Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

UC and Me – From a 10 Year Ulcerative Colitis Veteran

I have been lurking

on the site reading your stories and I thought it may be good to introduce my story.

I developed ulcerative colitis right before my senior year at….UC (University of Cincinnati) in 2001.

I was about to begin my final year of architecture school, which is the most stressful and time consuming year of the six year degree. After a couple weeks of diarrhea I went to my family doctor, who started running test, all while being convinced that I must have taken a trip to Mexico that I did not know about.

By the time school started I was losing lots of weight and using the bathroom at least once an hour. I spoke with my professors before class began and was left with the option to give it a go or tend to my health and begin my thesis at a later quarter. I was still not diagnosed and not willing to give into the unknown, so I began my thesis on time with my classmates. About six weeks after school started I finally got into a GI and a colonoscopy was scheduled. At this point I had gone from an athletic build ( I played rugby for the university) to a skeleton, in my eyes. I dropped from 205 to somewhere between 150 and 160. I had no muscle and no energy.

I was able to stay strong enough to complete my first quarter, although only able to stay in studio and awake for about twelve hours max, while most of my classmates where there for eighteen to twenty hours a day.
In November I was diagnosed and began my road to recovery. By the end of thesis in June of 2002, I was back to some levels of normal with the help of Sulfasalazine and steroids. I had started to put some weight back on. I made it through thesis on my first attempt, thanks to understanding professors and the support of my classmates…plus I am a kick ass designer (at least I think).

Spring forward to 2008, until this point I had zero flare ups and the Sulfasalazine was working great. In the midst of the “Great Recession” I thought it would be a good time to start my own architecture practice in Florida with another architect. These last three years have been a fight, but we are still hanging on.

In 2009 I started to have flare ups off and on, which I have contributed a lot of to the stresses of running a business. I have tried a couple of different daily medicines and currently take Asacol HD, which i like. I have gone through enema treatments to get one flare under control and more recently Entocort. My last flare, before the one I am currently fighting, coincided with the birth of my son (first born). By the time he was ready to come home I was back to going once a day. Now I am having a minor flare up , which hasn’t been too bad beyond some bouts of joint pain. Hopefully I get a handle on it soon, otherwise back to the doctor to say hi, pay my deductible and get some steroids.

I found this site while searching for stories of getting insurance, I am on my wife’s plan and they are charging us an arm and a leg, but it is better than none at all. I have always considered my colitis to be on the light side, reading some of your stories makes me realize how bad this disease can really be. All of you fighting this disease, in your individual ways, are true inspirations. I have been in low places a various times, not there now, but I am glad I have discovered this site! Thank you all for being part of this and thank you to Adam for starting this. I have learned a lot this week and your stories have given me a lot to think about.

Thank you all.

-Nicholas

medications: Asacol HD


Nicholas’s story is now entered into the 2011 Ulcerative Colitis Writing Contest!!!

You Can Join too, click here for details




stress

5 Responses to UC and Me – From a 10 Year Ulcerative Colitis Veteran

  1. OrdinaryWorldWhereRU June 24, 2011 at 5:50 pm #

    Thanks for sharing your story. Is the joint pain the only symptom you are experiencing during the current mild flair?

  2. Nicholas June 24, 2011 at 6:36 pm #

    For the most part it was. The sronger joint pains were new for me.

    I went to my doctor this week and got assigned a perscription of entocort, which worked for me in the past. The joint pain got pretty bad. Last Sunday I mowed the lawn and after both of my knees where extremely sore and my finger joints were bad enough that i couldn’t really grip anything.

    The entocort is helping, but I had a lot of personnal stresses this week (other illnesses in the family). I could use a stiff drink, but I know that willd o more harm than good. Still having some issues, but the joint pain has not been as strong. I have had some of my typical flare sysptoms: loss of appetite (although I do attribute some of that the the stresses) and chills and feeling worse after I use the rest room. Hopefully the stress will go away over the weekend, at least to some extent, and the the entocort will really start doing its job. Last flare it took about two weeks for me to get back to my normal. I go back to the doc at the end of next week and have a routine colonoscopy schedule for July 20th….fun, fun!

    • Adam
      Adam June 26, 2011 at 11:11 am #

      Hey nicholas, I hope you get past this flare soon. Just on a side note, I am starting to be a big believer that stress has got to be in some ways related to our disease. It seems that I read and hear from so many people who notice a spike in their symptoms during stressful times. So, please try to remove as much of the stress stuff from your life if possible, and hopefully that will put you back into feeling good as well. For me, going to quite places all alone is very helpful for me to get my mind relaxing and just listening to the sounds of nature. (not wanting to sound to crazy here or hippieish, but it seems to work wonders for me, both with symptoms, and just in feeling flat out “good”) best of luck buddy!

  3. Nicholas June 26, 2011 at 1:05 pm #

    Thanks Adam, unfourtunately this is a new level and kind of stress for me. The week started last Sunday (my first father’s day) with my mom in the ER. We live a long distance apart so I was stuck getting updates via text all afternoon. After a couple days in the hospital it was determined she had a small stroke. She was released on Wednesday, that same night my dog, who I have had since he was a puppy got very sick. Thursday morning he was admitted to the hospital. He has been diagnosed with Kidney disease and or fialure. If he responds well to treatment he can live for a few years on the right diet, problem free…sounds a little familar. Unfourtunately he has also developed an auto-immune issue which was killing his red blood cells. We went in yesterday and his count was critically low (to the point they thought a blodd tranfussion would be needed). His last chance are doses of prednisone, whcih can be his savior or what kills him. From our last report from the vet his red blood cell count was not falling anymore, but on the same note it wasn’t improving. He is more and more alert and eating, both good signs. He also had his catheter removed this moring because he was producing enough urine on his own (he also was having fun chewing through the tubes I guess). The next 24 – 36 hours should tell a lot as to will my stress be replaced with joy or grief.

    Leving my mind blank usually is a good thing, but right now, I am trying to keep it busy with work and other things. This has been the longest few days of my life as we wait on updates.

    I would also like to point out to all who read this and have pets. Do not take dogs for granted, they do not display or show illness until it is late in the game. One minute you can have be playing fetch, the next you can be wondering if they will make it through the night…it can happen that fast. Jackson is not even 8 years old, he is a big dog, but still too young to be in a fight like this for his life. He is one of the best dogs I have ever been around.

    • Adam
      Adam June 27, 2011 at 6:42 am #

      Hey Nicholas, I wish the very best for you and your dog. It sounds like you two have a really great friendship going, and thanks remarkable! Enjoy every moment of it!

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