I have had UC for 33 years. It started with just some odd cramping for two nights in the middle of the night right after my wedding in 1975. At some point it became pancolitis. It was always pretty mild. Mostly, it was urgency.
I had my first flare after having UC for 30 years. I was in the hospital being treated for bronchitis. I did not have a personal physician. They just assigned a doctor. He must not have known a lot about UC because he started ne on magnesium pills that I was to continue at home. When I took the first pill, my colon sprang to life. I had a formed stool with no blood. Over the next daysI deteriorated into my first flare. I was hospitalized, treated with solu-medrol and was OK.
Had my every two years colonoscopy March 2008. It showed remission and normal biopsies.
There are only two hospitals in this town. My insurance only lets me use one of them. Last March they sent me a letter saying they were in negotiations and I might not be able to use that hospital either. This upset me and I started bleeding. They sent me a list of new places to get medical care. They were all small clinics in small outlying towns. Most of them did not even have a GI. For $707.00 a month, I was going to have to get in the car, drive away from the city to a little hick town to get medical care!
In March I went to the ER and was a little anemic. They said "Oh, you are only a LITTLE anemic," and sent me home. They did not do anything...and I HAD CANCER!
In April I was having pain. I went to the ER. They gave me about a dozen prednisone tablets and sent me home...and I HAD CANCER!
Two days later I came back and insisted on being admitted. I did not want to see my old GI. He had gotten angry and upset me terribly when my insurance changed and I could not afford Asacol. So my personal physician called in a GI from a new group. He never showed and he was supposed to be my new forever GI. Maybe he did not understand this because my personal physician does not speak English very well.
Another doctor from the new group came into my room and immediately started backing towards the door. I was frantically trying to ask questions. After five minutes, tops, he said in a slightly loud voice "I've got to GO." and he left. Some woman came in (their nurse?) and said she had seen my Cat scan and all it showed was a little irritation, not inflammation and so no colonoscopy. A young doctor from the group came in and all he wanted to talk about was my Xanax. He said I would not get that if I came to his clinic because he didn't mess with that junk.They were not going to do anything so my personal physician sent me home...AND I HAD CANCER!
While in the hospital, I told everyone who came into my room that it felt like I had four hot charcoal briquettes just inside of me. All I got were blank looks. One little nurse had never even heard of Ulcerative Colitis.
So I made an appointment at Vanderbilt in Nashville about a two hour drive. I had to wait two months to get in. I had a colonoscopy day before yesterday. The doctor showed me pictures when I woke up. I HAD CANCER!
How did it grow so fast? I was always told if you had your colonoscopies, if they ever found cancer it would be small and they would take out your colon and you would be alright. But this thing is big. And I have been having strange weakness and shortness of breath for a few months. I can barely make it to the mailbox and back. I am bleeding and have to take one or two pain pills every day. Yet it was not even time for my next colonoscopy (March 2010) and my last one showed remission.
I kept trying to tell people I was having symptoms but they just kept brushing me off. This thing was smaller in March. That could have been a matter of life and death for me. And what about the CT scan. Did they not see it? Was it even there in April?
Today, the surgeons office is supposed to call to make me an appointment. Surely they won't make me wait for months with cancer? I just want this thing out but the GI says they may want to do other things first like radiation and chemo.
I have not slept . The GI called last night with the bad news. I don't think I will ever sleep again. I am actually having hallucinations right now. That happens when I don't sleep. The firplace logs are pink and green and jumping up and down. I was having hallucinations in the hospital in April because no one ordered me anything for sleep and I was up for three days. I told the young doctor about it and he asked if I had ever seen a psychiatrist!
The whole time my grown daughter was deciding to move to San Diego immediately instead of next year. She dropped out of nursing school and moved June 9. She has a new husband she hardly knows that she got off the Internet. He is getting out of the Navy next week. She does not know about the cancer. I need her so bad. I am going to have to cope alone with a new ileostomy
and all the bags plus chemo plus terror and having to travel two hours each way.
I live with my son and a sick cat. I can't ask my son to help me with the bag. He is already having to take off work to drive me. He has heart trouble and headaches. I saw him crying last night after he got the news.
I may not have long to live. I may not be here for Christmas. I will not know the stage of cancer for a long time. It will be after the surgery and any chemo or radiation they do. I am used to being here. I do not want to be dead. My son and my cat look a little strange to me. I think I already miss them.
This post is too long. I am sorry. But you and my son are all I have and I needed to write this.
Ulcerative Colitis since about 1976
Pan colitis since at least 1994