Why medical staff all assume you want a reversal

Hi SaxonJus,  

I was diagnosed with stage 4 bowel cancer in March 2018 and ended up with a permanent stoma in July 2018.   Due to the low location of my cancer the surgeon was unable to get a margin and my lower bowel was removed.   The operation was done via keyhole and I made a quick recovery.   Since having the stoma, I have had no complications and been able to eat all my favourite foods without any adverse side effects.   When I was first told about having a stoma I was extremely resistant to the idea, however after having one for for a bit over 3 months, I realise it is not a big deal.

Many people are offered a reversal and most go through with the operation.  One man I know had a loop ileostomy, then a reversal and has had no incontinent issues.   The surgeon created a J pouch which stores the waste which means he has no issues with fecal incontinence.  

Another lady I know of, refused a reversal because she didn't want to have issues with incontinence as she has a high powered job involving lots of long meetings and cannot be running to the toilet numerous times a day.   Apparently the surgeons were pushing her to have a reversal and were not impressed when she refused.  

At the end of the day, it is really your decision as to whether you have a reversal or not.   If you like the idea of being able to go to the toilet as usual, perhaps you should enquire about having a j pouch when they do the reversal.  However, as I discovered, having a stoma is not the end of the world and you can still lead a full life.  

Kind regards

Rebecca.  

Hi Rebecca

Ty for replying.I find my bag no problem at all now.I change it anywhere if needed and used to taking supplies with me everywhere.

If it wasn't for my hernia affecting me id not even be seeing consultant.Its not just nurses/dr on wards thou even radiographer, receptionists all advise oh but your having a reversal?

Before i had a stoma i knew only my friends husband (aged 31 bowel cancer died 32) who had a stoma. Little public knowledge re stomas.I do feel its still a taboo subject....

I feel my hernia wont be repaired for a while if i say no to reversal...

Hi Rebecca

how are you doing? Thinking a lot about you ! How are you feeling after the liver surgery ? I am stlll waiting for scans in November after my chemo radio so not looking forward !! As I feel so well after chemo rad it is odd to go back to being "ill" ! May be an op may be not this waiting is bananas !! Love to hear from you and hope this message finds you well

lota of love Annie xxxx 

Dear Annie,  

Thank you for writing.   I am going fairly well, although the chemo is knocking me around.   The second dose had to be post phoned for one one week because my platelets and white cells were too low.   They gave me a reduced second dose and I had a reaction at 8 pm that evening.  

I saw my Medical Oncologist on Thursday, he wants to increase the dose; the higher the dose the more likely the cancer cells will be eradicated.  I am due to have my third dose tomorrow and am not looking forward to it.   The chemo therapy targets ALL the fastest growing cells in your body;  cancer cells are fast growing but so are many other and the treatment does not discriminate between the two.  I have my chemo therapy fortnightly, I sit in a chair for 4 hours then take a pump home for 48 hours; then back to the hospital to have the pump disconnected.  I have to keep the pump and port site dry, hence no showers until it is disconnected.  

I have been thinking of you and praying you will have a good outcome.  My scans were done almost immediately after my chemo/radiation finished which was not necessarily a good thing as it continues to work for a good while afterwards.    I hope your cancer has shrunk so you can have a less invasive treatment.    

However, if the worst comes to the worst and you need to have a permanent colostomy, I can assure you it is not that bad.  I am managing mine much better than I could have imagined.  It does not restrict my life or what I can eat.   I know of a lady who was given a temporary colostomy while the bowel healed.  When the doctor wanted to do the reversal, she refused; that was how well she had adjusted.  

I am sure you have a very good medical team and they will give you the best advice. although you need to do  your own research as well so you can make an informed decision.  You also may have the option of the Papillon treatment which is not available in Australia;  If it had been available here, I would have definitely followed it up.  

My chemo is due to finish next March which means I have spent a year of my life battling this cancer.  I have developed a fatalistic approach; living every day to the fullest, wearing all the beautiful clothes that had been hanging in my wardrobe waiting for a 'special' occasion.    I have always been a fan of Joanna Lumley; during my recovery I have been watching her 'Silk Road Adventure' and have become an even bigger fan.  Her style and grace are inspirational; she has become my style icon and every day I have been doing my best to channel a little Joanna.   

Sending all my thoughts and best wishes your way.   

Kind regards 

Rebecca.  

Hi Rebecca 

so good to hear from you ! I think about you a lot and how you are getting on. I am so glad to hear that you are doing so well despite the issues with the chemo .. was it an allergic reaction. ? It is so determined of you to go again for the higher dose so as to get rid of this little "bugger " more effectively !! I love the way you are so knowledgeable about the treatment and how it affects the cancer cells and the healthy ones .. presumably it is the affect on the faster growing healthy ones that makes us feel ill ? 

As you said it will be a year spent battling this disease for you and you have gone through so much but with a determined and upbeat attitude that I am sure has and will serve you well .. keep going !!.. I am willing you on with this chemo ! 

