My name is Will. I am 27 years old and was diagnosed in December of 2010. I have been having a really tough time with the disease as I’m sure everyone can relate. I am really nervous about things and am fearful about what my future holds. I am trying to stay positive but some days it is difficult.
Some more about me:
I am from New Orleans, LA. I am the GM of a large boat dealership. I like sports, hunting, fishing and spending time with my 3 kids and wife. I enjoy playing golf and traveling to new places. I use to really enjoy food, been hard adjusting with that issue, especially in New Orleans having so many great restaurants.
Symptoms I’m dealing with:
I have frequency issues. My symptoms are very inconsistent. One day I will have 5-7 BM and the next I have 15. Mucus, gas pains, severe cramping during bowel movements and have been suffering with nausea lately. Bloody BM as well, this has started going away the last week or two.
Hello to everyone, I have been on this site awhile and finally decided to post. I appreciate everyone’s courage here. I have read a lot of your stories. I finally decided to post mine. I want to thank all of you for sharing what you are going through, it has meant a lot to me and I’m certain countless others.Thanks in advance, and thank you Adam for making this site!
UC has changed my life tremendously. I am already an anxious person, and this disease definitely does not help. I am just fearful of what my future holds. Will I be able to keep my job, travel, spend time doing things with my wife, and children as they grow? I hope so, I try hard to stay positive, some days it is hard when I feel like I am always going to be sick. Things could be worse though, and I have plenty to be thankful.
I had a difficult time with my doctor, he has caused plenty stress in my life. He diagnosed me with UC after my colonoscopy in Dec 2010. I only had symptoms of bright red blood on my stool for about 2 weeks prior. That was my only symptom. I had some blood work done right after the colonoscopy. Two weeks later I had an appoint with my GI, at this point in time the blood had gone away and I felt completely normal. He reviewed my blood work and stated it came back negative for UC. He felt I had a bacterial infection and sent me on my way. I was absolutely ECSTATIC and so was my family that I was okay. Well, obviously that was the wrong diagnosis because here I am with UC.
Trying to keep things short. One year later to the day, December 1st 2011, I had blood in my stool. I could not believe it, I went and saw the G.I again; this time he diagnosed me with Ulcerative Colitis and says the biopsies did show positive from my original scope for UC. I was frustrated and felt very confused about the poor communication. He diagnosed me with proctosigmoiditis and said we should be able to get things under control. I flared for 9 months, blood, frequency, mucus & urgency. I finally had all symptoms disappear in October 2012, thanks to Rowasa enemas.
Only three months later in December of 2012 the flare came back, worse then ever. This time I have nausea, and fatigue as well as previous symptoms. My daughter was born three weeks ago and I would give anything to feel normal during this time. My last GI appointment was a few weeks ago, he reviewed my scope again( the original one from 2010). And now says it is pancolitis. I was really upset, angry and confused. I feel this DR has put me on a emotional roller-coaster. When I questioned him why he initially told me something different his response was simply, “No, it is definitely pancolitis.” Up to this point, I have only tried oral 5-ASA Meds, Rowasa enemas(no longer working and make me sicker). I have just started cortifoam enemas almost two weeks ago, these have helped but still having symptoms. No blood just lots of mucus, sometimes normal bowel movements then just mucus and loose stools. Still having 8 or so BM a day and some cramping. He wants to start prednisone which I am kind of skeptical on taking, and would like to know what to expect and advice or feedback would be greatly appreciated. He also mentioned 6mp or remicade, which I am not willing to try. So I am wondering if I refuse these medications, what other options do I have? I am looking for a new DR as well, The current DR was highly recommended, and I am having a tough time finding a new one.
I am taking Colozal 2 pills 3x daily. Corti-Foam enemas at night. The enemas have seemed quite effective. Rowasa enemas worked a miracle on my last flare, and now only make me worse. Doc wants me to start Prednisone, and 6mp or Imuran. I am definitely reluctant and almost refuse to take these meds.
written by Will
submitted in the colitis venting area