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Chasing After the Ever Elusive Remission

Recent picture of me!

Recent picture of me!

Intro:

BIO: My name is Christiana. I am 20 years old and was diagnosed at the age of 18 after a year undiagnosed. I lost 50 pounds before diagnosis, down to 98 pounds at 5’8″. Since diagnosis, I was in remission for about the first six months on prednisone, but have experiencing a seemingly unending flare for the past year.

Some more background details:

I enjoy working out, but haven’t been able to for quite some time. Every time I even think about going to the gym I end up having to trot off to the bathroom for the next few hours.

My Colitis Right Now:

Currently, I have what I’d describe as a sour stomach most days. On my bad days, I’ll have a two hour period where I’m essentially stuck in the bathroom.

Chasing After the Ever Elusive Remission

I first noticed symptoms two days before Christmas 2011 during my senior year of high school. A hemorrhoid formed and I started noticing blood in my stool. My starting weight was about 138 pounds. I lost five pounds between Christmas and New Years. From there it continued to get worse. I was getting up 3-4 times during the night for a BM. Luckily, the urge to go would disappear before I got to school in the morning. During this time, I began experiencing fatigue and several new hemorrhoids formed. At the time of my graduation in June 2012 I weighed about 125 pounds.

The summer of 2012 my symptoms worsened considerably. I had essentially no appetite. I was tired all of the time. Because I could barely eat, I didn’t have much in my system to form into stool, but I still felt the urge to go, oftentimes 10+ times a day. My hair was falling out, to the point where any time I’d run my fingers through it, I’d end up with a handful of hair. It wasn’t until the end of the summer that I finally admitted to my mom that I was experiencing frequent diarrhea. At this point, it was too late to meet with a gastroenterologist because I would be leaving for college in a few days. By the end of summer 2012 I weighed 111 pounds.

My first semester of college was rough. I found it difficult to make friends as I did not have the energy to go out and meet people nor did I want to have to explain why I wanted to stay close to a bathroom to people I had just met. By the end of the semester I was down to 98 pounds. At 5’8″ I was skin and bones, able to count my ribs and every single vertebrae. I could wrap my hands around my thighs and I had a thigh gap the size of my fist. Basically my mom was horrified when she first saw me while picking me up for Christmas.

I visited a gastroenterologist a few days before Christmas, almost exactly a year after the symptoms first started. After a colonoscopy, I was diagnosed with UC and put on 60 mg of prednisone with a taper. I immediately started feeling better and put on 15 pounds within 2 weeks. My hair started growing back in, my fatigue went away, and I continued to gain weight. I was put on 4 pills of Lialda to control my UC and it worked well for the spring and summer of 2013.

At the beginning of my sophomore year of college I began experiencing the old symptoms of the frequent urges. Since I was still able to eat, my BMs were more substantial and oftentimes very bloody (sometimes it looked like someone had been murdered in the toilet). Mostly it was in the middle of the night and early morning so I was able to continue with my day as long as I didn’t need to be anywhere too early. However, I began losing weight again, my lowest weight down to 126. After multiple stool sample my GE diagnosed me with cdiff and prescribed antibiotics. However, the antibiotics did not work, even after switching to some hardcore ones (vancomycin I think).

Finally, after my sophomore year ended (spring 2014) I went in for another colonoscopy (so much fun). My GE found the cdiff was coming up as a false positive and put me back on 60 mg of prednisone with a taper. I no longer have bloody stool, but still have an upset stomach most days. Essentially the only times I have the dire urge now is when a bathroom is not conveniently close. My GE wants to start me on humira. After reading all the reviews online about humira I’m sort of weary to start it. Help?

Medications / Supplements:

60 mg prednisone and tapered down (winter 2012-13 and spring 2014)
4.2 g lialda (winter 2013-present)
vancomycing (for cdiff)
difficid (I can’t even remember why)
humira (about to start in fall 2014)

written by Christiana

submitted in the colitis venting area




9 Responses to Chasing After the Ever Elusive Remission

  1. Adam
    Adam September 7, 2014 at 1:46 pm #

    Dear Christiana,

    Thank you so much for telling all of us how things have gone in the past few years concerning your colitis. For sure you’ve had some super rough goes at it, but on the positive side, you’ve also had times of feeling better.

    If you’ve poked around this site for a bit, you’ve probably noticed that there’s quite a few (like in the hundreds if not thousands now) of people here who have had an awesome amount of success with making diet changes to treat UC. As well as that, adding in some of the probiotics that are available. Either in pill form, or other ways like via sauerkraut for example.

    I guess for me, since I myself went down the Remicade and Humira road and it wasn’t a solution at all…I wish I’d be told about how happy many UC’ers are with making diet changes to treat UC.

    So, if you’re up to modifying what you eat, it may help you as well. I’m about 95% your doctors will tell you diet changes have no effect on UC, but don’t make the mistake I did 6 years ago and let that completely guide your decision making. Read some more here, and you very well might be able to join the group of young people (there’s oldies like me at 35 years also…:) who are controlling their UC more naturally without the need for immune suppressants that don’t have the best track record for treating UC unfortunately.

