Last week I went for my post surgery check up, it was 10 weeks post op and I was feeling a little nervous. Timm and I went to the Hallamshire to meet with Mr Brown, my consultant. He came into the room, looked at me and said “Mrs Cleasby?!” He looked at his notes and said “3rd September? How are you?” I replied that I felt great. He was genuinely shocked and said I looked a lot better than he would expect someone 10 weeks post colectomy to look, which was a great boost!
He went through my histology which as predicted showed severe ulcerative colitis through my large bowel, but nothing more sinister. We also chatted about a few problems I have had, my hair is falling out by the handful which has been quite alarming, Mr Brown says it is a result of just how poorly I was before the surgery. Im also having a few problems with my joints, especially in my hands, they believe this will go in time and again is a consequence of the ulcerative colitis.
I rocked my gold boots at the hospital – why do I feel the need to dress up for the consultant?
I am feeling great right now, Im pretty much recovered from the surgery and getting used to my ileostomy bag. I have had no leaks for weeks since finding the right bag for me (still using the dan sac nova 1 easifold convex) and I have been swimming, walking, going to the gym and even been to a spa. I was really nervous that the steam room or sauna would cause my bag to just peel off but I had no issues at all!
I had my first communal changing room experience with the bag. As most women know, the communal changing room is a fearful place. There is always someone with a really hairy fanny that has no problem in drying themselves with one leg on the bench, there is always a super skinny woman with pert breasts proclaiming loudly about how terrible she looks in a bikini and the rest of us just trying to dry off and get dressed under a towel without making eye contact with anyone else. Well I was nervous and initially went into the loo to change. I emptied my bag and checked there were no leaks or any problems and then I decided to bite the bullet and change in the communal area. After drying and putting on my underwear I realised I could do with blasting the bag with a hairdryer so my clothes didn’t get damp. And I did it! I think I got a couple of people having a sneaky glance, which didn’t bother me as it was more curiosity than anything else. I helped that I was with my good friend who always boosts my confidence.
Anyway Mr Brown and I talked about how I was getting on with my ileostomy and what my options were to move forward. My options are that I can keep my ileostomy bag permanently – this would require a further surgery to remove my rectum and anus giving me what is known amongst ostomates as “Barbie Butt” as there is nothing left there!!
My second option is to have pouch surgery. Pouch surgery is also known as ileo anal pouch or j pouch surgery. Surgeons will form a pouch from the end section of my small intestine that is then attached to my rectum. Another ostomy will be formed whilst the new pouch heals, then in another surgery that will be removed so I would have no external stoma or bag and I would be able to poo in a ‘normal’ way.
There are pros and cons to both options and my answer to Mr Brown was that I just don’t feel ready to make a decision yet. He is happy with this and gives me 3-5 years to make the decision! After this time my risk of cancer and other problems in my rectum and anus increase and so they like to have a decision by then. I have arranged another appointment in six months time and hope to have made the decision by then.
I really don’t know what to do for the best. Part of me really doesn’t want to have a bag for the rest of my life but I kind of feel like ‘better the devil you know’ – there are quite a few possible side effects of the surgery that don’t sit well with me. I am just so undecided right now that I think it would be silly to try to make such a huge life changing decision right now. Ill look into everything in the next few months and see what I think.
Life is busy at the moment, business is booming and I am planning for our family trip to Vietnam and Australia! We are going for almost 6 weeks to visit my sister and have a bit of an awesome adventure! Ive spent a lot of time researching travel with an ostomy and feel pretty organised and confident that all will be well.
Love Sam xx