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UC Doesn’t Define Me – It’s a Small Part of Who I Am

Sally BIntroduction:

I am a RN at a company. I have 4 children from age 25 to 8. I was diagnosed with Pan-ulcerative (total) Colitis when I was 29 years old and working in the ER on the night shift. So that means I will have had UC for 21 years since I will be celebrating my 50th birthday this December. I have had 2 colonoscopies this past year one was for my routine and the one most recently because I was bleeding but I was haven’t having any other UC symptoms. (No diarrhea, achiness, etc.) Doctor was concerned that this might be a sign of colon cancer.

Some more about me:

I live in Holland, Michigan and have been married to my second husband for 10 years. He has made me become adventurous and I have obtained my motocycle endorsement when I was 43 years old. I loved driving our Road King and watching people’s reaction when they see a woman driving it. I learned to scuba dive about 5 years ago and was able to scuba dive in the Caribbean. And this year I navigated our 31 foot boat all by myself while he was following behind in a little dinghy. I love coaching my daughter’s basketball team. I just love living life.

I am looking forward to being a grandmother this coming April in 2014. My friends and family would describe me as always happy with a big smile on my face. No one ever knows when I am having a flare up because I don’t complain about it.

Symptoms:

Right now I can feel a flare up coming on and I am not sure the reason behind it. (Normally I can tell that it is about to flare up and I know the reason why.) Right now I am having body/joint aches especially in my lower back. My abdomen is bloated and I have had days of diarrhea with some blood.

The achiness I am feeling in my joints and back are what made me start to search for other ways to control my UC and came upon this website.

I have never been hospitalized with my UC and don’t want to start now.

UC Doesn’t Define Me – It’s a Small Part of Who I Am

Ulcerative Colitis hasn’t really changed my life other than I may make sure I know where the bathrooms are when we go places. But I really have been lucky and figured out what can trigger it. For me lack of sleep or interrupted sleep on a consistent basis will put me into a flare up really quick. I think the interrupted sleep is the worse for me because I only average about 6 hours of sleep a night.

When I was first diagnosed I was really sick and was in my first marriage. He was not supportive at all. I had lost about 20 pounds the first month and I was working the night shift in the ER. Imagine trying to take care of a patient who is critical and all you can think about is please don’t let me poop my pants. Because when I first was diagnosed what was coming out of me could clear the whole house it was so foul smelling. A few months before the fever and diarrhea started, I had went to the doctor because I was getting sores on my head and now right before a flare up I get these same sores. I consider this one of my warning signs.

When I first got the diagnosis I really didn’t know a whole lot about the disease other than what I learned about in nursing school. So I didn’t a little research on it to learn a little bit more just so I had a better understanding. What I read I thought Ok so this is what I have it is not the end of the world. And this I believe has helped me over the years, because I chose not to dwell on the fact that I have a chronic disease and thought more of it as just a part of me.

I have been with the same gastroenterologist from the beginning. He suffers from Rheumatoid arthritis so he can relate with me when I am having a bad day. When I go into the office even if I am not feeling well I try to smile and joke and laugh because I know that a positive attitude with this disease makes all the difference in the world. And I know from working in the hospitals that colon patients are one of the most crabby people and I didn’t want to be one of them.

My first couple of years I was on prednisone 3 times and the dose starting out was 40mg per day and then tapering off over 2 months. Makes you a crazy person on edge all the time and you never want to let the pills stay in your mouth long at all. Learned that the hard way the bitter taste is terrible.

I was able to keep my ulcerative colitis under control for the most part unless I wasn’t getting enough sleep and divorcing my first husband helped. I wasn’t taking any of my medications like i was supposed to for my disease but I felt great and wasn’t having any flares after my divorce. Nurses if you haven’t learned are the worst patients.

