My Decision: Sticking with Uni and Managing Two Bags

Good evening all,

As many of you are aware, I posted a blog last week detailing a particularly difficult decision that I had to make. Fortunately (or unfortunately, depending on how you look at it), last Friday was not the cut-off for changing subjects, but it was the last day to take on new subjects without a late fee of $50 per subject. This gave me far more time to think about my options and go through the positives and negatives of either choice.

On one hand, I could have surgery now, drop uni and replace my subjects with online or external subjects so that I didn't fall behind time-wise, but I would be stuck at home likely getting bored, frustrated, and a bit lonely until next February. I already felt this for four months between my original surgery and now, and it wasn't pleasant for me or the people around me. On the other hand, I could stick with uni this semester, managing two bags, one of which needs to be changed twice a day, while also trying to focus on a full-time study load, but also giving me something to do. I have found that throughout the week since finding out that I will have this mucous fistula, which is essentially an open wound (it wasn't meant to be open, just a few pin-sized holes) where the top of my rectal stump is attached to the inside of my incision, I have been completely fine when I'm at uni and studying or attending lectures, practicals, and tutorials. I am able to forget that I have the bags for a little while. Of course, I always have concerns in the back of my mind and I'm particularly alert about checking how full my ileostomy bag is with air. The last thing I want is a leak or blowout while I'm at uni. I have been told that it happens to everyone, no matter how hard you try, but there are always exceptions to the rules. I plan on being that exception.

Anyway, I've spent the past week feeling very conflicted, frustrated, and stressed about this decision. I have been feeling that if I have the J-pouch done now, I'm taking the easy way out. On the contrary, I feel like I've been given an opportunity to bypass the next four months' worth of managing and worrying about maintaining two bags, and so I'm an idiot if I don't jump at the chance. Both thought processes are ridiculous and serve no purpose; they just waste my time while I stress about them.

Finally, I came to a decision today and I chose to stick with uni and manage the two bags. It will be tough, and I'm already behind on my study because of my lack of focus for the past week. I'm still trying to adjust to the large hole in my lower abdomen, and I've only recently learned to just get on with life with the ileostomy, so in many ways, it's like being back at the beginning. I wouldn't be happy with either choice, but I think I'll be slightly happier in the long term with this choice.

If I can live with an ileostomy though, I'm sure I can live with this. While I have no doubt that I would have been happy with the surgery now, I think I'll be in a better mental state for between now and my surgery in November if I'm out of the house and engaging in uni rather than doing everything online in my bedroom while I recover. I still need to adjust to the social aspect of the ileostomy too, which is challenging. I was always quite a quiet person, so having an ileostomy as well as the other bag for this wound has made me particularly guarded. Whenever I'm talking to people, whether I know them well or not (only my family and very close friends know about my surgery), I always have the thought of "how and when do I bring it up?". For some reason, it's not people's reaction that worries me, just how I will bring it up. As I'm sure many of you have experienced, the stoma is quite the self-esteem killer in the beginning. I'm not even five months out from surgery, so I still have plenty of learning to do. It is still difficult waking up at 3:00 AM to empty the bag sometimes, for example, and I still worry about when I will find enough time to change the bag during the week when I'm busy. It's all part of the process. In an almost sadistic way, I am kind of looking forward to the challenge of managing it all this semester. Maybe I'm just making up for the months of doing nothing after my first surgery. I've never had a leak in public, though, and that's not something I want to be challenged by. Do you use a normal toilet cubicle for an emergency bag change? I'm probably overthinking it.

Thanks for reading. I decided to post all of this in an entirely new blog post because I've received quite a few messages and comments on my other post asking about my decision. Thanks for showing interest and supporting me.

Hamish

Hello Hamish.
Thank you so much for once again sharing your thought processes in your decision making. It is sometimes helpful to write these things down for other people to read and contemplate because, by writing it down it helps clarify your own thoughts about these difficult matters.
I would like to add a little bit of advice that I was given when I first started university many years ago. My tutor suggested that whatever I wrote to him and to other people, should not be just forgotten as we move on to other things but it should be collected as valuable snippets of information that shed light on this decision making process as things happen to us in life. with all these odd pieces of writing/correspondence produced over the years, it could form the outline of an eventual autobiography - as yet not conceived.
You are obviously a very good writer already and I have little doubt that university will help you raise your game in this regard even higher. What you have written on this site already, puts me in mind of the first chapters of a promising book on the psychological and emotional aspects of 'Coping with Chronic Conditions' (Which is the title of the book that I have just begun myself - but you are quite welcome to use it as a working title for one of your own if you so wish!) Your style of writing flows in such a way that it makes for an easy and interesting read and the subject of coping with chronic conditions in the world of academia and beyond would be a welcome addition to the literary field.
I hope that your education and fun at university progresses well and that you achieve what you want in life.
Best wishes
Bill

Hello Hamish
Taking your time is always the best you can do. Sometimes rushing can get you into a bigger problem. Just like school studies or anything you do, if you rush doing them, it's not always going to work the way you want it to.

Congratulations

Well Hamish, what can one say?

What has happened to you is grossly unfair.

I was hoping to come up with some words of wisdom or some brilliantly profound statement, but unfortunately, words have failed me.

You are at your lowest point now.....surely some good luck has to be coming your way?

Please keep posting.....there are some genuinely concerned people on this site who are following your progress.

I had an appointment with a colorectal surgeon today to discuss my parastomal hernia. It is small beer compared to your issues.

Stay strong if you can.

V.J.

How to Manage Emotions with LeeAnne Hayden | Hollister

Awesome, Hamish, I think you are holding up very well under difficult conditions. Remember, there is no right or wrong decision in this case - it is obvious there are pros and cons to whichever direction you choose to go. The key is choosing one, and going at it whole-heartedly - no second-guessing yourself once you choose a path. I think you will find that as you stay busy and focused on your studies, your physical problems will fade a bit from the front of your mind as you develop a routine with them. It's not that they will be particularly easier in and of themselves, but once you become accustomed to handling them, the very routine-ness of it will make them seem less onerous. Hang in there, and good luck with your studies. And please remember, your professors are not ogres - if you find yourself becoming a bit overwhelmed or falling behind, talk to them. They may have some tips to help you get caught up. It is always much better for them to at least be aware of issues that can affect your performance, rather than leaving them the impression (albeit a false one) of falling behind because you are just not willing to put in the work.

Hi Hamish, I'd just like to say not to stress out too much over telling people about your ileostomy. I used to do the same at first, but after 7 years, I don't anymore. Most people don't know, don't need to know, and unless you tell them, will never guess. Only on rare occasions have I had to tell someone other than close family or friends. The people I have told are usually surprised and then soon forget.

Right on the money 61