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This Is My Life – Karen’s Experience

Intro:

I am a 38 year old woman with UC since about 2007. It’s been quite the ugly experience except for when I was pregnant. ALL of my symptoms went away during that time. Unfortunately, being pregnant for my whole life is not a great treatment option (Haha! We have to make light of a stinky situation, right?) I have been on Asacol since the beginning. I have recently started using Canasa. My doctor called me Tuesday evening and spoke with me for about 20 minutes about how I was doing on it. He also told me about some interesting studies about mice and fecal ingestion, reinforcing my hopes for fecal transplant options in the future. I guess they don’t do that locally at this time. We concluded that I would try the mesalamine enemas before moving forward with anything more systemic. Yesterday was day one. I have used these in tha past but honestly don’t recall whether they were very effective. I’ll keep you posted. I am married an d have a 3 year old daughter. Currently my “love” life is on hold until I can gain control of this disease. I bet some of you can relate.

Some more background:

I love working out at my gym, running in the state park, going out to eat, and hanging out witrh friends and family. The running can be dicey at times, but I have learned to live like the indians used to.. so to speak. I also run my own business.

Symptoms:

Currently I have some blood and urgency when I need to go. I find that staying hydrated helps a lot witth cramping and bloating. I also use a lot of natural remedies like Fennel Tea & Aloe Vera. I tried the LDN but all it did was give me vivid dreams.

Karen’s Story:

It’s been quite the ugly experience except for when I was pregnant. ALL of my symptoms went away during that time. Unfortunately, being pregnant for my whole life is not a great treatment option (Haha! We have to make light of a stinky situation, right?) I have been on Asacol since the beginning. I have recently started using Canasa. My doctor called me Tuesday evening and spoke with me for about 20 minutes about how I was doing on it. He also told me about some interesting studies about mice and fecal ingestion, reinforcing my hopes for fecal transplant options in the future. I guess they don’t do that locally at this time. We concluded that I would try the mesalamine enemas before moving forward with anything more systemic. Yesterday was day one. I have used these in the past but honestly don’t recall whether they were very effective. I’ll keep you posted. I am married and have a 3 year old daughter. Currently my “love” life is on hold until I can gain control of this disease. I bet some of you can relate. My husband is understanding and my family are supportive. I don’t think they really get it though the fact that it can interrupt life so much. I don’t mind the doctor appointments much. He just talks to me and checks out my vitals. I am most concerned about having to live like this forever. I also fear taking a medication that can give me long term issues. It seems that Accutane may have been what caused my UC. I got it just after taking it for a few months or so.

I would love to hear more from all of you about what works for you.

Also, any remedies you have tried that are natural.

Medications:

Asacol, mesalamine enemas

written by Karen R

submitted in the colitis venting area




11 Responses to This Is My Life – Karen’s Experience

  1. Lindsay L
    Lindsay June 28, 2015 at 4:27 am #

    I’m sorry you’re struggling. I hope the new combination of medication works for you. I’m on a similar combination, and so far so good.
    I wanted to reach out to you, as I saw you mentioned you started getting symptoms of UC after taking Accutane. I started getting symtoms and then was dx with UC after 3 months of being on yaz. I think i had heard that accutane is part of the same class action suit as Yaz and Yazmine—-being linked to IBD is just one of the reasons the suit is active.

    I really hope you can have some pain and symptom relief soon. Keep fighting.

    :)

    • Karen June 29, 2015 at 9:17 am #

      Thanks Lundsay! It’s so sscary to think that these “cures” can really harm us instead! I appreciate your insight and experience. I love that we can all learn from and support each other here. Be well!

  2. Rachel June 28, 2015 at 10:38 am #

    Sorry you are not feeling well. I hope you get relief soon. I was diagnosed with UC in 2009. A few years after getting a severe case of C-diff that made me almost lose my colon. I have had really bad up and downs since. I have tried everything from mesalamine enemas, steroid enemas, 6 mp. Lialda. Prednisone and they all helped me for short periods of time but I could never get into remission. When it was finally safe for me to try humira I started taking it. It has been a few years now and it has helped me tremendously. I was able to have a second child and stay fairly stable during my pregnancy. I currently only have to take humira and Lialda. I also take a multivitamin, folic acid, calcium and vitamin D tablets, and VSL # 3 ( 2 tablets) it is a great probiotic to take if you have UC. I have been taking aloe Vera juice as well. My favorite is Aloe Life( Cherry Berry). I have tried the fennel tea but only when I had a flare and it helped a little. Also I have tried different diets like lactose free, gluten free but it didn’t work for me and today I can pretty much eat whatever I want. I hope you can find the right balance of meds and diet that work for you so that you can get in remission.

    • Karen June 29, 2015 at 9:20 am #

      Thanks Rachel! I also use aloe vera. I try to be as natural as possible and am scared to attempt the immuno drugs. I guess it may be on the radar eventually though. It’s great to hear that you’re doing well on tthem.. encouraging. I hope we can stay in touch and continue to share what works for us! :) No one else gets it…

  3. Marty Fed
    Marty June 28, 2015 at 7:47 pm #

    Hi Karen,

    I am doing well & going more & more natural every day to manage my UC. Down to 1 Asacol HD/day now; using l-glutamine, raw ACV, probiotics (greek yogurt, kefir, & now kimchi), raw honey, chia, cinnamon, a supplement containing boswellia, turmeric, pepper extract, & devil’s claw; I also avoid all junk, excess sugar, food colorings, try to limit gluten, etc.

    Hope this helps you – after my original diagnosis & treatment 2 yrs ago, I have never had a flare, & I attribute much of this to my diet & lifestyle (exercise often – running/walking & strength training).

    I run 2 businesses also – what type of business do you own?

    • Karen June 29, 2015 at 9:25 am #

      Hi Marty,
      Thanks for the input! I like that you are also into the natural cures. What do you think works thet best for you? What does the raw honey do? That’s a new one for me. I am also doing much less dairy and gluten but occassionally need to have fun too. I also workout at the gym and run. I can’t imagine life without doing so! I know it helps keep things “moving” more predictivley. I own an auto bodyshop. What about you?

  4. Marty Fed
    Marty June 30, 2015 at 4:38 pm #

    Hey Karen,

    I don’t know if there’s any one thing that works best for me – I think it’s all of the combined things that I’m doing that keep me from having any issues. Raw honey is very good for the body – just google “benefits of raw unfiltered honey” and you’ll see what I mean (if you can get some local raw honey I suggest you do so & have a spoon or two a day)!

    I hear you on the exercising (need to blast out 100 pushups tonight still – rained all day here, so no running today) – can’t do without it!

    Autobody shop owner – that’s awesome! I am the CEO of 2 practices: financial planning/advisory firm and a accounting/tax prep firm. Keeps me very busy, along with my wife & 3 children.

    • Karen July 1, 2015 at 9:12 am #

      I’ll try it! I also just got in “super enzymes” & glutathione and have devil’s claw on order. :)
      Good for you on the 2 businesses and 3 kids! Whew..you must be busy! NO time for flares! lol… Happy 4th weekend! I am off to the Cape with my daughter and hubby for some fun!

      • Marty Fed
        Marty July 1, 2015 at 10:42 am #

        Happy 4th to you & yours as well – enjoy the Cape!

  5. KE July 1, 2015 at 6:48 pm #

    Hi karen,
    You should get the book Breaking the Vicious Cycle about the SCD. It works for many people.

    • Karen July 2, 2015 at 12:07 pm #

      I have read it and have been doing very little milk and gluten. It has improved but still have urgency.

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