Join the iHaveUC.com FREE email list, and join over 15,000 other subscribers managing their lives with ulcerative colitis

A Girl and Her Gut – A Tumultuous Affair

Andrea MMeet Andrea:

I’m a SF Bay Area native and I was healthy until my my late 20s, I was a healthy. In 2006, I developed symptoms. I come from a line of people who think: “Doctor, I don’t need no stinking doctor.” So, it took me a couple of months to go see a gastroenterologist. I was diagnosed with mild U.C. I beat down the initial flare quickly. For years, I would only take Asacol when I had a flare – which was rare and mild. But then things changed, as I note below.

Some more about her:

I like hiking, kayaking, reading and traveling (although I don’t get to travel as much as I’d like). I love my neck of the woods and have never felt like I need to move anywhere, but I do love seeing other places.

As an attorney and that carries a lot of stress which can be hard to manage and I certainly see it affect my symptoms. I’m working on meditating to help with that, but I think I have mindfulness A.D.D. :)

I’m a huge animal fan and I’d save all the rescues if I had the room (and the dough).

Andrea’s Symptoms Story:

Since late 2013, I’ve had severe symptoms ( 10+ bowel movements daily, 60 mg Prednisone daily, Asacol, and Hydrocortisone) off and on. I’ve been put on Prednisone many times in the last year with no result unless it was paired with an antibiotic (even though I tested negative for underlying infections).

By early 2014, I was at 20+ bowel movements daily with severe cramping, bleeding, weight loss, and at 100 mg of Prednisone daily plus other meds. We did another colonoscopy. Aside from “severe inflammation”, there was nothing. Still, my doctor put me on antibiotics, which kicked the symptoms while I was on them, but they came back in June (queue Poltergeist quote). We added Prednisone and antibiotics and the symptoms abated more slowly. But then in Nov. 2014, it came back again and the duo did nothing.

In January 2015, after a Sigmoidoscopy, I tested positive for C.Diff (no clue where I got it from and I’m pretty fastidious about hand washing and the like) and was put on Vancomycin (after Metronidazle did nothing) that the symptoms abated. I have been off the Vancomycin for a couple of weeks and was starting to taper off Prednisone (down to 40mg/day from 60mg/day), but it seems like suddenly symptoms are starting up again. I had to push my doctor to give me a follow up test for C.Diff (happening this week) as she just wanted to put me on immune suppressants and/or admit me to the hospital for intravenous steroids. I have to admit, I’m getting a bit frustrated with the lack of a wider vision by my doctor on control of and options for my UC and treating the C.Diff. I’ve started to look for a second doctor, but it’s intimidating trying to wade through information on good options.

Andrea’s Story:

I’ve been lucky. UC didn’t impact my life much until the last 1.5 years, which have been difficult. I always try to keep positive and not let it stop me from living. But, there were times I was tied to the bathroom and sometimes depressed and feeling hopeless. The fatigue was also rough because it made even small tasks or events seem much harder. My friends and family, and even co-workers, were wonderfully supportive. They made, and continue to make, a huge difference.

That the symptoms are returning after Vancomycin scares me, I’m not gonna lie. I’m also having a hard time getting my doctor to discuss alternative approaches (e.g., FMT) and think I may need to change doctors to one that looks at the treating the cause as much as the symptoms, particularly as mine has been out of town more often (which would be fine if there was a back up) and often takes a while to respond (but in all fairness, she will call back at some point even if it’s 7 in evening).

That said, this illness has pushed me and taught me a couple of things:

1) Be your own advocate. I may still choose an immune suppressant, but being pushy forced my doctor to keep testing. If I’d just taken Remicade, the C.Diff would not have been treated and would have caused my body more trauma.

2) Be open about U.C. Doing this provides me a stronger support group (family and friends are vital, particularly when during a flare). I’ve always covered up the impact of my flares from my Dad. But, last time, I didn’t have the energy. It was a good thing. It was the first time he saw what U.C. (and C.Diff) does to me. Now, he gets what “I don’t feel well” means and helps me when I’m having issues. It’s much easier to participate and not feel as weighted down when you have people around you who “get it.”

