Hi I’m Amanda. I’m a 22 year old college senior and was diagnosed with severe ulcerative proctitis 2 months ago. I was given this diagnosis after a colonoscopy and a biopsy from different spots of my large intestine. I’m sure my symptoms are nothing in comparison to someone with severe ulcerative colitis, but I have to say this disease was taking control of my life for a while and there are still many times where I feel like that today. I have had a TERRIBLE experience with my doctors and have felt like they weren’t there for me. I feel very alone in this situation and have no idea what steps to take to get healthy. That’s why I’m here.
Some more about me:
I’m currently a broke social work student who works and goes to school full-time. My stress levels are very high and I worry it could be making my ulcerative proctitis symptoms worse.
Before going on medications I would have EXTREME emergency urges to have a bowel movement. These urges would force me to literally run to the bathroom or drive at very high speeds to get home and into a bathroom. There were also occasions where I would have accidents and also wake up during the night with an urgent need to have a bowel movement. At this time I am always very gassy and will have several bowel movements in a day. I will almost always have stomach cramps after eating and sometimes have blood in my stool.
I am really starting at the beginning with this whole thing so any information I gain will help me. Here are a few questions….
- What is a proper diet for someone with this illness? There seem to be a lot of miracle diets out there but I am confused figuring out where to begin.
- What foods should I definitely stay away from? Will I ever be able to drink coffee or alcohol again?
- How do you explain your illness to new people that come into your life?
- How has this illness changed your life?
- Is there any hope for a better future?
- Have you been able to find a good doctor? The doctors I have seen so far seem to have very little time for me and will walk out of their office before I am able to ask questions.
- Did you ever feel alone in fighting your illness? Right now I am the only person I know with ulcerative proctitis, colitis, or crohn’s. I hadn’t even heard of the illness until I started experiencing symptoms.
- Is it uncomfortable for you to talk about with people? It has been really hard for me to be around people when I am experiencing pain. When people ask me if I’m alright it is very hard to tell them there is something wrong with my colon. It is always taboo to talk about feces and the colon. I always try to not make people uncomfortable. However, I think I would feel a little better if I were able to talk about this openly. Is there anyone else who understands what I mean?
- Do you tell your employer about your UC? As someone who is about the enter the professional working world this is a growing concern of mine.
- Has having UC ever kept someone from being hired?
Canasa- This was the first medication I was put on. It wasn’t fun inserting something into my rectum every night but it worked wonders for me at first. However, it eventually stopped working after the first month and many of my original symptoms came back.
Apriso- I currently take 3 apriso at .375gm per day. This has helped me significantly but symptoms will come and go. I will have blood in my stool on occasion and will sometimes have painful and intense urges to have a bowel movement.
written by Amanda
submitted in the colitis venting area