Surgery Dilemma: Managing University and Health Challenges

Good afternoon,

I have quite a dilemma that some of you may or may not have read about in my recent blog post.

Last week, after over four months since my emergency colectomy, I was made aware of the fact that my surgeon gave me a "closed mucous fistula" without warning me. It was meant to reveal itself after about four weeks, though I never knew that. It was also meant to be just three pin-sized openings in the pubic incision, but mine revealed itself during a colitis flare-up in the rectal stump, and so it has burst that scar open and I now have an opening that is half as long as that scar line. The surgeon said that because I'm booked in for my J-pouch surgery on the 23rd of November, he's not going to do anything with it, and I am now forced to wear two bags: one for my ileostomy and one that is a disc-shaped bag filled with absorbent pads. The small bag over the wound needs to be changed twice a day, minimum, simply because of the amount of blood and mucous it produces.

My dilemma is that I have only just started back at university two weeks ago, and so this is quite a big stress on top of that. I have until the 31st of August to drop subjects. My mum has called around to different departments while I have been busy studying to find out what subjects I could do externally as my surgeon has told me that he can move the J-pouch surgery forward to either the 15th of August or the 22nd. This would mean that I need to pull out of university and do three subjects externally and one over the summer semester if I am to remain on track time-wise for my course. It's not a bad option, but I'm very worried that if I pull out of uni and have the surgery now that I've got the next seven months of living with myself. By that I mean that I won't have much reason to leave the house, and if I force myself to leave the house to do things I'll feel like I'm just going out for the sake of it. That's exactly how I felt during my four months of being at home after my colectomy. Because my first attempt at my first semester only lasted under two weeks because of colitis and emergency surgery, I have never been at uni long enough to make any friends. All of my close school friends are either at a different uni or have moved to a different state. With this wound/fistula, I feel like I've been taken back to the very beginning with the ileostomy, trying to work out the best way of changing it and cleaning it, as well as having the stress of fitting it into a daily (or twice daily, in this case) routine. Then there's the worry of either bag leaking while I'm at uni.

On the one hand, I deal with a physical problem by having surgery, but likely create mental challenges for a few months, but on the other hand I can deal with the mental challenges by staying at uni, but struggle with the physical challenge of managing two bags. I seem to be in uncharted waters here, as Googling anything to do with this yields very limited results. What would you do in my decision? I can't make a decision about what to have for lunch, never mind having major surgery and messing around with my uni schedule.

As for my second question, are there any unmentioned complications that came with your J-pouch? I have found this mucous fistula incredibly frustrating because my surgeon has brought up the rectal stump and the discharge that comes with it many times, but never mentioned that it will most likely open up my incision and ooze from there as well. Is there anything that wasn't mentioned to you by any of your medical professionals that you wish was?

I apologize, I have posted plenty of information to take in. I've had a rather stressful weekend trying to work out the best option. They both seem as bad as each other.

Thanks for any guidance,

Hamish.

Hi Hamish,

I just read your dilemma, and although I'm now 69 years old, I went through many of the choices that you're going through now, back when I was in my teens... until I was 20.

Because of my ulcerative colitis, I was out of high school for 4 years, 7-10th grade. It wasn't my choice, but I was spending months at a time in the hospital, on medications and getting transfusions, that it would have been impossible to go to school. I had home instruction... but that was a joke, and it barely kept me literate, much less up to grade level at school. After my ileostomy, I was able to go to school but like you, I also had a rectal draining stump, that the doctors were trying to heal. There was a lot of blood and mucus, but I didn't wear a bag... I used pads, and had to do rectal drips each night. Not fun for a teenager. But I coped, and was back in school. My advisors wanted me to stay back a year, to take courses that I'd missed, but I was too stubborn to do that. I wanted to graduate with my class. So I went to summer school, and took the second semester of English, and the second semester of Biology, and taught myself the first half, so I could take the state exams. I passed... but it was a nightmare of work... not feeling well, and still having to do schoolwork. It's called moving mountains. My regular school schedule was ok, but the damn rectal stump wouldn't heal, but the doctor wanted to give it a few years. I graduated from high school, and started college at a local community college (my grades and education were not great at this point). I fought with the doctor, to remove the rectal stump, but he and my parents wanted to give it another year. Didn't really care what I wanted or what I was going through. The other end of the rectal stump was attached to my belly, but not with a stoma. It was supposed to heal, from the inside out, but it drained forever... so I had to attend to that dressing as well. The upside was that my ileostomy was working well. They weren't doing the J pouch yet, so it wasn't an option for me, and I didn't want the continent ileostomy (opening on the belly, that has to be intubated regularly. Friends had it... and had a lot of problems, but no bag). I finally had my final surgery at 19, during the summer when I didn't have school. That was a good thing, because I had multiple complications, and my bladder stopped working for 10 weeks... another bag! Eventually, it began working, but I didn't have sensation. That never came back, so I "pee" by the clock. As much as I didn't like delaying school, it was easier to take care of my physical needs, without the additional worry of surgery, & recovery. But you have to do what's best for you... If you think you can handle it, go for it. But you're not a failure if you do it sensibly. You don't need the added stress of going to school, while trying to heal. If you can take online courses while you're healing, that's a better option. This may not be what you want to hear, but I'm relaying my experiences. You may wonder if I "learned anything"? Not really. Years later, I was going to school for my special education certification, and I was studying for my teacher's exam, while my son was in the hospital, having tests, and transfusions. I didn't want to delay my exam, but I wanted to be there for my son. It's actually him that told me to go to school. I/We had studied hard, and he didn't want me to wait another few months, to take the test later in the year. It's really difficult to make these life choices decisions, so I wish you a lot of luck. Do what you think is best. The opportunity to go back to school won't go away... and you can put your attention where it's needed. Easier for me to make that decision, looking back... but wasn't so easy at the time. Best of luck to you. Marsha

Hi Hamish,

My vote is to go with your surgeon's recommendation which ever way he/she thinks your health will benefit the most and put you on the fastest road to recovery.  If your doctor thinks surgery now is best for you, the uni will be there when you've healed. 

Best of luck,  and please keep us posted!

prayers,

fraidy Cat