Who Knew Life Would Bring Me Here

here I am!

here I am!

Introduction:

Hi. My name is Mary and I am 62 years old. I was diagnosed in the spring of 2012 with UC in the lower left side. Thankfully I am retired and my kids are grown because I just can’t imagine trying to work and raise a family with the way I feel when in a flare. I found this site quite by accident and have found a lot of good info here and in Adam’s ebooks.

Some more about me:

I am from Buffalo, NY and currently live in a rather rural area in a nearby town. Makes traveling anywhere rather interesting because often there just is no bathroom on the way. My latest obsession is beads. I make bracelets and rosaries, but sometimes the thrill is just buying beads. I have more than I’ll ever use.

Symptoms:

Well as I sit here typing I’m heading into another flare. Why? Because it is Fall and the weather and temps are changeable. Here in Western New York if you don’t like the weather wait 15 minutes and it will change. My first flare in 2012 was in the spring, then the Fall of 2012, and now fall of 2013. No flare in the spring of 2013 because I was on Asacol. My brother’s GI doctor told him the change in temps affects colitis. I often wonder if people who live where the temperatures are pretty steady year round have less flares.

So my symptoms are cramps, urgency, fatigue and watery diarrhea 4-5 times a day, no blood or mucus yet, pretty mild actually compared to last time. I will be calling my doctor tomorrow.

Who Knew Life Would Bring Me Here

When I started having symptoms in 2012 my doctor’s office tested me for C-diff and said the test was positive. They put me on Flagyl. My primary doctor’s office retested and said I needed another round. The next day I went and had a colonoscopy with my general surgeon. He said there was no c-diff but I that had UC. But since I had just tested positive for c-diff a second time he said we should respect those test results and take another 14 days of Flagyl. So I did and it didn’t work. And I was so sick on that med.

Back to the surgeon I went and he had those c-diff test results faxed over to him, looked at them and said I never had c-diff and he couldn’t understand why my primary said I did. But I know. My primary doctor could not see me for 2 months so I had seen the Physician Assistant, and I believe she read those test results wrong. Be forewarned about trusting PA’s too much.

I continued having my gen surgeon treat me, even though he is not a GI specialist, because I trust him. He prescribed Asacol but before I could even get started I came down with a UTI which, when treated with Cipro stopped my UC flare as well. I have since read that Cipro is one of the drugs that may be effective in treating UC but most doctors dismiss this and move on to Asacol, or Pentasa etc. But Cipro put me in remission for over 5 months.

Fast forward to Fall 2012, another flare and doctor puts me on Asacol. Weans me off by summer, I’m ok till Fall of this year. And it begins again….

Does my family understand all of this? Some do, some don’t. My husband has been most helpful. I think some people I know kind of wonder why there aren’t some meds to take that would control it all the time.

Probably the biggest change in my life is having to know where every bathroom is no matter where I go and knowing that plans are always subject to change if I’m chained to the toilet during a flare. Diet is my other challenge. I’ve thought about the scd diet or at least a modified version, but it’s hard when your spouse doesn’t eat the same things.

My heart goes out to those whose UC never seems to go into complete remission. I am very lucky to have a milder case, at least for now.

Medications & Supplements:

I currently take Trubiotics, vitamin D3 and a multivitamin. I also use extra virgin olive oil and am gluten free as much as possible. I take Metamucil daily.

Asacol has worked for me and I presume I’ll have to start taking it again.

written by Mary S

submitted in the colitis venting area




Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

2 Responses to Who Knew Life Would Bring Me Here

  1. Richele
    Richele October 7, 2013 at 5:20 pm #

    Hi Mary! Thank you for sharing your story with us! You’ve certainly come to the right place. I have learned so much about this disease simply by reading other peoples stories, trials, tribulations. I, too am as “gluten free as possible.” I know for sure that wheat and possibly sugar? are a major culprit. Lately I have been eating homemade sauerkraut with almost every meal, drinking a smoothie, or two, or three everyday and trying to rest as much as possible.
    As far as family goes, it is very difficult to help people who don’t have this disease understand how it all works. I find that being completely honest about everything is the best way. They might not ever fully understand, but at least they might be sensitive to your ups and downs.
    You seem like a positive person, and I hope you are able to keep your head up through all of this. Living in a rural area has it’s upsides too, who’s to say you can’t pull over and do your business in the weeds? hahaha I’ve pooped on the highway too many times to count. yep, I’m a UCer ;)
    Take care,
    Richele

  2. Natalie October 8, 2013 at 8:25 pm #

    Hi Mary!

    I guess we both have three things in common. I am also in my 60’s and was born and raised in Buffalo, New York and have been living in Hamburg, New York for the past 24 years. I, too, was diagnosed with mild ulcerative colitis in October of 2011. As a matter of fact, it will be 2 years on October 10th since I was diagnosed. I think you are right by saying that this horrible disease is worse in the Fall. Just yesterday, I had quite a bit of blood when I wiped myself. I did see blood in my stool a couple of days ago. When I was first diagnosed with UC, my GI doctor prescribed Asacol and then approximately one month later I was taking Lialda. I didn’t like taking 4 pills a day and was afraid of liver damage, so I weaned myself off the Lialda and have been taking Ulimtate Flora Probiotics, L-Glutamine and Astaxanthin as per Bev (fellow UC’er who frequents this site and gives everyone great advice). Since I had weaned myself off the Lialda and taking the OTC drugs, I have been in remission for the most part. I truly believe the reason I am seeing blood is because I am in the process of moving and have been under ‘tremendous’ stress…..seems like everything is going wrong. I am able to eat almost everything I want with no problems…..don’t know how long that will last. Lots of luck with your UC neighbor!

Leave a Reply