No Colon and Still Rollin’

Introduction to Molly:

I am a 21 year old junior in college. I hope to teach high school biology after I graduate. I was diagnosed with UC my freshman year of high school, and had my colon removed my senior year of high school with a three part J pouch surgery.

No Colon and Still Rollin’:

I was diagnosed with UC in October of my freshman year of high school. I had seen blood in my stool and was going to the bathroom 20-25 times a day. I missed roughly 2 months of school before I was in remission enough to go back to school. It took many hours spent in the doctors office before they figured out what was wrong with me. It got to to the point where I was spending so much time in the Dr.’s office (3-4x a week I would see my GI) that the receptionists used to joke that I needed to bring a suitcase and stay there. That GI had me on a variety of expensive “designer” drugs that didn’t help at all. Finally, after a long time spent on prednisone I was in remission.

To keep me in remission I was taking sulfasalazine 3x a day,

plus iron supplements to help with my anemia.

While I was going through all this I was also diagnosed with pancreatitis. Once, when I went to the ER for pain (because of the pancreatitis) the ER Dr. on call told me I had the highest lipase and amylase levels he had ever seen. I ended up having to have a stent placed in my pancreatic tube because the pancreatic “juices” weren’t properly leaving the tube. I had the stent removed and have been declared “cured” of my pancreatitis. I still have the stent in a jar on my shelf :)

I finally went out of my town and found a much better GI doctor in Spokane, (the one in my home town would keep me waiting for hours even with an appt) we worked together to create a maintenance plan for me. I was in remission until spring of my senior year of high school, after having gone through 2 of the 3 GI doctors in Spokane I was stuck with the Dr I liked the least. He talked so flippantly about surgery like it was not big deal.

Let me tell you to a 17 year old

surgery is a VERY big deal!

He tried to treat from home, by prescribing me prednisone and telling me to start taking and see if there was any improvement in my flare. There wasn’t and I ended up having to go back to Spokane for IV steroid treatments. With still no improvements, I was given 2 options, surgery or remicade. Remicade didn’t sound like a good option for me because there was no guarantee that it would be a long term option. With me being a senior in high school and getting ready to attend college in the fall, I wanted a more long term solution. (Also the fact that remicade is made with mouse proteins, made me a little worried that I would grow a tail or something….just kidding haha). After talking to a surgeon I opted for the surgery. The fact that I had been on steroids for so long (about a month at this point) meant that the surgery needed to be done in three parts rather than 2. Within days I was scheduled for my first surgery. The ostomy nurse who observed the surgery said my colon was one of the worst she had ever seen. I was feeling 100% better after surgery, my parents told me that right after surgery that all I would say was how much better  I felt. (Here I would like to point out that I had just turned 18 and my parents still consider this my 18th birthday present, got to say probably the best gift ever) I went back home and was able to finish out my senior year with no “major” problems and graduated on time and was still in the top 30 of my class of 800+. (I say no “major” problems because on my first day back my bag had a major blow out, I mean a HUGE blowout, like I had a small explosion…but back home I went and got myself cleaned up and that was that!) Within a month I was back riding my horse and feeling much better than I had in months!

I also had agreed to hosting some

Japanese exchange students for 2 weeks

so while I was still getting used to pooping in bag,

I had 4 Japanese students following me around.

But I survived and I can honestly say that it was a very fun experience, although I regret not being able to go to Japan because of my surgeries that summer. To make things easier I named my bag Poopsie-seems appropriate right? That way I could talk about my bag in public without people knowing who or what I was referencing, it’s still a big joke with my family and friends. I actually had friends who were jealous of my bag because I could poop in front of everyone and no one could do a damn thing about it! Also, the best part of this stage was freaking people out by having them feel my stoma (warm and squishy…). I mean how many people can say they have felt a small intestine….?

My second surgery was a week after my graduation from high school. This surgery went well, but I had some problems with getting dehydrated. At this point in the take down process your bag is a lot closer to you stomach so your output is more liquidy….making it VERY easy to become dehydrated. I was drinking 3-4 powerades/gatorades a day just to keep myself hydrated. The main problem I had with this surgery was after my staples were taken out from my main incision below my belly button. They were taken out a little bit too early (because the Dr was going out of town) and the 2 edges of my skin ended up separating from each other, leaving an open wound about 2×2 in.

Pretty sure one of the worst feelings in the world

is looking down and NOT seeing

your skin stuck together like it is supposed to be…

Luckily, my regular Dr in my home town was available and stapled me back together, with help from my mom….(and while the Beatles “Come Together” was playing, I might add, coincidence? I think not…). Unfortunately these staples didn’t hold together very well and now that scar is very wide, but it is fading now so it all worked out in the end :). Right before the third surgery I became so dehydrated that my surgery was pushed back a day so that they could rehydrate with IV fluids. I recall throwing up as the surgeon was checking my J pouch for leaks, so yes I was laying on my side with a camera up my butt and puking my guts out…good times.

I made it through the third surgery with flying colors, but my nurse wouldn’t give me strong enough nausea meds (even though the dr prescribed them) so I spent the first couple of days after surgery puking my guts out and not being able to keep anything down. The surgeon came in 4x in one day, much more than his normal 1-2x. I was so sore that I was showing the same symptoms as if my J pouch was already leaking. But he drugged me up real good-I mean good, like I slept for a good 12 hours, and I felt much better.

But let me tell you hell is real,

and its called butt burn.

I know the name is corny but it is a perfect description of what I was feeling. When you haven’t had anything come out your butthole for a few months and then you have straight stomach acid come out, it isn’t pleasant. My advice….stock up on Calmoseptine, yes it will stain your undies if you aren’t careful but this is easily fixed by wearing a pad. Once I was able to eat solids and keep my oral meds down they sent me home. The third surgery happened a month before I was supposed to start college. It was also after this surgery that I found out that I will probably have trouble having kids as there is scarring on both of my fallopian tubes :( this was not great news for an 18 year old to get but that’s life. I have made my peace with it and I figure I will deal with it when that time comes.

Long story short I started college on time and I am now in my third year. I am loving every minute of it. I feel great and it is nice not having to worry about having a flare. I eat and drink pretty much everything I want, with very few problems. Sometimes spicy food gives me a bit of BB (butt burn) and lettuce goes through me very quickly but other than that I am good. Marshmallows are a beautiful thing, they will thicken things up in no time. :) I still occasionally have trouble with incontinence at night but that is par for the course all things considered. I would say I still go to the bathroom probably 6+ times a day, but that is much better than 25+ times a day! Over all I think that having the surgery was the best decision for me. If you have any questions feel free to ask me, I’m not shy at all. Best of luck to all you UCers out there!

Colitis Medications:

I found that Sulfasalazine worked the best for me when I was in remission. Prednisone was the main steroid that was used to get me in remission, and it worked but I got a major moon face and they taste horrible!!

written by Molly

submitted in the Colitis Venting Area