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14 Years and Still Going

Intro:

I am a 41 year old father of a four year old from New York City. The last flare up I had before my current one, was just before she was born. Ironically, now that her brother is on the way, I am suffering yet another flare. I was diagnosed with moderate UC when I was 17 years old although I suspect I’d been having symptoms back to when I was 14 years old. I spent most of my college years in the midst of prolonged bouts with the disease which clearly formulated how I spent my life. It wasn’t until I met my wife that I began to take the disease seriously. It was then that I learned as much as I could and tried to assist in my own care. Luckily for me, the disease is localized to a relatively small area but that area has serious disease. I was last scoped on good Friday and my doctor was very concerned with the severity of the disease in the area it consumed.

Some more background about Mitch:

I read the post someone put up that said, “Sometimes the best we can do is not shit ourselves in public”. That had a profound effect on me. I never thought of what I was willing to accept and not. I accept that there are going to be times at home when I simply won’t make it in time, but that is different when I am not home. I commute to work over an hour a day and I know every good bathroom along the route. I enjoy being outside and when I am not flaring like to walk with my daughter through the city or the zoo. When I am flaring I enjoy sitting in front of the TV or computer glad to have two bathrooms in the house. I finally starting telling people the truth about my disease as a way to explain long periods of silence when I am trying to ignore the pain or my abrupt cutting off of a conversation to go to the bathroom. It is empowering to come clean and say, “I have Ulcerative Colitis and it sucks,” but it is h ard to explain what this disease does and how profoundly it effects my daily life.

The thing I find most interesting about this disease is that my body is attacking an enemy that doesn’t exist. The same triggering effect of swelling and producing a slick coating is the colon’s way of protecting my body from harmful microbes that made it through the digestive tract. For me, for UC suffers, our colon just thinks that everything is a problem and continues to swell until the blood vessels burst and the blood starts pouring out. It is an autoimmune disease like so many others but it seems to garner so much less understanding.

Symptoms:

Right now it is 11:41pm and I am trying to get over the sever pain that feels like it has taken over my lower body. My flare up started with blood and mucus and got worse from there with the constant need to go to the bathroom and the pain. The medicinal protocol my doctor has me on now seems to be working so my main symptom is pain and exhaustion with a bit of blood every time I go to the bathroom. I am also wide awake after having slept terribly last night.

Mitch’s Story:

It’s funny, one of the ideas listed to the side of the text box asks, “how has UC changed your life?” It hasn’t, I’ve had this disease for so long, it has shaped my life. The night I met my wife, I was having such a bad flareup that I ate a salad just to seem like I was eating something and I left the table several times to go to the bathroom. I can’t leave the house without stopping to try to go and I am nervous as soon as I walk out. It has shaped my life so significantly that even when I am in a prolonged remission with absolutely no symptoms, I follow the same ritual and also take note of all the bathrooms along my route to know exactly where to go when the need arises. It is a lonely disease sometimes because throughout my life I was simply just embarrassed that I had it, so I really didn’t say anything. Sometimes I wanted to come clean to people but I let the disease take over and dictate. Over t he last ten years I have taken the disease more seriously, going for routine colonoscopies and seeing the doctor even when I am in remission, although it was about four years between visits after my daughter was born. I refuse to change my diet, I have been doing this for way too long to give in to diet since I have had prolonged bouts and prolonged remissions.

The doctor I have been seeing for the last eight or so years has been great. He is as concerned about my mental well being with the disease as he is about the disease itself. He is not overly aggressive with the colonoscopy (one doctor wanted me to have one every year) and tries to recommend preps that he thinks will be manageable. This time around he started with the Mesalamine enemas, then added the Asacol in. After 6 weeks I had plateaued and started to get worse so he switched me to cortisone enemas, upped the Asacol, and added in Uceris.

It has only been two days and I think maybe it is working, except for the pain I am experiencing at the moment. I am hoping for the best right now.

Medications…:

In the past I tried Sulfasalazine with varying results, I was on 6MP for a while which really seemed to help except my liver enzyme tests kept showing up with issues, I also felt like I had the flu for a month. I also used prednisone for a while but that just messed with me and I really didn’t feel a benefit from it.

