Returning to University with an Ostomy - Any Advice?

Hello,

I know I've been making quite a few posts recently, but I've got a lot of questions and I'm very anxious about starting uni on Monday (24th of July).

I started semester one of uni this year studying biomedical science, but on the Friday of my second week a specialist that my dad had called rang me in the morning and told me to get to hospital. I spent those first two weeks of uni basically on autopilot. No one knew I had colitis and I was in and out of the GP's office every few days with more blood tests and trying different medications to work out what was wrong. I wasn't in the toilet as often as I've read others are, as I was using the toilet around six times a day. Mild but sharp gut pain and chronic fatigue was the issue. I'd struggle to make it between lectures in the ten-minute gap because I'd be too exhausted to walk the whole way in one go, but I still dragged myself to uni every day, which I now realize wasn't the smartest thing to do. I was booked in to see a gastroenterologist on 22/3, but I ended up having emergency surgery on 17/3 with a different gastro because my dad didn't think it was safe waiting that long, and he was right as I was told that if I didn't have the surgery then and there that my colon would have perforated overnight. As I'm sure you can understand, it was a very overwhelming experience, and it still is some days. I've spent the last three months itching to go back to uni and have some structure again, but now that it's here I'm a bit terrified. I'm scared of having bag leaks, missing classes because I need to change the bag in the morning, meeting people and how the bag is going to affect that, but probably the biggest concern for me is how I'm going to feel when I am in the exact same spot that I was when I was basically dying without knowing. I know it probably sounds stupid, and when I think about it, it does sound a bit ridiculous, but it's the sort of thought that stops me from sleeping some nights. I still get quite sad when I think about being back at uni when the last time I was there I was extremely ill and was only just making it to classes before finding a tree and pretty much passing out under it during my breaks. I don't know why this is such a worry for me and why it makes me feel anxious when I think about it, because I know that it shouldn't be a concern because I'm about as healthy as I can get now.

This has become more of a blog post than a forum post, but did anyone start uni/college/school without an ostomy and then have to have surgery part-way through? How was it returning to the same places? Did you ever have trouble with the bag, i.e. leaks, unexpected bag changes in the morning, dehydration, or making friends?

Thanks,

Hamish.

Hamish,

I was diagnosed with ulcerative colitis when I was 14 and had surgery with a permanent ileostomy 10 weeks before I started my university career. It is scary and overwhelming, but I did make excellent friends. If you have any questions, I will answer frankly.

Mike Q

I was a chemical engineering major.

Hello Hamish.

Thanks for yet another interesting and stimulating post.

Your thoughts on the subject sound pretty normal to me and if you re-read your own post, you might percieve that you have already answered some of your own questions in ways that will help you to overcome any residual fears you have about returning to Uni.

Of course it's going to be anxiety provoking, probably even more so for you than it will be for your fellow students who don't have the same problems to cope with but still start their first year at university with some trepidation.

I went to college and university whilst I was incontinent of faeces and without the convenience of a bag to manage the output. It was a daunting proposition but I got through it and as Mike said, I made a lot of new friends along the way.

Best wishes

Bill  

Go, Hamish!

You write expressing trepidation in some ways, but you also sound like you "get it" and are moving forward at a pace that makes our heads spin! You have this whole situation nailed, you just need to know that you do.

To minimize my fears of bag leakage, I change my bag in the morning... take the old one off, wrap it in toilet paper, put it into a ziplock bag, and discard. Then I hop into the shower, bag-free, scrub well, and after I dry off I put on the new bag for the day (which I empty during the day). Seems to stop leakage issues as long as I avoid huge pasta dinners.

You need to look at university from a whole new perspective now. You started when you were sick. But now you're a totally different and experientially improved person going in. And your fears of dying? Understood. So when you're actually at the dying point, you already have a doctor, and his name should be in your wallet. Until then, go ahead and wake up every day with the mantra, "Wow! I'm still alive today!" and work it from there.

