Recent Diagnosis, upcoming surgery.

Good morning.everyone and every operation is different so we can only say how we got on.

I had a total panproctocolectomy by single port laparoscopy.so very few stitches just a couple in my navel.I was on hdu for less than one day and had very little pain.they do offer lots of pain meds if needed so dont worry about that.

My main problem was where my anus was removed (it took 6 weeks to heal up)but you sound as though you wont be having that.

All the best for friday.do get up and about as soonas they let you as that helps

Kath

Ps dont forget to pack an extra long charging lead for phone etc.

Hi Kath,

Thank you so much for this.  I hope you’re continuing to feel well and have adjusted to your new normal.  

Thank you for reassuring me regarding the pain relief.  The surgery can’t come quickly enough now, fingers crossed I should be home for Christmas and then can begin to recover and prepare myself for any chemotherapy should they go down that route. 

Hi Craig

I had surgery a month after diagnosis, back in May '19. Likewise, it was very fast moving, & with all the heaps of information beforehand - it was all very difficult to process - & obviously alarming. I remember my feeling at that time, was akin to 'a rabbit in the headlamps.'

Mine was also Keyhole surgery; but they always warn you of the possibility - that that could change to more invasive surgery; plus the possibility of a Stoma.

Fortunately, mine was carried out minimally - & I remember patting my stomach after the OP; & felt no Stoma there.

I had four small entry points - that healed quickly. The largest being the belly button - which was no longer central - & had moved to the left. (However, it went back centrally after a few months!

I was taken to a general ward straight after the Op. & was incredibly dopey after the GA wore off. I was on a catheter, & a Fentanyl drip for two days - which obviously numbs the pain a lot. They encourage you to get up the next day - if only to sit in a chair, while your bed is changed. Following that, I walked to the loo - with a walker, & all the drips attached.When these were removed, I was offered Paractemol every few hours - but I didn't find I needed them much.

The staff like you to go for a poo before you return home - & I left three days later.

I live alone....but I managed the stairs to go to bed, & then a friend came by to shop for me for a week. Thereafter, I started walking outside & getting small shops.

A week later, it was my 70th birthday - & friends came, bearing Champagne. It was a lovely day.

Basically, I found the recovery very easy.

I very much hope that will be the same for you. Best wishes x

Hi Craig123 

My pre-op appointment was about 1 week before my surgery. During the appointment I was diverted of for a very informative session with stoma nurse. They measured and tattooed me as where the exit points would be for temp and perm stomas. I remember getting home and looking in mirror at the tattoos. It was emotional but all very helpful to start to get my head around it.

My surgeon during surgery decided reattaching remaining bowel parts was worth a try, so i awoke to no stoma. For me it was quite painful and recovery slow with prolonged stay in hospital.

Each person's case is different and each body can react in some many different ways. I'd recommend talking openly about any concerns to your nurses and consultants as they can reassure you that you're in safe hands with them. This is includes even on the day of surgery.

Good luck for Friday.

Hi Marianne,  

Thank you very much for replying and I’m really pleased to hear everything went so well for you and you were able to enjoy your birthday celebrations with a bottle of champagne.

You have described exactly what my surgeon had explained to me, hopeful of doing the surgery keyhole with the caveat of moving to open surgery if he needs to and hopefully aiming to reattach everything with the caveat that if he’s not completely happy he’ll either give me a stoma or colostomy.

i really appreciate you explaining the post op experience, I fully accept everyone is different but it’s nice to get an idea of how it went for others.  If all goes well I will at least be home for Christmas. 

Hi,

Thank you for sharing your experience and being so honest.  I’m sorry to hear your recovery was painful and slow.  I sincerely hope you are well now have recovered well in time.  Thank you for the advice about asking questions.  My lead nurse has been absolutely fantastic so far and answered most of my questions before I even asked them.  I’m very grateful for the amazing support I’ve had to this point.  I’ll no doubt need plenty of reassurance come Friday.  I very much just want to get the operation over with now so I can start to process and realise what my recovery looks like.

Thank you again for the advice. 

Hi Craig123,

I had my bowel resection in July last year. I was actually wired up with an epidural for use post-op before being put under. My surgery started off key hole but I ended up being opened up. Fortunately, I did not require a stoma as my bowel was stitched back together. I spent the night of my operation and some of the following day on HDU before being transferred to a general ward. My pain, on the whole, was well managed. The worst thing for me, bearing in mind they had sliced through all my stomach muscles, was trying to get out of bed for the physio about 12 hours after surgery! Hurt like hell but did get a little bit each time thereafter.

The other thing is trapped wind. Starting suffering from that about three or four days post-op. Not a lot they can do other than green tea!

You may also have to self-administer medication from hypodermic needles into your tummy, that starts to hurt after a couple of week’s worth of doses.

