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

Impending Surgery

Samantha H f picjMeet Samantha:

I was diagnosed when I was a just becoming a teenager. About 16-17 years ago. My last colonoscopy was about 6 months ago. I was recommended for surgery. Nothing was improving. Recommend to have a left sided colostomy. Surgery scheduled in January.

Some more about her:

I’m from Maine born and raised. I cherish the sea air like a religion. My favorite thing to do is set up a chair on any coastal beach and sit for hours and hours. I’m very good at that…sitting. I love to cook for others. I truly believe that food brings people together. I really think I won my husband through his stomach. I haven’t been to many different places, but it’s a goal to travel the U.S.

Symptoms:

I not currently in a super flare, but I wake up every morning with a very gassy stomach. Like embarrassing, stinky, loud, take cover gas. It will subside usually by 10 a.m. About once a week it will stay that way for the whole day. I also have extreme urgency when I have to have a BM. I call it the 3 minute window. I literally have 3 minutes to find the nearest bathroom or else. I have nausea, painful gas, bleeding, and small hard formed Bms daily. This is nothing compared to a flare.

Impending Surgery

I was diagnosed with UC when I was a child. I’m not quite sure how old I was…it’s been about 16-17 years. I remember I used to double over with cramps and bloating. I had a colonoscopy and the doctor wanted to start me on meds right away. I took Rowasa Enemas, asacol, and prednisone. I got better for a few years. I got married, and started flaring when I was expecting my first child. Same regime for a while and I got better.

After about 5 years, my marriage started falling apart. I had two small children, a house, a husband who wouldn’t work, and I had to toughen up. While I was working full time, being a single mom, and trying to manage my life, I suddenly became so violently ill that my best friend randomly came over one day and found me on the floor next to my bed…so dehydrated and so out of it that I couldn’t walk. She rushed me to the emergency room. I had a colonoscopy and was told my whole colon was inflamed. I was very sick.

I had to start on some serious drugs or go to surgery. I chose drugs.

After two years of hardcore drugs, (Remicade, Humera, Imuran)I still have pain, urgency, fear of accidents….my UC is running my life. I can’t go anywhere without scouting out the nearest bathroom. I’m fed up! I told my doctor this and she was relieved to hear it and referred me to a surgeon. I’m terrified, but hopeful. Surgery will literally cure what I’ve been struggling with for most of my life! Does anyone have a stoma? I’ve done the research, but how bad is it? I’ll be cured, but what about my intestine coming out of my belly?? I want an active life. Will this be the answer? Meds never worked for me. I have nothing left. This is it. Help?

Medications Samantha’s Taken:

Rowasa enemas as needed
Asacol
Imuran didn’t work
Remicade partially worked
Humira didn’t work
Always always always Prednisone
Suppliments: fish oil, probiotics.
Currently, no meds and trying to stay on top of a flare.

written by Samantha

submitted in the colitis venting area




Maine

6 Responses to Impending Surgery

  1. Adam
    Adam January 5, 2015 at 1:44 pm #

    Hey Samantha,

    Thank you so much for sharing your story here. One thing for sure, you don’t have to feel like you’re going into this alone. There’s quite a few other UC’ers from the site who have experience with surgery and luckily for us, many of them have shared parts of their battles here for people like you to read and ask questions(that’s right you can ask questions in the comments section below each and every story on the site and like you, the writers will get notified when you submit a question and most of the time, they’ll write you back pretty quickly. One of the cooler things about UC’ers…we be caring about others in the same tribe:)

    So do me a huge favor when you get some free moments and flip through some of the stories in the surgery section which you can find right here: http://www.ihaveuc.com/category/colon-surgery/post-surgery/

    I think you’ll see some stories that sound VERY similar to yours. And many of them talk in detail about what life is like after surgery. Heck, if you want to watch some video that I shot when I met up with Curtis (a San Diego Surgery guy who had his colon removed and is doing real well…feel free. that link is right here:

    http://www.ihaveuc.com/a-massive-j-pouch-success-story-finally-interviewing-curtis/

    Keep us posted Samantha, we be a pulling for you:)

    -Adam

  2. Suresh January 5, 2015 at 2:48 pm #

    Hi Samantha,

    Sorry to hear about your plight. Have you tried the cabbage juice, exra virgin olive oil or metamuclil? I believe the second and third were recommended in this blog. For the cabbage juice, just do a Google search “cabbage and colitis”. You’ll find tons of info. Our son has been diagnosed with UC and we have had fair amount of success with the juice and the olive oil. We saw the Metamucil recommendation here a few days back and yet to try it. Please be aware I am not qualified medically to make any recommendation. I am sending it in the hope these are a few options to try before concluding that surgery is the only option. Please use your judgment and consult the right folks before trying. I believe cabbage juice does cause gas problems.

    Good luck!

    Suresh

  3. Darah January 5, 2015 at 9:30 pm #

    Samantha,

    I just had a total colectomy about 5 weeks ago. I’m 18 and I’ve had UC since I was a kid too. I was always scared to even think about this surgery. I had always hoped there would be one more medicine out there that I could try, but I failed on all of them- even Prednisone. After a few months of on and off flares and failing new medications, I was hospitalized and surgery was put on the table. I had known it was coming for a while, but it still scared me.

    The day after Thanksgiving I had my surgery and I was home a week later. For me, it took a lot of mental toughness. It took me days before I even looked at my bag. I cried the first time I had to change my bag by myself. But honestly, this was the best decision. I can eat again. I don’t have to worry about running to the bathroom immediately after, or sometimes during, a meal. This choice isn’t the easiest one, but it is definitely worth it. I can finally experience life the way I want to.

    You’ll get used to the stoma. Have fun with it like I did and name it if you want. Maybe even read up online about personal experiences.

    I hope that this surgery will bring you the quality of life that you are looking for. Good Luck!

    Darah

  4. Tom
    Tom January 6, 2015 at 4:06 am #

    Samantha

    I’m surprised they are suggesting leaving the majority of your colon on and giving you a colostomy? That is not the usual surgical treatment for UC. A sub total colectomy (which i had) is the usual course of action.

    I was going to go down the Jpouch route via 3 operations. After the first operation, i decided i didn’t want a jpouch and got on just fine with my stoma. You can be active, you can do whatever you want with a stoma. Obviously most people wear support belts when doing exercise to reduce the risk of hernias etc but it wont stop you from doing anything.

    All the best

  5. k January 7, 2015 at 5:16 pm #

    Hi Samantha,

    I have had an ileostomy for 40 years. It was emergency surgery so I didn’t have to “debate” it, just sign for it. A few problems over the years, but nothing like trying to live with uc. (Quite frankly, it would take a courage I don’t have to live with uc.)

    All the best as you go forward.

  6. shelly in maine January 17, 2015 at 2:43 pm #

    Samantha….did you have surgery??
    Please keep us posted.
    Best from a fellow Mainer!
    Shelly

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