I’m Going to Get Through This – Because I Said So

Meet Emily, the Special Events Planner:

I am a 23 year old special events assistant working in Philadelphia. I was diagnosed 7 years ago as “severely diseased” and have gone through the usual ups and downs of UC since then. At this point in my life I am looking for support and to support others going through this disease – it makes it a lot easier knowing there are millions of other people out there who can relate.

The Lowdown With MY UC Right Now:

intestinal cramping, fatigue, bleeding, nausea, achey joints, loss of appetite. 8-10 bm’s/day

My Colitis Story:

Just over two months ago my life was almost perfect.

I had recently scored my dream job and my colitis had been in remission for over a year with the help of Remicade. Out of nowhere right before an infusion I started to experience some pain and bleeding indicative of a flare up. I heard it was normal to have “small episodes” between doses and so I waited until a week after my treatment to see if the symptoms would die down. They didn’t and I am now approaching two months of flaring.

I have had numerous flares in the past 7 years, mostly due to my lack of resolve in taking all of my medication and then some when I stopped responding to medication. Regardless of the cause, I was always able to handle the flares and not let them affect my life too much. This time the flare is different and so much worse. It is reminiscent of when I was first diagnosed, an episode that landed me in the hospital. The worst part right now is the cramping, pain so intense I am fairly certain childbirth is going to be a breeze after this.  I have tried to shake off the “woe is me” feeling from the get go but after two months of not sleeping through the night it is getting hard to feel optimistic.

Not only do I have to deal with the physical pain

but mentally it is draining as well.

I see how worried my family and friends are and I feel added pressure to look and act like I am ok so they don’t worry too much. At this stage of the game I am done feeling like this is out of my control and am looking for any guidance or advice on small things that help get you through the day, diet, and exercise (my grandmother is insisting I take yoga). I am also here to offer any support or information I have learned over the past 7 years. We all know first hand how hard this can be and I want to feel like I am doing something to fight back against it.

Where I’d like to be in 1 year:

Completely off steroids and symptom free. Able to eat all of the raw fruits and veggies I want and to not have to make an exit strategy anytime I go somewhere.

Colitis Medications:

Stopped responding to Asacol and Imuran after taking it for 5 years. Currently on Remicade, 20mg of Prednisone, and 40 mg Bentyl. Remicade until now was a wonder drug. You do experience a “remicade hangover” i.e. flushing, fatigue, grumpy mood, the day after but I gladly take this day in return for years of remission. I personally despise Prednisone because it does cause moon face and mood swings but in the past it has helped calm a flare. The Bentyl helps but only for a little while – I still experience multiple episodes of cramping through out the day and at least 2 in the middle of the night on the 40mgs.

written by Emily in Philadelphia

submitted in the colitis venting area




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11 Responses to I’m Going to Get Through This – Because I Said So

  1. julie November 9, 2012 at 11:55 am #

    Hi Emily,
    I was diagnosed 10 years ago and am 48 in 10 yrs i have only flared once, until now, and in hindsight i feel it has been mocking me and saving the best till last, cos this flare it seems is here to stay, i am into month 3 totally steroid resistant and been in the hospital twice 12 days total, my consultant warned me of the op, they sent the stoma nurse, whom i could not relate to, not her fault, i just did not want the information overload. I sometimes wonder if it’s all diet related and we have to be our own advocate. I am sorry your so sick, it’s such a horrrible disease to live with. Do you take a probiotic? I have started doing so, also been investigating prebiotic and am going to try these also, not sure yet if i can take both together. But i am sure our gut bacteria is unbalanced and these help.Also omega 3 fish oil is recommended, just a thought you have nothing to lose, I am now on my first infusion of infliximaab cos nothing else works. I hate the steroids too gained 20lb and lots of other things. good luck and take care

  2. AJ November 9, 2012 at 2:17 pm #

    Yes, this disease SUCKS. I’ve been in my latest flare for almost 2 months now and just started remicade treatments yesterday. Now serious cramping. UGH! About the time I feel like life is back to normal another shoe drops. I thought there was only 2. :) Anyway I was diagnosed about 7 years ago after I quit smoking. Almost feel like not being able to breathe would be better than this. I too stopped responding to prednisone, so we started remicade.

    Hang in there an remember you are NEVER ALONE.

