Kinda Freaked Out

[solisspirit]

So, I'm part of the ulcerative colitis and celiac facebook closed groups, and I noticed someone on there saying that they've had an ulcer (ulcerative colitis) since 2006 and they never knew what a flare or remission was because they did everything they wanted to do and only went to the bathroom 4-5 times day. They were diagnosed with cancer. He doesn't know what stage yet but its in his rectal, whatever that means. I'm concerned now because I don't have any idea what a flare or remission is because I go to the bathroom about that many times a day too. I know I've heard microscopic colitis doesn't cause cancer, but because I'm undiagnosed, I don't know what I have yet. I won't be able to afford a colonoscopy for another three months, and this scares me. I looked up symptoms for colon cancer and its bleeding, which I rarely have any of, and when I do its little drops in the toilet bowl. Another symptom is thin pencil like stool, and I've have these on and off, when my poop is solid, for a while, though I wouldn't say they are pencil like, more like shavings. I just took this to mean I had inflammed intestines. I don't get fevers and I don't have discoloration of my skin, other than being rather white because I get no sunlight. Just a little worried.

[tex]

Obviously we can't diagnose you on this board, and without any test results or records not even a doctor could, but bear in mind that cancer doesn't develop overnight — it's a relatively long term event, in most cases. While I have no way of knowing whether or not you might have cancer, the odds of that happening are extremely low. This board is over 8 years old now, and as far as I am aware, to date at least, not a single member here has developed colon cancer. And I attribute that primarily to the fact that we aggressively treat the disease by removing all food sensitivities from our diet.

When IBDs are properly treated, first and foremost, by eliminating gluten and other major food sensitivities from the diet, then the risk of developing colon cancer is no greater than the risk experienced by someone in the general population, which is very low. If gluten remains in the diet though, and therefore the disease is not properly controlled, then the risk of developing colon cancer is significantly increased.

If you get little to no sunlight, you should be taking a substantial vitamin D supplement, because vitamin D deficiency is a primary cause of IBDs and other autoimmune type diseases. And conversely, IBDs tend to deplete vitamin D levels. Therefore most of us are low on vitamin D (unless we take a supplement) simply because we have an IBD. And last, but certainly not least, vitamin D helps to prevent cancer, because it strengthens the immune system.

Tex

[solisspirit]

Well, my concern is many of us go undiagnosed for so many years that those of us with no dx don't know what not to do. In my case, I thought I just had IBS-D and didn't think much of it because I never had any other symptoms but D. Plus, for the most part I always thought pain and blood was associated with cancer. This individual basically claimed he had none, and sounded a lot like anyone on this board. This is where it got scary for me, because what if? I know polyps take time to develop, and then for them to develop into cancer, but this guy missed a colonoscopy in a two year period and now he found out the news. It's just frustrating because now knowing this I have to wait around even longer because my two failed attempts at getting my required tests were denied.

[solisspirit]

btw, found out this guy is 45. Wonder if age is of any importance here. I'm 34, but have had D for about 8 years.

[tex]

Well, increasing age certainly increases the odds of developing polyps, but genetics also plays a major role. If there's no history of colon cancer in your family, you have a much lower risk than someone who comes from a family with a history of colon cancer.

Tex

[solisspirit]

I don't know of anyone in my family with a history of it. In fact, as far back as I can think nobody has had it. But, then again, I don't know of anyone that had IBD problems either. I still think the anti-depressant I took probably had something to do with causing my problems.

[wmonique2]

I think you can buy colorectal cancer kits and test yourself and send it to a lab until such time that you get insurance and get further tests if necessary. Check into it. I just had one done at my general practitioner's clinic (which is a community clinic since I don't have insurance either, as of yet).

Monique

[solisspirit]

Thanks. I found a website that gives away free test if you are at a high risk. I don't know how they confirm this, since I'm undiagnosed, but I'll see how it works.

[brandy]

Can you resubmit to your insurance company? It seems ridiculous that you were not approved after 8 years of D. (Forgive me but I think you said your insurance company declined.)

[DJ]

Thirty four would be super young to have colon cancer. Red bleeding is usually associated with hemorrhoids or irritation. That's not surprising for someone who has had D for so long. Pencil-like poop is a step up from D. I had it as I teetered on the edge of D and I have it occasionally when I eat a little too much fiber but not quite enough to give me D. I think you are on the right track. I don't think you have colon cancer.

[solisspirit]

Thanks DJ. That's why I come to this site, for support and honesty. I don't know anyone else that has struggled so much with insurance or the ability to just come out of pocket 500 for my colonoscopy. I'm 34, and I went back to school, so between taking care of my kids and my family life, I barely have enough to get by let alone an extra 500 for an out of pocket expense that though I need, I have to wait for because I just can't come up with it. My hope is that once I get my degree in teaching I can live a better life, but for now I have to do the best I can. My insurance company I did have I don't have anymore because I refused to pay for a service I couldn't use. Now I'm just waiting to get married to my fiancee soon so I can be put on her insurance, which is United Health Care.

[UkuleleLady]

Hi Solis,

there are some people here who are undiagnosed and who had results in going GF/DF/SF/(& maybe egg free, too, like me). I know it is daunting to remove all this, especially with children and their yummy leftovers, but I wonder if you might get some improvement through an elimination diet after a few months.

I understand you are freaking out about your symptoms but I would try to relax (if possible) because you are so young. I think if you had UC you would be seeing a lot more blood in your stool.

I would operate under the assumption that you have MC and try the diet. Try to enjoy your family and chill out whenever you get a quiet moment.

I am sure that working, kids, going back to school and all this is creating a lot of stress in your life. Any moment you can just breathe and quiet your mind will be helpful to you.

Also I saw your pictures and you're very handsome, don't look drawn at all. You will flush out when you start to heal. I went from 122 to 104 lbs and I am back up to 115, and I look normal again. it will come back again.

Take care of yourself.

Nancy

[JenniferS]

Welcome to the forum, solisspirit! I think your feelings of anxiety are normal, and as you begin to cope with your symptoms and find answers through this forum and diet change, those feelings will subside. When I first got sick, I was convinced I had everything from cancer to parasites to candida overgrwoth. :) But like everyone else has assured you, cancer is not likely.

Regarding the bleeding, I have lc, and I have significan bleeding when I'm flaring. In fact, whenever I try to wean of budesonide, I begin to bleed, and when I go back on it, even if the D remains, the bleeding stops. So I think inflammation itself can lead to bleeding.

I am sorry you do not have health insurance. :( I hope you receive a dx or find remission soon. Perhaps you could discuss your symptoms more with a PA, asking for a trial period to see if budesonide helps?

[DJ]

Solisspirit, Don't be frightened if a doctor checks you for several conditions before considering drugs like Entocort. My doctor told me directly that I needed to be checked for several things because Entocort is "masking". It's a prudent process.

Have you tried Pepto Bismol? It helps some people. It didn't change things for me.
Have you tried Loperamide HCl? It's over the counter and it's not very expensive. It has helped me to a degree at times.

Hang in there!
DJ

[lorimoose]

There is a good safety net in the U.S. I urge you to apply for Medicaid, especially if you have children. It is a program designed to help people when they hit a rough patch. Medicaid would cover medical tests, including a colonoscopy, and medication if needed. You may have something far milder than MC, but you may have something far worse.

You can start a GF Df SF diet right away and see if that helps some of your symptoms. It will take awhile. I know it is not easy ...but it is the first best thing you can do.

Lori