The one thing I would recommend to anyone who has a colonoscopy coming up is to go on a liquid diet a few days early. I find that adding some Better Than Bullion into some hot water or having a bowl of pasta with butter tricks me into being full if I’ve had enough to drink and it really helps with the prep. I also find that any prep that requires me to drink something is terrible and there are some pill form preps that I can at least take with Gatorade, juices, water, sprite, or anything that isn’t a liquid prep.

written by Mitch L

submitted in the colitis venting area




6 Responses to 14 Years and Still Going

  1. Vidit Saxena June 4, 2015 at 4:13 am #

    hi mitch,
    i read your story its really sad that u suffered from ullcerative colitis for so long and how it influenced ur life. Last year I had ulcerative colitis too, when I felt strong pain and bloody stools so my doctor adviced for colonoscopy in which they found that I was suffering from severe ulcerative colitis , so they admitted in hospital for few weeks then they discharged me and gave me medicines , I took it for a month but no improvement then I changed my doctor and went to one of best gastrologist and took the medicines, he prescribed, I took it for months sometimes I felt better but again the symtoms would get worst .. even I changed my life style , as I am from India and mostly food in India is spicy so I changed my eating habbits and even my lifeatyle which was tought for me…but it also dint helped me much. Then one day I decided to take ayurvedic medicines and I started taking ayurvedic medicines made from herbs and it showed really amazing results …. I was 80% cured in 1 month after taking it and now I have no symtoms of ulcerative colitis and I am eating as I used to before and enjoying every food which I couldn’t when I was suffering from ulcerative colitis .These ayurvedic medicines have amazing effects in curing ulcerative colitis. And as they are natural they dont have any side effects . I know how it feels like to have ulcerative colitis so I want to help those who are suffering from it. It’s worth giving a try to ayurved, cause it’s totally natural and even if there is a chance that it not cure it wont harm too. So I think people should know about it . if u need to know more about these ayurved medicines contact me.

    • Mahesh N June 4, 2015 at 7:53 pm #

      Hi Vidit

      I am 47 and have been suffering from UC since 37. After 5 yrs of remission from first flare up I am almost 2-3 flares /yr for last 4 yrs. Prednisone have helped me ach time putting me back in remission for couple months. Want to try something more natural/herbal.

      Looks like an amazing success story for u. I am interested in knowing more about your Ayurvedic medicines. Can you share names and sources and dosages that worked for you. Also how long you have been on them since you started? How long did it take for them to take effect? Are you tapering off or looking to taper off?

      Appreciate your response.

      • Vidit Saxena June 20, 2015 at 11:33 am #

        hello mahesh,
        ya sure I would love to share you my story and how I beat ulcerative colitis. Recently I made a blog to share my thoughts and u can see it all over there. Which medicines I took and what else I did. like yoga practices and other stuff. I hope this may help you too.

  2. greg June 4, 2015 at 1:20 pm #

    Thanks for sharing your story Mitch.

    Although I haven’t known I’ve had UC for very long (3 months) and my severity isn’t as high is your’s I can definitely relate. I take the train in to NYC from NJ to work almost every day and when my flares where bad I would immediate go to the train car with the bathroom. Even now I make sure to know the closest one to me when I get on the train.

    Thanks for the tip about the colonoscopy I have a flex sig next week. Though I don’t like the idea of doing the liquid diet early if it helps I may just try it. And pills for prep sound so much better then the drink.

    Also just curious which diet are you on?

    I hope you find relief soon.

    • Mitch June 4, 2015 at 1:37 pm #

      Greg,

      Pasta with butter and also a heavy hand of chicken bullion helps trick your brain into thinking you have had enough to eat so the liquid diet isn’t as bad. The reason I started doing it was the preps would just zap me and as UC sufferers we have enough of a relationship with the bathroom as it is we don’t need to make it worse. Going liquid or less solid in the days before the prep just makes the clean out a little easier. I used to eat a ton the day before thinking that it would help and I just found it to be more work than necessary.

      I really haven’t done any of the diets choosing instead to treat with meds and gritted teeth.

      If you are lucky, and I count myself so, your disease will not progress too much or progress slowly and stay mild to moderate. If that is the case, there are good days and bad days and life continues.

      Good luck in your progress.

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