3) It’s a journey to find what works and discovering our strengths in managing U.C. And it does take strength. If you only get one thing done a day during an active flare; that takes strength. Be proud of yourselves for doing what you do every day.

Medications and Supplements She’s Involved with:

Asacol 800 mg 3 x/day
Prednisone 40mg/day
Probiotic (90 billion) 1 daily
Intestinew – 1 dose daily
Vitamin D – 1 dose daily
Calcium – 1 dose daily (since Prednisone can impact bone density)
Cabbage Juice (although, I admit keeping up on making this and having it on hand isn’t my strong suit. If it were, I’d be drinking 2 cups daily)  (Cabbage Juices on Amazon-click here)

Not using Canasa or hydrocortisone suppository although I have them since they didn’t seem to do anything during my flare.

Good health to you all,

Andrea

submitted in the colitis venting area




c-diff, cabbage juice, Vancomycin

10 Responses to A Girl and Her Gut – A Tumultuous Affair

  1. Alyssa February 21, 2015 at 2:26 pm #

    I just want you to know that I am with you on all of the above. And that you aren’t alone. I’ve now been feeling with my UC for a year and a half with no real remission. After two colonoscopys and two GI doctor I am now heading down to Stanford in 2 weeks. I’ve definitely had to be my own advocate. If you don’t feel right in your gut about your doctor move on. I could never get any answer or call back from my office. And I am in a moderate flare and wasn’t doing well. Anyways… Keep pushing through. I wish you the best.

    • Andrea M
      Andrea February 28, 2015 at 4:18 pm #

      Alyssa,

      Thank you for your support. I’m sorry to read that you too have had such a long haul with active symptoms. Fingers crossed that the GI doctor at Stanford comes up with a plan that works for you.

      I haven’t changed doctors yet, but have started researching GI’s in the SF Bay Area and will hopefully find one that is more in line with what I’m looking for.

      Take care!

  2. Adam
    Adam February 22, 2015 at 4:15 am #

    Hey Andrea,

    Thank you so much for sharing your story. And thank you SOOO much for pointing out the three points you mentioned above. I right behind you on all that thinking too, and probably alot of others feeling the same.

    If you are still thinking about a doctor change up, or just want to hear what some others are thinking, please take a moment and check out the doctor review’s page. It has doctor reviews from UC’ers all over the world, and after just checking the page a second ago, there’s two listed in San Francisco (Bay Area). You can check the reviews, and see what the UC’ers said, and maybe something might sound interesting. here’s that link:

    http://www.ihaveuc.com/find-a-doctor-near-you/

    Best of luck to you Andrea, and don’t sweat the whole “where did the C-diff come from..?” question. It happens like that to quite a bit of us UC’ers. Even if we had no recently/previous antibiotic use, weren’t in hospitals…etc…. I myself came down with C-diff about a month after my initial diagnosis (which was also post colonoscopy) and it creeped me the heck out. Especially after I was just started to understand how to pronouce the words “ulcerative colitis…” In doing some reading over the years, it turns out that people with active UC are more prone to c-diff, and the answer might just be as simple as that.

    Stay positive, and don’t let work drive you too crazy:)

    -Adam

    • Andrea M
      Andrea February 28, 2015 at 4:21 pm #

      Adam,

      Thank you for starting this site. You and the others that post here are the reason I wasn’t a chicken and finally posted my story.

      Thanks for the link to information on GI doctors and for the sense of perspective on the C.Dif stuff – good news post antibiotic test came back negative and symptoms are still at bay (although I’m still on a decent amount of Prednisone and tapering).

      Again, what you’ve done here is great!

