ulcerative colitis ebook

Battling Colitis from the Buckeye State!

Amanda the buckeye with UCMeet Amanda:

I am 24 years old and diagnosed with UC as of February 2013, which is when I had my first colonoscopy. My symptoms started in Spring 2012.

Some more about me:

Currently, I’m an Office Specialist at an Internal Medicine office. I volunteer my time by serving as the Volunteer Coordinator for the local animal shelter. I have a Bachelor’s degree in English with a concentration in writing and a minor in Spanish, which I earned at the University of Toledo (go Rockets!).

In my free time I like to stay active. I have a horse named Chester who I compete on and also enjoy trail riding. I live on the edge of a small town near Lake Erie and enjoy boating, biking, and long walks on the beach :) I love to spend time with my family and boyfriend, and I always have time for a good book or movie marathon. I absolutely love to travel but I can also play the homebody role just as well.

Symptoms I’m dealing with:

‘What symptoms don’t I have?’ would be a better question!! Cramping, diarrhea, mucus, and lots of bleeding. I had a polyp removed during my colonoscopy. I will go through periods of uncomfortable/painful bloating and constipation (only passing small mucousy, bloody movements) and then I will have days where I feel like I’m living in the bathroom emptying everything out.

Battling Colitis from the Buckeye State

At first I was in denial about having UC, but then I realized that it was just not going to go away. I finally caved into seeing a doctor after what was just an absolutely violent flare that included bloody diarrhea so bad and unrelenting I slept in the bathroom and was vomiting from the abdominal pain. My fatigue had reached the point that I was sleeping in my car on break at work. I have been researching a lot lately and am very happy to have come across this site.

Unfortunately, I have only seen my doctor twice. The first appointment I had with a GI, I was referred to another GI who did my colonoscopy immediately. She then met with me for a follow up to discuss her suspicions of UC and how we would proceed. She gave me a lot of resources and a prescription for Lialda and I was to return in 3 months. Unfortunately, I was laid off and had to cancel my follow up as it fell on the exact start date of my new job :( I was unable to be rescheduled until late August and I am very much looking forward to that appointment. She was very informative, listened and answered questions completely, and her course of action is essentially trying to find the mildest cocktail of medications/treatment that will keep me in between flares as long as possible.

I believe I have been in a constant flare for about a year and half now. The severity varies greatly, but it has been that long since things have been normal.

My mom is the most supportive of me. She has come to all my appointments and checks up on how I am doing every day. I have only told my boyfriend that I have an autoimmune disorder that makes me sleepy, achey, and affects my intestines. He is VERY supportive and concerned, but I just don’t have the guts to really tell him everything. (pun not intended)

I’m most concerned about colon cancer because my great grandma died from this and my grandma has had many bowel issues (obstructions,polyps,tumors,etc) throughout her life. I also am not willing to take prednisone or any other steroids, so I am worried what the next step will be for me.

Medications:

Lialda- took this for 30 days and did not notice much improvement but plan to try another trial again soon now that my new insurance has kicked in

Metamucil- Just started this days ago and am seeing some improvement with more solid stool

written by Amanda

submitted in the colitis venting area





11 Responses to “Battling Colitis from the Buckeye State!”

  1. Kelly TraverJuly 24, 2013 at 1:16 pm #

    Hi Amanda! I am 25 and also from the Toledo area! I have been battling my UC since I was 19 and am writing you this as I am prepping for another colonoscopy (fun).

    I definitely understand and share many of your same difficulties. I hope things begin to turn around for you! A couple pieces of advice from a few years of dealing with this.
    1.) find a doctor that you trust and can get ahold of easily (nothing worse than battling phone tag with a doctor while battling a flare)
    2.) talk to your friends and family (even your boyfriend) it’s an amazing weight lifted when you can just vent and tell them how you’re feeling. It took me years, and I I wish I was more open. My best friend recently went to the doctor with me, and she was amazing. (She took notes so I could listen and made sure the doctor was understood my needs.)
    3.) diet IS a major factor! Find what works for you

    I hope you find some of this helpful :)

    Kelly

  2. MeganJuly 24, 2013 at 2:37 pm #

    Hey Amanda I am also a buckeye with colitis. I am from the Cincinnati area and have been battling UC for 2 years. I have yet to meet another person with UC so I’m glad to know I’m not alone over here!!

