CANCER! How did it come so fast?

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.

So, sorry to hear that. If you really wanna make all those people that blew you off sweat, you take that diagnosis into their office and just say you'll be hearing from me.

Vandy's IBD clinic is great. I have been using them for 2 years now.

I would really like to but what if I had some kind of bad episode sometime and could not make it to Nashville. I would have to go to this ER and they are the only people I can see.

I hate living in a smaller town and having my doctor 2 hours away but they tell me a lot of people come from far away. I wish I could talk to some and see how they manage.

Do you have a long travel to Vanderbilt?

That is a crazy situation and I am sorry you have gotten pushed around so much. I think we know when something is wrong with our bodies and I am sick of getting brushed off by doctors when I explain that I don't feel right. When I was flaring really badly a few months ago, I was very anemic and for people say say "you're a little anemic" and send you off without treating you, is awful! I was terribly sick, out of breath and barely able to walk across the house without feeling winded and drained.

I am amazed that this has happened to you in such a short time. I am sorry. I think you need your daughter. I know it is hard to open up and even harder to ask people to change their lives for you but sometimes you have to. You should do something to show the people who blew you off how wrong they were. As doctors, it is their job to listen to their patients and do whatever necessary to set their minds at ease. Have you gotten a second opinion? I think it is always a good idea to have as many options open as possible. Having a bag isn't the worst thing in the world. I've seen a lot of people with UC thankful to have a bag over the disease. You will beat this. Try to think positive. You can get free drugs from the manufacturers if you're unable to pay for them, there are usually ways to beat the system if you search for them. Please let me know if there is anything I can do to help.

There are lots of colon cancer survivors out there and hopefully you will be another one of them. Colon cancer is very curable if found in time. It's also a very slow growing cancer. I think your story points out the need for everyone to be vigilant with their care. We are all at increased risk of colon cancer after having UC for 10 years. I know UC patients who once hit 20years had their colons removed for preventative measures. Some would find that unnecessary but others wouldn't want to take the risk. I wish you well for your upcoming surgery and urge you to connect with other colon cancer survivors.

Sue

I'm so sorry this is happing to you . Try to stay strong and positive i will be praying for you and your family. I can't believe the doctors did you this way. O they would be hearing from me if i were you !!

Best wishes to you and your family. Fingers crossed...hoping everything will be ok.

Stay positive and you'll make it through this.

I am so sorry this has happened to you. My aunt was diagnosed with stage 4 colon cancer about 3.5 years ago...and guess what...she beat it! I know this is easier said than done, but try and have a positive attitude...you can get through this. You have support on this forum and we are all here for you! Take care and know that you are in our thoughts!

It's takes me about 40 minutes to get into the office there.

Thank you for all the replies.

I am sitting here alone waiting for the surgeons to call. My son is coming at lunch to take the cat to the vet. His feet keep swelling up really big for no reason. They give him a cortisone shot and he gets better but any shot can make him turn diabetic. Then he would have to have regular bloodwork. Because he is a slasher at the vet's they have already told me he would not be a candidate for treatment of his diabetes and would have to be put to sleep instead. I couldn't lose him now.

This house is poorly built and even with a regular exterminator, chiggers get in. I am covered in bites and scratching uncontrollably.

The hallucinations are awful. Everything looks like it is alive and moving. I don't know anybody and my family is just my son and absent daughter. I wish I had someone to talk to. Being alone is terrible. You know, when someone is in prison and does something bad, what do they do? Solitary confinement. And me and lots of other people sit alone all day.

REDBUGS!

This is the South. They are tiny little red bugs that live in patches in the grass. You can be standing 5 feet away from someone and one person will be eaten up and the other not touched. They make a tinly red bite that looks like a flea bite. They put their mouth part in your skin where it is thin and secrete a substance that make a microscopic hard "drinking straw" When they are finished with you, they drop off but the straw takes about two weeks for your body to absorb. That is what causes all the itching. For TWO WEEKS.

I am allergic to them so one bite anywhere causes my whole body to itch. Right now my legs are covered in bites and I am in agony. I just called the exterminator.

Ah, I don't think we get them in the North, but if it makes you feel better, I get really bad poison ivy (I have to be put on steroids or the rashes don't disappear) so I'm kind of in the same itchy boat as you. Though, at least I know how to avoid that as long as there's enough light to see it.

UC76

My thoughts and prayers are with you and I hope they get it all out and you will be fine. A very dear friend had a chest xray in dec and it was read all clear, 5 mos later he wasn't feeling any better, still coughing etc and he had another chest xray done at another hospital and it came back suspicious...it ended up being a massive malignant tumor wrapped around his heart and bronchial tubes and unless they can shrink it, it is not operable and he'll have less than 1 year to live. The new docs looked at the original chest xray and showed my friend the tumor was clearly visable as a shadow even in the old xray...yet another case of malpractice...very scary.

On another note to all here re CAT scans: When I was in the ER two years ago in the midst of a VERY severe flair my cat scan showed NO inflammation...the colonoscopy done the next day showed moderate to severe inflammation...the point is cat scans are not conclusive for imflammation especially in the GI track...beware.