Post surgery .........update

[Eriksendi]

Well 28 months after my initial diagnosis, 26 months after my stoma creation for a bowel perforation and 2 years since my tah , I had surgery to reverse my stoma as it was constantly blocking due to a hernia. I’ve had 6 days in hospital after the surgery and I can’t say it was pleasant. I thought this one would be a breeze after the others but the pain from the open wound on my stomach is excruciating, my bowels are all over the place, thank god for Tena pants. BUT my last ca125 4 weeks ago had held at 10, 21 months after my last chemo. I am so grateful for this. Love and strength to everyone out there battling on 💕

[Bettyxxx]

Hi there love and strength to you too xx those early days post surgery 🙈 I remember it well passing wind both a blessing and a worry 😂. I haven’t had a stoma so cant understand fully but had part of my rectum removed for recurrence. Be kind to yourself and take it steady xxx i am 18m on mow and all good, and re CA125 long may it last xx

Love Diane

Xxx

[Jud15]

So sorry it hasn't been as straightforward as you hoped, but at least it's done. Onwards and upwards and great news about your CA 125. My gynae onc has okayed me being reversed in principle so am I'm seeing colorectal surgeon end of Oct. I also have parastomal hernia which is giving me trouble so 🤞.

Judith xxx

[Eriksendi in reply to Jud15]

Good luck with your reversal. I wouldn’t have had mind done if it hadn’t been for the hernia. I had a loop of bowel that had dropped down behind the hernia so was left with no option.

[Jud15 in reply to Eriksendi]

Thanks very much

[Coldethyl]

Well done on getting this far - it’ll take time for your bowels to get into a new routine so don’t be too upset by the accidents -hope your recovery goes well x

[Eriksendi in reply to Coldethyl]

Thank you. It’s the wound itself that hurts so much. They leave it as an open wound to drain and dress and pack it daily. It’s excruciating x x

[Coldethyl in reply to Eriksendi]

I had an abscess from blood thinning injections that was very deep and ended up with an open wound that they packed daily - it was painful and took ages to heal so you have my sympathy x

[Eriksendi in reply to Coldethyl]

Hurts much more than my scar from my big op!! District nurse won’t come out to dress the wound so my husband has to take me to the surgery. Let’s hope I don’t have an accident there!!!!

[Coldethyl in reply to Eriksendi]

While humiliating for you , it would serve them right- the practice nurse was lovely but at the weekends I had to trail to the hospital as the district team worked out of a room there at weekends / my own nurse wasn’t especially impressed by their standard of care !

[grammeejill in reply to Eriksendi]

I had an open wound after my debulking that I had to drain and pack many times a day. At times it was very painful. I said it was harder than the chemo and surgery combined to deal with that. Much love to you and, like me, one day soon you will mark on your calendar the day that it finally heals and closes up completely. Hugs!

[Eriksendi in reply to grammeejill]

Thank you, like you said mine is much more painful than my big surgery and trying to cope with a bowel that doesn’t want to work again is a bit of a nightmare x x

[Hidden]

Wishing you a speedy recovery, once you are home in your own bed you will feel 100 times better. x

[Seasun36-uk]

Hi Diane,

Just wishing you well. Read your profile. You’ve been through a lot & your bowels have been handled a lot, which they don’t like! Really hope they settle down soon & that you find some pain relief to help with the wound pain.

Hope this sunshine cheers you, if it is out where you are!

With love,

Linda xoxo

[Eriksendi in reply to Seasun36-uk]

The sunshine is lovely here today so at least I feel cheerful even if my bowels feel like there is a hurricane going on!!!

[Maxjor]

I know ladies on here tend to want as little medication as possible but why can't you ask for something stronger for the pain? I hate to see you suffering and its not forever but boy when I take it, that "edge" comes right off and I don't feel the pain hardly as much. It makes sense to leave it open to heal but what about the patient?!!!! I wish you a speedy recovery and that the pain gets better daily. Thinking of you! oxoxoxx Judy

[Eriksendi in reply to Maxjor]

Thanks - I can’t take tramadol or morphine as they make me hallucinate - spiders 🕷 everywhere normally!! I’m on oxycodone which I think is quite strong so just hoping it starts to ease soon. Trying to avoid codeine/codeine based due to its constipation effects. If there’s anything else you can recommend would be grateful.

[delia2]

Hi. I’m sorry the surgery is so difficult but it will get better and you are almost two years ned!!!!🌻🌸🌼

[Eriksendi in reply to delia2]

Thank you. I am very grateful for my time Ned and I do appreciate how lucky I have been. I guess I thought this one would be easier but it definitely isn’t. Bowels ...... I hate them!!!!

[delia2 in reply to Eriksendi]

I know and I didn’t mean to downplay your miserable pain right now. I barely avoided a colostomy in my debulking surgery and fear it’s in my future because I have pain where my tumor was embedded in my sigmoid colon. Having a scan next Tuesday. I do hope your wound will start healing and get less painful soon!

[Eriksendi in reply to delia2]

Good luck with your scan, hope all goes ok x x

[Maus123]

How are you feeling today, Diane? Wound getting any better? It's literally a pain, not being able to take some of the stronger medicines (in my case, my body doesn't like Oxycodone at all.. causes nausea and constipation to no end).

Hm I'm no medical expert but is it possible to get an epidural pain catheter in even after surgery, for some relief? I had it for my second laparotomy and it was a blessing.

Hope you feel a little better every day. And I sign that statement.. bowels, I hate them. xx. Maus

[Eriksendi in reply to Maus123]

Thank you for thinking of me. No I’m still in excruciating pain. Went to hospital walk in centre to get the dressing changed yesterday and although the wound looks okay it’s oozing so funny coloured gunge. They said if no better should go to a and e so that’s where I’m off to today

[Maus123 in reply to Eriksendi]

Ack. Good luck today! Hope they can speed up the closing of it. How about Fenthanyl patches for the pain?

[Eriksendi in reply to Maus123]

Our local a and e were amazing. Bypassed a and e straight into surgical assessment unit. Surgeons assessed, trapped fluid under wound. Dug about, released, washed and re- dressed. Bloods all good, so hopefully should start to feel a bit better soon.

[Artgreen]

My God you’ve been through it. I’m glad you got some good care today and I really hope you start feeling much better now. I guess it’ll be a while before the bowel settles into a routine. It seems unnecessarily hard to have to visit your nurses for dressing changes. Is there no way you can ask for them to visit you as you are feeling so unwell?

Sending love and strength

Alex x

[Eriksendi in reply to Artgreen]

I did ask but because I am not housebound (I have a husband) I have to visit them.

[Artgreen]

That’s unacceptable if you are in excruciating pain. I wonder if you feel up to mentioning this to the CQC or saying that you might? I can complex understand if you’d rather not. But this seems extreme and quite cruel. Sending love

Alex x

[Eriksendi]

Thanks to everyone for all your comments and advice. I finally felt the pain was marginally better today and have started to eat some very small meals. Bowels still uncontrollable and the good old Tena pants have saved a few nasty accidents in the night!!!!