New To This

Introduction:

My name is Tammy, I am 41 yrs old, from Syracuse, NY. I was first diagnosed 2000, and I am fairly certain how this happened to me.

My Symptoms:

I am not in a flare at this moment, but I tend to be alternately gassy and/or crampy most times.

My Story:

Ok, well, here it goes. I hate talking about this…I worked in a crime lab in 2000, and, as I always do and have done, I drank a lot of water. I would fill up a large bottle and drink throughout the day. Long story short, we found out we were drinking water contaminated with shocking amounts of bacteria. No coincidence this is when my symptoms manifested. So began the journey.

I was officially diagnosed about a year later. I was in my 20’s. Of course, I can offer no proof to this theory. I just know in my gut it’s the reason. And yes, that was a bad pun. Of course this has changed my life, in all the usual ways. And yes, I have cycled through all the usual patterns and behaviors associated with a chronic disease. It has been difficult to accept. I am a police officer, and it’s my job to help others, not be helped. I have missed a lot of work, and to this day I have struggled significantly with the psychological effects. I am stubborn, and don’t give in to anything easily, but I am older now, and growing weary.
I should say, my disease appears to be active in my rectum only, although my doc said tissue further up the road is indicative of UC. So, I understand there are many who suffer more severe symptoms. That having been said, this has been decidedly unpleasant…

My biggest concerns and fears:

  1. That my disease will progress from proctitis.
  2. Cancer and other related illnesses (have had a few weird things already).

I don’t tolerate drugs well, and I am single, so I fear that as I get older, this will result in the inevitable surgery, and I will be alone. I tried to convince my doc to remove it all now while I’m fit, but he will not. FYI marathon training threw me into flares, but I am very physically fit. This is all very isolating. Has anyone elected to have surgery before they had no choice? Every drug I have tried has been largely unsuccessful. Fortunately, suppositories seem to keep me from bursting at the seams.
Thanks for everyone who has contributed to this site, it has been helpful.

Where I’d like to be in 1 year:

As far away from crime scenes as possible, able to eat and drink like a normal person…one can dream!

Colitis Medications:

My longest flare was a year, and after trying all the usual suspects, with negative results/effects, my doctor told me to stop everything. So I did. As of this writing, I only use Canasa suppositories at night. I don’t always remember though.

written by Tammy

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.

6 Responses to New To This

  1. Tracy August 27, 2012 at 4:32 pm #

    Hi Tammy,

    I was diagnosed with UC in 2008. Was doing pretty good using balsalizide, enemas, and lialda (not at the same time). Since I was feeling good I decided to go off my meds. Big mistake! I didn’t know that once you find a med that works that you need to stay on it as maintenance. I have been ina flair since last year September/October. I have been on short term disability for about a month now. During that time I went on azathioprine/imuran. . Was on it for almost 3 weeks but my lipase (a pancreatic enzyme) was elevated due to the medicine so my doc took me off of it. I will now be starting Remicade as soon as all my paperwork is done. U hope it doesn’t take too long. Anyways when I first went to my doc roughly a month ago I was hell bent. On surgery. I just want to be done with this disease. My doctor is/was adamant on taking the medicine route and saving surgery as a last option. Everyone in the medical field seem to feel this way. I understand that with this disease the treatment is least invasive to most invasive but I don’t think a person can truly understand what its like to live with this 24/7 unless they live with it. Even though I’m scared of the medicines I figure I might as well do the medicines and have them either work for me or fail so that I am that much closer to surgery.
    Good luck with everything and remember you are not alone.

  2. Lane August 27, 2012 at 6:08 pm #

    Hi Tammy,

    My mother was born in Syracuse, NY and I was born in Rome, NY. I’m sorry you are having to go through this. Right now I’m in a flare and it’s no fun. Today I went to a hematologist as my platelet count is high. He told me this could be related to the UC. I have been diagnosed with mild to moderate UC. I know that milk bothers me so I have eliminated it and also coffee. You just have to figure out what works for you. It’s a trial and error situation. My primary care doctor suggested probiotics and I am going to try one recommended here called Ultimate Flora by RenewLife. I also take vitamin D3 as my calcium is low. I’m on Lialda and it seems to help. I also use the cort enemas when things get really bad. The hematologist also said sometimes an iron deficiency can cause bowel problems. I wish you all the best! Lane

  3. Bev August 27, 2012 at 6:37 pm #

    Hi Tammy!

    Welcome here.

    I am in complete remissiom now and med free. Yes…med free.

    I have had UC for 13+ years. Was on asacol all of that time. Also enemas and suppositories during flares. They all stopped working. I considered surgery before I needed it because I was just so damned sick of it all!

    I decided to try a good probiotic(there are lots of them out there, and much cheaper than meds, by the way)while I was still on the useless 12 pills of asacol per day. After two months I was feeling so good (actually I felt alot better even after a few weeks), that I made the decision to stop the asacol. That made me even better, believe it or not! Everything firmed up, no more pain, no more urgency! I think people bail out to soon when taking probiotics. Just please try it. You may be very pleasanly surprised, as I was! Especially based on what you said about the water you were drinking, and all the bad bacteria. It sounds like you should repopulate your good bacteria. Probiotics will do that, but you have to give them time to work. Your good bacteria didn’t disappera overnight…it probably took some weeks or even months, so it will take some time to regenerate it.

    I hope I’m making sense. It truly did work for me. I take a 50 billion strain probiotic. Any vitamin store can guide yiou towards the right one, based on the UC. Remember…give it time to work. After that, because the only symptom hhat I still had left was a bit of bleeding, I was recommended L-glutamine, to heal my colon, and also astaxanthin, which is a natural anti-inflammatory. The bleeding is totally gone too!

    I feel like a normal person again, and all because I took probiotics. I’ve heard that they don’t work so many times from others on this site…but I wonder if they just don’t take them long enough? Needless to say, I’m SO glad I didn’t get the surgery!!!

    Cheers, and please give probiotics a try. They cannot hurt you. You have nothing to lose!

    Bev:)

  4. Bev August 27, 2012 at 6:39 pm #

    Oh, by the way….the three things that I take every day (above) cost me about $50 per month total!!

  5. uma August 28, 2012 at 4:36 am #

    You cannot go for an elective surgery. That is a crazy thing to do. I am glad your doctors dissuaded you. Sooner or later a cure will be found and you are all so young, so please be optimistic.Most people with uc lead normal lives. It takes time to learn to manage it. And probiotics is a must try, it has helped a lot of us. Good luck.

  6. Lynn August 29, 2012 at 9:47 am #

    Hi Tammy!
    As I was reading your story I immediately thought of what both Bev and Uma have recommended to you and that is to try good quality probiotics. I too am in remission because of these and some other over the counter supplements. Can I also recommend that you read the book Listen to Your Gut, by Jini Patel Thompson? She talks alot about how to rid your body of bad bacteria, viruses, etc; how to repopulate your gut with the good stuff and gives you instructions on how to do so.
    I also need to add that diet is HUGE.
    Good luck to you!

Leave a Reply