APR AND PERMANENT STOMA

I'm just over 12 months post APR for reasons similar to yourself, T4, N1,M0 at diagnosis. I was fortunate to have the robotically assisted surgery.  Recovery takes time and patience but you will get there and it will be so worth it to be rid of the pesky invader.  

Hi Angeline many thanks for your reply. Could I ask how you got on with sitting? I’m hoping to go to family in Vancouver,9 hours flight in June so only 3 months? You’re so right about a pesky invader

Sitting took a while to be honest.  I had chemoradiation earlier in my treatment plan and was aware this could affect healing of the bottom wound. I didn't even attempt   sitting for around 6 weeks and then tentatively built up from there. Initially, I would just be either side lying or pottering around as much as I could tolerate.  It was frustrating at times but worth it to allow healing of that delicate area. Of course, everyone's different and I had a plan to be very cautious and did heal well overall so it worked for me.  I still use a gel cushion  sitting for longer periods whilst at work and think this will always be the case as the area remains sensitive, but that's ok in the great scheme of things I suppose.

Thankyou so much. Your reply is really help full. It’s a case of managing expectations isn’t it. And I now have a better picture of how it will be going forward. Thank you

Thank you for your post in the other thread. I was feeling very aggrieved that I had the recurrence after the papillon treatment , feeling why did I have to be the 1 in 4  But you’ve come through it too and your outlook is great.  Best wishes as you go from strength to strength

Well the day is finally round the corner. I’m trying to be positive ( while drafting email to son about where financial stuff is) I’m seeing the stoma  nurse for 1st time on Monday ready for op on Tuesday. Is there anything I should ask? I know it will be on the left side and I’m a bit worried about sleeping as that is my preferred side. Any replies greatly appreciated x

• Hi Elijahs nana, prior to my surgery the stoma nurse marked the skin where she thought was the best location for it.  It's to avoid things like skin creases I think. Like you, I also favour my left side for sleeping and still do, it's really not a problem. Once the stoma settled and with support from the nurse, I found a bag that works really well for me and I'm thankful for that.  I'm sure you will be the same, becoming expert in managing your own stoma and before you know it, getting on with life.  Good luck and best wishes for Tuesday, will hopefully hear from you on the other side of surgery once your feeling up to it.

Thankyou Angeline I appreciate your support 

Hi Elijahs nana 

I think the main thing in regard to the siting of the stoma is to try and not have your waistband cutting across it so if you’re a jeans person then maybe wear them to the appointment to give them some idea? I also slept on my side so invested in some ‘big Bridget knickers’ as they felt to support the bag better and I also folded up a towel and put it under the bag so it didn’t feel to be hanging?

Hope it all goes well

Take care

Karen x

Hi Elijahs nana 

I only sleep on my left side and find this no problem at all with my colostomy bag there. I just make sure it’s empty before I go to sleep. 

Hope everything goes well with your surgery.

Sarah xx