  3. bevJuly 24, 2013 at 2:54 pm #

    Hi Amanda, and welcome

    First…get on a GOOD probiotic…you must replace your good gut and colon bacteria. I take ULTIMATE FLORA CRITICAL CARE by RENEWLIFE. I swear by this, now, even though I never believed in probiotics before. You must take it on a completely empty stomach, and then not eat for at least half an hour.

    Second, take fermented L-glutamine…which will actually HEAL the mucosa of the colon, thus the ulcers. This should also be taken on an empty stomach. I take the powdered form, which I mix in a teaspoon or so of juice, for taste. You can also get it in capsule.

    I was on asacol and lialda for 14 years straight, and it never did really put me into remission. At the end, I was so sick from being on the highest dose, that everything was just going straight through me. Cramping, gas, bloating, severe bleeding, urgency, and terrible nausea (that was the worst symptom for me). I decided to try the probiotic, and I shit you not…within days, I was feeling better…symptom by symptom started to disappear…everything except the bleeding. That’s when I added the L-glutamine, and within days, the bleeding was gone! I just stopped taking the meds because they were actually making things worse instead of better, only I didn’t really know that! The doctor said it was the UC that was making me so sick, not the meds…hah. Not true.

    The problem with UC meds is that they all eventually stop working, mainly because the do not treat the actual cause…they are merely a Band-Aid and then the symptoms come back. Meds only seem to work for a little while, if at all. I totally hear you on the steroids. I would never take them either. Then, there are the biologics, the remicade, humira, and imuran to shut down your immune system! I would never take those either. How scary…

    I went the natural way, and it worked for me, It does not work for everyone, but I sometimes wonder if that is because they don’t take it correctly. It matters that you take probiotics on an empty stomach so that they can really do what they are supposed to do, to repopulate your good flora. Once you do that, you are on your way to remission! Add in the L-glutamine, and the ulcers will heal!

    This advice is priceless and no joke. I promise. It’s a lot less expensive than meds too!

    Cheers,
    Bev

  4. Buckeye Amanda
    AmandaJuly 24, 2013 at 3:46 pm #

    Hi Kelly!
    So far I do like my doctor a lot but I’m not a fan of how hard it is to get in to see her! It is good advice to discuss this with the people close to me… I will have to work on my courage. And diet is coming along slowly but surely. I know fried foods always leave me wishing I hadn’t indulged the next day and the same goes for dairy. Hope everything went okay with the colonoscopy and thanks for the advice!

    Hey Megan- Well that makes three of us Buckeyes already! I have never met someone around here who is battling the same demon so it does feel good to know we aren’t alone!

    Bev- Very intriguing advice! I am eager to try the more natural routes such as the ones you suggest because I have never been a fan of long term prescription therapy (for anything) if there are other options available. I like the idea of the probiotic. I’ve recently started adding Metamucil to my diet 4-5 days per week. I just take the powder in three little spoonfulls with a sip of water, and this has helped some with my diarrhea. The other symptoms are still alive and well, though, so I will most likely try out your suggestions soon.
    I just tried to fill my Lialda on my new prescription program and the copay was 350$ or something like 250$ with the prescription savings program- I think not!!!!!!! I am just going to start trying natural remedies and diet adjustments until I see my doctor again. And I agree on the immuno-supressants. My doctor went through the different levels of medication with me and she lost me at steroids let alone immuno-suppressants. No way Jose. :(

    • bevJuly 25, 2013 at 12:46 pm #

      I feel the very same Amanda…no steroids or immune suppressors…no way Jose is right!!

      I’d almost rather have my colon removed than to take dangerous drugs…

      :)

  5. MichelleJuly 24, 2013 at 7:14 pm #

    Hi Amanda,
    First of all, I am sorry to hear that you have joined us in the land of UC/Crohns, but it sounds like you have a great, positive attitude to see you through the tough times it presents. It also sounds like you have fantastic support network – including your specialist – to help you find the treatment that works best for you. Don’t be afraid of the cancer – fear gets us nowhere, instead, focus on making the most of life but make sure you don’t miss check ups or ignore a new symptom if it arises.
    If at any stage you move and change specialists, if they’re not working for you – find a new one. This is YOUR life and you deserve the best care you can access. Sometimes that is going to mean finding someone who will work with you and ditching someone who isn’t. (Took me two years to learn this and I suffered in the process).
    You have been brave to date in sharing what you have with your boyfriend. But can I suggest that perhaps you should find some information that gives a brief overview of UC and how it effects you and let him read it if you don’t feel comfortable explaining it verbally yourself? It really is important that those we are closest understand as best as possible what we are going through so that they can support us emotionally and physically at times, but also so that if things get bad for some reason, they have an idea of what is going on and how serious it may be. Again, a lesson I learned the hard way and it resulted in me being hospitalised twice in two months this year and critically ill last year in hospital (you’d think I would’ve learned it last year, but no, I’m a bit stubborn like that)!
    Unless those we love and who love us understand what is happening, they can’t truly help us.

