Trying to Hold Me Down

Introduction:

My name is Katherine, I’m 28 years old and was diagnosed Oct. 2012 by a sigmoidoscopy test. I was having a “flare up” at the time so I had to wait until March 2013 to have my colonoscopy. In that time I was on 60mg of Predinose and had every side effect possible and just miserable. I stopped taking the steroids April and then they put me on Mercaptopurine and got horribly sick so they took me off. Im now been gluten free for the past two weeks and was feeling amazing until these last couple days been going to the bathroom non stop again. Hoping it will not be another flare up because the GI MD wants me to go on the injections and I really do not want to do that.

Some more about me:

I’m a very nice and hard working person, I have an amazing husband and daughter. I love playing indoor soccer and being active.

Symptoms:

Currently on the asacol, probiotics and being gluten free. In the last day or so just started having loose bowls and going all day long again

Trying to Hold Me Down

UC has changed my life horribly…I got the first symptoms back in July 2012 when my daughter was almost a year old. My regular MD didn’t think it was anything and sent me to get a sigmoidoscopy and they could tell what it was right away. I did not know how severe it was and started taking the medications and following the doctors advice until Dec was really sick day after Christmas was hospitalized and they started me on the steroids. I felt great on those for awhile until all the side effects started. I swelled up so much people did not recognize me. I was in pain all over and could never sleep. Finally tapered of them in April.

I don’t mind the MD checking me all the time

but hate the pre-op of drinking the nasty drinks…

those are so gross!!

My family has been amazing and all agree to try and be off medications. Especially seeing all the side effects that they have caused on me. I feel like I’m missing out on so much with my family since I never have energy or feel well to do that much anymore. I really do not want to be on medications or injections…trying the gluten free diet first and my GI MD is pissed I wont go on the injections.I just wish there was more out there besides doctors just pushing medication in your face, I feel horrible on or off of them. I have heard horrible stories about the injections and they terrify me. If I get every other side effect I’m sure I will get everything from those as well. I would like to hear more about surgery and the injections. Or if the diet has really worked for people and recipes that are good and easy

written by Katherine

submitted in the colitis venting area




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5 Responses to Trying to Hold Me Down

  1. K April 23, 2013 at 3:49 pm #

    Katherine, you asked about surgery.
    I had uc for a year or two in the 1970s, and then it was correctly diagnosed. Three days later the colon perforated, so it was taken out that afternoon. I had a Brooke ileostomy. (Today many people have one or two more surgeries and get a jpouch.)
    The upside about an ileostomy, at least for me, is no meds, no pain, no urgency and no diet.
    The downside is living with “a bag” and having to empty it 6 or more times a day and change it (for me) every 4th day. And someimtes the seal degrades and it leaks and one has to do a quick change, but fortunately that seldom happens to me. And since I have had it for over half my life now, it just “is.”
    There is a national ostomy support group with many local chapters. Perhaps you could find some people who have an ileostomy to chat with.

  2. PeterNZ April 23, 2013 at 3:55 pm #

    Yo,
    I too was in the same boat and have been gluten free for about 2 years with good results. I still have flares that require prednisone to control but overall am much better.
    I recall getting worse again before getting better. I’d suggest you eliminate all meat also if you haven’t already and see how you get on then. Seems a bit tricky for a month or so but then you roll with it easy as and you wonder why you ever ate it to begin with.
    Good luck,
    Peter

  3. Gail April 23, 2013 at 7:53 pm #

    Hi Katherine,
    Definitely continue gluten free as well as eliminating other foods that are commonly a problem, like dairy. The tricky part with gluten is that it is so often hidden, so it means reading labels all the time and educating yourself on possible gluten sources. Yeast extract is used as a flavour enhancer in a lot of foods and can be problematic for a lot of people. Of course, the best thing to do is prepare your own food with simple, natural ingredients but that’s not always easy. A really good cookbook I found is “You Won’t Believe It’s Gluten Free” by Roben Ryberg and also “The UnDiet” by Meghan Telpner. Meghan has a website meghantelpner.com. There in her blog, under interviews, “How Meghan Sustains Her Crohn’s Remission, you can see an interview where she talks briefly about her Crohn’s diagnosis (and the interviewer, Levi, from On The Regular, mentions that he had/has colitis). Also, follow Bev’s routine, as to how she has kept herself off all meds and has maintained remission. I’m sure she’ll chime in soon, or just read back through recent posts to find hers. Best of luck to you.
    Gail

  4. UC Family Boy
    Uc family boy April 24, 2013 at 1:29 am #

    Hi Katherine,

    Diet is about sooo much more than it helping with your symptoms although we all could say how great cut them back can be.
    I was diagnosed about 13/14months ago with ongoing mild symptoms prior to that.
    It has been a struggle for sure, a lot of my past life for now has gone due to UC. But I will be back, and like the rest of us.
    More recent research has started to observe bulking up the mucus layer with things like L-Theronine, Phosphatidylcholine and helping the healing with L Gutamine. There has been some very encouraging results.

    Also something I am learning about currently is about the brain gut axis. This bidirectional relation is key towards homeasosis. Further reading about this area brought me on towards again how SCFAs are so important for the messages they create between the gut and our brain. So on a more fundamental level, Yes food plays a big big part.

    So all foods are important, because they create a response from the gut and brain. It’s the brain that creates an inflammated response. The gut on the other hand feel if they are left to it, they can create healing. So one way is to switch off the immune system (but this leads to long term issues and even still healing can only occur with helping the gut the best way….food).

    Right now I am following what I am learning, taking the right supplements and focusing on diet. Fish appears highly on my diet. But for me this isn’t just about UC. It is about the long term and not getting other immune diseases. Currently I am a bit freaked out because I am getting random hives, twitches and random bouts of mid back pains. I got a bone density scan later this month. I am still actually waiting for a colonoscopy due to flaring when I was meant to have one. Though I want to have a peek after my protocol to see if want I am trying will work. Currently we know as much as the left side is UC.

    One thing I learnt is…this is a long term journey. Sucks on one hand but on another keeps me focused on what’s real.
    I urn for the day the doctors say what is the cause of UC and all the dots are finally put together. Until than diet, Meds and supplements and a positive attitude can help manage what we have

  5. J April 24, 2013 at 10:12 am #

    Hi Katherine,

    I am a 29 year old male and I had surgery about a month ago and have a Brooke ileostomy right now. I was diagnosed in January 2012 and have been on prednisone, asacol, mercaptopurine, remicade, various probiotics, other medications, and had tried changing my diet once or twice. The only thing that ever worked at all for me was prednisone, but since I couldn’t be on it long-term, I would be on prednisone one month and feel a little better, but then once I got off prednisone I just went back to having awful symptoms again. In March, I was feeling really, really bad, so I chose to go to the hospital hoping that they could get me feeling better quickly. Had another colonoscopy done, but they couldn’t even do the entire colonoscopy because my colitis was so severe that they were worried about my colon perforating. At the time, I was considering opting for surgery in April or because nothing was working and I was so sick all the time, but I ended up having semi-emergency surgery the very next day because they were worried about my colon perforating if I waited too much longer.

    Everybody may respond to medications, diets, and surgery differently, but for me, the surgery has been great so far. I often feel like I’m almost back to feeling 100 percent normal and a lot of times I completely forget that I have the ostomy bag on because I don’t even feel it.

    Hopefully you can find something that works for you and that you feel comfortable doing. I know some of the medications (like Remicade, for example) have some scary risks associated with them, even if those risks are rare. Best of luck to you.

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