink plenty of (still) water and make sure you get as much exercise as you can manage. Hope you feel better soon, Woody x

[Barmycharm in reply to WoodyB]

Hi Woody

Thank you so much for your reply and advice. I do use the docusate daily anyway but my bowel got tangled in the scar tissue from my ovarian cancer op. Double trouble isn’t it?! I will have to accept the diet as it is for now. I’ve googled as you suggested so thanks for that Really hope that your wife continues feeling well

Take care

Claire x

[WoodyB in reply to Barmycharm]

Hi Claire, forgot to say that both of Suzanne's bowel obstructions were caused by recurrences. The tumours were squeezing her small bowel. I guess as you had surgery the cause was not a recurrence and hopefully the surgeons managed to remove the problem scar tissue. Best wishes for a full recovery x

[Ruebacelle]

Hi. Bad news is you have to follow diet. 10 day's nonresidue then 10 days mushy then you should be ok. I pureed raspberries strawberries and ,blueberries and passed thru a sieve. Smooth and clear soups. Strained legs...ice cream and sorbet ok. I know it's annoying. I hate simple starch but obeyed. Good luck

[Barmycharm in reply to Ruebacelle]

Thank you so much for your reply.

It’s good to know others have carried it through and that it’s worth it in the end. Maybe I’ll have some mushy peas tomorrow 😂

Take care x

[MsDirecto]

I have been treated for GCA since Feb 2020. Was starting to experience constipation and knew I didn’t want to go down that route.

Began eating Raisin Bran cereal every morning and it worked

I typically avoid wheat, but so glad I started this bran cereal

....the only problem was the i came to like it too much. Perhaps like candy or other carbs people crave on prednisone. I could literally eat 3 servings a day when the prednisone munchies kicked in. Also put on 11 lb in a few weeks. .all at my waistline and tummy. I am 5’3” and haven’t been heavy for many years. before GCA I naturally ate a LCHF diet because I never bought into the low fat nonsense, and carbs make me sleepy.

Thanks for the reminder and the one day example.