I love Joanna Lumley too .. so elegant and beautiful but characterful and witty as well ! exactly like I imagine you !  She used to be in very funny comedy about the fashion industry over here and was hilarious playing against type  I think your attitude on wearing your lovely clothes and just doing whatever you like is absolutely right and I am doing that too .. everything comes so acutely into perspective and focus when we go through something as life affirming as this ? We could all do with a little Joanna / Rebecca in us ! 

I am hoping that I have had at least a good response and hope I will have at least some options..  ..!. I'm nervous tho about the scans as you just don't know do you ? !  I know some friends on this forum who have had an excellent response to radio which has been so fantastic for them  .. it is now nearly 9 weeks after radio !!! And all my symptoms have gone .. sometimes I forget I am ill, I am bouncing around so much !  I hope I have options but I hear your wise advice on stoma and as my mum says "it is what it is" and "we will deal with what it is" she is very wise also and she, my family and people like you and others on this forum get me through every day ... I have met some special people on this forum and their wit, energy and positivity have helped me so much .. lots and lots of love Rebecca .. Keep it up and let me know how you get on with the higher dose xxxxx Annie xx 

Hi Annie,  

It is great to hear you are feeling so well.  After the chemo/radiation, I also felt better than I had in months; then I got a dvt which stopped me in my tracks.  For you to be feeling so well, you must have had a good response from the treatment,   When to they usually do the scans over there?  Mine was done a bit over a week from the end of treatment which I don't think was long enough.   

My third lot of chemo was cancelled today due to a low neutrophil count.   This seems to be a regular occurence.   The second treatment was postphoned for a week due to a low neutrophil count and now the third!   Neutrophils are the white blood cells that protect your body from infections.  The other blood test also showed a problem with the platelets.  Seems I am not behaving like the 'text book'  patient I had hoped to be.   I hoped to fly through the chemotherapy without a hitch but that doesn't seem to be happening thus far.  Was hoping to tick off another treatment today; that will have to wait until next week.  

My mother was also a very wise person, sadly she died of lung cancer in 2005 at age 72.   She had always been a tower of strength; wise and positive I still miss her greatly.   

One of the things Joanna said that inspired me was after she had watched a group of dancers.  She said that she would like to be a dancer in a next life, then drew herself up gracefully and said to herself 'walk like a dancer'.   Wherever I go, I try to remember her wise words and try to walk like a dancer.  

Having a life threatening illness can get you down and in the early days after diagnosis I had my share of them.   Thanks to Joanna, I am inspired to be the best I can be and make the most of every situation.   I have always loved clothing; and have a giggle and declare 'buying new clothes is my ONLY vice - ha ha!     I tend to buy quality over quantity; not being a fan of the throw away society I buy clothes that I can wear for years.  

I must head off,  I am thinking of you as the day of 'test results (reckoning) draws closer.  

Kindest regards and best wishes,  

Rebecca.   

Rebecca would love to hear from you ? Think of you often .. How are you ? Xxx Annie xxxx 

Hi Annie,   

Thank you for writing, I am sorry I have not been on the site in quite a while.  I have finished my chemotherapy; pretty grueling,  I had a lot of problems with my neutraphils and platelets being too low and many of my sessions were postponed.  My last session was cancelled because it would 'do more harm than good'.    

I have been left with neuropathy on my fingers and feet which is quite debilitating; I have been having trouble with my fine motor and mobility, not being able to feel your fingers and feet makes many things difficult.   I am hoping it clears up, but there are no guarantees.  

Currently I have a clot in my lungs which they cannot treat until my platelet levels return to normal; all fun and games!  

I have also had a devastating loss;  late last year; my beautiful son took his own life and I am still struggling to come to terms with it.  He was the youngest of my three children and the two of us have lived together for the past 19 years; I miss him every day.  

I often wonder about you and how you got on with your treatment.  I hope your treatment went well and you are on the way to recovery.  Bowel cancer is very treatable if caught early; sadly mine had reached stage four which made the treatment more difficult.

I look forward to hearing from you and what is happening in your world.  

Kind regards

Rebecca.    

Hi Rebecca ,

I had been wondering how you were getting on ? 

I am so very sorry to hear about your son . There are no words sufficient but I send my love at such a difficult time . I hope you are surrounded by love

You are in my thoughts ,

Love  Court . 

.

Hi Rebecca. Lovely so hear from you again but so sorry to hear about your son - you have had such a lot to cope with over the last year and I hope you have lots of love and support around you.

Chemo is tough and sometimes the side effects continue and can even get worse after stopping but hopefully things will improve over time. My feet are still numb and tingly although not enough to impair mobility but I find that reflexology sessions help which you could perhaps consider? I developed lung clots early on in my treatment and take an anticoagulant called apixaban for life - it’s a newish drug but not as limiting as warfarin.

Sending you a big hug and hope your doggies are looking after you

Take care

Karen x