Confession: I Have Ulcerative Colitis…And It Sucks!

Fair Warning: This may be a little TMI for some.

As far back as I can remember, my mom always had really bad stomach problems. It was just how it was growing up. I felt bad for her but never knew it was that big of a deal. A little over 5 years ago, while at work, my mom nearly passed out from losing blood that she hadn’t told anyone had been happening. A customer realized something was wrong and rushed her to the hospital. Hours later we found out she had a cancerous mass in her colon. The next day she had surgery to remove 3 feet of her colon and thankfully today she is still cancer free.

But now, as I get older, I am having more and more of the same problems she had when I was growing up.

About a year and a half ago I started having to run to the bathroom more and was getting really bad pain in my left lower abdomen. After a few months of these problems slowly getting worse started the constipation and bleeding. I put it off for months thinking it was nothing. But then I remembered my mom had similar problems and ended up with colon cancer. I finally realized the urgency of my problems and stated the process of seeing doctors to have tests run.

The testing started with an Upper GI which found no problems in the upper half of my digestive system. Then it was time for a colonoscopy. (FYI make sure to read the dosage of medicine you are taking to ‘clean yourself out’ or you will most certainly overdose on the stuff like I did!) The colonoscopy came back with conclusive results. I have Ulcerative Colitis.

Finally an answer! I went on a 6 week round of enema medications that seemed to clear up the inflammation. And although it was uncomfortable taking medicine this way, it worked.

Months went by without any real problems. But over the last 6 months the pain, urgency, and bleeding have all come back. As of right now I’m actually in worse shape than I was when I was first diagnosed. I wake up in the mornings running to the bathroom and hoping that the pain isn’t too bad to get ready for work. I manage to get myself ready and get out the door to work and drop the kids off at school for the day. I spend a big part of my day at work praying that I don’t have an episode and embarrass myself by running to the bathroom. When the pain hits, I double over. It doesn’t matter where I am, I have to stop and take deep breaths and put pressure on my abdomen until the pain is mild enough to keep moving. This makes life outside of my house really difficult most of the time. And because of the blood loss, I have become anemic again which causes me to be extremely tired. I have no desire to do anything by the time I get off work and spend a lot of time laying down. I’ve given up playing with the kids. We don’t play outside, ride bikes, go to the beach, etc. I feel like a failure of a mom because my condition has kept me from being more active in their lives. And this has pushed me into a state of depression. So many problems all tied up into my stupid Ulcerative Colitis!

I’ve researched my condition and many people suggest eliminating trigger foods. My problem is that I don’t really have any. The only thing that really seems to set me off is milk based products, but I don’t generally eat these things anyway. I’ve tried cutting several things but it doesn’t work. And there are days that I give up and eat things like alfredo sauce and have no problems at all! So frustrating!

Now, by nature, I am not a complainer. I can’t stand being around people who are constantly saying negative things and never looking for the positives, so I in turn try my best not to focus on the bad things. So when I’m not feeling well, unless it’s REALLY bad, I just don’t mention it. I didn’t realize that I hadn’t even told my husband how bad my condition was getting again. He finally started noticing how much pain I was in daily and convinced me it was time to get back to the doctor. We had been so focused on his heart problems that mine issues didn’t really seam like that big of a deal to me. But I agreed it was finally unmanageable and made an appointment to see my primary care doctor.

Normally this would be a condition that I would see my GI doctor for, but with taking a new job, my insurance was ending and I didn’t have time to get to the proper doctor. I’m very lucky to have a very understanding PCP and she was more than willing to help me with my condition until I could get into the GI doctor when my new insurance kicks in next month. (Funny enough…I never even mentioned to her that I was finally diagnosed with this condition. Told you I’m not a complainer!)

My doctor currently has me taking an oral steroid to try and decrease the inflammation, but so far it’s not really working. I’m a week in on this medicine and so far I seem to be getting worse. The steroid keeps me from sleeping and gives me indigestion. On top of this, I wake up super early in the morning with more pain and urgency that usual and stumble as fast as I can to the bathroom only to spend a long time in there with problems. On top of the steroid, my PCP prescribed me a mesalamine medication which is an immunosuppressant drug. Getting this medicine has been next to impossible. These medications are only name brands and my insurance company wont cover them. It has taken 4 different medicines being prescribed to FINALLY land on one that my insurance will cover and that is at 3 times the normal copay amount that I pay. Not to mention these medicines have to be taken for 6-8 weeks depending on the type, and insurance will only cover a 30 day supply at a time. So far it has been a nightmare trying to get this medicine and the stress of the whole process has only made my condition worse.

So here’s hoping that the new meds I will be taking will finally clear up my problems and I can get back to a normal life. I have missed out on so many things over the last 6 months and I am ready to get back to feeling like myself!

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4 thoughts on “Confession: I Have Ulcerative Colitis…And It Sucks!

Add yours

    1. Thanks Tracey. It was a tough thing to write about. No one wants to share things like this. But maybe it will help someone suffering like I have been. And thanks for the prayers. They work wonders!

      Like

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