Ulcerative Colitis and Kidney Cancer

Introduction:

I was diagnosed in 1976 at the age of 10. I am now a 46 year old mother of two grown children and happily married (most of the time) for 25 years. I have had my uc go from proctitis to full blown ulcerative colitis and now back down to more like proctitis. Have been on many different meds, will get into that later.

Some more about me:

I grew up on a farm and started driving school bus when I was pregnant with my first child. I have been driving the bus for 23 years and haven’t killed a kid yet they can prove!! I love the kids as if they were my own, most of the time. My friends and family say that they always know they are going to have a good time when I am around as I don’t know any strangers and I love to make people smile and laugh.

Symptoms:

Right now I am dealing with about 5 stools per day with the wonderful bloody mucus. It has been better and it has been worse.

UC and Kidney Cancer

I have a very unique situation and that is one reason I am writing my story. I hope to find someone else out there with the same situation.

I had surgery to removed my inverted appendix and resect a couple of inches of my colon 36 years ago. Then in Aug. I started having pain deep in my chest on the right side. The pain moved to more behind the shoulder blade in a few days. Called the Dr. on Monday. After we all had pretty much agreed it was my gallbladder. Saw him on Wed. and had to go back on Thursday for a sonogram to be sure. Got a call that afternoon to come back on Fri. am for a CT. By noon on Friday I was sitting in his office with him telling me I had kidney cancer. I had a radical open nephrectomy in Sept. I was stage 4 grade 3 with metastises to the adrenal gland and one node was positive. I had to be removed from the drug study and the 6mp as they lower the immune system which could allow the cancer cells to grow again. That is the problem. UC they want to lower my immune system and for kidney cancer they want to boost it. I am a catch 22. I am looking for any one else like me. My oncologist, internist or surgeon had never dealt with the two of these diseases together before. Please help me in finding some help out there. I tried the NCI but they weren’t interested and the cancer kicks me out of uc drug studies and the UC kicks me out of studies for cancer drugs. Kidney cancer does not respond to chemo or radiation so drugs are the only defense at this time.

Medications:

I began with azulfadine and would use the cort foam enemas for bad flares. I then went to sulfasalazine for a number of years with a boost of prednisone for flares as well. Then I went to Asacol which did not help long. My current doctor switched me to Lialda, 6mp, and I was getting golimumab shots in a drug study. I was excited and I was in remission for several years.

written by Janene G

submitted in the colitis venting area




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4 Responses to Ulcerative Colitis and Kidney Cancer

  1. Helen April 21, 2013 at 4:02 pm #

    Hi Janene
    I have just read your post. So sorry to hear of your situation… I live in the Uk near London so it’s midnight here now and. Need to sleep.however I just wanted to let you know you are not alone. I am 48 and was diagnosed with UC when I was 23.. Thought that was bad enough but 10…. How difficult for you. I was also diagnosed with kidney cancer in 2009 which came as a massive shock,I will write more tomorrow when I am less tired! Take care. Hugs xx

  2. Amos April 21, 2013 at 9:33 pm #

    Wow Janene. I am so sorry to hear your story. What a tough place to be in for you and your family. There are many, many alternative treatments out there that could be used for both. You could check with a Naturopath if you wanted. I will mention two of the more well known treatments that come to mind that are often used for both IBD and cancer. Unfortunately, the chances are fairly high that your Dr.s will not know much about them and may not be interested in learning or supporting them. The first is Low Dose Naltrexone (LDN). There isn’t a study specifically for UC but Dr. Smith’s study for Crohn’s is fairly well known and you can find it on the web. Dr. Bihari (one of the first physicians to use LDN) treated many, many patients who had cancer with LDN and they did very well. The FB group for LDN and IBD is also very supportive and there are some people on that forum that are in complete remission on LDN alone. I have taken LDN myself for about a year because it is cheap, safe, and without side effects. I also think it might prevent my UC from turning into cancer. I would start there. The second treatment is much more controversial and will probably lend itself to a lot more side effects and difficulty for you. Medical Cannabis has been used for IBD (usually chron’s) and for cancer patients. There are multiple studies available on the web about cannabis use for both IBD and cancer. If you do pursue this route I would try to do it legally (not sure which state you live in) and would try to get oil or herb with as much cannabidiol and as little THC as possible so you are able to function normally and be there for your family. I understand if you don’t have any interest in either of these options but at least you are now aware of them. Good luck to you. You deserve it.

  3. Helen April 25, 2013 at 12:53 am #

    I tried to leave a reply several days ago but see that my comment is still awaiting moderation…. Followed the managing subscriptions link and also emailed Adam about this but still no joy…

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