How do you make a decision that decides the rest of your life? An impossible decision.
I’m now over a year post-op (time flies when your life isn’t controlled by a toxic mega-colon) and I’m at the stage when my surgeon is hovering over that scalpel again. My first surgery was a subtotal colectomy that took out my toxic colon but left my rectum (Ew. Cringe Word.). Subtotal colectomy’s are the most common first step, with another one or two surgeries to make the bag permanent or opt for pouch surgery.
This feels like being between a rock and a hard place.
When going for pouch surgery it’s typical for the surgeries to be split into three. First being my subtotal colectomy, the second is to form the internal pouch. I would have a loop ileostomy as opposed to my current end ileostomy. The loop ileostomy diverts waste into a bag while the pouch has time to heal. The final stage is to close up the stoma site, reconnect the bowel, allowing me to use the internal pouch; essentially making me look ‘normal’ from the outside. I wouldn’t have my intestine poking through my abdomen anymore or bag, and would go to the bathroom in the same way to everyone else (with slightly different plumbing).
These are some of the things I have to consider when making this choice:
- Hospital and Recovery – I’ve already spent more time in hospital than your average 90-year-old, and having one surgery at 21 feels like one too many, let alone three. Being in hospital feels like someone hit the pause button on life and it doesn’t go back to normal as soon as you get home. I needed two months to recover just from medication therapy after my first admission and nearly five months recovery time for my surgery. The recovery rates for both surgeries differ person to person; it depends how strong you are going in, whether it’s done open or keyhole, if you get a post-op complication and how the body reacts to each one. On top of all that there’s a risk the pouch might not work, and my quality of life could be worse than my colon days. Again, it’s down to the individual but that’s ANOTHER surgery on top of the initial three, more recovery time and I’d still have a stoma.
- Bag Changing – See Video Below! Warning: You will see my intestine if you watch this. Every day this adds about 3 minutes to my daily routine if stoma is playing ball; if she doesn’t play along it can be anything from 10-20 minutes. There have been many mornings when I’ve been late to a lecture because I was re-washing my right leg and didn’t factor in the extra 20 minutes of me and stoma having an argument! Plus, I’m not sure how my lecturer would react to: ’’I’m sorry I was late Dave, but I had poo all down my front this morning’’. Not having to do this everday would be a bonus.
- Fertility – (Note: The docs have to tell you this info just in case. It doesn’t happen to everyone. This is just my research and what my docs told me). With pouch surgery in particular, there’s a lot of faffing around my pelvic area. The additional scar tissue could leave me with difficulty having kids in the future.
I can only just about book my own doctors appointments instead of making my mum do it, so it’s safe to say kids probably aren’t a good idea right now… However, this adds to the weight of the ‘stoma vs. pouch’ decision. To be on the safe side, I always knew I would freeze my eggs regardless of what surgery I decide. This includes tests to see if my eggs are worth freezing in the first place, then the standard procedure is to have injections to stimulate egg flow and collection is done via a needle (lovely.). Typically eggs are frozen for around 10 years. I did a fair bit of research into fertility and pouch surgery and the results differ from: ”29% of women who had undergone pouch surgery came out with a reduced chance of conceiving, to even as high as 48%”. Each study I read up on came out with different results. Even though kids won’t be happening right now (thank god), it’s having the option. I know many women who are perfectly fine and can conceive with a pouch and a bag! I guess it’s just luck of the draw! In my opinion, I would want to give myself as many options as possible, so egg freezing would be something I will seriously consider for both pouch and permanent bag. I have been advised by all my doctors and nurses to hold off on pouch surgery until I’ve had kids (if I want them).
- Food – I like food and bag life gives me the happiness of eating pretty much everything in sight; with the exception of sweetcorn and whole tomatoes (not that sad about that anyway). Brownie points for bag life! I have heard the pouch can be temperamental with certain foods and drink, causing pouchitis. This is inflammation that can be treated with antibiotics but would mean there are certain foods I would avoid. Again, this changes with each person but the uncertainty around this is what adds it to the list!
- Loo trips – I haven’t gone to the toilet like a normal person for over a year now (so weird when I actually think about it) and I’ve completely forgotten what it’s like! The last memories I have of that are surrounded in fear and pain; something that I don’t really want to go through again. The body has to adjust and I will basically have to re-learn how to go to the bathroom! At the moment I empty my bag as and when – it isn’t something I put a great deal of thought into – but with the pouch I’m nervous about how many times a day I would, plus the lack of control is what I fear the most.
All of these options are shadowed with uncertainty! For me the only cons to bag life are changing it everyday, having my intestine poking through my stomach and the actual bag on my front can get annoying. However, if I went for the safety of a permanent bag I don’t want to always be wondering if the pouch would’ve worked for me. I haven’t come to a conclusion about what I want to do and there are SO many things I have to think about.
So far, bag and I are getting on ok, but this is something I will always have at the back of my mind.