Now How Did I Get Here Again?

I have read several stories on this wonderful site. I truly feel for everyone who has to deal with this disease. I seem to be different from most cases, anecdotally and statistically. I was diagnosed in September of 2010. I am in my 40’s. As it turns out, you have better odds of winning the lottery than getting this particular disease at my age. I still haven’t started buying lottery tickets since I figure this means I probably don’t have good luck.

It started in late August with urgency and frequency. Then it started to look like I was filled with little balls of white cotton because that is all I saw when I looked in the porcelain alter. When it wasn’t the cotton, it had mucous and blood. I had gone to my primary care physician who was actually an NP. They did some tests and asked me to try gluten free. Nothing improved. In fact it got worse. I told her there was blood present but I guess she didn’t really process what I said because they sent me home with a stool test kit that read, plain as day, not to use if blood is visible. So, 3 weeks of this has gone on and 1 evening the white cotton balls aren’t white anymore, they are now red. I panic. It is clear something is very wrong here. I had been looking up the symptoms all during the 3 weeks and found 3 choices: Crohn’s, Ulcerative Colitis, or (gulp) Cancer. So I used my trusty digital camera and took pictures, printed them out and showed up at her office the next morning insisting on seeing her. She got 1 look at those pictures and her eyes boggled. Now I had her attention! And a valuable life lesson… take pictures. So she had her assistant call to get me an appointment *stat* to have a colonoscopy and EGD with the GI practice in town. I saw the form they faxed. It really did read ***STAT***. That apparently has little affect. The appointment was scheduled for over a week later. So I go immediately to GI office to get the paperwork started. My obvious fear struck the person who processes the paperwork because she moved my scope up to 2 days from then and switched to a different doc that she liked better.

So, I show up for my scope with my pictures and my fears. I am holding back tears as best I can but when they take me back, I can’t really stop them. I had never really been sick before. I have never broken or even sprained anything. Everyone was very nice and reassuring. So I wake up from the scope and a couple of minutes later, the doctor comes in. You have ulcerative colitis.

I thought this wasn’t going to be so bad. I never had pain when it started. I was put on 3 different medications and all seemed to be going well. Alas, that was temporary. I have tried many meds and so far we still have problems getting it under control. I now know how painful it is. I start Remicade in a few days. I was supposed to have started before now but that is a long story. I used to fight the thought of meds but I am working on not thinking that way anymore. If I had cancer, I wouldn’t think twice about them using meds to attempt to put the disease into remission. Why am I fighting it with a disease that also isn’t curable and they don’t know what causes or cures it? I am still working on that mind you….. I did read an article in the NYT that made the most sense to me. The guest columnist wrote that there is a genetic predisposition that encounters an environmental trigger and, voila, the disease is now present. Unfortunately they have no idea what the trigger is. It doesn’t change the fact that they still consider it an auto-immune disease per the article.

Thanks to all those who have posted their stories.

One last thought:
“Where is the life that I recognize? But I won’t cry for yesterday, there is an ordinary world somehow I have to find. And as I try to make my way to the ordinary world, I will learn to survive” Duran Duran

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

You Can Join too, click here for details


Related Stories: Starting Remicade Treatment


5 thoughts on “Now How Did I Get Here Again?”

  1. Hi OrdinaryWorldWhereRU. Thanks for sharing your story! I am glad to hear you finally got your colonoscopy and a diagnoses. I was on remicade infusions for 18 months it is a very good medicine. If I had one piece of advice for you it would be to go to EVERY infusion as you cannot restart remicade if you have missed a dose in case you have an allergic reaction to it. All the best, Helen.

    p.s You did not mention food or diet but it seems some foods can irritate the gut for some UC’ers but can be fine for others and vice versa. For me its raw peppers they irritate my tummy. I learnt this by keeping a food diary for about 2 weeks to see what my triggers were. I would highly recommend trying it while it wont cure your U.C it might help.

  2. OrdinaryWorldWhereRU

    Helen, thanks for the post! So if I miss any dose, they cannot restart you ever again? I would like to understand that better so I will ask them a lot of questions that never occurred to me. It mostly seems inconsistent right now. I still cannot find a pattern to what does or doesn’t work regarding foods. I haven’t been very adventurous though. I know that gluten doesn’t have an effect even now. I don’t get much fiber at all. I am afraid of fiber. When I was eating beans to ‘help’ my UC, it didn’t. It was based on some advice from a nutritionist. I seemed to get a little bit worse each day then. I did try well cooked spinach 2 separate times (I love spinach) but blood showed back up pretty quick so I haven’t tried it again. I drink lots of filtered water. I really hope that I can eat normally again soon. A Dunkin Donuts just opened up and I love their variety of donuts and muffins. I really miss blueberry muffins in particular. I usually go 2-3 times a day right now. On worse days it will be 6 right now.

  3. Yeah that is what I was told, your body builds up anti bodies to it and reacts to it when they restart it. Ask your GI about it s/he will give a better explanation than I can. As for food it really is trial and error. One day something will be okay and then the next day the same food might upset you. Then there are foods like high fiber foods which should really should be avoided when flaring but might be okay in small amounts when you are feeling very well. I found eliminating fiber completely made me become quite constipated so much so that I now have to take a type of laxative daily called movicol it is very gentle and brings water to the part of the bowel that needs it to get things moving. A lot of people with U.C suffer with constipation it is quite common or so I have learnt from websites such as this and support groups on Facebook. As for spinach I would introduce it in to your diet quite slowly and in smaller doses perhaps. It is full of iron which is something we often lack due to blood loss so it’s a great food in that sense. Water is good as we often get dehydrated due to loss of fluids threw constant trips to the throne. You should be able to eat a blueberry muffin but again in small doses and re introduce it slowly after all we have to live right…

    here is a link to the remicade website –

  4. I was in your shoes last year debating over whether to take the remicade or not….as my family watched over me in the hospital bed like I was dying. I knew it was going to be the right choice. I literally could not go on like I was and something had to give…so REMICADE it was. I will say that you have to be patient with it. It took almost 3 infusions for it to take affect. I have been on it for almost a year and it has been doing a good job! Like you said if it was any other disease you would treat it. I will say that the combo of diet and remicade has worked for me..I hope that you get things sorted out.
    All the best, keep your head up….it does get better!!
    Take care.

  5. OrdinaryWorldWhereRU

    Thank you for the encouragement. I had my first infusion today. Other than being sleepy, I feel ok. I sure hope this brings more food options back because I don’t have much variety now and I miss it. I can still recall the horrible condition I found myself in this past March. So far no side effect has been as bad as the disease so I won’t be fighting the Meds anymore.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.