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Post Surgery Pelvic Extenteration

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Leeby77
Post Surgery Pelvic Extenteration

Hi I am 11 weeks post surgery from having a Anterior Pelvic Extenteration, I have a urostomy but was lucky they managed to save my bowels, but I am having terrible problems and pain with my bowels since the operation. Can anyone else please advise if they had these problems post surgery, as its really getting me down and stopping me getting out the house. I had a scan and there is no kink in the bowel, but they are saying I have adhesions and no quick fix just trial and error with medication and diet. I just can't believe everything I have been through the last 18 months between treatment and this major operation and this is what is keeping me from recovering and getting on with my life.
Any advice would greatly be appreciated.
Thanks

noodlesdoodles

I really feel for you as you have had a long battle and a big op and will have been focused on getting over it. It is really frustrating that this is happening for you.  I have issues from a RH and I felt once I had the op I thought it would be onwards and upwards. I can understand when you say you just want your life back.

Have  you spoken to your CNS? They may be able to help? Some of the ladies here who have had the same op will I am sure be able to help.

I just wanted you to know I was thinking of you and hope you can make some headway. Big hugs xx

Petesdragon
Petesdragon's picture

I am not sure how lucky you were to get away with an anterior exenteration. They still take a chunk of bowel to make the ileal conduit so it sounds like you have scarring and adhesions there.

Those of us with issues with the bowel who have colostomies can control these kind of symptoms with colonic irrigation by putting warm water in the stoma. That s not an option for you so I think you probably need a low fibre diet at least for a few months until more healing has occured then proceed to something healthier over time.

You are best asking to join the advanced forum which is where the exenterates hang out!

Karen x 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

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