      Andrea

  3. Lynn Wege February 22, 2015 at 7:46 am #

    Hi Andrea – Yes, check out the GI doctor reviews on this site. Have gone through about 30+ GI doctors to np and everything in between and found a great GI doctor locally. One that was listed didn’t work but another one on the list did. This guy is with me on diet and supplements anything that will help. Good luck to you. This is an awesome site, we are here for you.

    • Andrea M
      Andrea February 28, 2015 at 4:23 pm #

      Lynn,

      Thank you for support and information on your experience with doctors. I’m so glad my Internet searching lead me to this website. So many incredible stories and information.

      Cheers,

      Andrea

  4. Daniel March 16, 2015 at 6:56 pm #

    Hello Andrea and all,

    Being a veteran I am naturally distrustful of doctors and so have gone the self treatment method.

    After a toxic megacolon via severeC-Diff infection, I have finally found relief and quite possibly a cure. The problem is low stomach acid. When we do not have enough Hydrocloric acid (HCL) our food cannot be digested properly, and harmful bacteria and parasites that would normally be killed are allowed to grow and reproduce and ultimately out number the good bacteria. This creates the inflammatory response in the body.

    Betaine is needed to make HCL. And Oregano oil will kill C-Diff and other harmful bacteria. Can be bought at any health food store. Google for more info.

    These three things by the grace of God (a lot of prayer ) have saved me from going to the hospital where the doctors would in all likelihood have tried to remove my colon. ( my kidneys began to give major problem I pushed major fluids)

    Oregano is well known to be a very effective anti-biotic.

    Hope this long story short can help some else.

    Btw I do not advocate not going to the doctor or hospital if you find yourself in a similar position. Whether or not you choose to be treated by a doctor is your own responsibility to listen to my advice (or anyone else’s ) could endanger your life.

    In my case I researched the protocol the doctors would use for severe C-Diff (IV fluids and anti-biotics) and chose to treat my self instead.

    • Andrea M
      Andrea May 4, 2015 at 7:42 pm #

      Daniel,

      This is great information. I stumbled upon Oregano Oil because, during my C.Diff treatment, I also developed a bad cold and a friend recommended taking it. Given my UC, I’ve just continued with the regiment now that the C.Diff is gone. I hadn’t heard of the Betaine and am going to look into that as well.

      I’m glad that you were able to avoid having your colon removed and beat the C.Diff back. There was recently an episode on HBO’s Vice that discussed bacterial resistance to antibiotics and how we, as a society, are running out of antibiotic options. An example they gave was a gentleman who contracted C.Diff, developed Toxic Mega Colon, and ended up having to have his colon removed. I have to say, I was glad this episode wasn’t out when I was going through it because it would have scared me more than I already was. I also felt very lucky that I was able to avoid the last resort options. It’s an interesting episode if you get the chance to check it out.

      I hope that your kidneys are doing better and you are now healthy overall.

      I will keep you in my thoughts.

      Thank you, also, for your service.

      Best,

      Andrea

  5. Pawel March 31, 2015 at 5:57 pm #

    Hi Andrea,

    Make sure you’re taking an increased amount of calcium because prednisone destroys our bones quite a bit…I was recommended 3 times a day 500mg. Hang in there…I’m in a 2 year flare with short breaks while on the Devils medicone aka prednisone. Haha

    Pawel

  6. Andrea M
    Andrea May 4, 2015 at 7:34 pm #

    Pawel,

    I’m sorry for the delay in reply. Thank you very much for the tip. I’ve been very diligent with the supplements for bone health because I’ve read so many comments on joint and bone issues after Prednisone usage (love your nickname for this stuff). My flare is gone, but not because of the Prednisone. I was diagnosed with C.Diff and the Vancomycin knocked that out.

    I hope that your flare has subsided, having struggled for a year and half, I have an idea of what you are going/went through. I wish I had some information that could help you as well, but nothing I have to offer is different from the plethora of information on this site.

    You are in my thoughts.

    Be well.

    Andrea

Leave a Reply