JUST found this group. Glad I did wish I had found sooner. Had a lower anterior resection Feb 23. Hard 5 days in hospital left with ileostomy. As this was unexpected I had alot of trauma. I have an amazing partner who changes the bag for me as my phobia of wounds is pretty bad. Cancer wise all looks good for no spread and no radiation or chemo necessary.
I'm scheduled for reversal on May 18 and the online horror stories are making me anxious. I believe my cancer was where the rectum and colon meet so higher up. But there were complications. I wasn't informed that being fat would be a complication but it was.
So they said they took more than they wanted? Information is unclear and spotty.
What are some good questions to ask surgeon? Regarding upcoming reversal. Ie what might affect my outcome?
If you had this surgery anything you wish you asked?
Anyone have good ileostomy reversal stories? Anything that made it better.
@Keirandyl Hello and welcome from BC! So glad you connected with us…and already posted your first message……
We are all here, to listen and share and support each other! (Check out the Colorectal Cancer type/under Forums…to read, of others' experiences.)
I too am on the Colorectal Cancer Journey…..I had an Ileostomy (planned)…and I had the Reversal too.
I will answer your concerns, to the best of my ability ( and remember….I am no Doc…..which is a good thing; scared of my own shadow, let alone the color Red !!)
I too had the L.A.R. Surgery (Lower anterior resection)…..had the Ileostomy for 6 months……and the Reversal followed. I did have Radiation, beforehand.
My tumour was 3cm in size…."down low" - “down town”….not a great location - No Parking!
This meant, that the “reconnect” (put 2 ends back together) was “low”…..I heard that anything above 5cm from the anal verge, will make recovery/post Reversal, easier. I heard, that anything below 5cm from the verge…makes recovery more challenging. I am in the challenging section.
You shared “information was unclear and spotty”…..so the FIRST question, you should ask the Surgeon….is for clarity…..on what exactly happened? Was my surgery done my Laparoscope? Did Surgeon remove ANY Lymph Nodes? (To check - just in case?) What stage was my Cancer? How big was the tumour? Did I have a tumour? Did you “scrape” only cells? Why was my “Fat” in the way"? When do you plan to schedule my Reversal? Will you do the Reversal, completely at the “Stoma Incision?” (ie no new incisions?") How low was my Reconnect? How close to the Anal Verge? How do you see my recovery, post Reversal?
I WISH I had asked to see the Dietician from Day 1. They are a wealth of knowledge and can best support you NOW….with best food choices, with Ileostomy…and post reversal…..(ie now; no nuts…no seeds….no skins of grapes, apples, etc)…..Connect with the Hospital Dietician.
Did the Ostomy Nurse provide you with lots of samples? Accept them all; these products are quite costly……It is wonderful, your partner is changing the bag…..will you get a Home Care/PSW/Ostomy Nurse to teach you-both-at home? In Ontario….we get about 5-7 home visits/lessons….they are helpful too…they can show you where to order your Ostomy Needs…..
My reversal was 3 years ago…..2019……(time did fly???) I had some “where is the washroom moments!”….yes…..but over time….things did settle…..WITH the help of eating the “right foods”….focusing on smaller meals, learning what works with your “new colon”…..
Meta Mucil is my go-to product (post Reversal)….it helps to “form” the stool ; less loosey goosey!! Immodium helps too…
I want to “hold”, to not overwhelm you…..but want to Welcome you with open arms here….we will all support you….
I will send you a private message…with info on a Support Group - JOIN US!! MAY 15th next virtual meeting….we can WAVE !!!
I have some Ileostomy Tips……more to follow…..
I have more Reversal Tips….more to follow…..
Again…..to give you time…for all this “info”.
Ask anything: I no longer blush!!
@Keirandyl Hello Keirandyl……How did your Ileostomy Reversal go on May 18th?
How is your healing?
Has “new colon” settled? I found that Meta Mucil HELPED so much; simply by “forming” the stool…..less loosey-goosey….and of course, eating the “right” foods….which may simply be - trial & error….
Any questions? please post…we will respond.
Surgery went well. Recovery was a bit harder as lots of nausea, acid and the food was unpalatable.
Was able to leave 3rd day and finally start recovery at home.
Loose stools first few days and severe acid reflux. After taking tums and then pepcid acid was reduced and now I am pooping less often. A little concerned as I'm not getting alot of volume. But I pass gas and some poorly formed stool.
No pain except at wound site is tender.
Taking it day by day and low residue diet.