Happy Colon

Gut Feelings

June 30 Update :)


It’s been over three months since I posted about my health! Last time, I talked about how I reached a point where I became more able to do things without planning them long before they happened, without needing to know that a bathroom would be available, without needing to save up energy before them and relax in the time after them. Now, I guess I am past that threshold, to an extent anyways. My symptoms have been fading away in the past few months, and I’ve gained weight, energy, and strength. I’m still not 100% in all of these categories, and my diet is still very limited, but progress has been made, and certainly, I’m also in a better state of mind.

A Summary of 2013 So Far

At the beginning of this year, I was 80 pounds, and my stools were all blood, no brown. I was using the bathroom maybe 15 times a day (mostly during the night) and was dealing with urgency and pain. I had been doing pretty well near the end of December, but on Christmas Eve, I woke up with a terrible fever and dizziness and went to the ER, and whatever it was that caused this episode also caused my symptoms to exponentially increase. Because of this, I finally began taking 6MP, a drug that I was on from September 2009 until October 2010, when I needed to get off of it in a hurry since it had caused me to have or at least amplified my symptoms of mono. At that time, I was in the hospital for two weeks, partly or largely because of this immunosuppressive drug, so I had good reason to avoid it for the rest of my life. However, the state of my colon became too precarious to not go back on it, since it had indeed done wonders for my colon at the time (well, wonders is stretching it since I did flare once while on it, but its overall help for my colon was pretty great).

Since being on 6MP, I’ve slowly but rather surely gotten better and better. 6MP generally does not act quickly, and it took months for me to see its whole potential, but I do attribute my huge improvement in health this year to this horrible/incredble/but horrible/but pretty great/but for the wrong reasons/but okay drug. Meh. I’ve also continued with the Chinese herbs and all of my natural supplements. At the beginning of this year, I’m not sure they were doing much; maybe they were keeping me from getting even worse than the low that I was at, but I needed more than what I was taking (unlike when I first began the herbs, when they were all I needed to heal from worse symptoms than I was having at this point). Something must have been different this time around, and while I do believe that the right herbs and/or supplements could have helped me, perhaps with the help of a lighter drug than 6MP, there wasn’t enough time for trial and error to find out which ones were the right ones, so 6MP presented itself as my best, or perhaps only choice.

My herb and supplement regimen, as well as my diet, has changed here and there since the beginning of the year. I’ve seen how certain herbs give me a boost, and I saw how one herb made me worse until I got off of it. I’ve seen how dropping a supplement made no difference in my symptoms, and I saw how dropping a prescription from my functional doctor made my symptoms worse, even though when I had started the prescription, I didn’t see an improvement. I saw how starting to eat some sweet potato seemed to be fine, but when I took a break from eating those every day, the bit of blood still in my stools nearly disappeared. The effects of changes in drugs, herbs, supplements, and diet are all much more noticeable when I’m doing better, and it’s so interesting to see what these effects are.

Things lately

I’m over 100 pounds now, so I’m stronger, look better, feel less self-conscious, and can fit into my clothes much better. (I’m wearing a size 0 pants size, but at least these aren’t baggy on me any more.)

I took a 6-week class at my university in May and June, which went really well. It was Mondays through Thursdays at 1:30. I stayed with my aunt in Boston during the week so I didn’t need to commute a long ways or sublet, and I went home for the weekends to relax. It was wonderful that I could come back from medical leave and be in school just part time and not have to worry about my living arrangements. Also, I forget this, but at the beginning of the semester I was using the bathroom a lot in the morning and was often using my hot water bottle, but by the end I was going just once in the morning and usually once later in the day and forgot I had a hot water bottle. By the end, I was working really hard, and staying late on campus, but I felt able to do these things, and happy to be at school. I successfully eased myself back into a life more similar to the one I used to have.

In the past week, I’ve done so much – had a day of errands, went to a friend’s graduation party (played badminton!), got up early nearly every day for different reasons, went to campus to work on a project from the fall semester (interrupted by my illness), saw a movie (in theaters – This is The End – hilarious and scary and too much and perfect, back and forth, and simultaneously), and relaxed at the end of the week by doing some organizing around the house. I did need these past two days to be home days, and did pass up a free outdoor dance party in Central Square, but all in all, it was a very busy week. The last time I did all of this in one week may have been two years ago, before this flare started.