I got married again and loving life avoiding the foods that I knew bothered me and my gut such as pork and corn. I was doing great until the second year into my marriage I started to have a really bad flare and I couldn’t figure out what was going on. (I had been not taking my mediation on a regular basis for about 4 years and doing fine.) So I tried being better about taking my medication as prescribed. I thought, maybe it was the stress of my mom having ovarian cancer and worrying about her. (Which by the way she is still with us today.) I had just gone in for my routine physical and the doctor said I was healthy but she wanted an ultrasound to check my ovaries since there really isn’t a good way to check for Ovarian cancer. I went in for my ultrasound and low and behold found out what the cause was for my flare up. I was 9 weeks pregnant. Imagine my surprise, shock and horror when I got told that at 41 I was going to have a baby again. I quickly made an appointment with my gastroenterologist. He had me switch to Asacol and prednisone for a short time to get me through my flare up. Which I did and then went on to have a healthy baby girl who is now 8 years old. I continued on the Asacol even while I nursed my daughter until she was 14 months.

I still am not great about taking my medications on a regular basis and for the most part do not have too many flare ups but when I don’t get enough sleep on a regular basis I know that I I will eventually have one. I have been very lucky and never have been hospitalized for this disease. I have learned that you can’t dwell on having this disease either. This is just part of who I am.

I am most concerned with my increased chances of colon cancer and most recently am not liking the pain I am having in my joints and especially my low back I feel like i am a hundred. I have a very supportive family and I am so thankful for them.

Medications:

I initially was on sulfasalazine (Azulfidine) and folic acid and I had great results with it for about 12 years but then I found myself pregnant at 41. The doctor switched me to Asacol since this was safe for me to take while I was pregnant. Now it is Delzicol. To me it is just a way for the drug companies to keep a high cost on Asacol since that should have been generic years ago. I have taken prednisone a few times. It is one of those medications that is most definetly a blessing and a curse. I cry when the doctor tells me I have to go on it because it makes me not a very nice person but I have learned over the years to just tell people just give me a minute. I some times take a vitamin when I remember. I am terrible about taking any type of pill.

written by Sally B

submitted in the colitis venting area





3 Responses to “UC Doesn’t Define Me – It’s a Small Part of Who I Am”

  1. Amanda LakeDecember 11, 2013 at 7:50 pm #

    hey Sally,
    thank you for sharing your story! I am also a nurse in the grand rapids area and was very recently dx with L sided colitis. feeling so frustrated and alone- not loving my current GI doc and would love to know who you go to in the area. I hate that it’s been 2 months and I am still on 40mg of predisone, not feeling much better. my doc. thinks the asacol I took for a week made my sx worse so now I am trying the enemas, which I am not too happy about. any help/suggestions would be much appreciated. it’s nice to know a fellow UCer especially a ER nurse like myself is so close :)

  2. Sally B
    SallyDecember 13, 2013 at 9:49 am #

    Don’t feel alone I am here!! And I can remember when I first was diagnosed and working the ER and worrying about having to run to the bathroom not a fun feeling when you have someone come in and you have to do CPR or be the person giving the medication during a code and worrying that you might poop your pants. Not a lot of fun that is for sure.
    I see Dr. Serdhaley in Holland, MI. I have been with him since the get go since 1994. I really appreciate him because he stays up on what is current and he knows that nurses are the worse patients and don’t always follow what we are supposed too.
    Which Asacol are you on? The regular Asacol 400 mg was replaced with Delzicol. I know the enemas are no treat but give them a chance they usually will help with the L sided colitis flare. What I have learned over the years is that I need to get a good night of uninterupted sleep if I go several days with interupted sleep I can feel a flare coming on. (Mine usually start with some sores on my scalp (rash looking) and I feel really tired. As I describe it to my husband, “my blood is tired that is what it feels like so bushed.” But I usually can get it back under control by making sure I get really good sleep. I also have learned over the years that certain foods I need to really avoid such as corn and pork. This is something with time you will be able to realize. I am one of the worst people for taking medication so I learned over the years what triggers the flares and try to avoid them so I didn’t have so many. AND I CAN’T SAY THIS ENOUGH YOU HAVE TO KEEP A POSITIVE ATTITUDE. This I feel is also a very key factor. Realize that you have a disease yes but know that it doesn’t need to consume you. Hang in there. I hope this helps. Sally

    • AdamDecember 13, 2013 at 9:55 am #

      Amen Sally!

      Keep a positive attitude, or at the least remain optimistic right:)

      For sure its hard to do when you’re staring at dripping blood in the toilet bowl, but things will and do get better.

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