I had my large bowel removed in 2014 due to FAPs and had a temporary stoma, a year later it was reversed and I now have a J Pouch. All was going well till late 2020 when I started to use the toilet more especially at night. In September 2021 I phoned to make an appointment to see my surgeon as it was getting that bad I was only getting 2-5 hours sleep a night. I discovered my original surgeon was retiring so was put under a new consultant. In the last six months I’ve had an MRI scan, a pouchogram, a CT scan and. CT PET scan. They’ve found that I have a stricture as well as a desmoid tumour so I was asked at the end of January if I wanted a temporary stoma again to give me some relief which I agreed to. My new consultant then went on maternity leave so I was made an appointment to see my original surgeon on the 1st March. He explained about the op and told about the surgeon who will be doing the operation, which he said would be in “4 weeks or so”. After 4 weeks I hadn’t heard anything so I emailed the consultants secretary for an update. She told me to new surgeon was now on long term sick. I was that few up I made a consolation as it had been dragging on for so long. I’ve now been put under a new surgeon but still have to wait till the 9th May to see him and god knows when the operation will be.
My problem is whatever I eat, it could be just toast, soup, plain chicken I end up on the toilet constantly. I’m getting on average 3 hours sleep a night and I feel knackered all the time. I take loperamide, usually 18 a day but they don’t seem to do anything these days. It feels like it’s ruining my life as I can’t go anywhere, have had to cancel a holiday and barely get round Asda to do the shopping without needing the toilet.
Has anyone else had this?
Hi and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I'm sorry to read about all the problems you've been having and I hope this is resolved soon.
The online community is divided up into different support groups and I don't want to presume that because you mention having your large bowel removed that it is bowel cancer that you have. If you're comfortable telling me the type of cancer you have I could provide you with a direct link to that group where you can ask questions, share experiences and get support from other others with the same type of cancer.
Alternatively you can look through this list, choose the appropriate group and then join and post in the same way as you did here. You can also join in with existing conversations by clicking on 'reply'.
It would be great if you could pop something about your diagnosis and treatment to date 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.
If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi
I've just looked up FAP on the Macmillan site and as it says it's a pre-cancerous bowel condition I think the best group for you to join would be the bowel cancer group.
I have searched the group for previous posts which mention this condition and found a few so you should be able to connect with others there. Clicking on the link I've created will take you over there.
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
