New to this

Hello all,

I'm at a rough point right now. I'm new to this forum in the respect that I've never posted anything on here. However, I've read several posts and interesting testimonies on this forum. I guess I came here looking for some support.

I'm a 21 year old male studying to be a medical laboratory scientist. When I came to college, and even back in high school, I was determined to become a physicians' assistant. During my first finals week of freshman year, I started to develop these odd symptoms of constricted of passing stools and noticed some blood in the toilet. I was shocked. All my life I had never had any medical issues. I was a staple of good health. Ran track, ate whatever I wanted, worked hard in my job and in school while maintaining perfect health. So, when I saw this, of course I was shocked.

I stuck it out over finals with many night time trips to the bathroom and returned home to Rochester, Minnesota where my conditions worsened. My mom took me into the ER and the ER doc told me I had "college diet problems" and sent me home with a laxative. As I'm writing this I laugh because of how wrong this was. Of course, the laxative only made matters worse. I went back into the ER and they ordered a CT of my abdomen and found markers of inflammation. The PA I had suspected ulcerative colitis and sent me to stay over night in St.Mary's hospital and ordered a colonoscopy for the next day. So, I spent Christmas and my birthday (the 27th) in the hospital. Which, honestly, I didn't mind because I love hospitals for some reason.

Anyways, they started me on lialda and a steroid taper and I saw remission within a month as I returned to school. I was determined to live a typical college lifestyle with the drinking and partying (don't worry I still studied hard).

So I was doing great on lialda alone till about a year from my initial diagnosis. After winter break, I returned to school only to start passing stools 10-20 times a day with blood and urgency. My mom immediately demanded I come home and be seen at Mayo again. The next step in my doctors opinion was to start me on remicade. So, I spent a week in the hospital, while school was going on. I was put on another steroid taper and start remicade. I had 0 success with remicade. I was miserable during my 4th semester at college. All my friends were having the time of their lives while I was in constant pain, embarassment, anxiety, depression, etc. I was on the highest dose of remicade every 4 weeks. I tried several probiotics, methotrexate, naltrexone, chewing tobacco(for the nicotine), a 2nd steroid taper, but nothing seemed to help. My doctor constantly recommended a combination therapy of azathioprine and remicade but my mom was too scared of the chance for a fatal lymphoma and other risks.

I was lost, defeated, and just trying to finish the semester so I could go home. When I got home for summer break (I actually finished the 4th semester with a 3.6 which I was stunned by), I experienced rock bottom. This was undoubtably the worst time of my life. I shut everyone I knew out, was irritable all the time, bed ridden, had several accidents in terrible places. All of this made psychological symptoms worse on top of the crippling physical pain and constant running to the bathroom. I was terrified to go out in public.

I switched doctors to one of the most open minded and excellent doctors I've ever met. He listens to my opinions and concerns and comes with the best possible solution. He's worked with UC for many, many years and has a vast knowledge of the subject. He started me on entyvio and put me back on lialda. This was around the beginning of august. I have now been on entyvio for about 6 months with infusions every 4 weeks. I've seen substantial improvement. However, it is not enough to be happy.

I'm still met with crippling urgency and some days frequent stools, none of them formed either. I've done so much reading and research on this disease. My classes I take for my major I enjoy, simply because it helps me understand the mechanisms behind the disease and certain treatments. Needless to say, my life has become consumed by this disease. I just started the 6th semester of my college career. I'm going to graduate on time( May 2017) but that depends on if I make it.

I feel lost, overwhelmed, defeated still, and so many other negative emotions. I feel so ready to give up at times just because of my surroundings. None of my friends understand what it is like. I can't just go have a beer, I can't go crawl bars, I can't eat whatever the hell I want, I'm terrified to date anyone because I'm afraid an accident will happen or some other terrible situation.

Honestly, I don't know what I'm looking for by posting this story. If you are reading this and you read my whole story, thank you. If you didn't, I completely understand. It's long. I've never reached out to anyone. I feel very alone. It seems that the psychological issues that come with this disease have become too much for me. I feel as though I have no control over my life.

Anyways, that's most of it. It is very hard to express my whole feelings on this and explain everything that has happened. Thank you if you read this. Again, don't know what I'm looking for but I thought that I would try and reach out.

Sincerely,

Alex

I was able to relate to a lot of what you said. starting with being diagnosed while in college, first doctors dismissing me, having a few ER trips till I was hospitalized for several weeks.
thankfully, remicade is working for me.

correct me if I am wrong but it seems like you saw improvement after the entyvio but it is not enough
have they done any recent stool tests to check for pathogens?
are they positive its UC and not CD? what did your scope report say?
would you consider adding in rectal medications as those can help heal the most distal end of your colon. the rectum is usually the part that is most bothersome when inflamed (the urgency, accidents, tenesmus, not knowing if its stool or gas...)
people do very well with rowasa,
would you do a combination of taking rowasa and cortifoam(steroid foam, does not have all of the negative side effects that systemic steroids like prednisone)

I know that its tough being in college with uncontrolled UC, I made the choice to not tell people (told two people in administration and none of my teachers) I am not sure if its the right choice
I just applied to my masters program and I didnt mention anything in my applications

are you telling people? are you happy with your decision?
are your friends and family being supportive? if not find people who are

Sounds like you've had a horrible time! Studying can be really stressful - have you thought also about how to deal with stress (difficult with uc)? Do you follow the SCD diet? - I am recovering from an 8 day hospitalisation and I think the diet has really help speed up recovery.

I wish you all the best. Catherine

I would stick with some kind of rectal medication. Three weeks really isn't that long on them and inflammation in the rectum which you obviously have since you are having the urgency and accidents, can be very stubborn to treat. I would even ask for the steriod enemas. I know they aren't comfortable especially when you are so inflamed but they do help most people. If the whole container seems to be too much, start off with only doing half. You could also ask for the suppositories which are much easier to do but don't reach nearly as far up. However, you could do one of them in the am and the enema in the evening. I do that when I am flaring.

The enemas bothered me but canasa doesnt.

Uniform Charlie said...
I've always liked hospitals too. I think its just the feeling of being cared for. I second those who say you need more rectal treatment. Even with a mild to moderate flare, rowasa took me months to get back to 90%, but it worked. Others have had success with cortenemas, others with suppositories.

Someone mentioned the SCD...SCD is worth a try, but to be honest, I don't see how you could possibly do it while in college without SERIOUS help from your parents cooking meals etc. I contacted a researcher at Stanford University regarding the diet (they are doing clinical research on it) and she said that a certain percentage of Crohn's patients have had amazing results with it, even without meds, so its not BS, it really works for some. If it works for Crohn's, its probably worth a try for UC too.

What are your thoughts on surgery? I plan on keeping my colon on a short leash. I have too many good things going for me to give years of my life fighting uncontrollable flares.

Yeah the SCD diet is not feasible at all for college. It is way too expensive and time consuming. I tried SCD over the summer for a few weeks but I had lost so much weight by summer that getting my weight back was my main concern. I had lost 50 pounds, from 165 to 115. I was a skeleton and that was terrible.

The enemas were they most uncomfortable experience of my life. They may work but having to shove something like that up there every night and then trying to retain a liquid is also, not feasible for college.

I'm looking at combining azathioprine with my entyvio, which would replace my daily lialda. Getting my doctors opinion first of course.

As far as surgery, I almost gave in and did it over the summer but it is a 6-month long process and I would have had to take off school, which being in my program already would mean I would have to take off a year because of the way my classes line up. If I haven't found a solution by the time I graduate, then I will most likely move to surgery.