Hi all, I am new to the community. I was poorly last November with what was initially diagnosed as gastroenteritis, after 1 week I was referred for tests bloods and FIT test were positive for suspected cancer so was referred for colonoscopy and gastroscopy. By the time I had my investigations in December I had lost 2.5 stone, nothing found during the examinations but doctor advised due to my weight loss she wanted my to have a CT scan which I had a week later. No results until January but they found a tumour in my small intestine which they needed to biopsy to check if cancerous so referred me to the top guy who performs colonoscopy but can reach the small bowel which is not done normally as difficult to reach. This was booked for 26 January but unfortunately I became too poorly as was unable to eat or drink so a few days before I was admitted for emergency surgery.
The tumour was 70mm and had blocked my bowel and was removed but there was also a further 'bit' that was biopsied to see what it was. It was also the same cancer, carcinoma. I woke up from the surgery with an ileostomy which I struggled to accept more so than my diagnosis. I was then diagnosed stage 4. Plan was to remove the other bit in may but this was unsuccessful as they couldn't find it but did find nodules which were extensive so they took biopsies. Since then I was referred to oncology as palliative. My oncologist was amazing and confirmed that the nodules came back benign so he felt we were just dealing with the other bit of tumour which was microscopic and hadn't shown up on any scans since December. We discussed possibility of chemo but as I was recovering well I decided I would wait and he said I could be monitored 3 monthly with CT scans. I have just had my latest results which were still the same so next one in 3 months.
Sorry I have rambled on but my reason for joining is, I now face a dilemma of whether to have my ileostomy reversed. I have a high output stoma and taking maximum loperamide with quite a bland diet but still trying to introduce new foods and living a normal life, 2 holidays so far. I have accepted it for the fairly long term but have been told I could have it reversed and now unsure whether to go through more surgery.
Hi Albo2d62d7
I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi Albo2d62d7 and welcome to the group.
I’m sorry I missed this post when you made it, and I can appreciate that the thought of more surgery may be daunting.
I have an end colostomy, so will never have a reversal, but we do have lots of discussions in the group about the pros and cons of reversal and LARS. This is the link to the appropriate part of the group.
If you have a read through, you’ll see lots is members describing their experiences of this very personal decision on whether or not to go ahead with the reversal. Please feel free to connect with others who have been through this and I’m sure they will be happy to answer any additional questions.
Sarah xx