  3. UC Family Boy
    Uc family boy November 9, 2012 at 2:54 pm #

    Hello people,
    Just wondering if anyone on here has done a diagnostic test of there stools and got and interesting results back?
    I have recently got back some results back which I am researching its outcome before sharing on here. Yep I got the all clear I have an imbalance of gut flora (expected) but there was some more astonishing results which might/ no it will be of interest to everyone with UC. Will share when I can translate it all.. Wondering if anyone else had done similar stool tests?

    • Tyraa
      Tyraa November 14, 2012 at 9:53 am #

      Yes..Uc family boy…. i tooo have needed to do the “stool test’ in the past… to determine if prednosone would be needed…or something else…they also were checking for bacteria…as well…shared some levels with me…at which was determined were higher than normal…of what..i dont know remember…but you are making me want to go dig up my old test results….please keeps me posted….of your findings…thanks

  4. Pam November 9, 2012 at 4:12 pm #

    Hi Emily, My 25 yr. old son was diagnosed 2 1/2 yrs. ago and was hospitalized each year. They wanted to remove his colon also. Remicade has worked wonders for him but he has eczema as a result. He went to Dr. today because he really wants to just take a break even though he is in remission. The Dr. recommended not to and told him in the Spring there is a new RA drug called Simponi that is working well for UC patients. It will be a self administered shot. Look it up, looks promising
    Hope you start to feel well soon

  5. bev November 9, 2012 at 6:31 pm #

    Emily…please please please try a good probiotic…at least 50+ billion strain strong. I have pancolitis and am completely off ALL MEDS and in FULL REMISSION. For the first time since being diagnosed with UC, I am not on any more meds. They all seem to fail eventually, and they made me sicker.

    No urgency, no looseness, no pain, no blood, only one daily ‘constitution’…and I eat whatever I want.

    I do not know why this has worked for me when it hasn’t for some…but it HAS for others besides me and I am trying to figure out why!!! I know that I never miss even one. Every day I take my probiotic capsule, and my L-glutamine, and cross my fingers that I never get another flare again. It’s been 9 months med and symptom free!!

    Just try probiotics…you have nothing t o lose and they really do help in so many ways…

    Cheers,
    Bev:)

    • Emily November 18, 2012 at 8:41 pm #

      Hi Bev,

      Thanks for the insight! Where do you get the probiotics – is this a cvs sort of purchase or a GNC purchase? Do you have a good dietician as well? Any time I bring up diet to my doctor he basically says stay on the BRAT diet until I am feeling better a leaves it at that. Thanks for letting me know and Happy Holidays.

      • bev November 19, 2012 at 7:44 am #

        Hi Emily…

        I just get the probiotics at the vitamin store! No special ordering at all.

        I have NO special diet or dietician!! I eat whatever I want. I’ve always been a healthy eater for the most part…but I love a good burger and fries or some pizza once a week or even more. I only have food issues when I was flaring…and then, it was like everything I ate ‘hurt’. My colon was just in rough shape I guess. Once you heal your colon, you can go back to just eating and not worrying again. Honestly, I just eat like a normal person without UC!!

        Cheers:)

  6. uma November 9, 2012 at 7:02 pm #

    Same as Bev, Probiotic Garden of life Primal defense ultra has my UC in remission for more than 2 years now. No harm in trying.

  7. Nick
    Nick November 11, 2012 at 8:25 pm #

    Hey Emily,

    I’m from Philly also. I got diagnosed this summer right after college and it has been such a struggle. I;m avoiding Remicade and despise prednisone even though it works. The side effects are terrible. I’ve been trying yoga sorta thing before bed and it is def relaxing. What is your diet like?

  8. Tyraa
    Tyraa November 14, 2012 at 9:04 am #

    Hay Emily….I am going thru the “moon look face” my self…altho…it does make my ckeeks look a littler fuller now…lol…But I know how you feel when you say you have to put on the “im ok” face eventho you feel bad….I prey that things work out with you…i too myself am having a “flare up”…it has almost been a month…and for me..this has been the longest…and worst I have ever had…in my almost 11 yrs of having UC…yesterday was my last dose of Prednosone…am I am scared to death…beacause I have never finished it…and still been in a flare up….keeping my fingers crossed…that its over soon…I hate not wanting to eat…then when I do get a taste for something…when it is time to eat it…i take only a few bites…and dont want it anymore…or i start getting the “bathroom urge”…at which I’m starting to not understand what the point of eating is…but either way…if i eat..or dont…i still have the appointment with the bathroom….that i just cant get out of…no matter how hard…i try to cancel…or postpone…Good luck to you….

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