Post Debulking Surgery Experiences

[Newbie_2020]

I'd be grateful to hear/learn from those of you who have already done the debulking surgery.

Once you are out of hospital and have fully recovered what are the changes that will take place within the body? immediate and long-term?

Thanks very much!

[Yorkiepudd]

Hello. It’s very difficult to say as not everyone will be the same. The most obvious will be a scar but it does flatten and lighten and you may actually be rather proud of it.

Depending on your age there are menopause symptoms to take into account. I was very fortunate and didn’t really experience any and a year on the only thing I’ve noticed is creakier joints!

The few weeks following surgery are important to get your stomach muscles to heal. The surgery puts you at an increased risk of hernias anyway but especially important after the op; physios will show you how to get out of bed and such like.

Hopefully your surgery will be scheduled soon as I certainly felt better once this was done. X

[Newbie_2020 in reply to Yorkiepudd]

Thanks, again x very helpful 👍

[Yorkiepudd]

Sorry I should have added that you can get oedema in your legs if you also have lymph nodes removed and there is always the chance of adhesions after any surgery.

It’s a very personal experience but you usually find someone on here who’s can reassure and help with various symptoms x

[Newbie_2020 in reply to Yorkiepudd]

Thanks very much, Yorkiepudd, for your reply. appreciated x

[Mumsie13]

I agree with everything that yorkiepud has said. I can only emphasise, from experience, that it is so important to get those stomach muscles working again and follow exercises and advice physios give you. It's tedious but worth it. I don't know what your symptoms were but after debulking I felt such relief from the pressure and almost constant bloated feeling even with the usual aches and pains from surgery. Things will have been squished around a bit during surgery so it will take some time (months possibly) for your internal organs to settle, depending on how extensive surgery was. Personally, considering everything else I have been through, I found post surgical recovery one of the easier aspects when treating this disease in fact, after six weeks recuperation, I hadn't felt so well or had so much energy for quite some time. I do hope all goes well for you and good luck for the surgery, I'm sure you will do well. Take care. Jackie

[Newbie_2020 in reply to Mumsie13]

Thanks ever so much, Mumsie. So helpful to read Yorkiepud's and yours. Much appreciated to you, both.

My symptoms were similar to yours with constant pain needing pain killers every 4 hours. I was crawling from its intensity. In addition, to bloating which prevented me from eating as well, I also had a very squashed bladder with very compromised capacity. This also meant a lack of sleep going to the bathroom every half hour. Initially, I was very much hoping for the debulking surgery to get the relief.

The chemo has now somewhat looked after some of that and the pain has eased, thank goodness.

I am only hoping for more relief and no complications. Yes, I promise, for sure, that I shall follow all the instructions that will help.

Still fearing swelling, oedema, hernia, adhesions et al which I read about on a separate post related to omentectomy which is also going to be the case for me as it is loaded with caking.

Take care and keep very well.

[Mumsie13 in reply to Newbie_2020]

Yes, I replied to the post you mentioned so you will know that I am living with some of the conditions you fear but I do mean living not just coping. The most devastating thing was when I realised I was going to have to have a stoma which I was never meant to have but I am grateful the colostomy saved my life. Even with this and some other conditions my quality if life has changed very little. Only Covid has put a stop to my galivanting. I even still wear a bikini ( hate one piece cossies) - ok I have to wear high waist bottoms; they are fashionable right? I couldn't give a toss about the scar. My point is things may not always be as bad as they appear to be and somehow, we always seem to find a way to live with these conditions and find a good quality if life. My other piece of advice is don't borrow trouble. It's good you are asking questions so that you can be prepared as much as possible for whatever the outcome is BUT these things may never happen. I sincerely wish you all the luck in the world and I feel sure you are strong enough to push through whatever the outcome. 🤗

Jackie x

[Newbie_2020 in reply to Mumsie13]

I am very grateful for all advices so to be prepared. I am also very grateful for your well wishes.

Stoma was one of the things on my list but I didn't dare to ask as it is very personal for some. You are very brave and people like you who are a few steps ahead bring a better and positive sense of reality.

There are many similarities between cases but again Cancer treatment and responses to treatments are also very individualised. Thanks again and I hope you'll always be strong, happy and cancer free.

[Lyndy]

My experience was that it didn’t take long to feel that I was coping with the scar and weakness around my stomach area. What did take much longer was feeling that my muscles and organs were back to what they were. I was offered the chance to go to a physio session with other cancer patients at the hospital gym. They encouraged me to push myself a bit and to do targeted exercises to get fitness back xx

[Newbie_2020 in reply to Lyndy]

Thanks so much, Lyndy. You added another answer to one of my concerns and that was what happens to those organs when the omentum is removed. So grateful to hear that they tend to go back to where they were. I am taking it one day at a time and indeed if pushing myself is an option to get better, I shall do what you did and do my best to push xx

[HMS57]

Immediately post debulking surgery I was torn between wanting to push myself to do more, and having a good old rest Somewhere between the 2 is probably sensible!

They told me there was a risk of needing a stoma, which I didn't need in the end. I had omentum removal but I haven't had any side effects. I went into early menopause and, like Yorkiepudd, I had none of the traditional symptoms other than seizing up if I sit for too long, but regular exercise helps. I got a desk fan from work in anticipation of the hot flushes, but they never came.

I have a fine big scar but I've never been bothered about having it or hiding it.

Physically I found that as there were improvements week after week, it was quite comforting if that makes sense? It was like steadily climbing a ladder, whereas I found other treatments had more ups and downs.

I just did my best to follow the advice I was given in the hospital and keep moving, while giving my body a bit of time to get over the initial shock.

Best of luck. x

[Newbie_2020 in reply to HMS57]

Thank you very much for your reply. Loved the "ladder' analogy - Very positive and reassuring experience, too. Really appreciated x

[Kaitlinsmum]

Hi. I had the debulking op last November. It took about 4 months for my bowels to get back to normal. Immediately after op I found that peppermint capsules and tea helped with trapped wind that can be very painful. I have taken Movicol or similar to help with constipation. You may find it helpful to keep a diary of changes ect. Keep in touch with your GP who will be able to prescribe drugs to cope with most problems. Don't be worried about asking for support from medical professionals.

Like Jackie said, stay calm when reading posts on here. We all experience this differently. I had to stop reading for a while cos I scared myself. I would recommend finding an activity that distracts you. Good luck xx

[Newbie_2020 in reply to Kaitlinsmum]

Thanks very much, indeed. It is quite helpful. I love peppermint capsule and tea and luckily it is always available at home and will do a restock before surgery.

Indeed, it is very individual.

You have all been extremely helpful with your replies and gave me a good boost, too.

An added thanks for your well wishes xxx