    Here’s a link with many stories I’d suggest you read through:

    http://www.ihaveuc.com/category/specific-carbohydrate-diet/alternative-medicine/food-and-diet-for-colitis/

    best to you,
    Adam

  2. avi September 7, 2014 at 1:54 pm #

    Hello,
    Welcome to the forum Christina.
    I’m truly sorry to hear you are having so much discomfort with your UC, but you came to the right place to get good advice, thanks to Adam we are all connected and with time u will get lots of good advise.
    The fact that you are steroid sensitive is a good thing, if Prednisone did the trick you can try Entacort, it is not a systemic steroid, works only in the colon not through out the entire system.
    Do not take any biological drugs, remicade, humira!!!! You are very u ongoing and side effects are horrible! !
    There is a new biological that was just approved, Entivo, although biological, it works only in the large intestine, but again, very new drug and side effects are not known in the long run. Be very smart and don’t rush w meds, do lots of research w parents.
    The main thing what you get in remission is diet and stress reduction, easier said than done, but as a US patient you can do it!!.
    Second, probiotics, very important, find on this forum names and results and start asap, antioxidants are important as well. We r all different and what works for one doesn’t work for the other.
    Diet, or did I mention that already? !
    Now the No Foods,.
    Dairy,Coffee, Soda, Fiber During flare, NO Raw fruits, Bald Diet AND Lots Of rest.
    Get a second and third opinion before you decide on biological drugs.
    I’m a 17 year UC veteran and have been on everything from prednisone to Asacol to Lialda to colazol, and it’s a merry go round, god days bad days, weeks, month, accidents, so I’m looking into surgery.
    Again, sometimes w pregnancy, UC goes away and we live like we never had it, then it may or may not comeback w a vengeance. ..
    Happened to me.
    I wish you luck and do not give up hope for some meds other than biological to work for you.:)

  3. Nicole September 7, 2014 at 1:55 pm #

    Christiana, I say go for it! Your story is very similiar to my own, I struggled with my UC now diagnosed and Chrones with flares for years it seemed. I struggled with cdiff for over a year. I took very expenisive medications and nothing would work. After a year of fighting it on top the other symptoms I had a fecal transplant. My twin sister was my donor. I was mortified by the whole experience, which really is nothing after using the restroom 20 + times a day. So about 2 mo after the transplant and going into my second year of humira injections I was feeling awesome! Using the restroom 2-3 times a day NO waking up at night and zero blood. I put on more weight than I wanted to, but hey I felt great. Now I am even better. I am only taking humira injections and a reflux medication I have stopped all other meds and saving $$$! I use the restroom in the am like clock work and that is pretty much it. I am also 4 months pregnant and have never felt better. I still take my injections every other week and Dr. assures me that it is safe for me and baby. So my advise is…… it cannot get any worse, do it! ; ) Oh yeah, my hair is also finally coming back in thick and healthy!

  4. Christiana
    Christiana September 7, 2014 at 2:04 pm #

    Hey everyone, it’s Christiana. Since submitting my story, my insurance company has rejected my claim for humira, stating that I haven’t tried everything yet. So my GE decided to put me on 100 mg of imuran/day instead. So far it seems to have shown some very slight improvements, but nothing I’m not going to get my hopes up yet.
    Thanks for all your input!
    Christiana

  5. Rachel September 7, 2014 at 8:52 pm #

    Hi Christiana, It sounds like you have been through a lot. I know it is a tough decision to make. For I had to make the decision to start on humira last year. I started taking humira in May of 2013 and it has put me in remission. I was diagnosed with UC in 2010. Before that I had C-diff in 2008 which was so bad I almost lost my colon. It took me a long time just to recover from that. I also got C-diff a few more times years later. Today I am in remission and take humira, Lialda, VSL #3( probiotic) and calcium and vitamin D plus a multivitamin. Before deciding to start on humira I tried 6 MP, was often on a prednisone taper, Lialda, and vitamins. I also had to take vancomycin for C-diff. I know humira does not work for everyone but if your doctor recommends it and you have tried several other medications without relief then I would say go for it. It was the best decision I made for myself. I was able to get in remission which has allowed me to get my life back to where I can function. I wish you the best and hope you feel better soon. I hope you have a positive result with humira if you do decide to start it. Take care!

  6. Tom
    Tom September 8, 2014 at 6:48 am #

    Hey Christina

    Imuran does take up to 3 months to work so bear that in mind.

    As somebody who has not responded to most medications and refused the big Remicade and then opted for surgery, I urge you to be very mindful that it’s your decision on how to treat your own autoimmune disease and certainly approach the SCD and other diet modifications with the understanding that you tend to only hear about success stories with the SCD and not the failures.

    By all means try the SCD along with continuing your medical treatment as you have nothing to lose. Well apart from maybe the short chain fatty acids your colon needs which are excluded in that diet..

  7. Barb September 8, 2014 at 7:24 am #

    Christina,

    I just started remicade last November and seems to be working. Keeping fingers crossed that it continues. I say give a shot and see what happens. Good Luck.

    Keep us posted!

    Barb

  8. Shannon September 20, 2014 at 11:31 pm #

    I just wanted to say thank you for posting n I hope by now you have found something out your story sounds just like mine this shit sucks n I just wanna meet a girl that has crohns or uc so they know what I go through n we can help each other i know that sounds selfish but seems like nobody else (gets it) n I’m always explaining everything over an over, anyway idk I’m just ranting sorry hope you feel better I know it hurts and being sick all the time can get you down I hope one day they find a cure for all us!!!!! Sorry for bad grammar I’m on my phone

    • Christiana
      Christiana September 21, 2014 at 2:29 pm #

      Hi! It’s nice to know I’m not alone! I haven’t really experienced anyone not being understanding of my UC. I only tell people if I think it’s relevant that they know (so probably less than 10 people) and they’ve always been accepting, albeit they don’t truly know what it’s like. I’ve started imuran recently and my body is not taking to it too kindly, but it supposedly takes a few months to kick in so fingers crossed!

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