Hi, I've posted a few times in the last few months to help me get through the difficult times while I waited for a date for surgery. It really did help to be able to communicate with a bunch of people who get it and have had/are having similar experiences.
I thought i would let you know what has happened in the last few weeks. I finally had my pelvic exteneration surgery on 4th March. It was a big op - I was in theatre for 9 hours and HDU for 2 nights. All aspects of the surgery went very well, I was told, and my post op recovery seemed to progress as hoped. Problems emerged as they tried to mobilise me. Almost every time I got up to a standing position I would come over all woozy and had to sit/lie down again. Occasionally I fainted. After a number of days of this it became clear that my blood pressure was dropping significantly every time I stood up. This went on for over 2 weeks before I was referred to the medical team who determined that I was dehydrated. After several litres of IV fluids the situation improved and the dizziness began to pass. I was then able to start mobilising properly. However, having had the op in a private hospital and having had the 12 nights there for which I was booked, they had to transfer me to an NHS hospital as my recovery was taking too long. I had had excellent care at the private hospital and I was sorry to lose that, but the choice was clearly not mine to make.
I spent a further 3 weeks in an NHS hospital with most of the focus on my mobility. In terms of the recovery from the surgery per se, there were no concerns or complications. As I began to regain some physical strength, other difficulties were emerging. The surgery had included having a stoma and, in short, my output was exceeding my input and there was a constant risk of dehydration. However, the more I drank, the more fluid I lost through the stoma and the greater the risk of dehydration! It was (and continues to be) an impossible conundrum! Added to that, was the difficulty I had with leaky bags. The stoma nurses were great and tried every bag and combination of accessories, but the high volume, watery output was making things very difficult for them to deal with. I was constantly told that it would settle down and the leakage problem would then sort itself out. It is better now than it has been but I'm not completely leak-free. I'm better at catching it early now, which helps!
I was finally discharged from hospital last Saturday as it was decided that staying on there was really not improving the situation. I was, and am. elated to be at home after 5 weeks and 2 days in hospital! The output/input issue continues and I drink only St Mark's solution and a max on 2 cups or tea per day. I am on max dosage of loperimide and codeine, but it seems to make little difference. I follow all the 'rules' and advice re diet but the consistency of my 'output' is still a problem.
I'd love to hear from anyone who has any suggestions that might help with this. I'm sure I'm not the only one who has had this problem!
Overall. I'd say I'm doing well! I'm home and I've got my partner's unstinting support. I am able to move about independently a bit more every day and starting to do some bits and pieces around the house. I'm able to sit for longer periods of time after the surgical reconstruction (it's uncomfortable but manageable) and I am in very little pain.
I've got a way to go yet and some issues still to sort out, but as far as I know the cancer has been successfully removed and I will be fully well again in time. I feel extremely privileged to have had the amazing skills and experience of the colorectal and plastic surgeons and their fantastic teams available to me. I will always be deeply indebted to them and to the NHS.
Thanks to anyone on here who responded to my previous posts. Your support really mattered to me and helped a lot.
So pleased to hear you are home and delighted to be there . It is such a big surgery and it’s always great when people come back and share their experiences. You have endured a lot though with great courage ! I have linked in the ostomy groups , although it’s a bit quite at the moment it used to have a wonderful Community Champion and he knew so much about the subject . I thought you might like to look back at some of the previous post to draw some information from there . We are really do have some great people willing to contribute here and it helps to reduce fear and isolation.
I am just delighted to hear from you after you. I had wondered if it had gone ahead after the delays and cancellations.
Hopefully others will be able to answer your questions here too but I thought I would link the other forum in for you in the meantime.
Take care ,
This was an example of some of the discussions they have over on the ostomy forum . I personally know nothing as my mum had a tumour on her right side but it might be worthwhile posting there .
https://www.bowelcanceruk.org.uk/about-bowel-cancer/treatment/surgery/stomas/Bowel cancer U.K. suggests contacting your stoma nurse for guidance.
Where did you get your surgery done at I had stomach bag years ago but it only ever leaked at night time and was more full
of gas maybe try different type of stoma bags
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