But follow the medics advice and you should heal well.

All the best.

Maninbath

Hi Craig 123

I had 67% of bowel taken out at the end of May 2022 and appreciate all the same concerns that we all go through. But if you search for my other posts (Bowel67) since I joined this excellent site you will see that in my case I have managed to stay positive. As is said you are happy/reassured if the cancer hasn't gone into other organs or parts of the body. I had been warned along the lines of the growth was so big( a spare tennis ball with feeding veins) that they could not guarantee that it wasn't in my liver etc and the surgery could be more extensive. It was always on the cards that I was going to get a two pack abdomen instead of the previous one pack and potentially a stoma (temporary hopefully). 

Fortunately the surgeon said that the Big C hadn't spread - apart from the surrounding feeding veins with microscopic cancer cells) - and all I got out was the 67% of bowel and all the lymph nodes. Again fortunately the surgeon did a marvellous job and was able to staple my remaining shortened bowel parts together  - so no stoma (my worst fear) - and the chest to belly button opening was "miraculously" glued together so no stitches. The wonders of science and the only thing I had to watch was the water in shower etc until the glue pathch etc was ready to be removed. 

Anaeshetist was great and got an epidural into the spine that numbed my lower half body. Ok you felt the pressure of the needle going in but there was really no pain - because of local anaeshetic before the main penetration. Funny thing was that while I didn't really feel anythign I noticed my toes curling upwards which was really strange. 

28 days self injection to prevent post op blood clots etc after release was my main problem being a needle coward.

However overall it is what it is and I am now onto to my penultimate session of chemo (8 sessions will finally end in January 2024 ) with an expected scan etc about two months later (when chemo has dissipated from my body - as it - and its side effects - accumulate in the body while your undergoing the treatment. As advised not had any hair loss and neither the forwarned nausia or diarhea but visits to toilet have to be undertaken as soon as you get the urge as opposed to pre-op you might have been able to put off the visit for hours etc. 

Worst side effects - experienced after sessions 1 &2 that were really non-distrubing - were and still are brain fog (even in the recovery week every 3 weeks) and balance. However these are not the worst which is extreme lethargy and falling asleep during the day if you sit down. Still I have found that you are best just going with it and telling the folks round about "it's just the chemo" and hopefully in March 2024 I may be able to get back to working full time. 

Ok I hope that this helps some to allay your fears and concerns - as I say it is what it is and we are the lucky ones where it is expected to be isolated in one place - subject to killing off the remaining little buggers of cells that inevitably were there to feed the tumour. 

The one tip I would say is watch your blood levels in your pre operation assessment - mine was down at haemoglobin 60 as the cancer must have been greedy and eaten it all up over the 11 months it took to get the explorations and finally surgery. I had to get 6 blood transfusions to get my levels up to over 110 and be able to get the operation. 

Like most  other posters my post op treatment has been excellent and went in 3 week sessions (two chemo weeks with 5,000 mg's per day and one week of "rest" from the chemo. Luckily I got to treat myself at home (saved 2-3 hours travel every day ) and at the beginning of the rest week I get bloods done at local GP on the Monday, results with oncology nurse for meeting on Tuesday morning circa 8:30 - 9:00am  and if all OK pick up my meds on the Wednesday to start back on the next two weeks on the Thursday. It is unbelievable that they manage to get the bloods to the hospital and results done so fast but they havent failed yet. Only slip up was where results for kidney function were a bit late but this was becasue the liver function had been affected and they needed to reduce the chemo to 4,000mgs a day. 

Ok feel free to pull my previous postings that might amplify my comments in this one. 

I know it is easy to say it in retrospect but it is what it is and trusting in your medical team will surely get you over any major fears and concerns. Most importantly I found that asking questions was well received by all and really let you lknow what to expect. Mind you don't do as I did when the surgical team ask you "if you know what you're in for today?" say its for a right leg amputation. The looks of worry on their faces had to be removed quickly by confirming it was for the Big C bowel operation and potentially other works. I just hope that they had a laugh afterwards. 

Anyway all the best for Friday and look for your positive additions to our communications with others - it certainly helps to talk!!!

Hello Craig,

The replies you have received to date brought back some memories! I spent 10 days in hospital recovering. No pain at all (morphine drip), not much sleep lying on my back. a couple of temporary drain tubes in different places (no big deal). I was aware that some alterations had taken place internally so I didn't get out of bed when first asked for fear of damaging anything. I have two stomas, the second being a consequence of scar tissue in the area treated with radiotherapy preventing an effective re-connection of the cut ends. It takes about 15 minutes every 48 hours to manage them and it doesn't take long to get into a routine. The worst bit post-op was doing the blood thinning jabs each day and these are quite important. Place your trust in the anaesthetist and the surgeon and you will be fine.

Dulac