Remicade and Then What?

Introduction:

At 38 I was diagnosed with Ulcerative Proctitis. As a full time working mom of one it was difficult to understand what was going on at first. Thankfully I have a very supportive husband who is now the only worker in our family as I take care of our homeschooled son and try to get my health under control.

Some more about me:

I am still running on occasion with my husband and son as we like to do local 5Ks and half marathon outings. The UC has made it difficult to practice and makes my times not so great but at least I am proud to be out and still trying. I do make sure I know where every porta potty station is.

Symptoms:

Currently I have loose and bloody stool and occasionally its only blood that comes out. I get very crampy in my hips and sides. I have not been running a temperature but I do get tired easily.

Remicade and Then What?

I am a 39 year old female that was diagnosed in May 2012 with ulcerative proctitis. This came out of nowhere in the sense that no one in my family has every suffered from this before. While I had symptoms for several months including loose and bloody stool, I didn’t really know what was going on. I finally made the appointment with my GI who did a colonoscopy and diagnosed the UP. I was given a prescription for Canasa but due to cost never had it filled. The UP finally just went away on its own and I was in remission until February 2013 when the symptoms returned. At this time I was in full flare and in May 2013 ended up in the hospital for four days. At this time I was given a CAT scan and was told my UP had progressed to full UC – left sided.

Since that time I had been on enemas and original round of prednisone. I have just had my third round of Remicade and am hoping it will take. Between rounds 2 and 3 my flare came back after about three weeks. At the follow up appointment after my hospital stay my GI did a sigmoidoscopy and stated that my colon looked healthier and was not in flare. I stayed awake to see it and it did look a lot better than previous images I’d seen. He took some biopsies, all of which came back cancer free, but were still inflamed. At this point we opted to start Remicade.

If the Remicade doesn’t work, should I explore the possibility of surgery and if so, what exactly does all of that entail? I just feel at nearly 40 I am too young to live the rest of my life with a colostomy bag. Is it easy to care for? Live with?

Medications:

Any medications that I have taken seem to only have worked for a limited time before my flares would start up again. I don’t feel to date that anything has truly worked.

written by Mrs. K. Shane Boen

submitted in the colitis venting area

9 Responses to Remicade and Then What?

  1. Tom from Northampton
    Tom August 26, 2013 at 11:57 am #

    Mrs K

    Im 24 and I had surgery 3 months ago. Im not going to lie and say its a walk in the park living with an ileostomy bag, but living with UC and taking meds is much more difficult. There is such a stigma about having a “bag” and it is totally unfounded. They never smell and you can hide a bag under most clothing.

    So all i can say is it’s not that bad and shouldn’t be something to be scared about. Let me know if you have any more questions

    Tom

    • diane d September 3, 2013 at 9:50 am #

      I also am afraid of surgery, I am afraid of the breakdown of skin from changing the pouch so often. How is that for you??

      • k September 3, 2013 at 4:54 pm #

        (I initially posted below on Aug. 30)
        Hello Diane d,
        In my 38 years with an ileostomy I have fortunately never had a skin problem. When putting on a new appliance, I carefully wash the area around the stoma and after it is dry coat the area with Smith&Nephew Skin-Prep and let it dry. I also put some Hollister Adapt paste on the karaya ring of my Hollister appliance before I put the appliance on. I change the appliance every 4th morning.
        Hopefully you could find some ileostomates in your local support group and a wound care nurse at your local hospital to talk to for their experience / thoughts / sugestions.

  2. Debbie
    Debbie August 27, 2013 at 12:32 am #

    Hi K!
    I too love running long distance. Unfortunately, running is very stressful on the body, and kills off good bacteria in your gut. I have had UC for 8 years now, and I have time and time again tried to return to running. I noticed I could get up to about 3 miles 3x’s a week, and then I would start flaring. It sucked. Still sucks. Bc running always felt like my stress relief, my vice, a part of who I was. Finally, I have found other things that help me relieve stress and feel good about my body- yoga and counseling!

    So my only advice is to explore other forms of exercise that are less stressful on your body, and evaluate your diet. I just bought a juicer and for the first time, did a juice fast during a bad flare up. It was the first time I’ve had a flare up that bad and was not in pain, was able to leave my house, and had the energy to feel positive! Maybe the Remicade infusion I had also had something to do with it…but I’ve had flare ups on Remicade as well…so I’m thinking not.

    :) i cant give any opinion on colostomy bags, but I hope you find something that works for you. Just remember, there are a lot of options out there regarding diet and lifestyle that mostly require commitment and discipline

    -Debbie

  3. Noel August 27, 2013 at 2:01 am #

    I’m 44 and started Remicade in 2011. I had been in a really bad way. Pan colitis, blood, urgency, and had resorted to wearing Depends. I was going to the toilet 24 times a day. Remicade was the miracle worker for me. Gave me my life back.

    September 2012 I began having symptoms of something else. Muscle and joint pain the week before my Remicade was due. By February 2013 it had progressed to being a month before. I would be on prednisone during the day to work without pain, and painkillers at night.

    June 2013 I had a severe allergic reaction only 10ccs into the Remicade. Tight chest like it was being squeezed, red face. They stopped the drip, put in solumedrol (sp?) which is a steroid and Benedryl. I got nauseous and lost my breakfast. They cleaned me up and gave me oxygen. Finally it subsided. After watching me 30-40 minutes to make sure the reaction was done, they let my husband drive me home.

    I’m now on Humira. It took longer to work on me than Remicade, but I am in remission. I give myself an epi-pen like shot every 2 week now. I don’t experience the flu like feeling I had the day after Remicade.

    There is also a new drug called Symponi. It’s supposed to be better than Humira for UC, but in June my health insurance didn’t have the amount allowed for UC, just RA (half of UC).

    So there are other options besides surgery.

  4. K. Shane Boen August 27, 2013 at 5:58 am #

    Thank you everyone for commenting. I hope to find something that will continue to work and make life fun again. It’s annoying having to always find a way out of places just as I arrive.

  5. Juliet
    Juliet August 28, 2013 at 7:08 am #

    For myself, surgery is always the last resort. Especially if you do not feel ready for that step. There are different meds to try, diet, alternative therapies and relaxation techniques. Surgery is such a final thing, once it’s done there’s no changing your mind.

    I know lots of people have had success taking this serious step. But it can create a new set of problems and will change your life once again.

    It’s something I am not ready to do. Anyone considering surgery should do plenty of research and find out from others who’ve had the surgery themselves. You can’t just take the word of a doctor as its your body and your life.

    I too had to quit running and swimming, in favor of yoga. I enjoy cycling and have a balance ball for core work. The only times my body has ever felt ‘normal’ is when I’ve made drastic changes to my diet. This and trying not to worry about the world.

  6. k August 30, 2013 at 10:11 am #

    Hi, You asked if having an ileostomy and a “bag” is easy to live with and care for.
    I have had an ileostomy for almost 39 years and yes, although there are some challenges, it sure beats living with uc. No pain, no urgency, no meds. Life just rolls along.
    I do have to say that mine was emergency surgery, so I really didn’t have to make the decision. My colon perforated on a Saturday morning, and it was taken out that afternoon. All I had to do was sign for the operation.
    The j pouch is now a standard operation for uc, but it hadn’t been “invented” yet in the mid-1970s.

  7. K. Shane Boen September 4, 2013 at 5:37 am #

    I am into week three of my most recent Remicade infusion. Fingers crossed and so far no flare up yet. This was about the time it started again last month. Did anyone else notice it took longer to see results than from the first, initial dosage?

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No matter what, colitis flares don't last forever, don't forget it:)