Keep writing, we're here for you, and whatever we can do to help you feel strong or fearless or capable with your bag, we will do

Hi NotDeadYet,

Thanks for the reply. Uni has been fine so far. No issues with the bag yet, though I've been far more conscious of checking how full it is, particularly with gas as it puffs out and would be very obvious if it wasn't mid-winter and I wasn't wearing a jacket. I've got another issue to worry about now, though, which is what I'm 99% sure is an incisional hernia. I've got an appointment with my GP tomorrow afternoon to find out for sure, but like I said, I'm almost certain it's a hernia. For all of the worrying I've done about getting any form of stomal hernia, I've ended up with an incisional one (probably) in the middle of the long scar in my pelvic region. It seems that my body simply can't handle university. Twice I've started my studies, and twice I've ended up with some medical issue. It's very frustrating and I've always had a rather short fuse. It isn't stopping me from doing anything yet, though it's only week one now and no practicals or tutorials have started yet, so my days are fairly short. I'll see what happens tomorrow with the GP and I'll post an update here.

Thanks again,

Hamish.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Hello again,

I would write this as a blog, but I'm not a full member so I can't, so I thought it would be best to write it here rather than making a new forum post. Just an update of how uni went this week.

Uni this week went well. Nothing particularly exciting has happened yet as all of my lectures were just introductory stuff and so we'll be getting into the proper work next week. I haven't had any issues with the bag at all while I've been at uni, though I'm far more conscious of it filling with air and puffing up, but it has been manageable. I had my first bag blow-out during the night on Friday. Needless to say that it pretty much set my mood for the rest of the day.

The toughest part so far has been the deja vu. The first day back at uni was a bit confronting as I could walk around and mentally pinpoint the exact trees that I slept under when I was feeling exhausted from UC, and being in the same lecture theatre that I was in as well. After the first day, though, it has been fine. I've also had my first ever real physical issue since my surgery as well. Unfortunately, I was perfectly fine physically during the four months I had between surgery and starting uni again and was progressing at a normal rate, but now that I've started uni again, it's like the start of my last semester when I had UC all over again.

On Tuesday night I developed what I thought was a hernia on the pelvic incision line, and so I spent the week in physical pain and saw the same GP and radiologist that were seeing me when I had UC, which felt a bit strange. It turns out that it isn't quite a hernia, but where the two abdominal muscles should be pretty much side-by-side, there is a slight gap because of them being cut and a tiny bit of my small intestine has slipped in there and is causing a bit of an infection and inflammation. I've also got the flu or something, as I've had a runny nose, sore throat, and everything that has come out into the bag has been liquid for the couple of days, so I've been feeling exhausted and dehydrated all the time despite drinking more fluids than usual. It has been frustrating that every time I have been at uni I have been physically and mentally drained, which obviously makes it hard to focus on any of the work that is being covered in lectures. As I said, it's like deja vu. I'm back at uni and once again I'm feeling exhausted all the time and in physical discomfort.

I'm on antibiotics now to see if that makes a difference, and hopefully they can work some magic over the weekend and I can get rid of some of this flu and the gut inflammation.

Thanks for reading,

Hamish.

Keep going, Hamish!

University is hard because everyone is so young and mostly super-fit. If you were living in a retirement community, you would look like an Olympic athlete. It's all perspective.

I used to have gas blow-ups in the first 6 months of getting a bag. Personally, I think it subsided due to a few factors:

1) My body got used to the bag and adjusted accordingly. Honestly. By itself.

2) Eat smaller, easily digestible stuff. You are no longer a teenager eating whatever you feel like eating.

3) Small meals often. Figure out what causes gas and eliminate it for now (for me, EVERYTHING caused gas for about 6 months).

Sorry about the bag blow-out. We've all been there, done that. It WILL happen again, so get the survival kit together. I can fit a bag (with the hole pre-cut) into a ziplock bag, accompany that with a small pack of tissues and a small pack of wet wipes... into the SIDE POCKET of my purse. So if you look into my purse, all you see is a zipper on the inside.

Guys can probably sport an entire fanny pack and water bottle!

Lots of people in Uni are a little dense mentally, which you are obviously NOT. So your competitive edge is safe despite your medical issues. Keep going despite the physical stuff. Hammer on through. Sometimes our challenges are what make us excel beyond the group. Be one of those.

We're rooting for you!

Sorry about the typos... I was rushed!