    Good on you for refusing the steroids, stand by what you believe in. I wish I’d known more before I was put on them – I would’ve refused them too!
    I hope you find a solution quickly that works for you and allows you to get the best out of life.

    Michelle

  6. TimJuly 24, 2013 at 8:58 pm #

    Check out http://www.bravoprobiotic.com for UC

  7. JoannaJuly 24, 2013 at 9:06 pm #

    Hey girl! Im close to u in pennsylvania. Just wanna say that you will eventually find something that works- it just might take a long time. Im still struggling and ive had this disease since i was 17 (almost 24). You should probably be honest with your bf because he will find out eventually the nastiness of this disease! Its hard to hide from anyone you spend time with. I ended up on prednisone and i regret it every day. I gained forty lbs in two days and didnt lnow that was humanly possible! Definitely the hardest drug ive been on and ive taken all the immunosuppressants and biologics.

  8. SharonJuly 26, 2013 at 5:55 am #

    Hi Amanda! I have had UC for over 23 years. During the first 20 years I was on Prednisone maybe 5 times. 2 of those times I ended up in the hospital and ONLY the Prednisone broke my flare. I am not pushing steroids (that’s probably illegal anyway) but IF you ever need it, don’t be so afraid of the side effects that you jeopardize your health. I am very lucky that I don’t have the scary side effects from the steroids and maybe you will also be so lucky. Either way, for most people in a severe flare that is spiraling out of control, it is the one thing that can stop it in its tracks.

    BTW, I am currently drug free and have an arsenal of probiotics, L-glutemide, Astaxanthin, protein powder, and iron if needed. I had wine the last 2 nights (about a glass and a half) and feel great today. The only thing I try to avoid is fried food, cows milk, and too much processed food. It does get better.

    Sharon

  9. Buckeye Amanda
    AmandaAugust 2, 2013 at 12:12 pm #

    Thank you Michelle, Tim, Joanna, and Sharon!!

    I had a meeting today with my GI. She messaged me this week asking how I was doing. She was concerned that my appointment from April (3 month follow up from my colonoscopy) had been rescheduled all the way in August and she hadn’t noticed. I was painfully honest with her and she had me squeeze in an appoitment with her this morning at the beginning of the day.

    She is starting me on mesalmine 400mg delayed released capsule (3, 3 times per day) and Canasa mesalamine suppositories. (in place of the Lialda) She said that a lot of my inflamation was at the end of my colon so the pills will help deliver the anti-inflammatory to the system as a whole and the suppositories will target my problem area.

    She also had labs drawn today and I am looking forward to those results.

    We will see how this all works out!!

    • Tom FAugust 8, 2013 at 10:56 am #

      Amanda I am 26 and from Cleveland. I Graduated from Ohio State in 2008. I was a drafted by the Colorado Avalanche- NHL draft 2005- in the the 2nd round, and I was planning on signing with them after playing my sophomore year at OSU. That summer boom UC hit me like a ton of bricks i lost 60 pounds and was in the hospital for 40 days straight. UC destroyed me and my career as after losing 60 pounds i was never the same. No medicine worked for me at all. I went to Metro hospital first and went through about 4 GI doctors all of them were conceited ignorant asses. Finally through a family friend i was able to get in the children’s sections of Cleveland clinic . There they found i was Anemic from losing so much blood so they gave 2 blood transfusions (instantly had so much more energy) They also knew i had only had 2 options left to try. Surgery or Remicade . Remicade is a scary drug as some people do not react well and can have serious side effects. Remicade saved my life with just a few minor side effects, mostly rashes. Im glad your doctor took blood because if you have been sick for that long your blood levels have to be super low. If this doctor can’t find a medicine that helps you I would recommend going to cleveland clinic. Now a days I’m doing good except for when i eat certain things like to much dairy or lettuce. I have been to hell and back with this disease if if you ever, need some to talk to email me. Tom.J.F@live.com Also you shouldn’t hide that u have UC because you will be shocked how many people actually have UC or crohns, I never heard of crowns or UC before i was diagnosed now I I always meet people everywhere suffering from these diseases. and discuss it with them

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