Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

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.

Leave a Reply