No Colon and Still Rollin’

After UC surgery

I'm Molly!

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 betterĀ  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.

Molly and Izzy

Molly and Izzy

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

 









15 Responses to No Colon and Still Rollin’

  1. Sara February 16, 2012 at 8:45 am #

    Hey Molly,
    Thanks for sharing your story, you have a great sense of humor. I have a j pouch too and also don’t have many problems with it. I also can eat/drink pretty much whatever I want and I go to the bathroom about 3.5 times a day (according to my iphone) lol! Glad to see you doing so well and out there living life again.

    Sara

  2. Isabel
    Isabel February 16, 2012 at 9:49 am #

    Molly,

    Thanks so much for your story. Can you give me an email adress or a way I can contact you.? I need to talk to someone positive about surgery. I am feeling really scare right now. I have an appointmment with a surgeon today, and I feel like I am going to pass out I am so nerveous. Keep up the good humor! :)

    • Molly
      Molly February 16, 2012 at 2:08 pm #

      Sure!! I would love to chat with you!! You can email me at horsenaround5555@aol.com
      Just put something in the subject line so I know its you. Best of luck with your appointment today :)

      • JP February 16, 2012 at 4:00 pm #

        Hey do you have facebook?? im going through the surgeries and would love to talk

        • Molly
          Molly February 17, 2012 at 10:03 am #

          Yep I’m on facebook…you should be able to find me through the I Have UC page :)

  3. Vicky February 16, 2012 at 11:56 pm #

    Hey Molly- thanks for sharing your story. I have had an appointment with a surgeon and may have to have surgery this year. Your story makes things sound a little less scary. I am wondering though, you say you still have several bathroom trips a day. The frequency has never been the issue, but the urgency is the problem…so do you still have problems with that??

    • Molly
      Molly February 17, 2012 at 10:06 am #

      Urgency isn’t as much of an issue for me anymore. I would say that most of my urgency these days comes from feeling like I need to get rid of some gas. That varies a lot with my diet as well. Certain foods seem to make me feel more gassy than others, namely pop and other carbonated beverages.

  4. Paul Willoughby February 17, 2012 at 6:48 am #

    Thanks for sharing your story. My doctor and I have been back and forth over surgery for a few years now but right now I am doing well enough that surgery is out of the question. Of course, I am much older than you (40s) so I wonder if there is more of chance for complications for middle aged people…

    best wishes,
    Paul

    • Molly
      Molly February 17, 2012 at 10:17 am #

      My GI doctor was dead set on me having surgery, even when my flare wasn’t that bad he was always saying “we can cure this with the surgery.” It wasn’t until my flare got really bad that I even condsidered surgery, mostly because I wanted a long term solution before I started college. I’m glad your doing well, and I hope your UC stays in remission! :)

  5. Trent February 17, 2012 at 10:05 am #

    Hey its so awesome to hear good news coming from someone who has been through all three steps. I will have my take-down surgery in March, the 13th to be exact, and I am pretty scared and nervous about the whole thing from the recovery to what life will be like later down the road. Reading about your story as really put me in a good vibe about everything. I hope you continue to do well and I hope you make it through college, my sophomore year is really kicking my butt right now.

    I’ll probably send you questions when the time comes closer to the next surgery.
    Thanks,
    Trent

    • Molly
      Molly February 17, 2012 at 10:12 am #

      Yes please feel free to send me questions! I would be happy to help in any way I can. I was scared before my first surgery too, but I made it through and I felt 110% better afterwards,and that made it all worth it. I’m not saying it was an easy road but it was SO worth it! I found that being in college helps, the Biology majors and nursing majors think I’m so cool, and aren’t afraid to ask questions haha. I think my email address is in a previous comment, so feel free to email me! Best of luck with your surgery!!

  6. Juliana
    Juliana Sharp February 20, 2012 at 5:08 pm #

    Molly,

    My dad was going thru many websites and ran into your story. It made him thank so much of me, he printed it out and brought it to me in the hospital. I have UC, and was diagnosed with it on my 14th birthday, August 30th, 2010. I am now 16. I wont go into my story completly but its almost identical to yours. I just had my surgery December 3rd, 2011 then had the colostomy take down only 3 weeks later on December 30th, 2011. Me being back in the hospital, i came to find out i have pouchitus on the J pocket, my luck right? ha. They have me on anti-biotics and im getting better. Your story really got to me cuz it was so easy to connect with. If you would e-mail me , that would be great . (: julianasharp21@yahoo.com
    Have a good day.

  7. April August 5, 2012 at 10:41 pm #

    Hi my name is April. I have had UC for 22 years and never had surgery. Ive been scared cause i have Diabetes too.My Internist has said i can get infection bery easy. But i only have UC in 6-8 inches of my colon ans i dont know if i should have just removal surgery or the colostomy, i dont really know very many people to talk to about this, but im sick of gaining weight and being on prednisone all the time, Ive also been on remicade for about a year but it is not working… but i have to stay on it for my colitis arthritis that i now have due to the longevity of my disease and complications with it. Was wondering what you think is best and if anyone has had these experiences??

    thanks :)

  8. Gage May 17, 2013 at 7:33 am #

    Ok. So maybe this website and blog is supposed to be a positive thing but I get the feeling that its lts all made up just to make us people with Crohn’s disease feel better about surgery. I mean i feel like you’re way too positive about all the situations that came up. “My friends are jealous of my poop bag”? Yeah right. This all seems way too commercialized and I’m sure those pictures of “you” are from a paid actress or model. Crohn’s disease does suck and I’ll probably have surgery due to the fact that I’m always bleeding, been bleeding for 3 months now! So I am afraid but this blog made me just feel like its embarrassing to have a shit bag. All because you made it seem like its one of the best things ever. So it came off as way too fake. Fml

  9. Molly McPeek December 19, 2013 at 9:14 am #

    Hi Molly.

    I found your story and it was awesome to read. I am also named Molly and having the first part of my three step surgery on Monday. You know you feel crappy (no pun intended) when you are ok with surgery two days before Christmas. Thanks for the great story and I can’t wait to start feeling better-like you! You are a great inspiration for the rest of us.
    Molly

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No matter what, colitis flares don't last forever, don't forget it:)