Hello!
My name is Allison Schur. I am new to this site, but I wanted to talk about my experiences so far with Ulcerative Colitis, surgeries, a temp ileostomy, and the Jpouch. So, here is my story so far. Sorry in advance if this is too long!
I am currently a 21 year old college student. My whole life (as far back as I can remember) I have always had issues with my stomach. I can remember being young and going out to eat with my family and instantly getting sick from one bite of food. I never knew why this happened to me; I just figured I had an awfully sensitive stomach and it happened so often I almost thought it was normal....until it REALLY started effecting my life the older I got. As I got older (probably around middle school) and started going out to eat and other places with friends I could NEVER peacefully go anywhere because I knew I would get sick/be the debby downer of the group. The stomach pains I would get were horrible and the having to go to the bathroom a million times after eating was horrible as well. I never wanted to go anywhere with anyone because I did not want to be embarrassed of the situation or ruin any fun my friends or family wanted to have. I have also been known to have some anxiety since I was younger, so many times people would tell me that my stomach issues were just bouts of IBS and a nervous/anxious stomach; which I could not disagree with. During the summer of 2014 (I was 19) I noticed that my stomach was more off than it usually was (which I did not think was even possible) and I just figured I had some sort of stomach bug. Well.. this so called stomach bug lasted for weeks and I could barely function at work because I was running to the bathroom so much. After a few weeks of this, I was feeling okay one night, so I ordered food from my work before I went home. On my way home from work I got about 5 minutes away from my house and my stomach dropped and hurt like nothing I have ever felt before, needless to say, I also felt like I was not going to make it to my house to get to the bathroom in time. When I got home and went to the bathroom most of it was blood.. Right then and there I KNEW I had Ulcerative Colitis. The only reason I knew this so well was because it runs in my family (my mom has it/ has it controlled with 1 Lialda a day, my aunt had to have her large intestine removed when she was a junior in high school, and my grandpa died of colon cancer). I instantly called my mom and told her what happened and we called the next day to try to get in with a GI doctor that we were told was very good. The GI doctor was booked out for a very long time, but I managed to wait somehow. Once this appointment came up I was so excited because I thought I was going to get a clear diagnosis and instantly be put on medication to get these awful symptoms to stop.. well that was NOT the case. This doctor was very rude from the start and told me my anxiety was the cause of my bleeding and to start taking anxiety medications (he was not taking me serious at all) even though he knew the history with Ulcerative Colitis in my family. To me, none of what he said made sense and I was not a happy camper after I left there. After that, I landed in the hospital more than a few times due to constant bleeding, fatigue, dehydration, and just overall feeling horrible. I ended up in the hospital one day and thankfully got a CT scan that showed a crazy amount of inflammation in my colon. Only problem was, the PA could not give me a diagnosis to get me on my track to recovery. After that, I went to my mom's GI doctor who she has gone to for over 26 years and has been great with my mom, so I gave it a try. I instantly got scheduled a colonoscopy and got diagnosed with severe Ulcerative Colitis the day of my colo. Finally thought I was getting somewhere. I was put on a high dose of prednisone to try to get into remission and was started on 4 Lialda a day. Long story short, the prednisone (ended up being on it 5 times for months at a time) never would put me in remission and as soon as I would stop the prednisone I would start bleeding again.. I am talking about 30 times a day/very heavy amounts. Once my doctor realized that nothing she could do would help me, I got referred to a different doctor. I ended up seeing about 10 doctors before I found one that could put me on the right path. It was almost 2 years before I started getting somewhere. Every single doctor I saw just wanted to push medications on me and everything I tried was a fail. I can remember taking 11 pills every morning and never feeling relief. Also, the prednisone made me feel awful as well. I got irritated so easily, always tired, starving all the time, and I gained quite a bit of weight from it. I eventually got put on Remicade infusions and they did not work either; they made me feel worse. I was also terrified of all the horrible side effects these medications can cause. There was one last medication my doctor wanted me to try, but I refused because this medication was known to be even worse than the rest and I knew my body, which rejected everything I put into it. Therefore, I had to make the decision of wasting another year or so of my life trying more medications that probably will not work/ruin my other organs in the meantime, or go through an extensive and serious surgery to possibly get my life back. When I say get my life back, I mean it. As the days went on I could feel myself getting worse and worse. Could barely leave my bed, could never even drive due to having to be by a bathroom 24/7, and having people who did not understand what was happening with me. I went away to college as all of this was happening to me, which made it even harder. I had to drop out of classes to get to the doctors every single week and could not focus in class. I had mental breakdowns almost every day, but still pushed through!!
Eventually, my doctor referred me to a surgeon around November of 2015 and got my surgery scheduled for December 28th of 2015. I knew this was the right choice and I could feel it in my heart that this was something I needed to do for myself even knowing the risks with the surgeries. On December 28th, I had a total proctocolectomy with temp ileostomy. Then, March 9th of 2016, I had my ileostomy reversal/takedown surgery. So far, it has been a success! There are days when I get very discouraged because of the amount of times that I do have to go to the bathroom, but it beats what I was going through by a lot. Plus, I am only just a little over a month out from my takedown.. Which is amazing that I feel this good with it being so soon. I was super scared because before these surgeries I had done a lot of researching online and had only seen and heard negative things about having a Jpouch. I am glad that I did not listen to the internet and went and did this for myself. Afterall, I did not really have a choice. I am slowly getting my life back and I can feel my happiness creeping back up on me, which feels incredible to be able to say. I do hope that the frequency stops at some point, but hey, I would recommend this surgery to anyone with the results I got!
That's just a little bit of my story and I am glad to say that I am on the road to a better life 
