Post surgery pain (anterior resection and ileostomy)-what is typical/atypical?

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Hi All,

David here and I was just discharged from hospital post-anterior colon re-section with my sigmoid colon removed. Just a bit of history but was diagnosed in May 23 with S3, N1, M0. Had neoadjuvant chemo-radiation, then chemo (4 cycles of oxiplatin, daily capacetibine tablets 3 weeks on, 1 week off) I did have a bowel obstruction from the tumour after the 2nd cycle so had an emergency colostomy although they left the remaining tumour intact. After a three week break, resumed chemo for the final two cycles. Post chemo very happy to say I had a complete response with no MRI/CT tumour present and, so far, no metastases.

I tolerated the therapies generally well, although have developed some 'coasting' peripheral neuropathy in my feet and hands which is annoying but fortunately not painful.

At any rate, had my surgery (with a temp loop ileostomy and colostomy de-functioning) on 9 Feb which went well but has been, so far, a tough recovery although seems to be heading in the right direction. I was discharged on Monday 19 Feb and had been gradually increasing my food intake but very careful to follow ileostomy advice around diet. Last night however, developed much worse pain both in my abdomen and groin area. (To be blunt, pain in my penis although not when I urinate.) Somewhat manageable with tramadol/paracetamol. Additionally, I was afraid that I may have developed a blockage as no output overnight although had some slow progress there since this morning. I've eaten a very small amount today but am fortunately not nauseous or vomiting.

My question is therefore to hear if anyone in the community with similar surgery has found this recovery to be tough with a few false starts? If you follow correct diet advice, how many had blockages develop during this recovery stage? In hospital, after slowly eating had to go on a drip as just could not eat at all and barely drunk water. That improved from last Friday until discharge on Monday. I realise it's only 2 weeks since my surgery but feel that for every day forward is sometimes two back. The groin pain is a a new one for me that just seemed to come out of nowhere..

Any comments would be appreciated.

Thank you and to Macmillan for this wonderful community!

Kareno62 over 1 year ago

Hi David RL If you click on my name you’ll see that I had a bit of a tricky recovery. Blockages are not the norm and should not be ‘expected’ during your recovery. I may be being over cautious but I would be tempted to ring the ward that you were on - I was told that they were the ones to contact about any issues within 2 weeks of discharge - and run it past them? If the pain continues or worsens or if you start to vomit then I would suggest going to A and E just to get checked out?

Please let us know how you get on?

Take care

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

David RL over 1 year ago in reply to Kareno62

Hi Karen, Thank you for your reply and having ready your profile sorry to hear you had such a rough time! That being said, cancer free after 5 years is a fantastic result and congratulations

I rang the CNS colorectal service earlier today and am awaiting a call back, They have been fantastic during the various parts of my journey. As you said, better to be safe than sorry and this one has been tougher than all my other treatments/hospitalisation so far. I may have simply eaten more than I should have yesterday so lesson learned and ate a lot less today and seems to be a bit better but will see.

Of course if I do vomit then realise that's probably the strongest indication of a blockage so will definitely head to A&E if that happens.

Thank you again and will update here soon.

Kind Regards,

David

Dulac over 1 year ago

Hello David RL,

I have a temporary loop ileostomy (likely to remain permanent by choice), plus a colostomy which is inactive. I haven't experienced pain as such but had several occasions where there was an ache in the area of the ileostomy and discharge was quite slow. I put this down to a blockage and it became apparent that certain foods were indigestible. I avoid them now. However, early on I had an occasion to go to A&E because of the discomfort and shortly before going a number of spherical, hard objects were passed via both the ileostomy and colostomy. They were much the same size as a Malteser and I believe there were nine in total. I managed to retrieve one and crushed it to reveal fibrous matter bound together to create an almost perfect sphere. One of the A&E team believed it was the residue from my bowel contents and he explained that it was likely the surgeon could not thoroughly clean out my digestive system during surgery. Bowel prep never works properly on me! In each case the discomfort diminished and rarely happens now. When it does I drink fizzy drinks (my stoma nurse suggested 'full fat' cola) and I take a walk and then lie face down on the bed to let gravity take its course. For me it works well and the problem clears every time.

Curiously there seems to be a link between the ileostomy and the need to pee, the latter working much better once the ileostomy has cleared and the pouch drained. Goodness knows why this happens, but it does virtually every day. I don't suffer pain in the groin area but still - after two years - get a burning sensation on my skin at the very base of my spine which I can only attribute to radiotherapy. It is like sunburn and E45 cream does the trick straight away. This happens perhaps every couple of weeks.

For all this I suggest that you should visit A&E if you cannot tolerate your symptoms, but try to visit on a weekday, during daytime, as I discovered that the A&E people are not well-versed on stomas and call upon the stoma nurses to help them. No-one is available after office hours or at weekends to offer specialist advice, which was a cause for concern.

Best Wishes

Dulac

David RL over 1 year ago in reply to Dulac

Hi Dulac, Thank you for your very helpful response with many useful tips for the ileostomy newbie! The colostomy I had from October through 9 Feb was much easier to deal with from the very start but am sure I'll be OK once I'm used to this too. It seems to have eased somewhat this evening and think it may have indeed been eating too much yesterday. As I said it's the first week back home so am probably over reacting a bit. Based on your comment around slow discharge and pain, I'll start to keep a food diary in case I have something similar happen again and perhaps identify if something does cause me a problem.

Very interesting regarding peeing and the ileostomy...never heard that before but is why this forum is very useful especially when starting a new therapy.

Kind Regards,

David

Dulac over 1 year ago in reply to David RL

David,

Because an ileostomy intercepts food waste before it passes into the colon (where moisture is extracted) the body doesn't get much time to process it. I find the foods to avoid are things like nuts, undercooked vegetables, sweetcorn, peas, potato skins, salad leaves, beansprouts, onion rings, etc. No doubt others on these pages have their own lists. It is something you will get used to from experience. Also, bear in mind that if you are on medication such as tablets then these might pass through you without being dissolved in your system - particularly those designed to be slow acting. Don't forget to drink plenty of water based fluids each day to help your digestion and to replace water lost via the ileostomy.

Don't worry about over-reacting; in such matters it is better to be safe than sorry!

Dulac