I began this post saying how great it is to be able to be spontaneous, but it’s not just that; it’s also being able to plan, within reason. During my first medical leave, I kept on trying to plan for my return to school, which kept on getting pushed back. Now, I’m not trying as hard to plan – I’ve learned to be more adaptable, and to let things play out without deciding beforehand what will happen – but there are some things, in some form, that I really want to happen, and there are only certain windows of time when I would want to do them. So near the end of April, I had reached a point in my health where I felt pretty good – not able to take on a full time internship yet (co-ops are part of my engineering program) – but optimistic that I would continue to improve and be able to start one by July. So I sent out two inquiry letters, heard back from one company, and interviewed with them. Two weeks later, I accepted a co-op offer from them, not asking to work part time or explaining my recent health rollercoaster or even that I had UC. I just planned for good health, and fortunately, I calculated and believed right. So I start my internship tomorrow! I’ll be working with the LEED program (LEED is a certification that buildings can earn for sustainable design) at a mechanical engineering firm.

And here is a picture of myself at my friend’s graduation party, looking healthy, yes?



14 comments on “June 30 Update :)

  1. hornrims
    July 1, 2013

    Looking very healthy, yes! Wonderful blog post, Roxanne – thanks for sharing your journey through illness to this good, healthy place you’re at now. And best wishes on your internship; it sounds like an amazing opportunity! If you ever aim your sights in the future on interning in NH, you’d have a Portsmouth connection and an open invitation at our house! Stay well and enjoy :)

    • Rox
      July 3, 2013

      Thank you, Kim! I’d love to visit, and maybe get a lesson in watercolors :)

  2. mineboom
    July 1, 2013

    You look great! And loved that your health ha improved dramatically–and the internship you me mentioned last time we talk!

    I love you and wish the best for your summer!
    Can’t wait for you to come visit across the country hopefully soon!

    • Rox
      July 3, 2013

      Thanks Emily! I can’t wait to visit, either. I do see a trip to California in my near future…

  3. Elaine Meuse
    July 1, 2013

    Happy for you is an understatement!

    • Rox
      July 3, 2013

      Thanks Mumsies!

  4. Anonymous
    July 1, 2013

    So happy for you, Roxanne. Love you so much and always wishing the best for you!
    Love, Auntie Sandie

    • Rox
      July 3, 2013

      Thank you Auntie Sandie!

  5. Anonymous
    July 1, 2013

    That’s great news! Wishing you good luck on your internship and have a wonderful summer. You look fabulous!

    • Rox
      July 3, 2013

      Thanks! The internship is going great so far.

  6. Denise Perry
    July 3, 2013

    You look terrific! I’m so happy that you are continuing to feel better. I hope that you enjoy your internship!


    • Rox
      July 3, 2013

      Thank you Dee! I’m loving my internship so far.
      I haven’t gotten a chance to play Wizard again, but I really want to…

  7. Anonymous
    September 2, 2013

    Hi , so are you saying repairvite didn’t help you at all and that the magic started happening with 6MP?? could you also tell us what supplements you are taking to help heal your gut???

    • Rox
      September 2, 2013

      Repairvite did not help me when I tried it two years ago. I’ve had magic with Chinese herbs (I don’t know what all of them are, and see a Chinese herbalist for those), I’ve had magic with 6MP, and I’ve had magic with antibiotics. Sometimes the magic doesn’t last though. My diet plays a huge role, too; I’m gluten-free, dairy-free, and sugar-free, and while this flare is going on I have either avoided vegetables entirely or have only had certain ones, well-cooked. I’ve taken a lot of different supplements at different times and it’s hard to tell which ones have helped more than others. I know that probiotics have helped, but other than that I’m not sure. Oh and digestive enzymes seem to help with digestion.

      Most importantly, I keep track of what prescriptions/supplements I’m on and when I change the doses, I keep track of what I eat and also of potential sources of stress, and I keep track of my symptoms. This way, I can figure out patterns and reasons for changes in my symptoms and get to know my body better.

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This entry was posted on June 30, 2013 by in Health/Life Update and tagged , , , .

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